Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 15
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Readers are NOT being served by this article
People who come to this article because they find themselves suffering from most of the symptoms listed therein generally find that the established medical community have been of no help whatsoever in even defining their disorder, much less treating it. As of now there is no consensus amongst these experts as to how to define, quantify, identify, or treat CFS. The facts are that patients who go to their general practitioners and then are eventually referred to various specialist rarely if ever get any relief from these symptoms. Instead they find themselves marginalized and their veracity questioned.
This seems to me to be reason enough to NOT allow people who seems to have polarizing opinions favoring the POV of the established medical community to control this article. The summary deletion of any mention of the theories of those who practice "alternative medicine" is pure arrogance. Face it, established medicine does *not* have the answer to this and don't seem to be close to providing a workable treatment. Again, why are those in that corner controlling this article?
I decided to look at the history of another item which used to be ridiculed by these same people, that of St John's Wort. This is a typical undo edit by these same types of person: http://en.wikipedia.org/w/index.php?title=St_John's_wort&diff=388203266&oldid=6648735
If you look at the history of any of the former "alternative treatments" that are now acknowledged by the medical community as valid, you will see the same pattern of abusive and bullying edits from people who hide their POV behind the shield of "lack of conclusive studies".
Wikipedia is allowing these assholes to diminish the value that a reader might potentially find here by their POV edits. If every kernel of information in wikipedia had to stand up to the ridiculous standards that these people selectively apply to this article, then both the amounts of words and usefulness of wikipedia as a resource would be reduced by a fact of 1000.
Letting raging assholes control this article is like allowing Bernard Madoff to handle your company's 401k. Zilla1126 (talk) 02:38, 5 October 2010 (UTC)
- This fiery rhetoric isn't serving you at all, but I'll try to look past it. The question is, what's the alternative? Should statements go into the article just because somebody somewhere thinks they ought to be true? There has to be some criterion for what goes into the article, doesn't there? What do you think it should be? Looie496 (talk) 04:14, 5 October 2010 (UTC)
- So are you saying we should put in lots of info about things that are obviously ridiculous quackery that don't work and say these can be used as treatments? Do you think that is helpful to patients? The whole point of the wikipedia policies is so that that doesn't happen! I had a quick look at the St John's Wort article and it seems pretty balanced with no current edit wars. That would seem to be a good example of what wikipedia is all about!
- Also, if you look at the recent history, most of the 'raging ****s' (as you put it) appear to be on the patient side (I thought that was what you were talking about at first). But as Looie pointed out, that attitude isn't really helpful. --sciencewatcher (talk) 10:41, 5 October 2010 (UTC)
- Sciencewatcher, your comment violates the "pillar" of civility WP:NICE JustinReilly (talk) 00:16, 27 November 2011 (UTC)
+1 to zilla, I entirely agree with the sentiments of zilla, someone had to say it and Zilla made some very excellent points, sciencewatcher please stop being so condescending to new editors, there are many of us who agree with people like zilla and are glad when they speak up, dont try and shoot them down —Preceding unsigned comment added by 81.153.142.82 (talk) 00:43, 6 October 2010 (UTC)
+1 well said zilla I agree with much of the things that you said — Preceding unsigned comment added by IP 86.156.146.72 14:03, 6 October 2010 (UTC)
- To Zilla and the two IPs, I've had CFS on and off for 25 years, with the last 18 months out of the last 3 years quite frankly hell; I also that our governments and the funding of medical research is failing this patient community. But what on earth is this to do with Wikipedia or this article. There are rules (WP:MEDRS etc.) for the content of medical articles within WP and these are present for sound reasons. Wikipedia is not a SOAPBOX; it is an evidence based encyclopaedia. It tries to limit its content to verifiable facts and not theories or plausible (but as yet unproven) research. We are not trying to shoot down new editors. Many of us go out of our way to help you. However, we do ask you in return to read and understand the ground rules before contributing in earnest and perhaps it is quite reasonable when we get a little irritated if you can't be bothered. Even simple things like the request at the top of this posting form: "Please respect the talk page guidelines, and remember to sign your posts by typing four tildes (~~~~). " -- TerryE (talk) 16:43, 6 October 2010 (UTC)
- TerryE, there are plenty of lies in this article coming from Wessely and co-conspirators, so saying the editors here who insist on having only "facts" published here is untrue. JustinReilly (talk) 13:01, 26 November 2011 (UTC)
terryE its becuase people abuse the rules on these pages, the wiki rules get twisted to breaking point and the page isnt balanced, the page is rife with sneaky tactics and using obscure comibnations of rules to block things, some editors hold too much sway and run this place like its their own, like they are policing the page incase anyone puts up something that breaks their POV, also established editors bombard new editors with obscure wikipedia abbrevs and wiki policies that have multiple interpretations, the average man on the street has no idea what they mean and every edit either gets instant removal or ends in some warped twisted arguement of logic and ends up in absurd outcomes, theres loads of innacuracies on the page, I have watched the page for a long time and read the archives and each time someone tries to make it better they get shot down, its amazing how certain editors only ever turn up to agree with their buddies. some of the editors seem on 24 hours a day monitoring its as if they are more than one person, its absurd the level of control this page has over it
- Actually, YOU are the only person who is pushing their POV on this page and using sneaky tactics (logging on with different IPs and saying you are different people - that alone is a big violation of wikipedia rules). You have already been blocked twice in the last month, and I'm guessing you have also been permanently banned and that is why you won't get a username. Anyway, this whole discussion is a violation of WP:TALK so I won't be surprised if this entire thread gets deleted yet again. And if you keep causing problems this page will just get protected so you can't continue your silly shenanigans and accusations. --sciencewatcher (talk) 07:41, 7 October 2010 (UTC)
hi I am new to this page but I have noticed that sciencewatcher always claims that all IP's are the same person, I find that highly offensive acutally, he has no proof and just uses it to slander all IP's...sciencewatcher you need to take a step back from this page if you are just going to get so high and mighty towards every single IP editor, this is wikipedia and its open to be edited by ALL...even lowly IP editors which you clearly hate86.130.61.173 (talk)
- Actually, when you make any wikipedia edit, a lot of other information is stored on wikipedia's servers (not just your IP), so it's pretty easy for an admin to tell whether multiple ips are actually the same person logging in from the same computer. --sciencewatcher (talk) 15:04, 7 October 2010 (UTC)
WRONG, I am a computer tech so I know exactly what is and isnt stored, you seem to think any IP from bt central must be the same person becuase I have seen you make that wild claim many times, lol if only you knew how totally wrong that concept is, THOUSANDS and THOUSANDS of people use bt central, so get over it. they are different people, accept that theres more than one person who wants this page to reflect reality86.130.61.173 (talk)
- @IPs, actually sw and I have different views about the potential causes of CFS, but WP isn't a soapbox so this isn't much of a problem. It's the relevant WP:MEDRS that matters to the content here. If you can't find proper sources to support proposed edits, then you need to take that elsewhere (e.g. complain to your MP about the lack of government funding for CFS research). Please stick to the WP policies and guidelines in your posting. Thank-you. I think that we should end this topic; it's going round in circles and unsubstantiated accusation of POV pushing don't really help take anything forward. TerryE (talk) 19:51, 7 October 2010 (UTC)
There are characteristic laboratory abnormalities
"There are no characteristic laboratory abnormalities to diagnose CFS,[19] so testing is used to rule out other potential causes for symptoms.[14] When symptoms are attributable to certain other conditions, the diagnosis of CFS is excluded."
This statement is very misleading. While there aren't laboratory abnormalities to diagnose CFS, patients with CFS can present with a number of laboratory abnormalities that are very typical of CFS. There's a lot more to diagnosing CFS than just ruling out other conditions. This section needs to be rewritten and expanded. —Preceding unsigned comment added by 72.64.78.219 (talk) 03:12, 11 October 2010 (UTC)
- Well please find a medline review source and post it here so we can discuss it. The previous reference goes back to 1994 so if there is a newer better source great. Ward20 (talk) 05:35, 11 October 2010 (UTC)
I will help out here and suggest the following...these are only the tip of the iceberg though http://www.ncbi.nlm.nih.gov/pubmed/20032425
http://www.ncbi.nlm.nih.gov/pubmed/9790479
http://www.translational-medicine.com/content/8/1/1
there is also papers on cytokines and other markers which can be found out there...81.153.141.254 (talk) 21:35, 6 December 2010 (UTC)
- We cover this in the 'Immunological dysfunction' section of the pathophysiology article. I don't think this necessarily conflicts with the "There are no characteristic laboratory abnormalities to diagnose CFS" sentence. Studies have shown abnormalities in some patients, but I don't think they are not seen in all patients and that is why they are not used for diagnosis. Also some studies differ in their findings. See this review for example - their conclusion is "No consistent pattern of immunological abnormalities is identified". --sciencewatcher (talk) 22:39, 6 December 2010 (UTC)
- it needs to be MORE prominent on the MAIN cfs page....the average reader browsing the current wiki page will be mislead as to the nature of the illness as its currently very heavily behaviour/psychologically based, that needs to change 81.153.141.254 (talk) 23:24, 6 December 2010 (UTC)
- There are several potential biological markers which need further study, but it is not surprising that there aren't consistent abnormalities in all patients when the diagnostic criteria are all over the place and define heterogenous cohorts. The phrase "garbage in garbage out" really comes to mind right about now, along with "wastebasket diagnosis". The gross inadequacies of the main diagnostic criteria used and their poor application in research or clinical practice needs to be much more prominent in the lead as a fundamental disclaimer to the entire article. I have previously done edits on this and additional papers have been published, but this issue have since been mostly relegated to a few sentences at the bottom of a subarticle. - Tekaphor (TALK) 04:07, 9 December 2010 (UTC)
Canadian Consensus Definition
I recently made an edit to the Canadan Consensus definition (CCD) which was changed so I thought I'd bring it up on the discussion page as there is kind of a judgement call on what to include and/or how to phrase the entry.
The Canadian definition makes mandatory several symptoms which are optional in Fukuda, such as post-exertional malaise, sleep dysfunction, and neurological/cognitive manifestations. Sleep dysfunction was removed from the Wiki entry due to it being followed by an asterisk, with the asterisk pointing to the following- "There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS".
However the CCD summarizes the criteria with the following- "A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine, and immune manifestations; and adhere to item 7 (the illness will persist for at least 6 months)", which along with placing sleep dysfunction third on the list of criteria after fatigue and PEM, indicates that sleep dysfunction is rather important to the definition. I question whether because a 'small number' of patients don't have sleep dysfunction means that it should be taken out of the entry.
Just had a thought, perhaps we could just change the wording as it currently stands with the summary from the CCD?
"A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine, and immune manifestations; and the illness will persist for at least 6 months".
http://www.cfids-cab.org/MESA/me_overview.pdf —Preceding unsigned comment added by 74.51.82.163 (talk) 07:45, 18 October 2010 (UTC)
- Sorry, I didn't realise it was a 'small number' of patients. Even so, it is still not a 'necessary' criteria. But if you want to make changes, go ahead. I thought you just hadn't read the criteria properly, but it was actually me who hadn't read it correctly. --sciencewatcher (talk) 14:02, 18 October 2010 (UTC)
Well you're not far off in your assessment of me not reading it correctly; I made the change from memory and wasn't even aware of the asterisk! —Preceding unsigned comment added by 74.51.82.241 (talk) 23:03, 18 October 2010 (UTC)
First proof of enteroviruses causing CFS
This paper by Chia J, Chia A, Voeller M, Lee T, Chang, entitled Acute enterovirus infection followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and viral persistence., is tending to show a causal connection between enteroviruses and chronic fatigue syndrome. The previous published work of Dr John Chia has found strong association between persistent enterovirus infection in the body tissues and CFS, but as everybody knows, association does not necessarily imply causality. However, this latest paper from John Chia et al aims at demonstrating the elusive casual connection: it documents the onset of CFS as a sequelae of acute enterovirus infection in a number of studied patients (his research followed up patients admitted to hospital with acute enterovirus infection, to see how many would go on to get CFS afterwards).
Thus this latest publication, plus Chia's previous published work on the fact that interferon therapy will provide complete remission from enterovirally-associated CFS (albeit remission for just a year or two, before relapse occurs), is now providing good evidence that enterovirus can cause CFS.
This is probably the first time that a causal connection from viral infection to CFS has been demonstrated.
Even with the fanfare going to XMRV/MLV at the moment, the XMRV research, though extremely exciting, has not yet proven a causal connection to CFS. So this CFS article should reflect that a causal connection to enterovirus is emerging. Drgao (talk) 02:59, 14 December 2010 (UTC)
- It should be added that this study by Dr Chia does not provide 100% proof of a causal connection, to the formal standards required in science. To prove a causal connection between pathogen and disease, you would have to inoculate the pathogen in question into in a randomly selected set of healthy individuals, and observe how many go on to develop CFS. In this study, the patient cohort was selected by the fact they had all caught an acute enterovirus infection. So they are not a pure random selection. Nevertheless, three patients in this cohort did go on to develop CFS. I am not aware of any other longitudinal study like this, that follows a cohort infected with a given pathogen to observe how may go on to get CFS. That alone makes it fascinating. Drgao (talk) 19:02, 23 December 2010 (UTC)
Newcastle NHS reference
I've removed the recent addition of the reference to the Newcastle NHS study, as it doesn't really seem to apply well to CFS. Specifically, the abstract puts that 47% in the context of those misdiagnosed with CFS. "Of the 40% of patients subsequently found not to have CFS the most common diagnosis was fatigue associated with a chronic disease (47% of all alternative diagnoses)...". The 47% must be taken in that context, which was left out. If anything, the 40% rate of misdiagnosis with the Fukuda criteria is probably the more relevant figure to the article, though since this represents only one year out of many for the service, it could represent an anomaly or a change in referral patterns. – RobinHood70 talk 23:40, 16 December 2010 (UTC)
- Here is the full text. This study demonstrates how poorly Fukuda CFS criteria is typically applied in clinical practice within the UK. 40% of the patient sample referred to a CFS clinic were erroneously assumed to have CFS when most of these actually had exclusionary conditions such as chronic disease (eg mostly metabolic syndrome, neurological disorder, connective tissue disorder/autoimmune disease) and primary sleep disorder. This fact deserves to go somewhere in the article. If inadequate screening is common in the NHS, a large proportion of patients without CFS would presumably end up having CBT/GET forced onto them along with the usual unfounded speculations about their symptoms and "psychosocial barriers" while denied further testing because of the CFS label. - Tekaphor (TALK) 06:23, 17 December 2010 (UTC)
- What type of 'neurological disorder' and 'connective tissue disorder/autoimmune disease' did they actually have, and how were they diagnosed? The paper is quite vague about this and I'm a bit doubtful about it. --sciencewatcher (talk) 15:47, 17 December 2010 (UTC)
- As Fukuda is a diagnosis of exclusion the referral by the GP is all important- generally a GP would refer having being satisifed that any organic explanation has been excluded. However the service has developed a rigorous understanding of the biology underpinning the pathogenesis of fatigue and importantly how to treat it. So patients who fit the Fukuda criteria are excluded from a diagnosis of CFS when ANY organic abnormality is found. Most clinics do not offer the level of investigation Newcastle does, especially as it has worked with the mitochondrial service (neurological disorders), offers extensive autonomic assessment, and is aware of ehlers danlos, and autoimmune disorders such as PBC. It offers specialist referral to other consultants at the RVI.
So the point of the paper in relation to "Chronic Fatigue Syndrome" is that many of these patients have explainable fatigue states and that chronic fatigue syndrome is in fact a heterogeneous disorder as even Wessely has admitted. So I have reverted the change. —Preceding unsigned comment added by 86.129.228.81 (talk) 19:55, 17 December 2010 (UTC)
- If that was the case, then this paper would be important, but it is far from proven. A single study does not prove anything, and should not (according to MEDRS) be included in wikipedia unless it is 'important'. Considering that nobody else has shown results like this, and there are currently zero citations to the paper (as it is new), I can't really see why it is important to include it. --sciencewatcher (talk) 20:22, 17 December 2010 (UTC)
- because most CFS clinics in the UK DO NOT investigate for organic illness: I quote from the Leeds & Yorkshire CFS service:
The service will provide assessment and advice on management strategies for people referred by primary and secondary care within the West Yorkshire region with a primary problem of chronic and debilitating fatigue, for which there is no identifiable pathology or alternative diagnosis. All referrals must have been already screened for differential diagnosis, and the referrer assumes that the person fulfils the criteria for CFS.
So they don't look for organic causes at all. They do however offer CBT and psychiatric treatment. As the paper also makes clear other clinics do not usually have the expertise to recognise fatigue as a co-morbid condition- for example spinal injury and compromised autonomic function leading to fatigue can be relieved with midodrine.
Newcastle also has the most extensive autonomic testing facility in the UK and unlike other clinics carries out a full autonomic assessment of patients. —Preceding unsigned comment added by 86.129.228.81 (talk) 20:30, 17 December 2010 (UTC)
- Well you haven't answered my points above about why we should put the study in the article in the first place. And the study has no mention of midodrine, spinal injury or anything else. --sciencewatcher (talk) 20:48, 17 December 2010 (UTC)
- Sorry if you didn't understand my reference to spinal injury which of course isn't in the paper. You will of course gather I do know the service and their treatment protocols (ie midodrine for orthostatic intolerance in POTS and vasovagal syncope). I would have thought though that with reference to the Leeds CFS clinic this would be obvious. I will however spell it out again- this paper usefully highlights the need for EXTENSIVE investigation for treatable biological factors in the pathogenesis of fatigue by CFS clinics in the UK, this is not currently the case. —Preceding unsigned comment added by 86.129.228.81 (talk) 21:18, 17 December 2010 (UTC)
- I'm not sure you have proven your point, and your personal knowledge of the clinic isn't really relevant for wikipedia. Apart from that, this paper definitely isn't appropriate for the lede. --sciencewatcher (talk) 21:34, 17 December 2010 (UTC)
- In addition to not proving the importance of the study itself and why it justifies being included despite being a primary source, I'm also unclear as to how you think the 47% is relevant, especially given what you're saying. You seem to be discussing the failures of Fukuda, then skipping over the evidence related to Fukuda (the 40% misdiagnosis rate) to quote some irrelevant fact about people misdiagnosed with CFS. You need to make clear why you think the 47% of non-CFS patients having chronic disease in any way relates to CFS. Until you've proven the relevance of both the survey itself and why it belongs in the lead, I'm afraid it must be reverted as irrelevant to the article.
- Let me make it clear, however, that if you can find secondary sources indicating that this level of misdiagnosis using Fukuda is common, that is absolutely relevant and would definitely warrant a place in the article. As it is, however, chronic disease conditions unrelated to CFS really don't make much sense to include, especially when they're based on what might be one anomalous year at a specific clinic. – RobinHood70 talk 22:17, 17 December 2010 (UTC)
- There's not much point as since you don't understand the point being made, which has now being made very clearly, and pointedly dismiss real world experience I am left feeling neither of you have the medical or scientific credentials to understand the argument. Out of interest whilst editing a chapter from Tressiden & Puri's textbook on evidence based psychiatry I noticed an interesting error in the chapter on Chronic Fatigue- the typo was "Fuckuda" which is actually quite funny. No doubt also how any patient with missed organic illness might feel who is sent to Leeds, Edinburgh or the IOP.
Actually, Rob is right (and I didn't even realise it until he pointed it out!) The 47% figure comes from patients who did not fulfill the criteria for CFS in the first place. So out of all the referrals, 47% of 40% (i.e. 18.8%) had a chronic disease condition that explained the fatigue. But as Rob points out, none of those patients were ever diagnosed with CFS in the first place! So apart from everything else, your edit "47% of Fukuda criteria chronic fatigue patients have missed chronic disease" is a misrepresentation of the source.
It may be worth mentioning this somewhere in the article or one of the sub-articles, but not in the lede and certainly not the way you have done it by misrepresenting (or misunderstanding) the source. --sciencewatcher (talk) 23:37, 17 December 2010 (UTC)
"Disease-associated XMRV sequences are consistent with laboratory contamination"
An editor of this article may want to consider adding material from this recent study in Retrovirology[1]. I would do so, but I don't want to interfere with the usual editing culture here. Wilson44691 (talk) 21:41, 20 December 2010 (UTC)
- According to this 4 separate studies have come to the same conclusion. Should be added here and at the XMRV article. --sciencewatcher (talk) 16:28, 21 December 2010 (UTC)
- I've added this to the main article. It still needs to be added to the pathophysiology sub-article (in more detail).--sciencewatcher (talk) 15:12, 28 December 2010 (UTC)
There are some corrections in these edits that are worth incorporation, but also some errors that need correcting. Some relevant sentences of the Jason study to the recent changes include:
- The National CFIDS Foundation Memorial List included both individuals who
- had been members of the National CFIDS Foundation as well nonmembers."
- "It also was unclear how representative the memorial list is and from
- what population it draws its data. Clearly, it is not possible to generalize the
- data from this memorial list to the overall population of patients with CFS."
- "We would urge future investigators on this topic to place more attention on the diagnostic
- criteria. Clearly, a study on causes of death related to a condition that may
- have been unreliably diagnosed is a serious issue. There are so few published
- findings in this area, however, that the current study could at minimum serve
- to stimulate additional, better controlled studies."
Ward20 (talk) 20:15, 16 January 2011 (UTC)
- Haven't seen the full text of the following study but it may be useful if there is a prospective comparison of CFS mortality rates to the general population, "CFS prevalence and risk factors over time". (Jason et al 2011): "The present natural history study examined the course of CFS from 1995-97 (Wave 1) to approximately 10 years later (Wave 2) from a random, community-based, multi-ethnic population. The rate of CFS remained approximately the same over the period of time from Wave 1 to Wave 2, although a high level of mortality was found (18% of those with medical or psychiatric exclusions group, 12.5% for the CFS group). Physical measures of disability and fatigue, along with measures of specific somatic symptoms, better differentiate individuals who later are diagnosed with CFS than more psychosocial measures such as stress and coping." -- Tekaphor (TALK) 02:34, 20 January 2011 (UTC)
yet more evidence that GET (graded exercise) is a waste of money and resources due to being ineffective
more evidence pointing towards the waste of money and ineffectiveness of GET....along with the Twisk and Maes papers this should be added to the article for balance, of course I know which editors will try and block this but this needs to be added,
Núñez M, Fernández-Solà J, Nuñez E, Fernández-Huerta JM, Godás-Sieso T, Gomez-Gil E. "Health-related quality of life in patients with chronic fatigue syndrome: group cognitive behavioural therapy and graded exercise versus usual treatment. A randomised controlled trial with 1 year of follow-up." Clin Rheumatol. 2011 Jan 15. [Epub ahead of print] PMID 21234629
Rheumatology Service, Functional Readaptation Unit, Hospital Clinic, Barcelona, Spain
Abstract
Chronic fatigue syndrome (CFS) produces physical and neurocognitive disability that significantly affects health-related quality of life (HRQL). Multidisciplinary treatment combining graded exercise therapy (GET) cognitive behavioural therapy (CBT) and pharmacological treatment has shown only short-term improvements.
To compare the effects on HRQL of (1) multidisciplinary treatment combining CBT, GET, and pharmacological treatment, and (2) usual treatment (exercise counselling and pharmacological treatment) at 12 months of follow-up. Prospective, randomized controlled trial with a follow-up of 12 months after the end of treatment.
Patients consecutively diagnosed with CFS (Fukuda criteria) were randomly assigned to intervention (n = 60) or usual treatment (n = 60) groups. HRQL was assessed at baseline and 12 months by the Medical Outcomes Study Short-Form questionnaire (SF-36). Secondary outcomes included functional capacity for activities of daily living measured by the Stanford Health Assessment Questionnaire (HAQ) and comorbidities. At baseline, the two groups were similar, except for lower SF-36 emotional role scores in the intervention group.
At 12 months, the intervention did not improve HRQL scores, with worse SF-36 physical function and bodily pain scores in the intervention group. Multidisciplinary treatment was not superior to usual treatment at 12 months in terms of HRQL. The possible benefits of GET as part of multidisciplinary treatment for CFS should be assessed on an individual patient basis.
81.153.141.228 (talk) 14:48, 17 January 2011 (UTC)
- I'm concerned about recentism, but otherwise, I think this probably just adds to the growing evidence that GET and CBT aren't curative by any means, and that they may or may not even be helpful. (Much has been correctly noted previously about inherently biased patient selection, GET, and CBT, so I don't need to rehash it here.) If you feel that the article is out of balance in this regard, I would think this could be used as part of a balanced reporting of the issue. It's not fair to present only the side that that GET or CBT are useless based on this alone, though.
- Two side points: first, I've removed the colon from the PMID above just so that it's easier to get to, since it'll link. Second, your points would probably be far better received if you started making them entirely about the content and less about the editors. It's been a long time since the people on this article have had biases as strong as you seem to think they still do, and I don't think anybody here wants a return to that era. – RobinHood70 talk 20:59, 17 January 2011 (UTC)
- I'm not sure this adds anything. This is just a primary study, and we are only including reviews. The reviews already include some studies that show a large effect and some which show no effect at all. --sciencewatcher (talk) 15:43, 18 January 2011 (UTC)
- Thanks IP:81.153.141.228, this study attempted the proponents' dream combination of CBT + GET + pharmacological treatment. But I am concerned with the mention of "group" CBT and GET vs usual treatment because group therapy has already proven to be weaker than individual therapy or even practically useless.
- This study may therefore be useful for creating a subsection in the CFS Treatment article about how group therapy has had poorer results than individual therapy and in this case made actually made the situation worse than usual care, along with the large Belgian evaluation failure mentioned by Twisk & Maes, and the Cochrane systematic review which in a sub-group analysis found group CBT to have a less significant effect at reducing fatigue than individual CBT.
- Sciencewatcher, the authors here note the previous short term improvements and included a 12 month post treatment follow up in their study, so which CBT or GET study using Fukuda criteria has ever shown a "large effect" or even a "moderate effect" at 12 months after the end of treatment? Probably none, and that is before we go beyond the questionable fatigue scales and look into function. - Tekaphor (TALK) 02:18, 20 January 2011 (UTC)
- My point is that we are just including reviews. Eventually this will make its way into a review so why should it be treated differently? --sciencewatcher (talk) 15:11, 20 January 2011 (UTC)
I am sure the review needs to be included, so I beleive from the look of it there is a clear consensus that the article needs adding. tekaphor seems to have a good grasp of it, I would suggest tekaphor add additions to the article86.167.9.15 (talk) 19:28, 7 February 2011 (UTC)
- It's not a review. --sciencewatcher (talk) 19:47, 7 February 2011 (UTC)
- I think IP 86.* has misunderstood a little. Both Tekaphor and I have suggested that this one study can only be used as part of a larger section of information, much as the various recent XMRV studies are presented. SW rightly points out that it's not a review, so on its own, it certainly isn't appropriate to use it, per WP:MEDRS. If it were part of a larger body of citations that presented both sides of the controversial usage of CBT and GET, especially in a group setting, then it would perhaps be suitable. The consensus here is that without a balance of information, such as being used in a review or presented along with other primary sources that are for and against, the study should not be included on its own. And even if it is included, we should be careful of using primary sources, as always. – RobinHood70 talk 21:39, 7 February 2011 (UTC)
twisk and maes have a whole bunch of reviews, use some of them, theres a few on pubmed, its quite funny that the original IP knew exactly which editors would try and block it, why do certain editors always complain about certain papers on certain subjects, its funny cos the same editors promote and encourage negative papers on the XMRV page even though a lot of those are primary and not reviews, we need balance to this page86.167.9.15 (talk) 01:15, 8 February 2011 (UTC)
- Um, we have lots of primary XMRV papers both positive and negative on the XMRV and CFS pages. This was extensively discussed on the talk pages of the articles concerned - the reason we include primary papers there is because there are no reviews available and the studies are very important. Please assume good faith. --sciencewatcher (talk) 01:40, 8 February 2011 (UTC)
PLEASE NOTE that I reinstated the above comment from an IP that sciencewatcher decided to delete without any valid reason, that is a break of wikirules, please follow the rules, thanks 81.156.8.29 14:18, 8 February 2011 (UTC)
- No, I didn't delete anything, but you deleted my comment above. --sciencewatcher 14:29, 8 February 2011 (UTC)
- I made this initial edit for now. The following text on the evaluation study of CBT/GET offered by the Belgium CFS Reference Centers was removed from the CFS Treatment article about a year ago, presumably for WP:MEDRS reasons: "A large evaluation study in Belgium, however, lead to the conclusion that while on average CBT may cause patients to feel somewhat better, objective measurement shows no reduction in their disability. The report mentions that the results of the Belgian study are not as good as the results reported in published evidence based studies. The report considers that patient selection was different, and furthermore that most evidence-based studies used individual therapy, whereas the Belgian reference centres performed the therapy mostly in groups of 3-11 patients.[1][2]"
- The full text of Twisk & Maes 2009 ("A review on CBT and GET in ME/CFS ..." - PMID 19855350 - already cited for patient surveys) is a better source and confirms the lack of overall effect and that "the occupational participation had even decreased after the rehabilitation therapy with CBT/GET", but it apparently does not confirm that group therapy was used. Their other review may do this (Maes & Twisk 2009 - "Chronic Fatigue Syndrome: la bête noire of the Belgian Health Care System" - PMID 19855351) but the abstract does not and I do not have the full text. Pages 77-83 of this official government report in English language confirms that 83% of the Belgium CBT/GET therapy incidences were group based. Should this evaluation be included somewhere in the article anyway because it is a large real world application of CBT/GET outside a RCT and therefore notable?
- Regarding Núñez et al 2011 (PMID 21234629 - full text here), Sciencewatcher argues there is nothing special about it to warrant inclusion, but when debating IP:86.*'s response on primary and secondary sources used for XMRV, claims "we include primary papers there is because there are no reviews available and the studies are very important". Since there are multiple reviews which include earlier XMRV studies, I'm guessing Sciencewatcher means the primary sources on XMRV are important because they provide additional or new information? Well, this is the same reason why Núñez et al 2011 also needs to be included. Sciencewatcher thinks we should wait for an updated review on CBT/GET for CFS which includes Núñez et al 2011, but doesn't see the need to wait for an updated review on XMRV which includes the negative studies he deems "very important" enough to routine add them to the Wikipedia articles as soon as they are published?
- Núñez et al 2011 provides data which the two reviews included in my recent edit on group therapy do not, results at 12 months after completion of treatment. It also explicitly tested CBT+GET+pharmacology, and failed. While not the first published RCT on CBT or GET to show negligible positive results (see Cochrane reviews on each), or the first published RCT to show potential harm for some patients participating in CBT or GET (for example, Twisk & Maes 2009 cite two studies by Jason et al 2007 and 2008 for this, not to mention that adverse effects and reasons for dropout are poorly recorded in CBT/GET research in general), but may be the first published RCT to show overall harm in the whole group on average, at least for group CBT/GET which was not covered at all in the Wikipedia articles on CFS. I don't recall if there has been group GET-only in a published RCT, maybe but if not, this study is the first and again therefore unique.
- There were no significant differences in baseline epidemiological and clinical characteristics, but they state worse baseline emotional role scores in the intervention group, although "emotional and mental aspects improved slightly" so I doubt this was responsible for the poor results. There were also a significant increase in comorbidities for both groups. The discussion section of the full text was, for the most part, informative and balanced. I know Sciencewatcher will love this part: "the results of our study tend to support the somewhat controversial findings of Twisk and Maes". It is important because it demonstrates harm, but I am unsure how to further integrate this study and Twisk/Maes into the articles while both following WP:RULES and avoiding edit wars. - Tekaphor (TALK) 05:09, 10 February 2011 (UTC)
- I suggest that you input what you want to add on the talk page to see if there will be consensus for it. If the regular editors can't come to consensus then we can request an RFC for the material. Ward20 (talk) 18:53, 10 February 2011 (UTC)
Hepatitis-C
Very little discussion or article contents about Hepatitis-C. eg, are patients in US or UK screened for Hep-C prior to CFS diagnosis ? 79.66.209.202 (talk) 17:29, 20 January 2011 (UTC)
- Hepatitis (including hepatitis C) is one of many conditions clinicians are expected to consider when evaluating someone for CFS. This is covered in the CDC 1994 criteria, discussed in the Classification section of the this article, which links to Clinical descriptions of chronic fatigue syndrome. People with hepatitis C who do not have elevated transaminases and who do not report risk factors for HCV infection might be missed (because the mandated screening includes transaminase measurement and history-taking but not specific testing of all people for HCV). -- Scray (talk) 21:21, 16 February 2011 (UTC)
XMRV weight
XMRV seems to have far too much weight in the main article (compare to the pathophysiology article, where the weight is about right). I'm thinking it should be trimmed down to about a sentence, and the XMRV sub-heading removed. Or should we still leave it as it is for now due to the continuing media furore and public interest? Thoughts please. --sciencewatcher (talk) 18:48, 16 February 2011 (UTC)
- I believe the weight should be reduced but the XMRV sub-heading kept so readers can locate it easily due to the high media profile. I suggest using the latest review article as a source, and something along these lines:
A 2009 study reporting the retrovirus xenotropic murine leukemia virus-related virus (XMRV) in the blood of a high percentage of individuals suffering from chronic fatigue syndrome in the United States has generated significant interest in a possible linkage. The relevance and significance of XMRV to any pathophysiology of the illness has not been established since XMRV has not been found in several other studies of CFS.[3]
Ward20 (talk) 21:19, 16 February 2011 (UTC)
- Note The ref is formatted at the end of the above section but it is not showing up for some reason. Ward20 (talk) 21:21, 16 February 2011 (UTC)
- Yes, something along those lines seems reasonable. --sciencewatcher (talk) 22:05, 16 February 2011 (UTC)
- OK good, let's go ahead and edit the material in the box to come to consensus and add it to the article a couple days from now. Thanks RobinHood70 for fixing the citation. Ward20 (talk) 21:57, 17 February 2011 (UTC)
PACE trial
here is the actual study. This probably needs to be added to both the main article and the treatment sub-article. Does anyone have access to the full-text? --sciencewatcher (talk) 16:05, 18 February 2011 (UTC)
- So other people are aware, relevant conversion is also going on at http://en.wikipedia.org/wiki/Talk:Chronic_fatigue_syndrome_treatment#PACE_Trial - Tekaphor (TALK) 04:00, 27 February 2011 (UTC)
CFS proteins in cerebrospinal fluid
This was just released earlier today, so obviously there are no reviews yet, but it sounds like it'll be something to follow. Major news agencies, including CBS, have already picked up the story. – RobinHood70 talk 07:22, 24 February 2011 (UTC)
A many to many problem
I've read this article a number over several years, pondering how to resolve the essential semantic problem of a multiply interpreted 'title' (CFS)_ applying to multiple alternate names (PVS, M.E etc), My conclusionis that a systems approach is perhas more useful than a semantic approach - hence the Many to Many issue http://www.sqa.org.uk/e-learning/SDM03CD/page_37.htm. The non logical consquences of the current presentation of the article are well represented in the lead, where reference 9 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079668/?tool=pmcentrez is attached to text which is specific to CFS as applied in the reference work, excluding PVFS. Thus the lead says CFS = PVFS, but the text "For unknown reasons CFS occurs most often in people in their 40s and 50s" and "and is less prevalent among children and adolescents." applies only to CFS/ME, making the article inaccurate if the CFS title is intended to be 'inclusive'. As it happens reference 8 http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx contradicts the the current text regarding age: "Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15."
If other editors agree that there is a broader issue here, beyond the inherent error I've pointed out, I'd be interested in cooperating in restructuring the language of the article to resolve the many to many issue. Apologies for the raw URLs - I'll try to tidy them up latter. --In Vitro Infidelium (talk) 16:46, 24 February 2011 (UTC)
- I agree there is a problem with CFS vs PVFS at Wikipedia, this issue was debated a while ago without much success. You're welcome to attempt to fix the problem you mention above. When there is a contradiction of sources, WP:MEDRS gives suggestions on which should be given preference, which can lead to arguments when people disagree on how to interpret this advice. - Tekaphor (TALK) 04:21, 27 February 2011 (UTC)
- Thanks for giving a response. I'm entirely agnostic about terms, my concern is that the terms used should reflect the sources, and vice versa. At present that is not what the article does.
Proposed amendments to the lede paragraphs - first step in addressing the many to many issue
First three paragraphs only amended - strike through = delete, bold+italic = insert. Changes are related to content of the relative references, please read through these where there is any concern about the amendment validity.
Сhronic fatigue syndrome (CFS) is the most common name [4] given to a variably debilitating disorder or group of disorders generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by the presence of other specific symptoms for a minimum of six months.[5] The disorder may also be referred to as post-viral fatigue syndrome (PVFS, when the condition arises following a flu-like an illness), myalgic encephalomyelitis (ME), or several other terms. The disease process in CFS displays a range of neurological, immunological, and endocrine system abnormalities. Although classified by the World Health Organization under Diseases of the nervous system,[6] the etiology (cause or origin) of CFS is currently unknown and there is no diagnostic laboratory test or biomarker.[5]
Fatigue is a common symptom in many illnesses, but CFS is a multi-systemic disease and is relatively rare by comparison.[7] (S)symptoms of CFS also include post-exertional malaise; unrefreshing sleep; widespread muscle and joint pain; cognitive difficulties; chronic, often severe, mental and physical exhaustion; and other characteristic symptoms in a previously healthy and active person. CFS patients may report additional symptoms including muscle weakness, increased sensitivity to light, sounds and smells, orthostatic intolerance, digestive disturbances, depression, poor immune response, and cardiac and respiratory problems.[8] It is unclear if these symptoms represent co-morbid conditions or are produced by an underlying etiology of CFS.[9] All diagnostic criteria have exclusionary elements which require that the symptoms on which diagnosis is based must not be caused by other identifiable medical conditions.
Studies have reported numbers on the prevalence of CFS that to vary widely,[7] from 7 to 3,000 cases of CFS for every 100,000 adults,[9] but while national health organizations have estimated more than 1 million Americans and approximately a quarter of a million people in the UK have CFS.[10][11] For unknown reasons CFS occurs most often in people in their 40s and 50s, more often in women than men,[12][13] and is less prevalent among children and adolescents.[10] The quality of life is "particularly and uniquely disrupted" in CFS.[14] and A a prognosis study review calculated a median untreated patient full recovery rate of 5%, and the median improvement rate at approximately 40% compared to pre morbid status.[15]
--In Vitro Infidelium (talk) 16:57, 2 March 2011 (UTC)
- I assume you meant to strike out "most common" in the first sentence and not "common name". We'd need some kind of reference for the "group of" insertion, as I know it's been theorized that it could be either one or many different disorders. In the second paragraph, we need to make more of a distinction between the "also include" sentence and the "additional symptoms" sentence that follows it. As written, there's no clear reason the two sets of symptoms are being separated. Apart from that, the changes seem good to me and make the lead flow much better. – RobinHood70 talk 22:28, 2 March 2011 (UTC)
- Paragraph 1: sentence 2, removal of "flu-like" without a "viral" replacement seems far too vague. Paragraph 2: what happened to the end of sentence 1? Sentence 3: is "poor immune response" a symptom? More to the point, the Wyller publication (PMID 17419822) does not support this as a symptom at all - "poor immune response" is not even mentioned in the paper. Similarly, the "cardiac" problems described by Wyller (table 2) were orthostatic intolerance, palpitations, and "paleness", which don't map well to sentence 3 of lede paragraph 2. The last symptom complex in this sentence, "respiratory problems", are not mentioned in Wyller at all (and should, like "poor immune response", be removed unless reliably cited). Regarding RobinHood70's question, it appears that the first set of symptoms (in sentence 2) is a synopsis of the criteria for the CDC definition (i.e. table 1 in Wyller), whereas the second set of symptoms (sentence 3) are "common accompanying symptoms" (table 2 in Wyller). Paragraph 3: I think sentence 2 should be retained as relevant to the lede paragraph for a health topic, except for the first 3 words (since we really don't understand much about CFS/ME). -- Scray (talk) 00:11, 3 March 2011 (UTC)
- Agree with Scray on "flu-like".
- Agree cardiac and respiratory problems should be removed or reliably cited.
- Other suggestions to what has been proposed:
- Fatigue is a common symptom, but CFS is comparatively rare.[7] Symptoms of CFS
CFS symptomsalso include post-exertional malaise; unrefreshing sleep; widespread muscle and joint pain; cognitive difficulties;chronic, often severe, mental and physical exhaustionpainful lymph nodes; frequent or recurring throat soreness; and new or severe headaches.[16]
- Fatigue is a common symptom, but CFS is comparatively rare.[7] Symptoms of CFS
- All diagnostic criteria
have exclusionary elements whichrequire thatthesymptoms on which the diagnosis is based must not be caused by identifiable medical conditions.
- All diagnostic criteria
- Other items: Should the fact that the name chronic fatigue syndrome dates from the 1987-1988 time frame be put into the lead? Should the third paragraph which explains the prevalance and importance of chronic fatigue syndrome be swapped with the second paragraph?
- Ward20 (talk) 01:59, 3 March 2011 (UTC)
- While it is true to Wyller speculates about Th1/Th2 skewing as a potential mechanism in that review, we're talking about symptoms in the lede, and immune dysfunction is not a symptom. A discussion of potential mechanism would be an expansion of scope for the lede as presently written, and would be hard to support with reliable sources (since the cause is unknown and there is no diagnostic test). Basically, I'm not convinced that immune dysfunction belongs in this lede. -- Scray (talk) 04:12, 3 March 2011 (UTC)
- After more thought and looking at the definition of symptom I agree with you. The expansion of scope for the lede to include immune dysfunction would be difficult due to uncertainty of the literature and multitude of different reports of abnormal tests and potential mechanisms. Ward20 (talk) 05:58, 3 March 2011 (UTC)
- While it is true to Wyller speculates about Th1/Th2 skewing as a potential mechanism in that review, we're talking about symptoms in the lede, and immune dysfunction is not a symptom. A discussion of potential mechanism would be an expansion of scope for the lede as presently written, and would be hard to support with reliable sources (since the cause is unknown and there is no diagnostic test). Basically, I'm not convinced that immune dysfunction belongs in this lede. -- Scray (talk) 04:12, 3 March 2011 (UTC)
- Ward20 (talk) 01:59, 3 March 2011 (UTC)
(outdent) @ RobinHood70
I assume you meant to strike out "most common" in the first sentence and not "common name".
Yes – I’ve now altered the strike through.
We'd need some kind of reference for the "group of" insertion, as I know it's been theorized that it could be either one or many different disorders.
I agree about the reference. The problem I was addressing was the problem of syntax where the singular ‘CFS’ is matched to the plural ‘diseases’ – ‘group of’ resolves this gramatically. Would it be preferable to simply remove “or diseases” ? Or is Ward20’s suggestion of http://www.ncbi.nlm.nih.gov/pubmed/15929497 adequate ?
@Scray Paragraph 1: sentence 2, removal of "flu-like" without a "viral" replacement seems far too vague.
There’s no agreement on ‘flu-like’ across the bulk of research papers, and as far as I can see there’s no definitive limitation on viral infection although most papers that do venture toward identification of infective agent do imply viral rather than any other cause http://onlinelibrary.wiley.com/doi/10.1111/j.1600-0404.1990.tb04490.x/abstract
Paragraph 2: what happened to the end of sentence 1?
The issue of co-morbity allows that someone can be diagnosed with CFS, while also suffering illness in which fatigue is not a recognised symptom, this renders “in a previously healthy and active person” as contradictory. The problem here is that “previously healthy and active” has appeared in some diagnostic criteria, but not all. This is part of the “many to many” issue that I believe needs dealing with systematically. If the lede is concerned to ‘umbrella’ a range of illness descriptions under CFS, then reliance on a single source for the definitvie symptoms can’t be sufficient. I’m not saying Wyller is not validjust that on it’s own it doesn’t meet what the article is trying to do.
Sentence 3: is "poor immune response" a symptom?
I’m agnostic on this but the current form of words includes ‘patients report’ – undoubtedly references exist to support a wide range of symptoms that ‘patients report’.
@ Ward20
Other suggestions to what has been proposed: Fatigue is a common symptom, but CFS is comparatively rare.[7] Symptoms of CFS CFS symptoms also include post-exertional malaise; unrefreshing sleep; widespread muscle and joint pain; cognitive difficulties; chronic, often severe, mental and physical exhaustion painful lymph nodes; frequent or recurring throat soreness; and new or severe headaches.[16]
The first sentence is far too conflated – it must at least define what fatigue is a symptom of, also making a ‘symptom’ the comparitor of a condition (CFS) is confusing to say the least. The remainder is an improvement on my suggestions.
--In Vitro Infidelium (talk) 13:18, 3 March 2011 (UTC)
- Re: first sentence, fair point, how to differentiate common fatigue from CFS from sources though? Ward20 (talk) 21:22, 3 March 2011 (UTC)
First three paras: amended below as previous discussions, excepting -
(1) Para 1. text and ref re: date added. Sentence re PVFS – suggested to delete all related text and support only with link to main PVFS article. PVFS is effectively an historic diagnosis and need not be defined in the lede of the CFS article.
(2) Para 2, re-written with additional refs and relocated as para 3.
(3) Para 3. unresolved sentence re: age profile. There a multiple conflicting sources re: age and gender ratios. I suggest removing this issue from the lede until there is some clear supporting text to add to the body of the article.
Сhronic fatigue syndrome (CFS) is the name, introduced in 1987 "Frequency of 'chronic active Epstein-Barr virus infection' in a general medical practice". JAMA 257 (17): 2303–7. doi:10.1001/jama.257.17.2303. PMID 3033338. http://jama.ama-assn.org/cgi/reprint/257/17/2303. [4] given to a variably debilitating disorder or group of disorders PMID 17853290 http://www.ncbi.nlm.nih.gov/pubmed/15929497 generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by the presence of other specific symptoms for a minimum of six months.[5] The disorder may also be referred to as post-viral fatigue syndrome (PVFS, when the condition arises following a flu-like an illness), myalgic encephalomyelitis (ME), or several other terms. Although classified by the World Health Organization under Diseases of the nervous system,[6] the etiology (cause or origin) of CFS is currently unknown and there is no diagnostic laboratory test or biomarker.[5]
Studies have reported the prevalence of CFS to vary widely,[7] from 7 to 3,000 cases of CFS for every 100,000 adults,[9] while national health organizations have estimated more than 1 million Americans and approximately a quarter of a million people in the UK have CFS.[10][11] For unknown reasons CFS occurs most often in people in their 40s and 50s, more often in women than men,[12][13] and is less prevalent among children and adolescents.[10] The quality of life is "particularly and uniquely disrupted" in CFS.[14] and a prognosis study review calculated a median untreated patient full recovery rate of 5%, and the median improvement rate at approximately 40% compared to pre morbid status.[15]
Fatigue is a common symptom in many illnesses, but CFS is a multi-systemic disease and is relatively rare by comparison.[7] While complaints of fatigue are common (in developed countries) http://jech.bmj.com/content/46/2/92.extract CFS is a devastating and complex disorder characterized by overwhelming fatigue that is not improved by bed rest and that may be worsened by physical or mental activity and which lasts or is recurrent for more than six months[7] http://www.ncf-net.org/patents/pdf/Fukuda_Definition.pdf Symptoms of CFS also include post-exertional malaise; unrefreshing sleep; widespread muscle and joint pain; cognitive difficulties; chronic, often severe, mental and physical exhaustion painful lymph nodes; frequent or recurring throat soreness; and new or severe headaches.[16 http://www.ncf-net.org/patents/pdf/Fukuda_Definition.pdf . CFS patients may report additional symptoms including muscle weakness, increased sensitivity to light, sounds and smells, orthostatic intolerance, digestive disturbances, depression, cardiac and respiratory problems.[8] http://archinte.ama-assn.org/cgi/content/full/160/21/3270 http://resources.metapress.com/pdf-preview.axd?code=1ux5lcdwlkpdc09j&size=largest All diagnostic criteria require that symptoms on which the diagnosis is based must not be caused by identifiable medical conditions.
--In Vitro Infidelium (talk) 13:58, 5 March 2011 (UTC)
- Let's take this a couple of sentences at a time. Here is wording I favor because I believe "the name" misconveys to the reader that the name is settled. It is still being challenged on several fronts and alternate names and terms are being put forth by both patient groups and medical professionals that have varying hypothesizes.
Chronic fatigue syndrome (CFS) is the most common name[4]used to specify a disorder or group of disorders[17] generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by other specific symptoms for a minimum of six months.[5] The disorder may also be referred to as post-viral fatigue syndrome (PVFS), myalgic encephalomyelitis (ME), or several other terms. Although classified by the World Health Organization under Diseases of the nervous system,[18] the etiology (cause or origin) of CFS is currently unknown and there is no diagnostic laboratory test or biomarker.[5]
- I couldn't easily figure out how to work the date in at this point. Please feel free to edit the text in the quote box and hopefully we can get a consensus. Ward20 (talk) 17:37, 6 March 2011 (UTC)
- Edited wording above. Ward20 (talk) 17:48, 6 March 2011 (UTC)
- Nice. I suggest shortening accompanied by the presence of other specific symptoms to accompanied by other specific symptoms. -- Scray (talk) 18:31, 6 March 2011 (UTC)
- Incorporated as above. Ward20 (talk) 18:56, 6 March 2011 (UTC)
- Can we remove "variably debilitating", which makes the sentence considerably harder to read without adding anything essential? Looie496 (talk) 19:07, 6 March 2011 (UTC)
- An excellent suggestion - I had stopped seeing those words, but you're right! -- Scray (talk) 20:50, 6 March 2011 (UTC)
- Done, although I would not like to remove from the lead that this can be a illness with exteme loss of health and/or ability to the patient. Ward20 (talk) 23:49, 6 March 2011 (UTC)
- Also concur. --In Vitro Infidelium (talk) 08:42, 7 March 2011 (UTC)
- Done, although I would not like to remove from the lead that this can be a illness with exteme loss of health and/or ability to the patient. Ward20 (talk) 23:49, 6 March 2011 (UTC)
- An excellent suggestion - I had stopped seeing those words, but you're right! -- Scray (talk) 20:50, 6 March 2011 (UTC)
- Can we remove "variably debilitating", which makes the sentence considerably harder to read without adding anything essential? Looie496 (talk) 19:07, 6 March 2011 (UTC)
- Incorporated as above. Ward20 (talk) 18:56, 6 March 2011 (UTC)
- Nice. I suggest shortening accompanied by the presence of other specific symptoms to accompanied by other specific symptoms. -- Scray (talk) 18:31, 6 March 2011 (UTC)
- Edited wording above. Ward20 (talk) 17:48, 6 March 2011 (UTC)
Out: Add the other proposal discussed to first paragraph. Ward20 (talk) 15:16, 7 March 2011 (UTC)
- Sorry to be pedantic, but on reflection, I still have a problem with “is the most common name” rather than ‘is the name’. None of the other designations PSVF, PVS, M.E, CFIDS etc are generally applied to “a group’ of disorders”, and only very rarely involve acknowledgement of subtypes. The point about CFS is that it was intentionally developed to be an inclusive term, so it is not equivalent to PSVF, PVS, M.E, CFIDS etc but rather is an over arching descriptor into which all the pre-existing terms are subsummed. Given that the article acknowledges there is controversy over the name, this is a relevant point because much of the controversy revolves around whether an overarching description is appropriate. For the present (and realistically for the foreseeable future)CFS is now the defining designation in medical usage and while there may be various tweaking (the UK now uses the term CFS/M.E ), there is no reason not to say that “CFS is the name”. Removing ‘common’ also removes some semantic ambiguity – is it ‘the most common name’, or ‘the name most commonly used’, or ‘the name common to’ ?
- --In Vitro Infidelium (talk) 10:18, 8 March 2011 (UTC)
- IMO, the situation is too complex to say CFS ‘is the name’. The first definition to use the name CFS was the Holmes definition. It was not intended to be inclusive of the same or similar illnesses with other names. It tried to define the illness studied in outbreaks in the US and replace the term CEBV. However, it was criticised for being difficult to implement and including depressed persons without CFS. The revised Fukada definition of CFS was simplified by dropping some criteria, increased the estimates of the illness dramatically, and reportedly didn't solve the problem of inclusion of depressed persons without CFS.[2] The revised CDC empirical case definition of CFS is also reported to have poor sensitivity and specificity.[www.scirp.org/journal/PaperInformation.aspx?paperID=1622[predatory publisher]]
- If ‘is the most common name ’ has semantic ambiguity, the phrase in question can be replaced by your suggestion, ‘the name most commonly used’, as that is supported by the given citation.[7]
- Ward20 (talk) 23:14, 8 March 2011 (UTC)
- Thanks for taking the time to give those sources. I had missed the fact that "is the most common name" was a direct quote and I doubt there is anything better that could be directly attributed to a source. Obviously things have changed somewhat since 1999, Wessely published more recently, a review of how the different names were being used, but I can't currently locate the journal - it is anyway only supportive of issues more appropriate to the main text rather than the lede. The new text above is a great improvement so lets go with that. Apologies for the diversion.
- --In Vitro Infidelium (talk) 12:33, 9 March 2011 (UTC)
- Ward20 (talk) 23:14, 8 March 2011 (UTC)
- I edited the first sentence to fix the ref. Ward20 (talk) 02:36, 10 March 2011 (UTC)
I can't find reference to one million americans in the CDC article which is currently linked to as footnote 8. The number is not out of line with extrapolation from the Georgia population based study, but the cited source does not include this reference as far as I can see.96.232.197.154 (talk) 10:31, 16 March 2011 (UTC)
- Regarding the introductory sentence to this article: "Chronic fatigue syndrome (CFS) is the most common name used to specify a disorder or group of disorders generally defined by persistent fatigue unrelated to exertion,...". Although I think I know what is meant, there is a potential for misunderstanding in this definition, in that there is often a substantial increase in all CFS symptoms - including fatigue - after exertion. The source quoted uses the phrase: "Unexplained, persistent fatigue that's not due to ongoing exertion"; perhaps it might be better to reword similar to that. Drgao (talk) 00:31, 2 April 2011 (UTC)
- Scray beat me to it by about a minute. Looks good. – RobinHood70 talk 02:57, 2 April 2011 (UTC)
- I beat Robin Hood! I appreciate Drgao's suggestion - the sentence structure is improved, the meaning is clearer. -- Scray (talk) 03:08, 2 April 2011 (UTC)
arbitrary break for second paragraph
This is my take on what is being proposed for the second paragraph:
Studies have reported numbers on the prevalence of CFS that vary widely,[7] from 7 to 3,000 cases of CFS for every 100,000 adults,[9] but national health organizations have estimated more than 1 million Americans and approximately a quarter of a million people in the UK have CFS.[10][11] CFS occurs
most often in people in their 40s and 50s,more often in women than men,[12][13] and is less prevalent among children and adolescents.[10] The quality of life is "particularly and uniquely disrupted" in CFS.[14] A prognosis study review calculated a median untreated patient full recovery rate of 5%, and the median improvement rate at approximately 40% compared to pre morbid status.[15]
I believe the strike through identifies the portion of the sentence that sources differ on. Ward20 (talk) 03:01, 10 March 2011 (UTC)
- Yes the struck through text is problematic. There is also cite problem. I’ve set out the issues below:
(1) Cite problem: PMID 15574853-8 shows as [9] on current article = http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx
While http://www.ncbi.nlm.nih.gov/pubmed/15574853 is
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079668/?tool=pmcentrez
which is ref [10] on the current article text and PMID 15574853-8 appears invalid
(2) There’s disagreement on the age profile between the sources.
- Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s.
- The illness occurs most often in people in their 40s and 50s, but people of all ages can get CFS
ref [10] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079668/?tool=pmcentrez Figure 4 records peak Incidence in the 45 – 65 age range but this is data from 1991 to 2001 at a time the report itself shows confusion within primary care over respective diagnoses, it certainly predates the current NICE guidance. In any case Incidence isn’t Prevalence, particularly in an illness where the diagnosis was in a state of flux.
Given that there is such disagreement beween sources on prevalence I think removing the stuck through text is the only way forward and the disagreement is then dealt with in the main text. With that removal made I agree with the 2nd paragraph edit as proposed. Is it worth waiting till we have agreement on the third para amendments before making the change to the 2nd para, given that the proposal is to rearrange the order ?
--In Vitro Infidelium (talk) 15:06, 12 March 2011 (UTC)
- What do you think of this rewording of the first phrase: from "Studies have reported numbers on the prevalence of CFS that vary widely..." to "Estimates of CFS prevalence vary widely...". -- Scray (talk) 15:59, 12 March 2011 (UTC)
- Agree. --In Vitro Infidelium (talk) 18:40, 12 March 2011 (UTC)
- Similarly, the last sentence of this paragraph is unwieldy. Instead of, "A prognosis study review calculated a median untreated patient full recovery rate of 5%, and the median improvement rate at approximately 40% compared to pre morbid status.", how about this: "Without treatment, about 5% of people recover completely, and 40% have improvement in their symptoms."? For the lede, I really think we should focus on making it accessible to all readers and avoid jargon. -- Scray (talk) 16:06, 12 March 2011 (UTC)
- This is more problematic. The text does need to be more reader friendly but we should be cautious not to introduce avoidable ambiguity, for instance: "Without treatment, about 5% of people recover completely” could be understood to imply that a) there is treatment that can effect full recovery (there is none) b)treatment could have a negative impact.
- There are however some wider problems with the source:
- 1. The source (a prognsis study) presents a ‘calculation’, not an observation, so the source doesn’t actually support the definitive statement "Without treatment, about 5% of people recover completely”
- 2. The source doesn’t actually say that treatment was not delivered, what it says is: This review looks at the course of CF/CFS without systematic intervention. It is entirely feasible that numerous treatments were delivered to multiple patient cohorts across the meta study population, it's just that these treaments were not delivered as systematic interventions.
- Having gone through this source in detail, I’d now suggest pulling the entire sentence rather than trying to cobble it into something readable. The source makes a strong statement about systematic interventions: However, there is increasing evidence for the effectiveness of cognitive behavioural and graded exercise therapies. Medical retirement should be postponed until a trial of such treatment has been given. Which has been rendered largely redundant by http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract the details of which show that only very modest improvements in performance are achieved by CBT and GET and that these interventions are inappropriate for a sizeable portion (the most ill) of the affected population.
- --In Vitro Infidelium (talk) 18:40, 12 March 2011 (UTC)
- I agree with deletion of this sentence. -- Scray (talk) 02:14, 13 March 2011 (UTC)
- PMID 20046339 may be useful, although it only has 3 citations according to Google Scholar:
- "Moreover, the prognosis of CFS, even when treated, is often poor."
- "Moreover, both clinical experience[4] and research[5] indicate that CFS is often difficult to treat."
- _Tekaphor (TALK) 02:20, 13 March 2011 (UTC)
- I don’t think low cite numbers should be an inhibition to use for a subject such as CFS where the ‘expert’ population is low, where there is only very limited broader medical discipline interest and the condition is subject to ongoing research with little in the way of cross discipline consensus. High cite rates can result from a limited number of researchers repeatedly quoting each other, and from simple chronological durability – the older the publication, the more cites it picks up. With a medical condition for which neither cause nor treatment is a settled scientific issue and where research is advancing, representing a range of disciplinary approaches and the use of more recent publication may be more important than cite numbers when choosing references.
- I do have reservations about using PMID: 20046339. As with other treatment references that affirm CBT and GET as evidence based treatments, it has been supplanted in relevance by http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract which although it confirms CBT and GET as affording benefit to some CFS patients, the overall benefit is profoundly limited. Further the quote "Moreover, the prognosis of CFS, even when treated, is often poor." is unsupported by any referenced studies while the quote “Moreover, both clinical experience[4] and research[5] indicate that CFS is often difficult to treat." is supported by a reference to a child abuse study(!) and to a now supplanted CBT study.
- On balance I’d suggest we avoid dealing with prognosis in the lede; it is an issue which should be dealt with in the main text but is too problematic for a simple lede statement. I think the main problems are well represented here: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/DH_4879499
- --In Vitro Infidelium (talk) 10:26, 13 March 2011 (UTC)
- PMID 20046339 may be useful, although it only has 3 citations according to Google Scholar:
As I understand it, this is the current proposed version of paragraph 2:
Estimates of CFS prevalence vary widely,[7] from 7 to 3,000 cases of CFS for every 100,000 adults,[9] but national health organizations have estimated more than 1 million Americans and approximately a quarter of a million people in the UK have CFS.[10][11] CFS occurs more often in women than men,[12][13] and is less prevalent among children and adolescents.[10] The quality of life is "particularly and uniquely disrupted" in CFS.[14]
I do think this is an improvement. Do we have consensus? -- Scray (talk) 13:16, 13 March 2011 (UTC)
- I think it's an improvement that can be implemented now. I do believe it might be helpful to have some sort of statement about recovery that could be worked out later, Talking points:
- Recovery from chronic fatigue syndrome is extremely variable in duration and to the degree of resolution.[8]
- A minority of persons improve relatively quickly, but when symptoms resolve slowly the tendency is for the illness to persist for many years."[9]
- "Research suggests that early diagnosis and treatment of CFS can increase the likelihood of improvement."[10]
- In Vitro Infidelium, it was sloppy of me to not look more into PMID 20046339 before suggesting it. Sorry about that. I agree on the cite number issue. - Tekaphor (TALK) 00:44, 14 March 2011 (UTC)
- I agree with Ward20's assessment and suggestion. - Tekaphor (TALK) 00:44, 14 March 2011 (UTC)
- Done - paragraph replaced. -- Scray (talk) 01:19, 14 March 2011 (UTC)
- I agree with Ward20's assessment and suggestion. - Tekaphor (TALK) 00:44, 14 March 2011 (UTC)
- Is there consensus on swapping paragraph 2 with 3? I'm fairly neutral on it except for establishing the notability sooner. Ward20 (talk) 01:30, 14 March 2011 (UTC)
XMRV Update
I edited the XMRV statement, which was potentially misleading. The WPI researchers did not find XMRV in a majority of CFS patients in the United States. That would have been a large study indeed! The section was also updated to include the recent contamination studies. Keepcalmandcarryon (talk) 16:47, 25 March 2011 (UTC)
- In order to correct this mistake, surely It would have been better to reword the original phrase:
- "A 2009 study reporting the retrovirus xenotropic murine leukemia virus-related virus (XMRV) in the blood of a high percentage of individuals suffering from chronic fatigue syndrome in the United States has generated significant interest in a possible linkage."
- as the amended phrase:
- "A 2009 study reporting the retrovirus xenotropic murine leukemia virus-related virus (XMRV) in the blood of the majority of CFS patients tested has generated significant interest in a possible linkage".
- Also, no mention is made of the general criticisms that replication studies do not in fact replicate the original WPI study, and I think this is a very important piece of info. Drgao (talk) 04:07, 31 March 2011 (UTC)
- WOW! My very first contribution to this CFS page gets deleted within a few minutes, under the notification: Reverted to revision 421384894 by Sciencewatcher; A more reliable source is required to debunk those peer-reviewed studies".
- How charming. And also mistaken: there is no debunking going on, merely a presentation of both sides of the debate. You have deleted one side of the debate, and thereby have left this article biased. Drgao (talk) 04:46, 31 March 2011 (UTC)
- Since when is science and medicine subject to "debate". Provide reliable sources that support your edits, and you're more than welcome to add your edits. However, the statements already in place have peer reviewed journal articles. I suggest you find the same. OrangeMarlin Talk• Contributions 05:05, 31 March 2011 (UTC)
- How charming. And also mistaken: there is no debunking going on, merely a presentation of both sides of the debate. You have deleted one side of the debate, and thereby have left this article biased. Drgao (talk) 04:46, 31 March 2011 (UTC)
- My edit a few hours ago on the XMRV section was as follows (but this was challenged/deleted by Orangemarlin):-
- A 2009 study reporting the finding of a retrovirus, xenotropic murine leukemia virus-related virus (XMRV), in the blood of the majority of CFS patients tested has generated significant interest in a possible linkage. Numerous independent laboratories have detected no XMRV in CFS patient samples.[3][19] Researchers suspect that contamination was responsible for the initial positive results, a hypothesis supported by several independent studies.[20][21] However, the Whittemore-Peterson Institute (WPI) have pointed out[22] that these independent laboratories did not in fact replicate the original WPI study's methodologies, and the WPI assert they cannot be classed as replication studies.
- This suggested paragraph includes both sides of the contamination versus non-replication controversy. I have no idea of the truth of the XMRV story, but neither does anyone else. It is entirely premature to assert that the XMRV story is debunked. Virtually all of science and medicine has conflicting studies. It takes many years for the truth to emerge. You don't want eliminate one side of the dialectic.
- What does everyone think? Drgao (talk) 06:10, 31 March 2011 (UTC)
- "Use of unreliable sources to refute reliable ones is not acceptable. See WP:MEDRS."
- (edit conflict) Actually, MEDRS says quite the opposite (my own emphasis added): "Individual primary sources should not be cited or juxtaposed so as to "debunk" or contradict the conclusions of reliable secondary sources, unless the primary source itself directly makes such a claim." In this case, the claim that WPI makes (in the second sentence of the first paragraph) is accurate and that reasoning has been cited by a couple of different sources as being a potential explanation for the variance in findings. A secondary source would be better, but the revisions do accurately summarize current scientific controversy and present both sides without giving undue weight to either side. Both sides of the debate have presented evidence that can't be ignored, but neither has entirely proven their point yet.
- Also, please try to avoid edit summaries like "Reply to SPA". This only serves to inflame things, and a quick glance at his edits would indicate an interest in a wide variety of medical topics apart from CFS. – RobinHood70 talk 06:26, 31 March 2011 (UTC)
- WPI's statement was on their website, so essentially you are saying we should use a non-reliable medical source (WPI's website) to contradict multiple MEDRS sources. While I think we could include that statement on WPI's wikipedia page, I don't think it should be included here as it gives too much weight. Bear in mind that we don't 'give both sides' in wikipedia: we present the sources based on their weight and reliableness. The scientific consensus seems to be that these other studies HAVE thoroughly debunked the CFS/XMRV hypothesis, so adding WPI's statement here would give undue weight to a minority opinion. --sciencewatcher (talk) 14:07, 31 March 2011 (UTC)
- The WPI source is not only unreliable; it's now outdated and wrong. One of the recent Towers studies followed the WPI protocol and detected no XMRV. The authors also took care to select CFS patients with considerable disability, apparently to counter the WPI implication that the patients in the other studies are not truly sick or sick enough. Keepcalmandcarryon (talk) 15:45, 31 March 2011 (UTC)
- @RobinHood...see the two comments above. You misinterpreted MEDRS to benefit your POV. As mentioned, unreliable sources cannot trump reliable ones. If we did this with every CAM article, then press releases from GNC will be more valuable than the dozens of clinical trials. Moreover, the editor is a SPA. Case closed. OrangeMarlin Talk• Contributions 15:49, 31 March 2011 (UTC)
(←) First off, it's not my point of view; I'm entirely agnostic on XMRV. Second, it's not "trumping" the more reliable ones, it's presenting both sides of a debate that is still ongoing. As I said above, both sides of the debate have presented points that can't be entirely dismissed. I agree that WPI's source is less than ideal, but there are other sources like the Blood XMRV group that have mentioned numerous problems with a lack of exact replication. As I've said already, a better source is needed, yes, but XMRV has not yet been dismissed by the scientific community at large so far as I know. I'm not familiar with the Towers study, nor have I seen any reviews of it, so perhaps there's something more recent that proves it beyond a shadow of a doubt, but the last stuff I read at the beginning of the month indicated that the issue was still being debated.
Reviewing the above statements, I see myself and Drgao in agreement with the changes, and SW, KCACO, and OrangeMarlin against the changes. That's not a consensus for either version of that paragraph. Can I suggest taking this to the next step, whatever that is these days? I'm not as involved as I used to be here and the processes have changed quite a bit.
I would also like to know how you see Drgao as being an SPA and why it's "case closed" to you. Ignoring his user space edits, which were rather numerous, I saw edits on several topics unrelated to CFS in any way. – RobinHood70 talk 21:43, 31 March 2011 (UTC)
- Two issues. First, there isn't much of a debate about whether scientists have "replicated" WPI's study. The idea that there's one combination of oligos and one combination alone that can amplify part of a 9 kilobase genome is interesting, no doubt, but it isn't really consistent with molecular biology. The assays other groups have used are at least as good as WPI's assay and include real-time assays that have the added specificity of a probe, not just primers. A press release from a single-issue organisation does not merit mention alongside the medical literature, whether two or seventy-two editors say it does. (And any criticism published before the study I mentioned is now out-of-date.) Wikipedia policies are not up for a vote here.
- Second, if you have issues with another editor, take them to their talk page. Your two cents is quite valuable, I'm sure, but a bit off-topic here. Keepcalmandcarryon (talk) 22:26, 31 March 2011 (UTC)
- I apologise for getting the recent Towers paper mixed up with one by McClure. The study that replicated the WPI experimental conditions and looked at patients with "considerable disability" not just a CFS diagnosis is Erlwein, et al. Other studies that used the WPI primer sets and found no XMRV are: Groom, et al, Switzer, et al and Henrich, et al. It's clearly wrong, and has been for some time, to suggest that independent researchers have not attempted to replicate WPI's results. Keepcalmandcarryon (talk) 22:40, 31 March 2011 (UTC)
- Also, if we were going to get into the territory of using press releases and news stories (which we're not), we would need to take into condiseration:
- - the fact that WPI has been criticised for selling an unvalidated test to patients (and they're still selling it even though it is now largely discredited).
- - the fact that WPI made a very unscientific statement accusing other scientists of engaging in a conspiracy theory with insurance companies to deliberately sink their research (WTF?!)
- - the fact that the original study by WPI had quite a lot of criticisms from other scientists.
- - the fact that Mikovits said "It is clearly a human infection. It is clearly circulating through the population as is our fear and your fear." (prof Racaniello responded "Saying that is just inciting fear,")
- WPI is clearly WP:FRINGE, so giving their opinion equal weight to other scientists is a gross violation of wikipedia policies and common sense. --sciencewatcher (talk) 23:39, 31 March 2011 (UTC)
- I don't know that I'd go so far as to say that they're fringe, though as I said, I've been agnostic on this precisely because I have some concerns with how they've gone about it and the statements they've made, and I said right at the beginning that their detection of—what was it, 96% in the post-release info?—seemed astoundingly high given the vagaries of CFS diagnosis. I'm not at all convinced that XMRV is in any way related to CFS, but neither am I convinced yet that it's impossible. Being a CFS patient and keeping up with that side of things, I've seen various presentations by doctors and researchers that have presented some legitimate concerns with both sides of the research including the contamination theories. They're not at the point of formal reviews yet, but I think it's grossly inaccurate to say that the debate is over or that the theory has been entirely debunked.
- In the end what it comes down to is that if we're going to say that these theories have been debunked or disproven, then I think it would behove us to cover at least the fact that WPI asserts that no true replications have been done and that some scientists agree with this claim, along with McClure or whomever's claim that in fact they have. Otherwise, we're just not presenting a balanced piece. That's my view, but I'm going to bow out of this discussion for the moment, as I'd like to hear from others and I don't think we're really forming any kind of consensus here other than claims of "you're biased, I'm neutral" from just about everyone in the discussion. – RobinHood70 talk 00:16, 1 April 2011 (UTC)
- Yes, like RobinHood I am agnostic on this, though it does seem to me that you are burying XMRV prematurely; however, I am not going contend it any further. In general, my misgivings about XMRV is that is has made much larger headlines that other viruses, like enteroviruses and herpes family viruses, which many studies suggest plays a major role in CFS etiology. However, I think most people would agree that the WPI have made a huge impact in putting CFS/ME on the map, and placing CFS much more in the public eye that ever before. I only hope that this will equate to more research funding for CFS.
- TO: Keepcalmandcarryon. You seem to know about virology. I'd be interested in hearing your views on the studies that found murine leukemia virus-related viruses in CFS patients[23]. I am not entirely sure why these MLV-related viruses studies did not attract more attention (or perhaps they have, and new results may be published soon). Any ideas?
- TO: Sciencewatcher. The notion that the psychiatrists that posit (like you) that CFS is a purely psychosomatic condition have a somewhat nepotistic relationship with disability insurers such as UNUM and Swiss Re does not not come from the WPI in particular, but has been around for decades, and has been mentioned by people like Professor Hooper, journalist Hilary Johnson, and many CFS patient organizations. I don't think this is "conspiracy theory"; it is too well known. In fact, Wessely is now including his insurance company affiliations on the declared "Conflicts of Interest" section of his latest academic publications. So even Wessely recognizes there is a conflict of interest.
- In fact, it is a pity that Wikipedians do not generally state their own passions and cherished beliefs. As most people are aware, Sciencewatcher holds the passionate view that CFS is a purely psychosomatic condition, and much of Sciencewatcher's input is informed by that particular viewpoint. There is no problem with that, as no doubt many Wikipedians have their own biases; it would just be nice if these biases were made explicit. Drgao (talk) 00:41, 1 April 2011 (UTC)
- What WP editors believe is not important. Our focus must be edits and content. The preponderance of evidence strongly favors contamination as a source of XMRV (and, similarly, MLV-like) sequences in CFS (and prostate cancer) tissues. Let's not have a meta-discussion; rather, let's use this Talk page to discuss this article's content. -- Scray (talk) 01:22, 1 April 2011 (UTC)
- In fact, it is a pity that Wikipedians do not generally state their own passions and cherished beliefs. As most people are aware, Sciencewatcher holds the passionate view that CFS is a purely psychosomatic condition, and much of Sciencewatcher's input is informed by that particular viewpoint. There is no problem with that, as no doubt many Wikipedians have their own biases; it would just be nice if these biases were made explicit. Drgao (talk) 00:41, 1 April 2011 (UTC)
- The preponderance of people here may strongly favor contamination as the explanation (which it may be), but that is just an interpretation. This story is far from over.
- Remember also that the study that found XMRV did not just involve the Whittemore-Peterson Institute, but also the Cleveland Clinic and the National Cancer Institute. And remember too that the MLV-related viruses studies were independently conducted by the National Institutes of Health and the FDA. This means that the gamma retroviruses XMRV and MLV-related viruses were found in CFS patients in five laboratories, the WPI, NCI, CC, NIH and the FDA. These are some of the world's foremost labs. Pitted against them is a bunch of nondescript labs that can't seem to find XMRV and MLV-related viruses.
- There are also good simian XMRV studies at Emory that have recently been published. The last paragraph of this Emory links says: "One of the most surprising things at the conference was that not only is there disagreement about whether XMRV is associated with prostate cancer or CFS, but both sides are getting better and better data supporting their positions,” says Petros. “That tells me we still have a long way to go.”
- To my mind, the position that Wiki ought to take on gamma retroviruses in CFS is agnostic, not atheist nor believer. Drgao (talk) 06:35, 1 April 2011 (UTC)
- As Scray correctly noted, this is the talk page for the CFS article. It is not a forum for discussion of editors' beliefs on XMRV and support for them in non-peer-reviewed writings. To date, the WPI association study has not been replicated, XMRV is a likely contaminant and there is no evidence in the WPI paper or any other peer-reviewed publication that CFS is caused by XMRV. One could in fact make the case that XMRV should not be mentioned specifically in this article. Keepcalmandcarryon (talk) 13:56, 1 April 2011 (UTC)
- To my mind, the position that Wiki ought to take on gamma retroviruses in CFS is agnostic, not atheist nor believer. Drgao (talk) 06:35, 1 April 2011 (UTC)
- I understand that the authors of the MLV-related viruses study hold the view that their positive results count as a replication study. So initial the finding of γ-retroviruses in CFS patients by the WPI, NCI and CC has been replicated twice, by the NIH, and by the FDA.
- I find that getting to know another editor's beliefs helps with rapport, and so should reduce contentions, and this ultimately creates a better article. Though you are right that this is not the right place to discuss beliefs; it would be good if there were a dedicated section on the user page for this.
- Only one study has claimed XMRV-CFS association and possible causation, and that study was lead by WPI. Samples were sent to one lab at Cleveland Clinic (Silverman, who has since cut his ties with WPI and is reportedly concerned about contamination), and one lab at NCI, Mikovits's home lab, where she did her PhD and worked for many years. It is somewhat inaccurate to say that Cleveland Clinic and the NCI as organisations (or for that matter the FDA and NIH) have put their full weight behind these results. In any case, NCI and NIH researchers have also reported negative results. Beside the WPI study, all other CFS studies have been negative for XMRV, including Lo, et al., whether the authors use WPI's methods or develop and validate their own methods. That's what our article currently states, and that's accurate. Keepcalmandcarryon (talk) 19:47, 1 April 2011 (UTC)
(out) Why is XMRV even mentioned in the CFS article. There is only one study that makes a putative link, and even that does not relate to disease causation. The only link between XMRV and CFS is that some researchers hypothised a link and came up with data that proved their hypothesis, which to date no other researchers have been able to reproduce. Shouldn't the XMRV section be deleted altogether, until such time that there is a scientific consensus of an actual linkage ? There are hundreds of studies that prospectively connect all sorts of things to CFS, none of which say anything substantive about CFS, XMRV is just one of those prosective connections. --In Vitro Infidelium (talk) 17:06, 3 April 2011 (UTC)
- Answering the "Why XMRV in this article" point: because it was already in here, and there is still controversy over its possible involvement in ME/CFS. Readers will expect it to be covered. What this content should do is to present a short balanced summary, which it does in a couple of sentences. What is perhaps a more appropriate question is why this controversial association merits a separate section rather than a sentence or two in the parent Pathophysiology section. -- TerryE (talk) 17:31, 3 April 2011 (UTC)
<--Out. I believe the XMRV material does merit a separate section due to the amount to notability from the media. The positions should be explained using medrs sources however. Examining the material and references available, it appears the viewpoints can be presented using WP:MEDRS sources.
- A 2009 study reporting the retrovirus xenotropic murine leukemia virus-related virus (XMRV) in the blood of the majority of CFS patients tested has generated significant interest in a possible linkage.Menéndez review article
- Subsequently, numerous independent laboratories have detected no XMRV in CFS patient samples,Menéndez review article (Weiss article but note titled opinion and doesn't appear to be peer reviewed) but some authors of the 2009 study believe that by using multiple methods of analysis and carefully replicating the methods used in the positive studies, XMRV infection will be found. Mikovits review article
- Researchers suspect that contamination could be causing false positive results, a hypothesis supported by several independent studies. Smith RA viewpoint article Cohen's news story is arguably not medrs because it's reporting on conference presentation data that haven't yet been published in a peer reviewed journal.
- Other researchers state contamination would not cause all the positive findings of XMRV because several different types of affirmation have been found
fromby independent laboratories.Silverman review
Arbitrary break
As far as I know, there is no medrs review that states a consensus that any of these positions are more correct than others. The new Erlwein study that didn't find XMRV in CFS states, "Our serological data are consistent with the idea that XMRV may be present in the human population at some level." is even somewhat puzzling if all positive results are due to contamination. When the Medrs reviews state a consensus I am sure it will be added to the article. Ward20 (talk) 19:06, 3 April 2011 (UTC)
- Terry E's suggestion is good: integrate XMRV into the rest of the section. I disagree with Ward20 on adding the beliefs of the lead author of the original study or even the Silverman review, as these are neither independent nor up-to-date after the many recent reports on contamination, phylogeny and antibody non-specificity. Keepcalmandcarryon (talk) 14:11, 4 April 2011 (UTC)
- As for "is even somewhat puzzling if all positive results are due to contamination", Ward20 would be right if this were indeed in the article. However, we do not say that all positive results are due to contamination. Rather, we state that researchers suspect and that data from several studies are consistent with this hypothesis. Keepcalmandcarryon (talk) 14:16, 4 April 2011 (UTC)
- The description presently in the article, "reported an association of the retrovirus..." is not informative as to what the association was. Using recent conference news reports and primary sources to justify ignoring reviews less than a year old about opposing opinions is not consistent with WP:NPOV or WP:MEDRS. The article also states, "Researchers suspect that contamination was responsible for the initial positive results, a hypothesis supported by several independent studies." (emphasis mine) which is not supported by the references given. The references only say researchers suspect contamination was responsible for an unknown amount of false positive PCR results. Ward20 (talk) 20:31, 4 April 2011 (UTC)
- There is only one report of positive results. Every subsequent report has been negative. A secondary source was used as support. Keepcalmandcarryon (talk) 14:22, 5 April 2011 (UTC)
- The description presently in the article, "reported an association of the retrovirus..." is not informative as to what the association was. Using recent conference news reports and primary sources to justify ignoring reviews less than a year old about opposing opinions is not consistent with WP:NPOV or WP:MEDRS. The article also states, "Researchers suspect that contamination was responsible for the initial positive results, a hypothesis supported by several independent studies." (emphasis mine) which is not supported by the references given. The references only say researchers suspect contamination was responsible for an unknown amount of false positive PCR results. Ward20 (talk) 20:31, 4 April 2011 (UTC)
- Nature (17 March 2011) had an interesting article about Mikovits, and the whole XMRV story. I have copied this paragraph for you: Ian Lipkin, a microbial epidemiologist at Columbia University in New York, has a reputation for getting to the bottom of mysterious disease–pathogen links. His team debunked the association between Borna disease virus and chronic fatigue, for example. Now he is spearheading the $1.3-million effort funded by the US government. He is leaving the testing to three labs: Mikovits’s at the WPI, Alter’s at the NIH and the CDC. Each will receive coded samples of white blood cells and plasma from 150 patients with chronic fatigue and from 150 healthy controls. The labs will test for XMRV using their method of choice. Lipkin will crunch the data and unblind the samples.
- If they don't find XMRV in this study run by Ian Lipkin, then it won't look good for XMRV. Perhaps wait until the outcome? Drgao (talk) 04:04, 6 April 2011 (UTC)
- Yes, if this study is negative, we should probably eliminate any specific mention of XMRV in the section; after all, we don't mention HTLV, Borna or the many other viral and bacterial infections that have been proposed to have CFS associations. For now, the interest and coverage seems sufficient to retain a brief description of the XMRV situation. Keepcalmandcarryon (talk) 14:19, 6 April 2011 (UTC)
- Wikipedia articles ought to try to serve the needs of readers. As long as XMRV is a prominent theme of public debate, our article ought to discuss the issue. Looie496 (talk) 15:48, 6 April 2011 (UTC)
- Yes, Looie, but we should always follow the key principles like not giving undue weight to fringe ideas. Right now the XMRV is totally unproven except for the WPI crowd. This would be like giving undue weight to the HIV deniers and say that there is a theory that HIV drugs cause AIDS. We do, but in the denialist article. The fact is that a lot of researchers think that CFS is nothing more than undiagnosed diseases that have been lumped together (my personal feeling, since selection bias deletes all the examples where CFS has ended up being some other disease). XMRV probably will show up to be nothing. When that happens, let's put it in the article as one more crazy theory that was debunked. But for now, to say that it "might" be an indicator is totally unproven. As Drgao says, let's wait for an answer, since Wikipedia shouldn't predict the future. OrangeMarlin Talk• Contributions 20:50, 12 April 2011 (UTC)
- Not for for the first time I'm confused about what WP policy requires here, 'meeting reader expectations of public debate' sounds journalistic rather than encyclopaedic. As a subject XMRV is amenable to encyclopaedic treatment, with CFS recorded as a feature of speculative research, but the only encyclopaedically justifiable connection between XMRV and CFS is that some scientists have looked for XMRV in samples taken from patients who under varied (symptom based) formulae of diagnostic criteria fall within a broad definition of CFS. Despite the research there is currently no scientific consensus on any infective or causative connection between XMRV and CFS. To me the connection appears far too tangential to warrant inclusions in the CFS article, such that removal of the XMRV reference is required until new scientific publication warranted inclusion ? Answers from other editors would assist my understading of WP policy. Orange Marlin apologies if I've just repeated what you were saying - I'm unclear what your conclusion was - keep for now, or remove for now ? --In Vitro Infidelium (talk) 17:13, 13 April 2011 (UTC)
- I don't think there's a clear policy-based requirement here. Personally, I lean towards leaving it out; XMRV is distinguished only by being the latest in a string of specific infections that have been hypothesised to associate with or cause CFS. Ultimately, none of these hypotheses has been supported by data, and it certainly looks as if XMRV is going that way, too. That said, there has been considerable coverage of the controversy in the news media and the scientific literature; for some, including several well respected editors, this is sufficient for inclusion, at least unless and until the debunking is complete. You're certainly correct that Wikipedia should not be driven by "meeting reader expectations" when these expectations conflict with the verifiable information from reliable sources. There are people who fervently believe that CFS is caused by HHV-6 or XMRV or some other specific infection, and of course they would like complete and uncritical coverage of these ideas here. However, sources, not readers' desires, are the proper underpinning of an encyclopaedia. Keepcalmandcarryon (talk) 17:57, 13 April 2011 (UTC)
- Not for for the first time I'm confused about what WP policy requires here, 'meeting reader expectations of public debate' sounds journalistic rather than encyclopaedic. As a subject XMRV is amenable to encyclopaedic treatment, with CFS recorded as a feature of speculative research, but the only encyclopaedically justifiable connection between XMRV and CFS is that some scientists have looked for XMRV in samples taken from patients who under varied (symptom based) formulae of diagnostic criteria fall within a broad definition of CFS. Despite the research there is currently no scientific consensus on any infective or causative connection between XMRV and CFS. To me the connection appears far too tangential to warrant inclusions in the CFS article, such that removal of the XMRV reference is required until new scientific publication warranted inclusion ? Answers from other editors would assist my understading of WP policy. Orange Marlin apologies if I've just repeated what you were saying - I'm unclear what your conclusion was - keep for now, or remove for now ? --In Vitro Infidelium (talk) 17:13, 13 April 2011 (UTC)
- Yes, Looie, but we should always follow the key principles like not giving undue weight to fringe ideas. Right now the XMRV is totally unproven except for the WPI crowd. This would be like giving undue weight to the HIV deniers and say that there is a theory that HIV drugs cause AIDS. We do, but in the denialist article. The fact is that a lot of researchers think that CFS is nothing more than undiagnosed diseases that have been lumped together (my personal feeling, since selection bias deletes all the examples where CFS has ended up being some other disease). XMRV probably will show up to be nothing. When that happens, let's put it in the article as one more crazy theory that was debunked. But for now, to say that it "might" be an indicator is totally unproven. As Drgao says, let's wait for an answer, since Wikipedia shouldn't predict the future. OrangeMarlin Talk• Contributions 20:50, 12 April 2011 (UTC)
- Wikipedia articles ought to try to serve the needs of readers. As long as XMRV is a prominent theme of public debate, our article ought to discuss the issue. Looie496 (talk) 15:48, 6 April 2011 (UTC)
(←) This doesn't happen often :), but I'm generally in agreement with what KCACO has said. I think for now, since XMRV is so much in CFS-related news, it's appropriate to keep it in the article. While it could be considered recentism, at the present time, I think you'll find that anybody who is even tangentially involved with CFS has heard about XMRV. But it's not inaccurate to state that this is just one more theorized viral association in a long line of them. MEDRS says to present any significant controversies about a topic; specifically, the Summarize scientific consensus section of MEDRS states that we should present any minority viewpoints in the context of the majority viewpoint. I believe that's what we're doing in how we're describing XMRV. I don't believe that we're giving it undue weight given its current popularity as a CFS-related topic. The debate about its relation to CFS isn't over yet, even in light of the numerous studies that have failed to find XMRV, but we're fairly clearly presenting that fact in the article. While I'm not willing to pin a specific removal point down to any single event, I believe that the time is coming when XMRV will have a more clear-cut consensus on its association—or, as seems more likely, its lack thereof—with CFS. At that time, we can consider bumping it down to a single sentence or even removing it outright. For now, though, it's the topic of concern for most CFS patients, advocates, and researchers, so to ignore it in the article completely would seem to me to be fundamentally against the idea of providing appropriate coverage of the topic of CFS. – RobinHood70 talk 21:02, 13 April 2011 (UTC)
- To attempt to answer IVI's question, Due and undue weight is usually assessed as far as the inclusion and amount of space to give a topic in an article. Very roughly, WP articles mirror the amount and quality of reliable sources about medical claims reporting on this topic verses other topics, but there is also latitude for editing consensus under WP:IAR. I agree most with RobinHood70's analysis to keep the present weight and note there are currently many reliable sources reporting on this topic, but what is needed is a quality review to summarize a scientific consensus. Ward20 (talk) 21:52, 13 April 2011 (UTC)
possible inclusion in differential diagnosis
It has been proposed by some specialists that Chronic Fatigue Syndrome is a form of Addison's disease (referred to as adrenal insufficiency or hypoadrenalism). The following evidence has been presented 'In view of the 36 features shared by Chronic Fatigue Syndrome and Addison’s disease, including hypocortisolism and a host of neuropsychological complaints[24][25][26][27][28][29][30] and investigations of the effects after supplementation with mineralocorticoids (fludrocortisone), low-dose hydrocortisone (cortisol) in the treatment of CFS’.[31][32][33][34][35]
References include several peer review journals, and randomized double blind trial. Although minority view, due to confusion around cfs diagnosis may be worthwhile as a small mention for any public who wish to look into who may have Addison’s and not cfs, perhaps addition into section Co-morbidity (some patients who display cfs symptoms as having adrenal insufficiency) or differential diagnosis.— Preceding unsigned comment added by SpringSummerAutumn (talk • contribs)
- It would be far more useful to give a single high-quality review article that discusses this idea than to list a bunch of primary sources. Looie496 (talk) 16:31, 2 April 2011 (UTC)
- At the very least the "some specialists" should be identified by name and the specific publication title be given. The proposal needs to be appraised in the light of WPNOT [11]
Why is M.E. redirected to this page?
They are separate illnesses, Chronic Fatigue Syndrome is based only on symptoms of unknown cause and is a part of M.E. However Myalgic Encaphalomyelitis is a neurological disorder.
This is sensitive among the M.E. community who are aware of countries where no distinction takes place and misdagnosis occurs commonly. —Preceding unsigned comment added by 86.146.68.166 (talk) 04:09, 14 March 2011 (UTC)
- You've answered your question as part of what you asked. In most countries that I'm aware of—except, I think, your own—the distinction between ME and CFS just isn't made. They pick one name or the other, or one of several less common variants like CFIDS, and just use that. Even in the ME/CFS community, it's not as sensitive as you seem to suggest. I'm part of the community, and generally just use CFS, though I'm not averse to ME/CFS until we know more. Right now, I actually object to terming anything just ME, as we just can't prove that everybody who fits the profile for ME (using, for example, the Canadian Consensus Definition) actually has any kind of brain disease at all. They might, but we just don't know.
- Moreover, as explained in the Naming section, the literature uses the two interchangeably, and I think it would actually harm the Wikipedia articles rather than help them to split it off into two different articles with nearly all the same information.
- Finally, on a personal note, I object to the two names on another front as well: it divides the community when we need to be united and it does so by perpetuating the very views that we as a community are trying to fight! There's the tendency, once such a split is made, for those with ME to start getting into the mindset of "I have a real disease, because I demonstrably have a virus affecting my brain; you just have chronic fatigue the doctors can't figure out, so you don't count." – RobinHood70 talk 04:42, 14 March 2011 (UTC)
- Can we dispose of this M.E IS a neurological condition proposition, once and for all. It has been hypothesised that M.E is a neurological condition but that hypothesis has never been ‘proved’, thus there is no reliable source that an encyclopaedia can use to support the statement that “M.E IS a neurological condition” . Quite separately the WHO (as noted on the article page) catalogues CFS and M.E under a Neurological Conditions heading without giving any diagnostic basis for that listing. To argue that the WHO catalogue is definitive, is to allow that a book about travel given a Dewey number usually applied to History, must by definition be a ‘History Book’, it’s a logical fallacy and can not inform the editing of this article - Classification is not Diagnosis. The current UK guidance uses the term CFS/M.E. --In Vitro Infidelium (talk) 08:45, 14 March 2011 (UTC)
- it has not 'hypothesised' whether ME is a neurological condition. To make things clear, and by the very nature of the name change, myalgic encephalomyelitis that it is a 'hypothetical' condition in that case, because the very name describes a neurological nature. it IS neurological whether everyone who claims without a true diagnostic test, or whether everyone with CFS actually has it. This is the basis for the original 'name change'.
- also, evidence from SPECT and PET Scans, Natural Killer Cell Function test, Rnase-L antiviral dysregulation, and Blood Flow. do exist, but thats not an argument i want to get into. —Preceding unsigned comment added by 86.146.68.166 (talk) 04:10, 16 March 2011 (UTC)
- You still haven't really provided any source, other than your own assertions, that Myalgic Encephalomelitis is a separate condition and that this is agreed upon by large portions of the medical community. By virtue of the fact that the names are used interchangeably throughout medical literature, it seems evident to me that no such widespread agreement exists, so I don't see why Wikipedia should separate the articles until it does. If you have evidence to the contrary from reliable medical sources, by all means present it and we can move forward with your idea. If you don't, however, then it's not Wikipedia's policy (or even its place) to take a position on this kind of thing that runs contrary to popular scientific usage and belief. – RobinHood70 talk 06:29, 16 March 2011 (UTC)
- Also, this debate has been had before, numerous times:
- Talk:Chronic fatigue syndrome/ME archive#NOTE: PAGE MERGE
- Talk:Chronic fatigue syndrome/ME archive#Redirect or Not
- Talk:Chronic fatigue syndrome/ME archive#ICD-10 code and choice of name
- Talk:Chronic fatigue syndrome/ME archive#CDC: ME is Distinct
- Talk:Chronic_fatigue_syndrome/Archive_2#CFS, ME, PVFS
- Talk:Chronic_fatigue_syndrome/Archive_3#POV forking
- Talk:Chronic_fatigue_syndrome/Archive_4#More forking, splitting, disambiguating
- Talk:Chronic_fatigue_syndrome/Archive_4#Myalgic Encephalomyelitis
- Talk:Chronic_fatigue_syndrome/Archive_6#Question about page redirection
- Talk:Chronic_fatigue_syndrome/Archive_7#CDC & ME
- Talk:Chronic_fatigue_syndrome/Archive_7#Nomenclature
- Talk:Chronic_fatigue_syndrome/Archive_8#ME or CFS
- Talk:Chronic_fatigue_syndrome/Archive_8#ME talk page
- Talk:Chronic_fatigue_syndrome/Archive_8#ME vs CFS
- Talk:Chronic_fatigue_syndrome/Archive_8#Another source for the naming debate
- Talk:Chronic_fatigue_syndrome/Archive_9#More on the validity of ME
- Talk:Chronic_fatigue_syndrome/Archive_9#Different uses of the term "ME"
- Talk:Chronic_fatigue_syndrome/Archive_10#CFS/ME text under header
- Talk:Chronic_fatigue_syndrome/Archive_13#Title of the article
- Talk:Chronic_fatigue_syndrome/Archive_14#the name of the illness
- Talk:Chronic_fatigue_syndrome/Archive_14#Neurological condition
- Talk:Chronic_fatigue_syndrome/Archive_14#Blood donation ban in UK
- This list only encompasses those topics where the name ME or CFS seemed to be a significant portion of the discussion and that were in this page's archives. There were numerous other passing mentions and I know this discussion has been had on other talk pages as well (most notably, Talk:Alternative names for chronic fatigue syndrome). It may just be my imagination, but it seemed to me that most (though certainly not all) of those suggesting that the two conditions should be treated as distinct were from the UK, where, as I mentioned before, relations between patients and government organizations have become more or less hostile. This suggests to me that the concern about ME and CFS being two separate conditions is largely limited to the UK. Honestly, I don't think the evidence we have to date supports any firm conclusions either way, so...
- Also, this debate has been had before, numerous times:
- I think this debate should be shelved until such time as there is some kind of breakthrough that proves that ME is a separate condition beyond a shadow of a doubt and that the medical community worldwide has broadly accepted that usage. Otherwise, it will be a repetition of the same evidence and arguments ad nauseum. – RobinHood70 talk 07:36, 16 March 2011 (UTC)
- Absolutely should be shelved. It's entirely circular, and pointless. The relationship between the two main M.E/CFS advocacy organisations in the UK and the NHS and/or Government has never been 'hostile, M.E was the operative name under which these organisations came into being and the campaign for recognition of the illness used the M.E designation so it is inevitable that there is some attachment to that term. There has been a fairly bad tempered debate between patients, advocacy organisations, neurologists and (some) psychologists on one side, and some prominent psychiatrists on the other, over conflation of a name change with changes to diagnostic criteria. The debate, whatever its merits, has been fought to a standstill and the NHS guidance, along with use of the term CFS/M.E will likely serve as the standard for UK based research and academic discussion for the forseeable future. --In Vitro Infidelium (talk) 13:26, 16 March 2011 (UTC)
- I think this debate should be shelved until such time as there is some kind of breakthrough that proves that ME is a separate condition beyond a shadow of a doubt and that the medical community worldwide has broadly accepted that usage. Otherwise, it will be a repetition of the same evidence and arguments ad nauseum. – RobinHood70 talk 07:36, 16 March 2011 (UTC)
- Thanks, IVI. I was tangentially aware of the circumstances in the UK, but not sufficiently to summarize like you did. That's much more useful than simply "hostile", as I'd put it. – RobinHood70 talk 18:36, 16 March 2011 (UTC)
- I substantially agree with RobinHood, to wit, that this debate of ME and CFS being separate entities is mostly confined to the UK, and does not occur in the USA, for example. It is caused by US CDC renaming ME to "CFS" in the 1988 CDC Holmes Definition and since then "CFS" has been used to mean ME in the US. In the UK, Sharpe and others came up with their Sharpe/Oxford 1991 "CFS" criteria which inaccurately redefined "CFS" (in the UK) as mere Idiopathic CF (specifically excluding an illness with neurological signs). Now everyone with ICF is wrongly diagnosed with "CFS" in the UK because of the Sharpe definition and (the somewhat better, but still insufficient) NICE definition which is basically Sharpe criteria + PEM. The tactic used by the anti- ME science 'researchers' in the UK (eg Wessely, Sharpe, etc) is to study and publish on Sharpe CFS patients without noting they are using an invalid definition. fwiw, I only use the term ME (I am from the US) because the term CFS does more harm than good. That said, I think the use of "CFS" as the title to the article is appropriate and that ME should be redirected to this article given Wikipedia policies. JustinReilly (talk) 07:16, 28 April 2011 (UTC)
- re: neurological disease, I think it's clear WHO ICD is an reliable authoritative source. The fact that WHO has catalogued ME under G "diseases of the brain" since the inception of the disease's recognition in 1968 in ICD is enough authority on its own to state the fact that CFS is neurological in the absence of clearly countervailing evidence. CFS has been shown to involve significant neurological pathology and this is widely accepted. Saying that ICD is not diagnostic seems to me not to be relevant. There are plenty of cites here to authorities which are not diagnostic case defintions, eg journal review papers and medical texts. JustinReilly (talk) 07:19, 28 April 2011 (UTC)
Terminology
I hope this isn't a can of worms, but during the hatnote discussion above, I noticed that CFS is defined in the lede as a "multi-systemic disease". However, CFS is technically a syndrome without a known cause or diagnostic assay, and to my knowledge there is no pathology that is widely recognised as being characteristic of CFS. Some physical signs, such as swollen lymph nodes, may be associated with CFS, but they are not exclusive to it and not all cases present with them. It would seem to me that CFS should be described as a syndrome or a symptomatic condition, not a disease. However, not everyone makes the distinction; should we? Keepcalmandcarryon (talk) 22:40, 22 April 2011 (UTC)
- I looked in a few places, and the only place I was able to find wording that involved "system" in any way was the Hummingbird website, which takes a very specific view of CFS that has yet to be confirmed by science. So needless to say, it's not a good source for that or any similar wording. However, it seems the intent of the sentence to say simply that CFS isn't just about the fatigue. What about wording to the effect of "CFS is a syndrome characterized by multiple symptoms". My only minor issue with that is that we're saying that a syndrome is a syndrome. Maybe go with wording like the CDC and use "complex disorder"? – RobinHood70 talk 23:37, 22 April 2011 (UTC)
- This is an important distinction. The current sentence reads, "Fatigue is a common symptom in many illnesses, but CFS is a multi-systemic disease and is relatively rare by comparison." How about, "Fatigue is a common symptom in many illnesses whereas CFS is a relatively rare and complex disorder." -- Scray (talk) 23:48, 22 April 2011 (UTC)
- Instead of disorder use illness. There are recent reviews that discuss the multisystem disorder part of CFS. From three recent Pubmed reviews (2010) that talk about the biological aspects:
- Also, is a disease or illness that is estimated at 0.5-2% in the population rare, or is it relativley rare compared to fatigue? I would say the latter. Again this compares the symptom with the illness but that is what the review states, "While fatigue as a symptom is very common, CFS is relatively rare." Ward20 (talk) 00:43, 23 April 2011 (UTC)
- If I remember correctly, prevalence of "fatigue" in the general population is about 20-30%, with about 10-15% for "chronic fatigue". So either way, CFS is relatively uncommon. - Tekaphor (TALK) 03:40, 24 April 2011 (UTC)
- The wording, "Fatigue is a common symptom in many illnesses whereas CFS is a relatively rare and complex disorder." is not accurate to the source which states, "While fatigue as a symptom is very common, CFS is relatively rare".[12] CFS isn't considered a rear disease or disorder. Rare diseases are usually defined as fewer than 200,000 affected individuals in the United States,[13] nor does CFS show up on the rare diseases list.[14] The National Organization for Rare Disorders states ME/CFS is not rare.[15] I rewrote the section to be accurate to the source and added material from a very well cited review source. Ward20 (talk) 09:11, 27 April 2011 (UTC)
- I mostly agree with Ward20. "CFS" is a relatively common disease. The use of 'comparatively common' (compared to CF) is a better choice of words than 'relatively' in the earlier edit. As he notes, it is accepted that CFS is a multi-systemic disease. Neurological, endocrine and immune pathology are very well documented since the 1980's. More recently Cardiac and metabolic (mitochondrial) disease have been shown as well. So I think "multi-system disease" should go back in there. (I agree there is no consensus on etiology). JustinReilly (talk) 06:02, 28 April 2011 (UTC)
- CFS is a syndrome. There is no consensus on pathology, just a small number of often contradictory or unreplicated studies on each of a bewildering variety of proposed pathologies. The co-morbities of many CFS patients make it even more difficult to assess some of these studies. Further complicating the picture is that some studies are conducted by individuals who are CFS patients themselves and have a "following" of patients who may or may not be representative of CFS in the wider population. To the extent, of course, that CFS is a single entity, another issue. Keepcalmandcarryon (talk) 17:02, 29 April 2011 (UTC)
Some, all, most, nearly all, all of the above, none of anything
I'd rather not edit-war over one word, because we certainly don't want it to enter the halls of Wikipedia's lamest edit wars. I hate trying to prove a negative, but is there any researcher that has confirmed the retroviral link, other than the suspect crowd at WPI? If there is one reliable source showing another research group confirming the link, then "most" will work for me. OrangeMarlin Talk• Contributions 18:46, 26 April 2011 (UTC)
- Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors
- "Although we find evidence of a broader group of MLV-related viruses, rather than just XMRV, in patients with CFS and healthy blood donors, our results clearly support the central argument by Lombardi et al. (3) that MLV-related viruses are associated with CFS and are present in some blood donors."
- Lombardi et al. did not make the case that MLV-related viruses in general are associated with CFS. They made the claim that a specific virus, XMRV, was associated with CFS. Apart from the WPI study, no one has found XMRV in association with CFS. WPI's pointing to Lo et al. is a technique known as "moving the goalposts". And why stop with retroviruses in general? Why not just find any genetic material and say, "our results clearly support the central argument by Lombardi et al., that genetic material is associated with CFS." Keepcalmandcarryon (talk) 20:01, 26 April 2011 (UTC)
- I haven't found anything on PubMed, but sometimes it has a funky search engine, so I don't take a lack of hits as being accurate. Still, CFS lacks a definitive diagnostic techniques, which still is evidence that CFS is more psychiatric than anything else. Which is another thing that bothers me about this article. It seems to be written by people who actually believe that CFS exists, rather than a more NPOV that a lot of diagnosticians have found no evidence for a CFS pathology and reject it. I sit on the fence, more that CFS is a group of symptoms that poorly trained physicians have failed to uncover the true disease state, and lazily attribute it to CFS. It's like in the old days of medicine, "take two aspirin and call me in the morning." If you don't know what it is, just dump it into a bag with a fancy name. OrangeMarlin Talk• Contributions 20:06, 26 April 2011 (UTC)
- Lombardi et al. did not make the case that MLV-related viruses in general are associated with CFS. They made the claim that a specific virus, XMRV, was associated with CFS. Apart from the WPI study, no one has found XMRV in association with CFS. WPI's pointing to Lo et al. is a technique known as "moving the goalposts". And why stop with retroviruses in general? Why not just find any genetic material and say, "our results clearly support the central argument by Lombardi et al., that genetic material is associated with CFS." Keepcalmandcarryon (talk) 20:01, 26 April 2011 (UTC)
- Keepcalmandcarryon, what are you talking about? The independent study[16] authors state, "our results clearly support the central argument by Lombardi et al." Argue with them if you don't believe what they wrote. Ward20 (talk) 20:13, 26 April 2011 (UTC)
- Ward, you are kind of quote mining. They also said they found a high percentage of XMRV in healthy subjects, which kind of makes me crack up. Yes, they confirmed Lombardi, but they also make it clear that XMRV may not be a definitive diagnosis. I'm not sure what to think here, because this is really a confirmation. Kind of. Sort of. OrangeMarlin Talk• Contributions 20:24, 26 April 2011 (UTC)
- Keepcalmandcarryon, what are you talking about? The independent study[16] authors state, "our results clearly support the central argument by Lombardi et al." Argue with them if you don't believe what they wrote. Ward20 (talk) 20:13, 26 April 2011 (UTC)
- Orangemarlin, The study, Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors is PMID 20798047 on PubMed. You asked for a reliable source showing another research group confirming the link, those study authors believe they have. No it's not a definitive diagnosis, only a proposed and disputed association as the article states. There definitely is pathology as shown in the Pathophysiology of chronic fatigue syndrome sub article. The main problem is that the multiple definitions of the illness select different patient groups for research studies, some with depression, some with environmental triggers (including viruses), some that have undiagnosed known diseases as you state. If you look at the Canadian consensus criteria and compare that to the Oxford criteria, they define very different patient groups. The psychiatrists in the UK and Europe that originated and use the Oxford criteria don't seem to acknowledge the physical symptomatology, immunological and systemic abnormalities that are associated with non depressed patients. They want to lump all the groups together and treat using CBT and graded exercise therapy in clinics they run. This lumping of disparate groups together has caused confusion in the research literature as to finding definitive diagnostic techniques. Ward20 (talk) 21:01, 26 April 2011 (UTC)
- This news feature from Nature last month is an excellent review of the current state of affairs. Looie496 (talk) 21:06, 26 April 2011 (UTC)
- Orangemarlin, Lombardi[17] found (3.7%) prevalence in healthy controls Lo found (6.8%) in their controls. Researchers postulate that like HIV this retrovirus may not cause illness immediately, or never depending on genetics. Ward20 (talk) 21:15, 26 April 2011 (UTC)
- Looie, there is also a Nature editorial here. Ward20 (talk) 21:29, 26 April 2011 (UTC)
- Researchers postulate many things, but there is no convincing evidence that "this retrovirus" infects people or exists outside the lab. Speaking of "this retrovirus", it's difficult to talk about anything without clearly defined terms, and Lombardi and Lo are referring to different viruses as "XMRV". Lo et al. was manifestly not a confirmation study. These authors did not find the Silverman XMRV, i.e., the real, canonical XMRV that seems to have arisen through a laboratory accident, at all. Instead, Lo et al. seem to have redefined "XMRV" as "xenotropic mouse viruses detected in human samples", as if it was xMLV, not XMRV. XMRV (Silverman) as a distinct virus was not detected by Lo et al. or by anyone else in association with CFS. Lo et al. Keepcalmandcarryon (talk) 21:31, 26 April 2011 (UTC)
- If Lo and Alter
and,believe their study is a confirmation of Lombardi's then it indicates not all researchers suspect contamination. That's what this discussion is about. Ward20 (talk) 21:49, 26 April 2011 (UTC)
- If Lo and Alter
- Neither Lo nor anyone else found XMRV, which is now suspected of being a contaminant by almost everyone who doesn't have a dog in the race, and even some who do. You can quote-mine from primary sources all you like (although there's not much more where that came from). What Lo, et al. found was not XMRV as defined in the literature, WPI, Silverman, etc. Keepcalmandcarryon (talk) 23:25, 26 April 2011 (UTC)
- Let's keep in mind that this article is about CFS, not XMRV or gammaretroviruses. There is no consensus that XMRV (by the normal definition or the Lo, et al. redefinition or even whatever the Science journalist was writing about) is a human pathogen, much less that it is associated with or causes CFS. Keepcalmandcarryon (talk) 15:05, 27 April 2011 (UTC)
(out)There is a basic ‘class’ problem in that XMRV is of only ‘putative relevance’ to CFS, with just one study, one (sort of ) confirmation of that study supporting the relevance and multiple other studies denying relevance. As a single unit of a ‘putative class’ it's simply not possible to contextualise XMRV in the CFS article through a comparative treatment with other elements of the article – encyclopaedically XMRV should never have formed part of the CFS article. Pragmatically it seems that because it is ‘there’, it is now deemed appropriate to leave it in place until the reverse of usual scientific and encyclopaedic process is employed and XMRV is demonstrated "not to be relevant". Such a pragmatic approach should not be used to further legitimise the inclusion of XMRV in the CFS article, pragmatic conservatism requires limited reference only, along with appropriate acknowledgement of the dubiety of relevance.--In Vitro Infidelium (talk) 10:41, 28 April 2011 (UTC)
"Multiple Psychological and Physiological Factors may Contribute" to CFS?
re: "multiple psychological and physiological factors may contribute to the development and maintenance of symptoms. pmid at 12562565; Chronic Fatigue and Its Syndromes by Simon Wessely, Matthew Hotopf and Michael Sharpe (Jan 15, 1998) " Wesseley, Sharpe and Buchwald are not reliable authorities. I am sure this discussion has taken place before. I will look for some reliable authorities that say that psychologic factors have been ruled out. I have read that many times from authoritative sources. As far as I know, no bona fide study has ever found psychologic factors as (even partially) causative. Really, the line has to be drawn against using the results of any study employing the patently invalid "Sharpe ('Oxford") 1991" criteria which defines nothing more than Idiopathic CF, not CFS (it explicitly excludes illness with any neurologic signs; "ME" has always been classified as neurologic by WHO). Since there is strong (though manufactured, on the part of the UK psychiatrists) controversy over psychological causation, this should not be included in the first paragraph as a fact. It should be treated in the controversy article or somewhere else. JustinReilly (talk) 06:24, 28 April 2011 (UTC)
- There is regular repetition of a misrepresentation of the so called ‘Oxford criteria’ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf this guideline paper had 27 contributors of which only 5 were either psychiatrists or psychologists, other disciplines that were represented included neurology, biochemistry and microbiology, there is therefore no basis to rule out any study as being 'not relevant' on the basis that the Oxford criteria is not scientifically justified or was of limited authorship. Wikipedia requires that all relevant sources are considered, and where there are competing appropriately presented hypotheses, that these are given appropriate weight; Psychiatry is considered to be a scientifically valid medical discipline (whether it is or isn’t is a different matter) and as such the CFS article has to treat psychiatric assessment of CFS as having equal validity to any other medical assessment. Medically there is no controversy over the role of psychiatry in treating CFS – again whether or not there should be is a separate issue outside of the scope of Wikipedia.
- The contention that the Oxford criteria "excludes illness with any neurologic signs" is patently false what the document actually says is "Certain patients should be excluded from the definition. They include: Patients with established medical conditions known to produce chronic fatigue (eg severe anaemia)" - this is hardly a problematic criterion as to not include it would allow that any condition that involves chronic fatigue would otherwise fall within the CFS criteria.--In Vitro Infidelium (talk) 11:11, 28 April 2011 (UTC)
- The other part of the exclusion criteria that is often taken to mean "neurological" is the wording "proven organic brain disease". In theory, that would exclude those that have proven myalgic encephalomyelitis, however in most cases, that proof (e.g., a brain scan) doesn't exist; all that's proven is that the person has signs of ME/CFS which include neurological symptoms. The exclusion does not exclude neurological symptoms in general, which is a much broader category than "organic brain disease" implies, nor does it do so specifically for ME/CFS, since there's no established linkage between ME/CFS with neurological symptoms and brain disease. Only those who have proven encephalomyeletis would be excluded under that criteria (which, granted, might alter the patient sample in and of itself, depending on how many have been proven to have actual encephalomyelitis). – RobinHood70 talk 20:51, 28 April 2011 (UTC)
- The unfortunate fact is that there is as yet no proven cause of CFS and there are no consensus biomarkers of the condition(s) currently known by this name. There are many proposed causes, and many proposed biomarkers, from circulating blood volume to immune cell reactivities, but nothing close to consensus has emerged. There is a perceived divide between those who feel CFS is a purely "mental" disorder and those who feel it is a purely "physical" discorder. In my view, Wessely and colleagues straddle this divide in a reflection of the uncertainties and a desire not to rule out potentially fruitful avenues of research. That is, their multi-faceted approach and unwillingness to reject theories out-of-hand seems to give a good overview of the state of knowledge today; it's why I added their work as a citation. Keepcalmandcarryon (talk) 16:23, 29 April 2011 (UTC)
- Guys, the fraudulent science of Wessely and his ilk has got to go. I don't care if it is published in an ostensibly 'reliable source', if it is fake science then it is morally wrong to include it in wikipedia, which so many people rely upon as a source of information. There are guidelines that support this. I read these a while ago and will look them up again. As I recall, they were guidelines like 'guidelines are only guidelines, if doing the right thing conflicts with the guidelines, then do the right thing.' Sorry this is not a thorough treatment of this topic, but i am outraged at the lies that you put up under the guise of coming from a 'reliable source.' This is morally wrong and must end. Talk to you later. JustinReilly (talk) 12:49, 26 November 2011 (UTC)
Redirect from "chronic fatigue"
It is very inappropriate to redirect "chronic fatigue" to this article. CF is a symptom which is NOT synonymous with CFS, just as CF is not synonymous with MS or Leukemia (though it is usually the most prominent symptom of all three diseases). "chronic fatigue" should go to a disambiguation page with the options of "CFS" and "Fatigue (medical)." JustinReilly (talk) 20:10, 22 April 2011 (UTC)
- Unremitting persistent fatigue is one of the major criteria for CFS, isn't it? I don't think it's a bad redirect. If there is only one other alternative (as you point out) then this should be dealt with at the top of the article. I think many readers are going to expect CFS if they search WP for "chronic fatigue". -- Scray (talk) 21:00, 22 April 2011 (UTC)
- While persistent fatigue is a major criteria of CFS, Justito and Scray both have points. The distinction is often made in medicine, and "chronic fatigue" can be found in numerous other conditions such as MS, lupus, cancer and/or its treatments, etc. Nonetheless, "chronic fatigue" is sometimes used in the vernacular to mean CFS. Perhaps a disambiguation page with CFS as the top-listed choice and some explanation that they're sometimes used synonymously? – RobinHood70 talk 21:26, 22 April 2011 (UTC)
- I agree that there is value in disambiguating the terms, but when there are only two choices a hatnote is often used. -- Scray (talk) 21:39, 22 April 2011 (UTC)
- For better or worse, "chronic fatigue" and "chronic fatigue syndrome" are often used interchangeably, even, at times, in medical journals. See here, for example. In this usage, the "syndrome" is implied, as in Alzheimer's for Alzheimer's Disease or Parkinson's for Parkinson's Disease. In contrast, chronic fatigue as a symptom is a subset of fatigue in general. Keepcalmandcarryon (talk) 21:43, 22 April 2011 (UTC)
- I believe "chronic fatigue" should redirect to Fatigue (medical) as a symptom. The article Fatigue (medical) then acts as a disambiguation page to the other contitions that display fatigue. Ward20 (talk) 21:56, 22 April 2011 (UTC)
- Because "chronic fatigue" so often specifically refers to CFS, it's better to redirect here and include a hatnote, as Scray suggests: for the medical symptom, see Fatigue (medical). Keepcalmandcarryon (talk) 22:00, 22 April 2011 (UTC)
- I took a crack at it - not confusing and easy to revert if you strongly disagree. -- Scray (talk) 22:07, 22 April 2011 (UTC)
- Looks good and addresses the concerns about ambiguity. Keepcalmandcarryon (talk) 22:11, 22 April 2011 (UTC)
- I disagree. It conflates a symptom with a syndrome. A better solution would be to redirect to Fatigue (medical) and hatnote, ""Chronic fatigue" redirects here. For the medical syndrome, see Chronic fatigue syndrome."Ward20 (talk) 22:28, 22 April 2011 (UTC)
- RFC requested at WikiProject Medicine Ward20 (talk) 22:48, 22 April 2011 (UTC)
- Looks good and addresses the concerns about ambiguity. Keepcalmandcarryon (talk) 22:11, 22 April 2011 (UTC)
- I took a crack at it - not confusing and easy to revert if you strongly disagree. -- Scray (talk) 22:07, 22 April 2011 (UTC)
- Because "chronic fatigue" so often specifically refers to CFS, it's better to redirect here and include a hatnote, as Scray suggests: for the medical symptom, see Fatigue (medical). Keepcalmandcarryon (talk) 22:00, 22 April 2011 (UTC)
- I believe "chronic fatigue" should redirect to Fatigue (medical) as a symptom. The article Fatigue (medical) then acts as a disambiguation page to the other contitions that display fatigue. Ward20 (talk) 21:56, 22 April 2011 (UTC)
- For better or worse, "chronic fatigue" and "chronic fatigue syndrome" are often used interchangeably, even, at times, in medical journals. See here, for example. In this usage, the "syndrome" is implied, as in Alzheimer's for Alzheimer's Disease or Parkinson's for Parkinson's Disease. In contrast, chronic fatigue as a symptom is a subset of fatigue in general. Keepcalmandcarryon (talk) 21:43, 22 April 2011 (UTC)
- I agree that there is value in disambiguating the terms, but when there are only two choices a hatnote is often used. -- Scray (talk) 21:39, 22 April 2011 (UTC)
- While persistent fatigue is a major criteria of CFS, Justito and Scray both have points. The distinction is often made in medicine, and "chronic fatigue" can be found in numerous other conditions such as MS, lupus, cancer and/or its treatments, etc. Nonetheless, "chronic fatigue" is sometimes used in the vernacular to mean CFS. Perhaps a disambiguation page with CFS as the top-listed choice and some explanation that they're sometimes used synonymously? – RobinHood70 talk 21:26, 22 April 2011 (UTC)
- Came here from WT:MED posting. I would expect that someone looking at "chronic fatigue" is more likely than not looking for the syndrome rather than the symptom. As such, I agree with the redirect pointing here rather than to the symptom page. Yobol (talk) 22:51, 22 April 2011 (UTC)
- I agree with Scray. Axl ¤ [Talk] 10:18, 23 April 2011 (UTC)
- "Chronic fatigue" as a symptom occurs in many different conditions, CFS is a poorly named syndrome with multiple symptoms, and the CFS construct was intended to describe a syndrome that is not synonymous with "chronic fatigue", while many other conditions producing similar symptoms have to be ruled out before a CFS diagnosis is made. The obvious majority of people reporting "chronic fatigue" don't meet CFS criteria. For example, according to a large study by Watanabe et al 2008 PMID 18374734, "the prevalence of chronic fatigue was 15.0%", and associated with both physical illness and mental illness. Contrast this to 0.4% by the Fukuda definition (the most commonly used) and over 2% by Reeves definition (rarely used) which has been criticized for being too broad. Ideally, chronic fatigue should be its own article, but I agree with Ward20's solution for now. - Tekaphor (TALK) 03:37, 24 April 2011 (UTC)
Per JustinReilly, this is an inappropriate redirect. Scray, fatigue is a common experience of individuals suffering from chronic illnesses, such as cancer, chronic obstructive pulmonary disease, multiple sclerosis, mitochondrial diseases, neuromuscular disorders, Parkinson’s disease, post poliomyelitis and post stroke.[18] Chronic fatigue should redirect to an article on the symptom, along the lines of Depression (mood). That article should discuss the symptom and direct readers, via concise subsections, to articles on the various conditions featuring chronic fatigue. For now, per Tekaphor and Ward20, it should redirect to Fatigue (medicine)#Chronic fatigue. Yobol, I don't think it can be assumed people searching for "chronic fatigue" are looking for "chronic fatigue syndrome," just one of the many conditions associated with this common symptom. --Anthonyhcole (talk) 06:34, 26 April 2011 (UTC)
- Since there seems to be a lack of consensus on this one, should we create a disambiguation page (presumably with just the two entries of CFS and fatigue for now) and just let the reader choose which meaning they were looking for? – RobinHood70 talk 07:14, 26 April 2011 (UTC)
- The unfortunate aspect of such a "solution" would be that zero users would arrive, in one step, at the article they intended. If we use a hatnote on each article, and make our collective best guess as to the most common intended destination for redirection, then we'll shorten the path for many. I've already stated my preference (redirect to CFS) and I am not swayed by the alternative suggestions expressed here, but I'd rather redirect to the general symptom and offer a hatnote link to CFS than to send them nowhere with a map. -- Scray (talk) 12:00, 26 April 2011 (UTC)
- I continue to believe most people who search for "chronic fatigue" would more likely than not looking for the syndrome; however, I personally do not have a problem with a disambiguation page as a compromise. Yobol (talk) 13:44, 26 April 2011 (UTC)
- How's this:
- Chronic fatigue may refer to:
- Chronic fatigue, a long-term state of physical and/or mental exhaustion, a symptom of many chronic illnesses
- Chronic fatigue syndrome, an illness of unknown cause comprising post-exertional malaise, unrefreshing sleep, widespread muscle and joint pain, sore throat, cognitive difficulties, and chronic, often severe, mental and physical exhaustion, for a minimum of six months, not due to ongoing exertion, not substantially relieved by rest, and not due to any other medical condition
- --Anthonyhcole (talk) 16:02, 26 April 2011 (UTC)
- I continue to believe most people who search for "chronic fatigue" would more likely than not looking for the syndrome; however, I personally do not have a problem with a disambiguation page as a compromise. Yobol (talk) 13:44, 26 April 2011 (UTC)
- The unfortunate aspect of such a "solution" would be that zero users would arrive, in one step, at the article they intended. If we use a hatnote on each article, and make our collective best guess as to the most common intended destination for redirection, then we'll shorten the path for many. I've already stated my preference (redirect to CFS) and I am not swayed by the alternative suggestions expressed here, but I'd rather redirect to the general symptom and offer a hatnote link to CFS than to send them nowhere with a map. -- Scray (talk) 12:00, 26 April 2011 (UTC)
- Works for me. Ward20 (talk) 16:08, 26 April 2011 (UTC)
- I was unfamiliar with the hatnote protocol, so now I think 'chronic fatigue' should redirect to the symptom CF at Fatigue (medicine)#Chronic fatigue per Tekaphor. He correctly states that the symptom of chronic fatigue is approximately 40 or 50 times more common than CFS and it is an incorrect usage of CF to use it as shorthand for CFS (though many people, even doctors make this mistake). A redirect to the symptom serves the related educational purpose of educating people that "CF" is not "CFS." I don't know if most people searching for CFS would use 'CF'. Perhaps. Don't think there is a way to tell. If someone is looking for "CFS" she will easily find it as it appears near the top of the alphabetical list of illnesses which cause CF. I think the balance of considerations weighs heavily in favor of redirect to Fatigue (medicine)#Chronic fatigue. JustinReilly (talk) 02:40, 27 April 2011 (UTC)
- Works for me. Ward20 (talk) 16:08, 26 April 2011 (UTC)
Can those interested please indicate how they feel about the three proposed options: the disambiguation page in the words I suggested above, redirect "chronic fatigue" to Chronic fatigue syndrome, and redirect "Chronic fatigue" to Fatigue#Chronic fatigue so we can close this thread? This will affect about 35 readers per day [19] --Anthonyhcole (talk) 23:24, 28 April 2011 (UTC) Clarified 10:38, 29 April 2011 (UTC)
- 1st choice redirect to Chronic fatigue
- 2nd choice Anthonyhcole's suggestion. Ward20 (talk) 01:56, 29 April 2011 (UTC)
- If we redirect to the "chronic fatigue" section in fatigue(medical) we should probably add a sentence or two about CFS in that section and make it more prominent (even if we don't redirect there, I think we should do that). --sciencewatcher (talk) 14:45, 29 April 2011 (UTC)
- I vote to keep it as it is, but I don't oppose a disambiguation page. Keepcalmandcarryon (talk) 17:04, 29 April 2011 (UTC)
- I'd be happy with either a redirect to Chronic fatigue or a disambiguation, but agree with SW that if we redirect, making CFS prominent (perhaps a section hatnote?) would be appropriate. – RobinHood70 talk 19:38, 29 April 2011 (UTC)
- I vote to keep it as it is, but I don't oppose a disambiguation page. Keepcalmandcarryon (talk) 17:04, 29 April 2011 (UTC)
- The Anthonyhcole formulation is the most appropriate. It is important to distinguish between the syndrome, which is a classificational artefact, and both fatigue and chronic fatigue which are strictly definitional terms. I think this is what Justin Reily was trying to get at, although he expressed it in terms of symptoms and condition. --In Vitro Infidelium (talk) 12:18, 1 May 2011 (UTC)
- To clarify my position, I strongly oppose the disambiguation page, because there is nothing ambiguous about "chronic fatigue" and "chronic fatigue syndrome." I think such a page violates the relevant policy, but I can't be arsed finding it and reading it again. I just put into words a proposal made by others earlier, in order to move things along.
I oppose both the dab page and redirecting "chronic fatigue" to "chronic fatigue syndrome" with equal ardor. --Anthonyhcole (talk) 13:36, 1 May 2011 (UTC)
- To clarify my position, I strongly oppose the disambiguation page, because there is nothing ambiguous about "chronic fatigue" and "chronic fatigue syndrome." I think such a page violates the relevant policy, but I can't be arsed finding it and reading it again. I just put into words a proposal made by others earlier, in order to move things along.
- The Anthonyhcole formulation is the most appropriate. It is important to distinguish between the syndrome, which is a classificational artefact, and both fatigue and chronic fatigue which are strictly definitional terms. I think this is what Justin Reily was trying to get at, although he expressed it in terms of symptoms and condition. --In Vitro Infidelium (talk) 12:18, 1 May 2011 (UTC)
I've just reread Wikipedia:Disambiguation and can live with the dab page. It looks to me like there's consensus for the compromise dab page proposed above. Unless there's substantial opposition between now and then, I suggest we make the change in 24 hours. --Anthonyhcole (talk) 04:44, 2 May 2011 (UTC)
[20] Done. --Anthonyhcole (talk) 08:46, 4 May 2011 (UTC)
- I'm ok with the dab; though I think redirect to Fatigue (medicine)#Chronic fatigue with a hatnote is more appropriate. Thanks for considering this issue, everyone. JustinReilly (talk) 06:22, 7 May 2011 (UTC)
Location of PACE discussion in the article
A minor point but shouldn't the section on the PACE trial be after the sections on CBT, GET and Pacing, which it discusses? Anthonyhcole (talk) 18:38, 23 May 2011 (UTC)
- It was me who added it, but I don't have any particular attachment to the location. I think I added it at the top as it seemed to be the most important research on CBT/GET to date. However if you feel it should go below the CBT/GET sections, that's fine. --sciencewatcher (talk) 18:43, 23 May 2011 (UTC)
Nail in the Coffin?
I'm on my way out right now, but it sounds to me like the XMRV-CFS link may be at the point of being put to rest.[21] I haven't read more than the intro, but wanted to post it here for consideration/comment before doing anything to the relevant articles. – RobinHood70 talk 18:49, 4 May 2011 (UTC)
- Here's a link to the abstract in Journal of Virology (misidentified as Virology in the about.com commentary linked above). It's a primary source, but its major conclusions directly refute the prior studies that found XMRV and MLV-like (non-XMRV) viral sequences. A quote from the abstract summarizing their results:
We did not find XMRV or related MLVs, either as viral sequences or infectious virus, nor did we find antibodies to these viruses in any of the patient samples, including those from the original study. We show that at least some of the discrepancy with previous studies is due to the presence of trace amounts of mouse DNA in the Taq polymerase enzymes used in these previous studies.
- Here's a relevant quote from the Results section:
We discovered that both recombinant Taq polymerase (Invitrogen) and the Platinum Taq polymerase (Invitrogen) tested positive for IAP sequences. Furthermore, adding increasing amounts of both Taq polymerases resulted in progressively lower Ct (Fig. 5D). Along similar lines, when increasing amounts of both Taq polymerases were used as a template for the gag qPCR, positivity also increased. Positive reactions were obtained with four different batches of Taq polymerase. ABI’s Amplitaq Gold Taq polymerase contained in the mastermix of all of our qPCR TaqMan assays did not contain any IAP sequences (Fig. 5D), indicating that it was free of mouse DNA. When adding additional Amplitaq Gold Taq polymerase as template for the IAP qPCR assay as was done with the other polymerase preparations, all reactions remained negative. Contamination of Taq polymerase preparations with mouse RNA has been reported in an independent study (20). Taken together, our analysis shows that certain Taq preparations contain very small amounts of mouse DNA that can cause false-positive reactions when used in highly sensitive assays for XMRV.
- It's a very convincing analysis overall, in a rigorously-reviewed journal. -- Scray (talk) 21:51, 4 May 2011 (UTC)
- For the curious, IAP in the quotation above refers to "intracisternal A-type particles", a genetic marker occurring about 2000 times per mouse genome and a very sensitive marker for the presence of mouse DNA. In this way, they demonstrated mouse DNA contamination of PCR reagents used in prior positive studies. Also, reference 20 is Sato et al. (PMID 21171978). -- Scray (talk) 21:58, 4 May 2011 (UTC)
- It appears to be the most comprehensive and carefully done study to date, even suggesting where the contamination came from in the original study. It isn't substantially different than what is presently stated in the main article about XMRV. My question would be whether to keep it as a brief mention of a notable event, or to delete it from the main article and just update the Pathophysiology of chronic fatigue syndrome article. Ward20 (talk) 22:37, 4 May 2011 (UTC)
- I vote delete from this article (for reasons I previously expressed) and updatePathophysiology of chronic fatigue syndrome. --In Vitro Infidelium (talk) 11:56, 7 May 2011 (UTC)
- I agree. It's probably worth noting here on the talk page that the last author of this new study has been quite open-minded re: XMRV and CFS, much as was John Coffin. Keepcalmandcarryon (talk) 13:00, 9 May 2011 (UTC)
- I read a headline where someone named Lipkin (whose name sounds familiar, but I don't keep up on every last CFS doctor in the world <g>) said we're probably looking at the end of 2011 before we can really say with any certainty that XMRV isn't involved at all with CFS, but for now, given what we've got available to us, I'd say it should be reduced to basically a "has been". If later evidence contradicts the various negative studies, we can update the articles at that time. – RobinHood70 talk 01:47, 10 May 2011 (UTC)
- I don't mean to dance on a grave or anything (sticking with the coffin metaphor), but seriously, how much bandwidth did we spend on this theory? The problem was that, other than WPI, we didn't find a lot of reliable sources for the link. This happens too much around here. OrangeMarlin Talk• Contributions 02:04, 10 May 2011 (UTC)
- Speaking of the WPI, shouldn't that article be corrected? OrangeMarlin Talk• Contributions 02:08, 10 May 2011 (UTC)
- I don't mean to dance on a grave or anything (sticking with the coffin metaphor), but seriously, how much bandwidth did we spend on this theory? The problem was that, other than WPI, we didn't find a lot of reliable sources for the link. This happens too much around here. OrangeMarlin Talk• Contributions 02:04, 10 May 2011 (UTC)
- I read a headline where someone named Lipkin (whose name sounds familiar, but I don't keep up on every last CFS doctor in the world <g>) said we're probably looking at the end of 2011 before we can really say with any certainty that XMRV isn't involved at all with CFS, but for now, given what we've got available to us, I'd say it should be reduced to basically a "has been". If later evidence contradicts the various negative studies, we can update the articles at that time. – RobinHood70 talk 01:47, 10 May 2011 (UTC)
- I agree. It's probably worth noting here on the talk page that the last author of this new study has been quite open-minded re: XMRV and CFS, much as was John Coffin. Keepcalmandcarryon (talk) 13:00, 9 May 2011 (UTC)
- I vote delete from this article (for reasons I previously expressed) and updatePathophysiology of chronic fatigue syndrome. --In Vitro Infidelium (talk) 11:56, 7 May 2011 (UTC)
- It appears to be the most comprehensive and carefully done study to date, even suggesting where the contamination came from in the original study. It isn't substantially different than what is presently stated in the main article about XMRV. My question would be whether to keep it as a brief mention of a notable event, or to delete it from the main article and just update the Pathophysiology of chronic fatigue syndrome article. Ward20 (talk) 22:37, 4 May 2011 (UTC)
Harvey Alter said at a Blood Products Advisory Committee meeting that "Lo has done the [IAP] assay that Dr. Coffin recommended. That is also negative." It was not in the published paper by Lo et al maybe because as they state in this same meeting they believe the mtDNA test is more sensitive, but interesting none the less. - Tekaphor (TALK) 06:58, 26 July 2011 (UTC)
PACE trial criticism
We should maybe update the PACE trial criticism section with the recent lancet editorial. We should probably also add some info on the PACE trial to the main article. --sciencewatcher (talk) 18:07, 23 May 2011 (UTC)
- This brings up an interesting question: can the Lancet be considered a reliable source on this matter? They are, after all, essentially defending themselves at this point as well as the PACE trial. However, as I've pointed out myself many times in regards to WPI rebuffing criticism, in a context such as this, even something by an involved source has a place as long as it's presented along the lines of "The Lancet has rebuffed criticism of their inclusion of the PACE trial saying that...". – RobinHood70 talk 19:31, 23 May 2011 (UTC)
- I think the difference between the Lancet and WPI is that the Lancet has a reputation as a highly reliable source whereas WPI is a newbie. I just checked the citations to the PACE trial on google scholar, and assuming I haven't messed up there only appear to be a few letters to the editor, a medical hypothesis (and, strangely, a facebook page) citing it so far. So unless we actually have a WP:MEDRS source criticising the trial, it seems reasonable to let the Lancet (or the authors) rebuff their own criticism. Alternatively if there is coverage in the BMJ, Nature or similar journal then it should be okay to use that instead. --sciencewatcher (talk) 20:25, 23 May 2011 (UTC)
- RobinHood70 asks the interesting question if the Lancet be considered a reliable source on this matter. The editorials cited (BMJ, Lancet) did not go into detail about the criticism, whereas patient organizations did. So why not use both sources of information about the criticism? I performed an edit which did just that. - Tekaphor (TALK) 06:27, 26 July 2011 (UTC)
- I had to remove the Lancet's false claim in the editorial that the (Hooper's) complaint is "now available via Wikipedia". Their previous editorial on the PACE trial also had errors in it. Makes me wonder how reliable their other claims are. - Tekaphor (TALK) 06:55, 26 July 2011 (UTC)
why has lombardi et al paper and Lo and Alter paper been removed?
the ACTUAL authors of the paper state IN the paper... "Although we find evidence of a broader group of MLV-related viruses, rather than just XMRV, in patients with CFS and healthy blood donors, our results clearly support the central argument by Lombardi et al. that MLV-related viruses are associated with CFS and are present in some blood donors." [36] THEREFORE it NEEDS to be added to this wikpedia page...to not include it is disingenuous. Whoever removed it should be ashamed
Also regardless of what a handful of biased editors may think, and whether XMRV or MLV does or does not prove to be involved it seems very odd to pretend it doesnt exist...there is no mention at all on the page —Preceding unsigned comment added by 86.167.7.254 (talk) 21:07, 23 May 2011 (UTC)
- The right place for conjectures about the pathophysiology of chronic fatigue syndrome is the article Pathophysiology of chronic fatigue syndrome. There is a very wide range of views expressed on this talk page but, for a controversial topic, the editors here are nevertheless (mostly) polite and collaborative. What you're reading as bias is simply editors submitting to the guidelines and policies WP:MEDMOS, WP:CRYSTAL, and WP:SYNTH. --Anthonyhcole (talk) 10:27, 25 May 2011 (UTC)
Vitamins
In regards to the Vitamin addition, can I suggest moving it to Chronic fatigue syndrome treatment, which already has a Complementary and alternative medicine section where it might fit better. – RobinHood70 talk 16:53, 7 June 2011 (UTC)
- In his edit summary reverting the section, JFW said the source, Alternative Medicine Review, is not compatible with MEDRS. Therefore, this content isn't appropriate for any Wikipedia articles without support from other, more reliable, sources. --Anthonyhcole (talk) 04:30, 8 June 2011 (UTC)
- Re-reading the actual text inserted, they state fairly clearly that it was low-quality evidence and that these were the author's recommendations. Given that that's basically what WP:MEDASSESS is all about, I'm fine with the removal. I was just worried that the journal was being dismissed entirely because it was alternative medicine which would be a clear case of WP:IDONTLIKEIT. (Honestly, "I don't like it" either, but I'm trying not to let that affect my judgement here. <g>) – RobinHood70 talk 05:13, 8 June 2011 (UTC)
- We do already have a whole section on CAM treatments including vitamins and minerals in the treatment article, and it uses good reviews like BMJ Clinical Evidence. I don't think it would be good to replace this with a lower quality source. --sciencewatcher (talk) 14:58, 8 June 2011 (UTC)
- Also consider http://www.ncbi.nlm.nih.gov/pubmed/20192908 - Tekaphor (TALK) 06:43, 26 July 2011 (UTC)
Myalgic Encephalomyelitis: International Consensus Criteria (ME-ICC)
Wikipedians should be aware of the ME-ICC development because of the potential implications when it is eventually published in print in the Journal of Internal Medicine:
Myalgic Encephalomyelitis: International Consensus Criteria.
Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, Staines D, Powles AP, Speight N, Vallings R, Bateman L, Baumgarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik S, Mena I, Mikovits JA, Miwa K, Murovska M, Pall ML, Stevens S.
J Intern Med. 2011 Jul 20. doi: 10.1111/j.1365-2796.2011.02428.x. [Epub ahead of print]
Abstract: The label "chronic fatigue syndrome" (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term "myalgic encephalomyelitis"(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization's International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process. The scope of this paper is limited to criteria of ME and their application. Accordingly, the criteria reflect the complex symptomatology. Operational notes enhance clarity and specificity by providing guidance in the expression and interpretation of symptoms. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other health care providers, improve consistency of diagnoses in adult and paediatric patients internationally, and facilitate clearer identification of patients for research studies.
PubMed, http://www.ncbi.nlm.nih.gov/pubmed/21777306
Official paywall, http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract
Unofficial full-text, http://www.meassociation.org.uk/?p=7173
- Typical ME : "A patient will meet the criteria for post-exertional neuroimmune exhaustion (A), at least one symptom from three neurological impairment categories (B), at least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C), and at least one symptom from energy metabolism/transport impairments (D)."
- Atypical ME : "Meets criteria for post-exertional neuroimmune exhaustion but has two or less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases."
- Severity rating : "Mild: approximately 50% reduction in activity, moderate: mostly housebound, severe: mostly bedbound, and very severe: bedbound and dependent on help for physical functions."
It rejects outright the woefully inadequate name "chronic fatigue syndrome" and the previously obsessive emphasis on "fatigue" over everything else. Fatigue isn't even a criterion anymore, instead the focus is on pathological low-threshold fatigability or a characteristic symptom pattern now labeled as "post-exertional neuroimmune exhaustion", the word "malaise" is also criticized for being "inaccurate and inadequate". The other symptom categories listed above are also given primary importance too.
ME-ICC reinforces myalgic encephalomyelitis as the appropriate name and WHO classification, based on "research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology". As for the issue of ME vs CFS, the 6 month requirement for diagnosis has been removed and the authors explicitly state that those meeting ME-ICC "have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome."
It is unclear to me whether the authors view ME as a separate condition from Fukuda defined CFS. They do criticize Fukuda criteria for overlapping with depression and point out that Canadian criteria "differentiate ME patients from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments". My guess is that they used Fukuda criteria based research and their own clinical experience to better define ME but view the Fukuda criteria as inadequately broad and view ME as a separate diagnosis to the CFS envisioned by psychiatric researchers and NICE 2007 guidelines and the CDC with their more recent 2005 definition which bloated up the prevalence estimates 5-10 fold and fails to adequately distinguish CFS from major depression.
ME-ICC was based on the Canadian Consensus Criteria as a starting point; the CCC were downplayed here previously for being published in a low ranking journal, for not being used much in research (it was a clinical definition afterall), and for not being endorsed by many medical authorities. Wikipedia relies heavily on systematic appeals to authority and arbitrary judgments about the status quo, whereas the ME-ICC was not produced by any sponsoring organization but by the consensus process of an international group of researchers, and it is too early to tell how the medical authorities will respond to the ME-ICC or if researchers will use it.
At a bare minimum the ME-ICC will need to be added to the list of definitions, and can be used to demonstrate within the research community an increasing support for the name ME and increasing criticism of the name and definition of CFS. ME-ICC would easily pass WP:MEDRS guidelines for certain statements. The review of biomedical research contained within is also useful, just keep in mind that it is not a systematic review but "a framework for the diagnosis of ME that is consistent with the patterns of pathophysiological dysfunction emerging from published research findings and clinical experience".
Although I would support a separate ME article dedicated to the specific history and definitions and research relevant to ME if this debate was revived again, having witnessed or contributed to the earlier arguments over this issue, at present I don't think the ME-ICC alone is enough to turn the tide in the editorial politics at Wikipedia unless a more obvious rift (that can be cited adequately) develops between medical authorities over ME vs CFS. However there has been a continuing trend in recent years towards increasing criticism from researchers about how ME/CFS is defined, and the ME-ICC is a looming sign of such a rift.
The authors are still working on Physician Guidelines. - Tekaphor (TALK) 04:12, 26 July 2011 (UTC)
Recent changes to Doctor-patient relations
I noticed a recent edit [22] which added the wording "In 2011, researchers working on CFS reported that this conflict had escalated to the level of death threats, personal and professional vilification, deterring further study of the condition in Britain." as a summary of an opinion piece by the BBC Science correspondent on its News Website. Whilst the article quotes Wessely and McClure, who have undoubtedly received unjustified criticism, it provides no referencable evidence to back its wider claims. The summary also omits quoted counterpoints. Whilst I have no objection in principle to such a point if supported by a proper RS, I don't think that this article fulfils these requirements. -- TerryE (talk) 18:30, 31 July 2011 (UTC)
- I see no indication that this is an "opinion piece" nor that it doesn't meet WP:RS. That it doesn't have the "counterpoint" as to why these researchers should be getting death threats seems rather irrelevant as to whether it is an RS or not. I note that other news services such as the AFP have picked up on this as well. I have therefore reverted. Yobol (talk) 18:39, 31 July 2011 (UTC)
- This articles generally falls under WP:MEDRS and is flagged as controversial. This is an online report, albeit in the BBC website, by a reporter. The only specific instances of abuse quoted are those against Wessely and McClure. The specific issues around the handling of patient controversies concerning Wessely have been widely discussed in these talk pages and I feel that the previous wording reflected a consensus treatment of this. Absolutely no evidence is referenced for wider trends, and I can't recall seeing any other UK based RS which support this claim. If we were to lower the bar on this article to allow any singleton claim by any reporter, then this article would descend into chaos. -- TerryE (talk) 18:50, 31 July 2011 (UTC)
- As the material that the reference is citing (the presence of death threats against researchers) is not a medical claim, MEDRS does not apply here. The BBC is absolutely an RS for material like this, so deletion of material on those grounds are spurious. You are more than welcome to wait for more comments here or take this to WP:RSN to get further input. Yobol (talk) 18:53, 31 July 2011 (UTC)
- I am talking and not reverting further ;-? I would welcome other editor comment. -- TerryE (talk) 18:58, 31 July 2011 (UTC)
- But as a codicil the article does not mention escalation. The death threats quoted only relate to the statements by one scientist scientist, Wessely. His poor relations with the patient community including attacks from its frustrated fringe go back years. The counterpoints by Shepherd that this sort personal intimidation is done by a very tiny tiny minority of the 250,000 ME suffers in the UK, and that the source of the justifiable compliant is that there has been very little almost nil government funded research into the biomedical aspects of this illness ..." . So if we are going to quote this article lets stick to the content. There is nothing new in it. All of these points have been discussed previously. -- TerryE (talk) 19:33, 31 July 2011 (UTC)
- Whether or not it has been discussed on the talk page is irrelevant to the inclusion of this point in the article, because, unless I'm missing something, that point is not currently in the article itself prior to the addition yesterday. Yobol (talk) 19:35, 31 July 2011 (UTC)
- But as a codicil the article does not mention escalation. The death threats quoted only relate to the statements by one scientist scientist, Wessely. His poor relations with the patient community including attacks from its frustrated fringe go back years. The counterpoints by Shepherd that this sort personal intimidation is done by a very tiny tiny minority of the 250,000 ME suffers in the UK, and that the source of the justifiable compliant is that there has been very little almost nil government funded research into the biomedical aspects of this illness ..." . So if we are going to quote this article lets stick to the content. There is nothing new in it. All of these points have been discussed previously. -- TerryE (talk) 19:33, 31 July 2011 (UTC)
- I am talking and not reverting further ;-? I would welcome other editor comment. -- TerryE (talk) 18:58, 31 July 2011 (UTC)
- As the material that the reference is citing (the presence of death threats against researchers) is not a medical claim, MEDRS does not apply here. The BBC is absolutely an RS for material like this, so deletion of material on those grounds are spurious. You are more than welcome to wait for more comments here or take this to WP:RSN to get further input. Yobol (talk) 18:53, 31 July 2011 (UTC)
- This articles generally falls under WP:MEDRS and is flagged as controversial. This is an online report, albeit in the BBC website, by a reporter. The only specific instances of abuse quoted are those against Wessely and McClure. The specific issues around the handling of patient controversies concerning Wessely have been widely discussed in these talk pages and I feel that the previous wording reflected a consensus treatment of this. Absolutely no evidence is referenced for wider trends, and I can't recall seeing any other UK based RS which support this claim. If we were to lower the bar on this article to allow any singleton claim by any reporter, then this article would descend into chaos. -- TerryE (talk) 18:50, 31 July 2011 (UTC)
- I would just like to express my view that the BBC is an acceptable source for material of this sort. I won't express a view on whether the material in the article is appropriately written. Looie496 (talk) 19:50, 31 July 2011 (UTC)
- As noted above, MEDRS doesn't apply to stuff like this. Anyone who has been around CFS for a while will know first-hand that this sort of thing happens regularly. Try having a sensible discussion about psychiatric causation of CFS in pretty much any forum and you'll get bombarded with nasty insults and the like. And it's not just Wessely that's having problems - if you read the article it talks about other researchers who have been put off looking into CFS. The bottom line is that a certain fringe group of patients don't like anything that suggests CFS might be psychiatric. Although it is a small group, it is very vocal. --sciencewatcher (talk) 21:26, 31 July 2011 (UTC)
- Yes, WP:MEDRS doesn't apply here, and it is covered by multiple news sources and also by BMJ and Nature articles (Wessely's recent claims of harassment have been making the rounds for weeks), but I agree with TerryE that counterpoints from Shepherd are unfairly omitted and should be included for some balance:
- [That has been incredibly frustrating for patients who have often received short-shrift from doctors, and been branded as malingerers - the victims of "yuppy flu" - in the media. Even the existence of the condition has only recently received widespread acknowledgement by the medical establishment. Speaking on the programme on Friday, ME Association's Dr Charles Shepherd condemned the abuse of researchers, but said sufferers had a justifiable complaint that almost no government-funded research was looking at the bio-medical aspects of the illness. "The anger, the frustration, is the fact that all this effort, all this government-funding, has just been going to the psychological side," he said.] - http://www.bbc.co.uk/news/science-environment-14326514
- By "other researchers who have been put off looking into CFS" Sciencewatcher must mean McClure since the article mentions a "torrent of abuse" aimed at virologists but only examples a single one who has actually been put off as a result. When the PACE trial was in the online news media, there were hundreds of reader comments spewing the typical vitriol towards patients and advocates who challenged it, apparently the "nasty insults and the like" aren't one sided either.
- A disturbing aspect of the coverage about alleged harassment and orchestrated "hate campaign" from the mysterious fringe group is the failure to distinguish or mention the legitimate concerns the ME/CFS community have about the flawed psychological research etc in question. The underlying assumption that only the crazy fringe radicals are involved is a potentially libelous stereotype. "Try having a sensible conversation" about biomedical findings and flaws in psychosocial studies with psychosomatic ideologues without being bombarded with strawmans about avoiding the stigma of mental illness and red-herrings about a mind-body connection. It's more complicated than that. - Tekaphor (TALK) 01:55, 1 August 2011 (UTC)
- A source for TerryE's statement, Shepherd attributes this behaviour to "a very, very tiny minority".[23] In the Nature article Wessely devotes a whole paragraph on pages 1 and 2 to describing that the supposed extremists and alleged abusers are in the minority.[24] Unfortunately these statements are still open to scapegoating genuine criticisms. - Tekaphor (TALK) 03:32, 1 August 2011 (UTC)
- But the point is that those psychosocial studies aren't flawed. These patient groups seem to prefer crappy pseudoscience (XMRV and the like) to good science (PACE). They just don't like psychiatry and do anything they can to discredit such studies, by bringing up bogus "flaws". Anyway, that is beside the point - lets just stick to reporting what's in the sources otherwise we'll have a neverending argument. --sciencewatcher (talk) 14:54, 1 August 2011 (UTC)
- Sciencewatcher, I agree with you that some patient groups are hostile to psychiatry having a role in ME/CFS and this is regrettable. Most just want to see a balanced investment in psychiatric vs biomedical research rather than the current ~100% vs ~0%. But neither your nor my PoV is relevant to this content. Let's just focus on agreeing consensus wording :-) -- TerryE (talk) 15:22, 1 August 2011 (UTC)
- QUOTING Sciencewatcher: "The bottom line is that a certain fringe group of patients don't like anything that suggests CFS might be psychiatric. Although it is a small group, it is very vocal."
- Do you have any proof or references that it is only small group of patients that don't like CFS to be tainted by psychiatry? How do you know that this is not the majority view of CFS patients. Drgao (talk) 15:34, 1 August 2011 (UTC)
I meant that the nasty group is small but vocal. The anti-psychiatry group is larger (perhaps the majority of patients). --sciencewatcher (talk) 17:51, 1 August 2011 (UTC)
- Slanderous myths about the ME/CFS community abound. According to Wessely's previous research the "anti-psychiatry group" is an unfounded stereotype [25] and his current opinion is such people are a small minority. [26] I suspect people in wider society who "abuse" patients are probably much more common than patients who "abuse" researchers. Sciencewatcher's notion that only individuals who are "anti-psychiatry" criticize the related research is another popular urban legend.
- On the other side of the coin there are people "who don't like anything that suggests CFS might be" biomedical and attempt to undermine the research. Obviously this isn't the place to discuss the alleged "bogus flaws" of the PACE trial, but portraying the psychosocial research in general as flawless is pretty ridiculous, there are flaws and weaknesses in all types of CFS research. I agree with TerryE, most just want a balance and increased funding. - Tekaphor (TALK) 02:29, 2 August 2011 (UTC)
- Re Yobol's last content change [27], the wording in the RS was verbatim from the Wessley interview so how on earth can we delete the reference to him and attribute it to McClure and Walport? The intro to article itself crisply summarised the main points, though perhaps we should keep the specific Wessley and Shephard points. "In 2011, the BBC reported that scientists working on CFS say they are being subjected to a campaign of vicious abuse and intimidation that is hampering research into the causes of the condition. One of these researchers, Simon Wessely, reported personal death threats. However, Charles Shepherd from the ME Association also emphasised that the underlying frustration stems from government funding of research focusing almost exclusively on psychiatric, rather than biomedical, causes." No repetition or false attribution. -- TerryE (talk) 01:07, 3 August 2011 (UTC)
- There is no false attribution. As I noted in my edit summary, Walport and McClure also noted that researchers are avoiding the area due to this vilification. People other than Wessely are making this point, and it is disingenuous to limit the attribution to only Wessely. Yobol (talk) 01:23, 3 August 2011 (UTC)
- Re Yobol's last content change [27], the wording in the RS was verbatim from the Wessley interview so how on earth can we delete the reference to him and attribute it to McClure and Walport? The intro to article itself crisply summarised the main points, though perhaps we should keep the specific Wessley and Shephard points. "In 2011, the BBC reported that scientists working on CFS say they are being subjected to a campaign of vicious abuse and intimidation that is hampering research into the causes of the condition. One of these researchers, Simon Wessely, reported personal death threats. However, Charles Shepherd from the ME Association also emphasised that the underlying frustration stems from government funding of research focusing almost exclusively on psychiatric, rather than biomedical, causes." No repetition or false attribution. -- TerryE (talk) 01:07, 3 August 2011 (UTC)
- You both have a point, but since "others" could mean anywhere between 2 individuals and billions of people, it is better to clarify. In the BBC article, at most it is "two others". - Tekaphor (TALK) 03:52, 3 August 2011 (UTC)
- @Yobol, now I am confused. Wessely gave that specific quote. My suggested text only limits the death threat statement to Wessely. The first sentence covers the wider point of intimidation and the potential consequences. -- TerryE (talk) 15:52, 3 August 2011 (UTC)
- Charles Shepherd has also had nasty threats - see http://www.meactionuk.org.uk/Dr_Shepherd_Statement.htm --sciencewatcher (talk) 15:56, 3 August 2011 (UTC)
- Good point but we've had a hard time in the past getting editor to accept sites like that of MEactionUK as RS. However it would still be covered by the statement "scientists working on CFS say they are being subjected to a campaign of vicious abuse and intimidation that is hampering research into the causes of the condition." I don't think that we should suppress this fact. I am just not sure why we should repeat it 2 or 3 times. -- TerryE (talk) 10:08, 4 August 2011 (UTC)
I don't see a problem including it. Sites like that are okay for personal statements and the like. It is just when they discuss medical research (critiquing the PACE trial, for example) that there is a issue. It might be worth including a mention of it to show that other researchers have had problems and not just Wessely. --sciencewatcher (talk) 14:38, 4 August 2011 (UTC)
- So if http://www.meactionuk.org.uk is reliable enough for what Shephard says about patients, is it also reliable enough for what Wessely says about patients? ;-) :-P - Tekaphor (TALK) 02:47, 6 August 2011 (UTC)
Review on definitions
Sciencewatcher reverted my edit here [28] and on the subarticle [29] relating to a review on CFS definitions, claiming "All of this is just POV. You can't use a single lower quality source to completely debunk the CDC criteria!".
This source does not "debunk" the CDC 1994 criteria. Criticisms of this criteria are common in the literature, but PMID 21029269 is a review dedicated to the subject of CFS definitions. The authors are basically saying what the NICE 2007 guidelines say, that no CFS definition has been confirmed as superior to the others. The CDC 1994 criteria is just the most commonly used, not the best, and its popularity has never been substantiated with evidence to support its presumed superiority. Has Sciencewatcher read the full text of this source, I have and no I'm not able to send it. He is welcome to provide counter-evidence that the CDC 1994 criteria is superior to the others.
In one of Sciencewatcher's above mentioned reversions he also removed text I added relating to the revised Canadian definition, calling it "POV". [30] The fact that Jason et al updated the CCC, and the changes I briefly described, are not "POV". - Tekaphor (TALK) 02:43, 2 August 2011 (UTC)
- It may be a "review" but it only has 1 citation so it isn't exactly authoritative. Again, you can't use a lower quality source to effectively debunk the CDC criteria. --sciencewatcher (talk) 14:36, 2 August 2011 (UTC)
- Nobody is saying CDC is 'superior', just that they are the most commonly used. However by putting in that it has been 'widely criticized' you are making it look as if the Canadian criteria are somehow better, which is POV. And I don't have any problem with you misrepresenting the source. The problem is with you inserting it in the text in this way. You need to consider WP:MEDRS and WP:WEIGHT. Adding the reference in that location as you did presents a slanted WP:POV on the article. --sciencewatcher (talk) 17:42, 2 August 2011 (UTC)
- The authors imply that the CDC 1994 criteria is presumed superior. I did not misinterpret the source. You also conflate the issue of general criticism towards CDC 1994 for lacking specificity, and limited but specific research suggesting the Canadian criteria is better at distinguishing CFS from depression and chronic fatigue. However I did have a closer look at the wording and citations within the full text of the "critical review" and posted the conclusions on my talkpage under "Review on definitions". Here is a permanent URL for when either this CFS talkpage or my own talkpage gets archived. Basically I conclude: "Overall I guess you do have some WP:MEDRS grounds for challenging the use of this review, especially if it doesn't rank particularly high as a reliable source. I will have to generally revisit these issues later using better sources as I'm certain such sources exist." - Tekaphor (TALK) 03:31, 3 August 2011 (UTC)
- You misunderstood. When I said "I don't have any problem with you misrepresenting the source" I meant "I do not believe that you are misrepresenting the source". The main problem is that the CDC criteria are the de facto standard because that is what most researchers are using. If there are criticisms then I think you'll need a better source. NICE guidelines would probably be fine. Also I don't think it has been proven that "Canadian criteria is better at distinguishing CFS from depression and chronic fatigue". As I understand it, it is just Jason saying this (and his methodology is suspect, as noted in the article by another reference). --sciencewatcher (talk) 15:18, 3 August 2011 (UTC)
OK. I used the word "may" rather than "proven" for the findings in Jason et al 2004, because this appears often in the Wikipedia article when there is limited evidence but not confirmed beyond a doubt. I still think there is a case for a brief mention somewhere, as it is cited 14 times in Google Scholar, is highlighted in a "critical review" article on definitions, there is no competing study of its kind, and it does not "debunk" CDC-1994 criteria if stating that "the Canadian criteria select[s] cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms".
Nacul et al 2011 PMID 21794183 is a recent large epidemiological study which used both the CDC-1994 and Canadian criteria; it was confirmed that the Canadian criteria selects a subgroup of patients with a higher prevalence and/or severity of symptoms in multiple domains, unsurprising since these are required for diagnosis. See the section "Symptoms and case definitions" and Table 7. Symptoms of depression and anxiety were also more prevalent in the Canadian group compared to the CDC-1994 only group but this is not necessarily the same as "psychiatric comorbidity" eg DSM-IV diagnoses and unfortunately the authors don't clarify further.
Of course it could be argued by people who endorse a broad approach, that just because the Canadian criteria selects a "subgroup" that is more symptomatic, doesn't necessarily mean it has better sensitivity and/or specificity. More research is needed and the Canadian criteria isn't used as much, but this seems to be gradually changing. Nacul et al 2011 stated that "the CDC-1994 and Canadian criteria in particular were chosen as they have been widely used worldwide" and recommend "combining the use of both the CDC-1994 and Canadian criteria for ascertainment of ME/CFS cases". Another recent study Ruiz et al 2011 PMID 21794854 examined 824 cases of CFS using both Fukuda and Canadian criteria, concluding that the Canadian criteria is "very important" and "showed that CFS is a homogeneous entity". - Tekaphor (TALK) 02:45, 6 August 2011 (UTC)
Allegations about Jason's methodological credibility
Sciencewatcher, please explain why "[Jason]'s methodology is suspect" as you claim above. A while ago you also wrote on the Wessely talkpage about the same Jason et al 2004 study we are currently discussing: "I had a look at the Jason paper, and it appears to have a severe methodological problem: they do a psychiatric evaluation, and if a patient is diagnosed with an Axis I psychiatric disorder they conclude that the illness has a psychiatric cause. However many breast cancer patients are diagnosed with Axis I psychiatric disorders, but we don't think that it is the cause of their illness." Your criticism is a mirage arising from the failure to investigate references:
Psychiatric conditions were diagnosed using the Structured Clinical Interview for DSM-IV which considers previously diagnosed medical disorders, and more importantly the paper refers us to Jason et al 1999 PMID 10527290 for further description of the "CF-psychiatric" controls and there was a complete medical evaluation. Even if for the sake of argument they didn't do a medical evaluation for their CF-psychiatric controls, the fact is such evaluations were mandatorily done on both CFS groups by definition and the result was that compared to the CDC 1994 criteria "the Canadian criteria select[s] cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms."
Jason et al 2004 is not used in the Wikipedia article with this "bogus flaw" :-) "noted in the article by another reference", so I assume you must mean your recent edit where discussion in the primary source Heim et al 2006 was used to add the following caveat to a *different paper* by Jason et al (2001), "however these psychiatric disorders were not specified and it is unclear if they were exclusionary for the 1994 CDC criteria".[31]
In the full text of Jason et al 2001 PMID 11708672 which IIRC you have, it states that "56 were diagnosed as having a primary psychiatric explanation for their fatigue, including substance abuse or dependence (CF-explained-psychiatric), 33 were diagnosed as having a medical explanation for their fatigue (CF-explained-medical), and 47 were designated as healthy controls." Under "Procedure" they again cite Jason et al 1999 for sample methodology, which gives us uncannily similar figures to these 56 CF-explained-psychiatric individuals ie "Nineteen participants had melancholic depression, 3 had bipolar disorders, 4 had anorexia nervosa or bulimia nervosa, 7 had psychotic disorders, 25 had drug- or alcohol-related disorders" (total = 58) and "33 had medical explanations for their fatigue" (same number as in Jason et al 2001).
Although Jason et al should have been clearer, it is possible that just like your baseless claim about Jason et al 2004, the authors Heim et al didn't bother to investigate the exact same given reference either in Jason et al 2001 or ask for clarification before publishing. All of those "CF-explained-psychiatric" conditions mentioned above are indeed exclusionary for a CDC-1994 CFS diagnosis (note: melancholic MDD is, non-melancholic MDD is not), and even if they weren't, it wouldn't explain why CFS was not associated with childhood abuse despite psychiatric comorbidity being supposedly common in CFS and considering that CF explained by a psychiatric diagnosis was associated with childhood abuse.
It was disingenuous of you to on this talkpage attempt to discredit the findings of Jason et al 2004 and Leonard Jason's entire methodological credibility in general merely because a supposed potential weakness in a *different paper* was pointed out by authors of another paper and then "noted in the [Wikipedia] article" ie noted by you. This sounds like the smear tactics you accuse Wessely et al's critics of unfairly doing, and just imagine the frothing at the mouth here at Wikipedia if anyone attempted to challenge a Wessely et al study or his entire methodological credibility as generally suspect merely because a lack of clarification existed in one of his other papers, as you have done to Leonard Jason. - Tekaphor (TALK) 02:12, 6 August 2011 (UTC)
Exploring the supposed association between childhood trauma and adult CFS
The subarticle stated: "Childhood abuse, stress, or trauma may be predisposing factors to CFS."[32] In Sciencewatcher's edit summary regarding the Jason et al 2001 text which immediately follows that sentence, he wrote "added info about potential flaw in primary study used to debunk review".[33] The review in question is Hempel et al 2008 PMID 17892624 [34] which didn't include Jason et al 2001 but does mention premorbid stress (Kato et al 2006) and childhood trauma ie [sexual, physical, and emotional abuse and emotional and physical neglect] (Heim et al 2006). It would be sloppy to assume that all psychological factors are synonymous and interchangeable, so these two studies are not considered confirmatory in the review.
Kato et al 2006 is a prospective study, self-reported "stress was assessed by the question, 'do you experience your daily existence as being very stress filled?'". Their "patients" 25 years later were labelled "CFS-like" because although past medical records were considered the authors did not actually conduct a medical evaluation, something Sciencewatcher called a "severe methodological problem" when he believed it applied to Jason et al 2004 and dismissed the results on that basis alone.
Heim et al 2006 conducted a medical evaluation but like Jason et al 2001 the psychometrics were retrospective and therefore prone to recall bias for decades old memories. Although it initially used CDC-1994 criteria "as applied following recommendations of" Reeves et al 2003, it also applied the quantification of symptoms from Reeves et al 2005 CDC criteria (which was borne from Reeves et al 2003), which somehow massively inflates the prevalence figures up to 10 times.[35] This alone makes it questionable when considering that CFS is a wastebasket diagnosis of exclusion with symptoms that are similar to those in many other medical and psychiatric conditions.
Furthermore, in a small study, Jason et al found that 38% of individuals with MDD were misclassified as having CFS under the Reeves et al criteria.[36] Reeves et al responded to this and discussed potential weaknesses in Jason et al's study.[37] Jason et al responded to this criticism [38] and also later published another study confirming that the Reeves et al 2005 criteria has "serious specificity and/or sensitivity problems".[www.scirp.org/Journal/PaperDownload.aspx?paperID=1622[predatory publisher]&fileName=Psych.20100100002_67336991.pdf] There is also PMID 21777306 where an international group of 26 researchers explicitly state that those meeting ME-ICC "should be removed from the Reeves empirical criteria".[39]
Maybe some psychosomatic ideologues and a few others dwelling in the ambiguity of the mind-body connection do not care about such convenient conflation, but the scientific consensus for years has been that CFS is not synonymous with MDD, so issues of specificity and sensitivity are crucial before firm conclusions can be made about studies like Heim et al 2006, where using CFS criteria which probably conflates CFS with MDD (and perhaps other conditions too which are more likely to occur after childhood stressors and may influence recall), unsurprisingly found that "The risk for CFS conveyed by childhood trauma increased with the presence of concurrent psychopathology."
I guess Jason et al 2001 as used in the article is contradicting a single small retrospective study cited in a more reliable review article, but there is no solid evidence either way yet on childhood trauma/abuse. If I apply what Sciencewatcher said about Jason to Heim, I could say "I don't think it has been proven that childhood trauma increases the risk of CFS in later life, as I understand it the evidence is contradictory, and it is just Heim saying this and her methodology is suspect, as noted by Jason here [40]." Obviously not a RS, just making a point, there are RS for criticism against Reeves 2005 CDC criteria but they may not specifically criticize Heim et al 2006 for using it.
To be fair a replication (Heim et al 2009) was published in by the same authors using similar methodology.[41] Also more recently there is Johnson et al 2010 PMID 20348356 which uses CDC 1994 criteria but is also retrospective and had no control group. In the full text, "The table reveals that our sample is comparable to Heim et al.’s (2006) on physical and sexual abuse and physical neglect, while notably lower on emotional abuse and emotional neglect. Overall, 45.7 percent of the sample met established cut-off scores for one or more types of childhood victimization." To compare with Heim et al 2006 on childhood trauma, it was 63% for CFS and 37% for controls.
Weaknesses aside, it would seem the weight of WP:MEDRS evidence is stronger for Heim et al than Jason et al, but there are concerns about the evidence. As for the Wikipedia sentence in question, it references a very small number of studies; Hempel et al 2008 used "strict" inclusion criteria and describes the methodology of these included studies as varied but poor overall (in general, not necessarily the stress and trauma related ones) and notes that "a significant association was not replicated in more than two studies". Therefore I changed the sentence to: Limited evidence suggests that childhood abuse, stress, or trauma may be predisposing factors to CFS. [42] - Tekaphor (TALK) 02:43, 6 August 2011 (UTC)
- While this is all very interesting and I'd love to discuss Jason further, it is irrelevant to the article and just causes WP:TLDR (but I should note that I did read all your comments - but others might not). I think we should just stick to the sources. Regarding childhood abuse, there seems to be pretty robust evidence of a link to CFS. Saying there is 'limited evidence' is clearly POV. --sciencewatcher (talk) 16:49, 6 August 2011 (UTC)
- It was important to thrash out all the details as to why the evidence is limited. In your reversion you state, "there is pretty robust evidence. saying 'limited evidence' is pov".[43] Apparently we have a different understanding of what constitutes robustness. So sticking to the sources, according to Hempel et al 2008, [the current Wikipedia text] is based on a single study each and not replicated and even partly contradictory for stress (see below), and the review itself concludes that "The quality of the reporting varied but was poor overall, especially with regard to the statistical methods, given the dependency of the results on the methods used." So, LIMITED EVIDENCE, although the qualifier "may" is better than nothing.
- Jason et al 2001 didn't make the "strict" inclusion criteria of Hempel et al 2008 (?), but neither did any additional studies into premorbid stress and childhood trauma, except "Huibers et al. (2004b)", a 44-month prospective study of fatigued employees which did measure "psychological distress" and did not find it to significantly predict those that would go on to develop CFS-like illness.[44]
- For balance I also provided other evidence published after 2008, which had the same or similar weaknesses/flaws, one wasn't even controlled. I already conceded that WP:MEDRS gives preference to the "pro" stress/abuse research, but it also recommends summarizing the scientific consensus and "[making] readers aware of any uncertainty or controversy". MEDRS is a guideline which *recommends* high quality secondary sources where possible, but WP:NPOV is a mandatory policy which states we *must* fairly represent all significant viewpoints.
- A single "positive" retrospective study which used questionable CFS criteria, a single "positive" long-term prospective study which didn't evaluate their CFS-like patients, and a single "negative" short-term prospective which didn't evaluate their CFS-like patients either; this is not my understanding of "pretty robust evidence" for childhood trauma and/or premorbid stress respectively. I was the one who originally introduced the two "positive" studies to the Wikipedia article and expanded on the details before the section got dumbed down a while ago. I regret not properly examining the evidence first, which is limited at best and fatally flawed at worst.
- As you say there is the replication (by the same authors) PMID 19124690 which confirmed the association and found a 6-fold increase in risk of developing CFS after childhood trauma. Also there is a more recent study that uses data from the Canadian census here. I'd be interested in hearing more editors' opinions on this. Should we include all of these studies even though they aren't in the review? I don't seem to have the full-text of the Jason 2001 study. If you have it, would you be able to email it to me? --sciencewatcher (talk) 14:50, 10 August 2011 (UTC)
- I am going to chime in here. Sciencewatcher may be willing to accept this mode of working, but I am not: per MEDRS we need to stick to secondary review papers as sources. It is a very bad idea for us to be trying to evaluate primary research sources -- we are not qualified to do so. If views are not covered in proper (secondary) sources, we are not required to cover them in the article. Looie496 (talk) 15:11, 10 August 2011 (UTC)
- I wholly support what Looie496 has written. The dangers of playing 'checkers' with research papers for pieces, as way of creating an encylopaedia, is well illustrated by Sciencewatcher's attempt at making a King piece out of the paper on childhood abuse, where Sciencewatcher apparently takes at face value the claim of the authors that: "Our findings are critical to inform pathophysiological research and to devise targets for the prevention of CFS." This assertion is based upon a defective logic, that is "six times the risk of x = significance to x". Such a condition of significance may exist but it requires demonstration beyond the scope of the single paper quoted. If anyone doesn't get what the problem is: ask the question: how many of the estimated 17 million people affected worldwide by CFS have a history of childhood abuse ? If the figure were to be large compared to the global popultion, then childhood abuse could have significance to CFS, but if childhood abuse were only found in CFS suferer at the same rate or less of the global prevalence - it could have only a higly limited significance to CFS. This is not to say that CFS is not significant to the experience of surviving childhood abuse - but that is a wholly separate issue. The position recommended by Looie496 obviates the problems that using single papers inevitably involves; given that secondary sources exist in sufficient numbers and scope (CDC, NICE etc) to support an effective WP article, editors have no reason to be other than to be self disciplined in this issue. --In Vitro Infidelium (talk) 13:01, 13 August 2011 (UTC)
- I think Looie and In Vitro have somehow got the wrong end of the stick. It was me who was arguing for just including the studies included in the reviews (as I have always done). Check my recent edit where I removed the primary sources on child abuse from the article and just left the review. My comment above was to see if there were any cogent arguments for including primary studies not included in the review (as there occasionally are). There are occasionally good reasons for including primary studies that are not in any reviews, and we have done so in this article on a number of occasions. However I agree with Looie that we should stick to the reviews unless there is a compelling reason not to. --sciencewatcher (talk) 22:11, 13 August 2011 (UTC)
- Yes, PMID 19124690 is a replication by the same authors but employed the same problematic methodology, eg it was retrospective and used flawed CFS criteria, as previously explained. As for the (again retrospective) cross-sectional "Canadian census study", I posted a longer comment on IVI's talkpage [45] since you moved the conversation there, but it is probably useless for the following several reasons: it didn't evaluate their CFS patients ie it merely asked them if they had been diagnosed by a "health professional" (both Newton et al and PACE suggests this is unreliable), the reported prevalence of CFS-like illness was 1.3% and note that the CDC has conducted a study which reported a prevalence of about 1.6% for CFS-like illness but only about 0.2% for confirmed CFS so CFS-like is almost meaningless. I also give examples of how another supposed association (between childhood abuse and adult chronic pain) was based on retrospective studies while prospective studies have refuted it even in the same group of people, questioning the reliability of retrospective reports of childhood abuse/trauma from adults who are in chronic pain and/or have PTSD. For CFS there are only either retrospective studies which used questionable CFS criteria, or prospective studies which didn't evaluate their CFS-like patients, so overall the evidence discussed so far is undeniably weak, and I still maintain that according to the secondary source in question the evidence is limited and this should be stated in the article. - Tekaphor (TALK) 01:38, 27 August 2011 (UTC)
- I had a quick look at Hempel, and I didn't see where it said the evidence is 'limited'. Can you clarify? --sciencewatcher (talk) 13:35, 27 August 2011 (UTC)--sciencewatcher (talk) 13:35, 27 August 2011 (UTC)
(out)Reply to SW - apologies I had indeed misunderstood what you had written. I have now got around to replying on my talk page to the specific issues of the 'dysregulation' hyopthesis. [46] --In Vitro Infidelium (talk) 16:38, 29 August 2011 (UTC)
Sciencewatcher, Hempel et al don't use the word "limited" in their review, but if you want to get literal, the word "may" in the Wikipedia article isn't used in the review either. The current Wikipedia text which cites this source is essentially based on a single study each for both "stress" and "trauma" and not replicated within the review and even partly contradicted for stress, and the review itself concludes that "The quality of the reporting varied but was poor overall, especially with regard to the statistical methods, given the dependency of the results on the methods used." Generally that is, not necessarily or specifically the stress and trauma studies, but still, after two decades of sweeping generalisations and stress psychoendobabble, the evidence from the research is limited at best. During the discussion on In Vitro Infidelium's talkpage you claim that the stress hypothesis applies to all patients and you're unaware of any evidence that it doesn't.
You claim that all the main theories on Wikipedia's CFS pathophysiology subarticle "that have any significant evidence are behavioural/stress (which is essentially the same thing anyway)". Behaviour and stress are not synonymous, and the article is in need of work. The retrospective "action proneness" factor is somewhat contradicted in the van Galeen et al 2007 systematic review on personality, and the other behavioural factors are mostly based on selective interpretion of a single study or a hypothesis. The first 3 individual stress studies cited are retrospective and relatively small; Salit (1997) found self-reported stress in a majority but such high figures have not been replicated, Hatcher & House (2003) found significant self-reported stress in a minority (and in the introduction discuss several previous studies which did not find an association), Theorell et al (1999) found a small increase in the prevalence ratio of self-reported stress months before CFS onset compared to controls but a larger increase for self-reported infections which PREceded the occurance of psychological stress and therefore as the authors themselves noted could have sensitised the patients to the vulnerability of stress. The other larger self-reported stress study (Kato et al 2006) did not evaluate their CFS-like participants so is dubious as explained earlier. AFAIK there is no meta-analysis on the issue and the best source according to WP:RULES is the Hempel et al 2008 review as explained earlier; for childhood trauma there is a single retrospective study using flawed CFS criteria (Heim et al 2006), for the long-term effects of self-reported stress a single prospective study which didn't evaluate their patients (Kato et al 2006), and the closest thing to a prospective adult stress study actually refuted the role for stress in the eventual development of CFS-like illness for newly fatigued employees (Huibers et al 2004b). So, limited and inconclusive evidence at best.
You have implied on numerous occasions that the HPA axis is the central mediator of CFS symptoms. A number of CFS overview papers claim that HPA axis function is important in CFS and cite the literature selectively, but I'll stick to dedicated reviews on HPA function in CFS. Although methodological confounders concerning the conflicted results are discussed, several reviews on the subject suggest that about half of the HPA axis studies for CFS do not find evidence of either hypocortisolism or an abnormal ACTH challenge (Cleare 2003 PMID 12700181 | Cleare 2004 PMID 15036250 | Van Den Eede et al 2007 PMID 17596739). As Cleare 2004 points about, "there is no specific change to the HPA axis in CFS and that the observed changes are of multifactorial aetiology, with some factors occurring as a consequence of the illness. Nevertheless, the HPA axis might play a role in exacerbating or perpetuating symptoms late on in the course of the illness. [...] recent prospective studies of high-risk cohorts suggest that there are no HPA axis changes present during the early stages of the genesis of fatiguing illnesses [...] the evidence suggests that during the early stages of fatigue genesis, the HPA axis is not an important factor." Cleare also suggests that CBT is the best way to deal with HPA hypofunction, but his name is on Roberts et al 2010 PMID 19607750 which reported that hypocortisolism instead predicts a poorer response to CBT (Leonard Jason has reported similar findings). Furthermore, in a recent meta-analysis on HPA axis activity in functional somatic disorders (Tak et al 2011 PMID 21315796) it reported that "statistically significant basal hypocortisolism was observed in CFS subjects compared to controls (SMD -0.14, 95% CI -0.28 to 0.00, p=0.047)". No such association was found for FM and IBS, despite being supposed "stress related disorders" too. Also note that it is "significant" because p=0.047 but a standardised mean difference of -0.14 for the CFS group is a rather small effect size (http://www.medscape.org/viewarticle/569729). So again, limited evidence at best.
This may be useful for the Wikipedia article, but clearly a blanket application is inappropriate. I'll address the other claims on IVI's talkpage at another time. - Tekaphor (TALK) 01:10, 20 September 2011 (UTC)
Veerasamy Ravichandran, et al XMRV paper
A new study has popped up on patient email lists and blogs. Its contributors are all US government types -- from the FDA, the NIH, and the National Institute of Neurological Disorders and Stroke. It tests in a lab setting, whether XMRV can infect neurological tissues and confirms this is the case. This opens up a number of possibilities and concerns that are already of great interest to the patient community. I posted a short description and linked to an image from the paper at File:Progenitor derived neurons with XMRV marker.png (the entire peer-reviewed paper is CC-BY-2.0). Naturally, within an hour a certain someone popped up to revert this information (from here and from Pathophysiology of chronic fatigue syndrome) as 'not relevant.'
While I can think of plenty more to say, none of it is polite enough to say in even this talk page.
-- Strangelv (talk) 21:06, 21 September 2011 (UTC), who used to log in to Wikipedia a lot more often than once a year, and hasn't been able to refer anyone to this article since early 2008.
- I think you need to be careful with those patient blogs :) --sciencewatcher (talk) 21:18, 21 September 2011 (UTC)
- (ec) The paper does not address the evidence that led to an almost universal rejection of the XMRV theory by the scientific community, and in any case it does not meet the standards of WP:MEDRS, and was published in a pretty weak journal to boot. Per MEDRS the findings should not be cited in this article unless they receive coverage from reputable secondary sources, such as high-quality review papers. Looie496 (talk) 21:20, 21 September 2011 (UTC)
- What Looie said. However the reason I said it is not relevant is because there is no mention of CFS in the study. Adding it means you are doing synthesis - see WP:SYNTH. --sciencewatcher (talk) 21:33, 21 September 2011 (UTC)
Diabetes
I'm surprised nobody has found the symptoms of full blown type 2 diabetes to be remarkably similar and maybe identical to CFS. I know I have all the symptoms of CFS, the only difference being, I know from my lifetime addiction of soft drinks, what I have from self diagnosis is called diabetes, and not CFS. Brain fog, the inability to concentration, continuing and persistent mental and physical exhaustion, labored breathing, the whole list of pyschological problems, all due to cellular insulin resistance, makes a lot more sense as an explanation than creating a new designer boogey man disease with no known cure that provides no answers whatsoever for those suffering from constant fatigue. The other symptoms... go right along with a poor diet heavy on soft drinks and junk food, caffeine withdrawl, and a sedentary indoor lifestyle (which results from being fatigued all the time and staying at home indoors because you're too tired to go out). I know I have chronic cough from a stomach ulcer, not caused by anything called CFS, but from all that phosphoric acid I drank in sodas, which worsens it when I resume drinking them.
Diabetes is an all time high world wide epidemic right now due to the pervasivness of sugar, corn syrup, and white flour in the Western Diet. I bet if someone was to map a "CFS belt", it would coincide with the "Diabetes Belt", and "Stroke Belt". Both of which center around the major headquarters of the worlds major soft drink corporations. I say all this not to belittle or cheapen the suffering of people with CFS, but rather to propose it as a mis-self-diagnosis, and the real problem you are suffering from is diabetes. Try solutions that work to mitigate the symptoms of diabetes and see if they work for you, something closer to a Prehistoric diet. Low glycemic index foods like nuts, raw peanuts, raw fresh vegetables, cucumbers, chicken, honeydews, salads, plain water... while eliminating entirely soft drinks, sweet tea, orange juices and other juices, milk, ice cream, bread and bagels, pasta, chocoloate, alcohol, potatoes, and dozens of other foods that metabolize quickly into sugar, burn up, and then leave you more fatigued than you were before.
In fact, test foods... and watch, which foods when you eat them suddenly pep you up, and then leave you worse off than you were before, and make a list of them as foods to avoid. Make a note of foods that seem to have no immediate effect on you at all... and eat more of them. These foods metabolize slowly, and won't send you up, to come crashing down later, but release their energy slowly over time, which is exactly what you want to feel better over a longer period of time. Think of your body like a fireplace. If you throw gasoline (sugar, flour) into your fireplace, it will flare up, and then die down, and leave you colder than before, and you'll have to keep doing this ever two minutes to stay alternatively hot, then chilly cold. You don't want this. What you want to put in the fireplace are hardwoods such as oak (low glycemic index foods like nuts and high fiber vegetables) that take a long time to process and burn, and slowly warm up the room over many, many hours and keep you warm, and then you just throw another piece of hardword on the fire to keep it going for more hours. You never use gasoline in a fireplace, and likewise you should you throw sugar into your body? I learned all this the hardway, and the food industry fooled us all... most of the food sold in grocery stores is not food at all, but toxic and harmful to the human body.
- Wikipedia is not a forum. You would be better off posting something like this in one of the many CFS forums available. – RobinHood70 talk 03:15, 23 September 2011 (UTC)
- There are certainly some similarities between CFS and diabetes, and we do already mention it as a differential diagnosis. --sciencewatcher (talk) 14:29, 23 September 2011 (UTC)
XMRV no longer relevant
In the light of http://www.sciencemag.org/content/early/2011/09/21/science.1213841 the paragraph in the article section on Pathophysiology: "A 2009 study reported an association of the retrovirus xenotropic murine leukemia virus-related virus (XMRV) and CFS, but many independent laboratories have detected no XMRV in CFS patient samples.[54][55] Researchers suspect that contamination was responsible for the initial positive results, a hypothesis supported by several independent studies.[56][57][58] The editors of Science, in which the 2009 report was published, have attached an "Editorial Expression of Concern" to the report indicating that the validity of the study "is now seriously in question".[59]" is redundant in the CFS article. Concievably XMRV would form par of a history section - although my view is that is too 'newsy' for an encyclopedia and I'd prefer to see the whole thing gone. The Blood Donation heading in the Society and Culture section needs to remain - however the NHS reference was always misplaced because the NHS inhibition of M.E/CFS patients is based in terms of possible harm to the patient - not infection of the blood supply. Is there argreement to these edits ? --In Vitro Infidelium (talk) 08:57, 26 September 2011 (UTC)
- Still relevant but belongs in the history section.Doc James (talk · contribs · email) 10:09, 26 September 2011 (UTC)
- And condense it and most of the refs to the False Positive Cohen article. Ward20 (talk) 14:00, 26 September 2011 (UTC)
- Just adding my support - I agree with what Doc James said: relevant in a history section, but it no longer belongs in the Pathophysiology section. While there's still the Lipkin study that many people are waiting for, the evidence just doesn't support an XMRV association at this point. If by chance Lipkin finds something everyone else missed, we can always revisit it at that point. – RobinHood70 talk 16:12, 26 September 2011 (UTC)
- And condense it and most of the refs to the False Positive Cohen article. Ward20 (talk) 14:00, 26 September 2011 (UTC)
- Some news regarding the partial retraction a few days ago by Mikovits et al of their original XMRV paper: Chronic fatigue study partially retracted - September 22, 2011 Drgao (talk) 14:53, 28 September 2011 (UTC)
- Shifted to History section - apologies there's a ref problem I can't seem to fix, 111 should have this URL linkout http://www.sciencemag.org/content/early/2011/09/21/science.1213841.full.pdf but I can't get it slot in without causing a Cite error. --In Vitro Infidelium (talk) 14:45, 9 October 2011 (UTC)
- It's not really desirable to link to a pdf that requires a subscription to download, so I suggest omitting that url anyway, or at most linking to the page with the abstract. Looie496 (talk) 15:01, 9 October 2011 (UTC)
- Just to note: they actually make that pdf available for free if you register on the site (no need to pay or subscribe). --sciencewatcher (talk) 15:17, 9 October 2011 (UTC)
- As SW says - it should remain available without subscription for up to six months - it will eventualy be replaced as the citeable text by the version that comes out in print, which will indeed be available only as an abstract, but that abstract may differ from that currently given on Scienceexpress, so the article will need editing in any event. I still can't see th error I'm making with the cite so I'll have to leave it to someone else to make the choice - the current abstract is here: http://www.sciencemag.org/content/early/2011/09/21/science.1213841 --In Vitro Infidelium (talk) 15:21, 9 October 2011 (UTC)
- Just to note: they actually make that pdf available for free if you register on the site (no need to pay or subscribe). --sciencewatcher (talk) 15:17, 9 October 2011 (UTC)
- It's not really desirable to link to a pdf that requires a subscription to download, so I suggest omitting that url anyway, or at most linking to the page with the abstract. Looie496 (talk) 15:01, 9 October 2011 (UTC)
- Shifted to History section - apologies there's a ref problem I can't seem to fix, 111 should have this URL linkout http://www.sciencemag.org/content/early/2011/09/21/science.1213841.full.pdf but I can't get it slot in without causing a Cite error. --In Vitro Infidelium (talk) 14:45, 9 October 2011 (UTC)
(←) Just fixed the ref, I think. Is that what you were looking for, IVI? – RobinHood70 talk 15:39, 9 October 2011 (UTC)
Bergen, Norway Study, 2011
For those who most regularly care for the CFS/ME entry, I wanted to share recent Norwegian findings which implicate CFS as an autoimmune disease which, in early trials, has responded positively to the cancer drug Rituximab.[37]
"Two researchers at Haukeland University Hospital in Bergen, Norway, published a study 19th of October regarding the successful usage of B-cell depletion (reduction) as therapeutic intervention in chronic fatigue syndrome (CFS or ME). The study shows various positive results concerning ME patients, and where there are no serious side effects. Since the news was released 19th of October, a broad range of norwegian and international news articles and videos have been published. Here is a collection the media coverage:
“It’s the most encouraging drug result so far in the history of this disease,” according to Charles Shepherd, medical adviser to the UK ME Association. “Although it’s a small trial, it’s produced dramatic results.”
Interview with Prof. Scheibenbogen, Institute of Medical Immunology at Berlin Charite: “A breakthrough in the treatment of this medical condition”
Statement from Prof. Klimas, Director at the ME/CFS and Gulf War Illness Research Center: “The ME/CFS study by Mella and Fluge is a key study for our field”
International media coverage – articles:
- 19.10.11 New Scientist Chronic fatigue syndrome eased by cancer drug
- 20.10.11 Der Spiegel Mysteriöse Krankheit CFS: Krebsmittel kann chronisch Erschöpften helfen
- 20.10.11 Fatiago e.V “CFS: Norwegische Onkologen finden wirksames Medikament”
- 22.10.11 Die Welt CFS: Wenn extreme Erschöpfung das Leben zur Qual macht
- 24.10.11 Daily Mail Cancer drug ‘key to treating chronic fatigue’as experts say syndrome may be caused by defective immune system
- 24.11.11 BBC News Immune system defect may cause ME
- 24.10.11 Pharmaceutical Business Review Rituximab proven to treat ME/CFS
- 24.10.11 WebMD Cancer Drug May Also Treat Chronic Fatigue Syndrome…
- 24.10.11 News10NBC Possible cause found for Chronic Fatigue Syndrome
- 24.10.11 Local12 Cancer Drug May Also Treat Chronic Fatigue Syndrome
- 24.10.11 News-Medical.net Rituximab may alleviate chronic fatigue syndrome…
- 24.10.11 ME Association’s website BREAKING NEWS: ‘CFS eased by cancer drug’
- 24.10.11 European Society for ME’s site A Drug For ME/CFS? The Rituximab Story
- 24.10.11 ABC News’ website CFS: Study Supports Autoimmune Disease Theory
- 24.10.11 BioCentury Rituxan: re-energizing CFS (subcription necessary to read article)
- 25.10.11 Thirdage.com CFS is an Autoimmune Disease, Study Says
- 25.10.11 Research1st Rituximab Trial Shows Promise
- 25.10.11 ME/CFS Australia CFS eased by cancer drug
- 26.10.11 The Huffington Post CFS — A Treatable Autoimmune Disease
- 26.10.11 Bioworld International Norwegian Group Targets CFS Via B-cell Depletion (subcription necessary to read article)
- 26.10.11 ANBI, dutch patientgroup website Kankermedicijn geneest ME/CVS?
- 26.10.11 Dutch blogg: Het Alternatief
- 26.10.11 aerzteblatt.de Hilft Rituximab bei chronischem Erschöpfungssyndrom?
- 28.10.11 ME/CFS Foreningen, Danmark Opsigtsvækkende behandling"
See source site for additional press coverage listingsPillartopost (talk) 22:26, 9 November 2011 (UTC)
- The Rituximab trials are already mentioned under Treatment of chronic fatigue syndrome and Rituximab. I think until larger Phase II or Phase III trials are conducted, that's probably all that's warranted. – RobinHood70 talk 22:46, 9 November 2011 (UTC)
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{{cite journal}}
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ignored (help) - ^ a b Cite error: The named reference
Cairns2005
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- ^ Cite error: The named reference
PMID 17853290
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: Unknown parameter|month=
ignored (help)CS1 maint: unflagged free DOI (link) - ^ Cohen, J. (2011). "More Negative Data for Link Between Mouse Virus and Human Disease". Science. 331 (6022): 1253–1254. doi:10.1126/science.331.6022.1253. PMID 21393520.
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- ^ Chronic Fatigue Syndrome for Dummies By Susan R. Lisman, Karla Dougherty, Chapter 3, page 49
- ^ The Journal of Clinical Endocrinology & Metabolism Vol. 84, No. 6 2263-2264 1999, Investigations of Hydrocortisone and Fludrocortisone in the Treatment of Chronic Fatigue Syndrome, Riccardo Baschetti, M.D. [49]
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- ^ http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html
- ^ http://bergento.no/2011/11/summary-media-coverage-cfs/