Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 16

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Diagnosis

Latest comment: 12 years ago12 comments6 people in discussion

This is a continuation of discussion in Archive p.15, section #2 "There are characteristic laboratory abnormalities": Talk:Chronic fatigue syndrome/Archive 15#There are characteristic laboratory abnormalities

I agree with Tekaphor, the known biomarkers should be mentioned prominently. This paper is known to be inaccurate. This is a Reeves paper that cites a 2001 Stephen Straus paper for this assertation. Papers by known charlatans such as Straus, Reeves, White etc. should be rebuttably presumed to be inaccurate. This is the only prudent course, imo. JustinReilly (talk) 05:05, 27 November 2011 (UTC)

I changed "There are no characteristic laboratory abnormalities to diagnose CFS" to "While there are laboratory abnormalities in CFS, there is no commercial diagnostic test available" which is more accurate/ not misleading. Comment welcome. JustinReilly (talk) 05:05, 27 November 2011 (UTC)

We need a review article to support this opinion if we are to add it. Thks. --Doc James (talk · contribs · email) 05:56, 27 November 2011 (UTC)

If there is no review paper, there should at least be a short sentence such as: "Proposed biomarkers and diagnostic methods include, X[1], Y[2], Z[3]." It is also a myth that all potential biomarkers and diagnostic methods have been debunked, instead there is usually a shameful lack of followup. There is no *universally accepted* diagnostic laboratory test or biomarker for CFS, however the current text, which is verbatim from a CDC webpage without that caveat, helps to perpetuate the falsehood that there are no biological abnormalities in CFS. Due to complaints about this same implication, the CDC have recently but conservatively updated their CFS website to include the following statement:

"CFS remains a diagnosis based on medical history, illness symptoms, physical examination, and exclusion of certain illnesses using a standard group of laboratory tests (1994 International Definition). For example, mononucleosis is an illness that would exclude a CFS diagnosis. However, there are tests such as imaging and physiological assessments that can be used to diagnose underlying or associated disease(s). Examples of tests to identify disease processes include but are not limited to: specific cultures or serological tests if an ongoing infection is considered, and MRI or other neuroimaging procedures for diseases such as multiple sclerosis. Physiological testing such as sleep studies, exercise testing (including VO2 max), or tilt table testing are appropriate to address specific questions, often in consultation with a specialist." [1] - Tekaphor (TALK) 01:53, 1 December 2011 (UTC)

That language from CDC (illustrated by the sentence beginning, "Examples of tests to identify...") seems to suggest a battery of tests to exclude other conditions - not to detect signs of CFS (quite the contrary). Are there any biomarkers that reproducibly appear in people suffering from CFS (supported by a reliable source)? -- Scray (talk) 06:41, 1 December 2011 (UTC)

I did not mean to give the impression that the newer CDC statement was about specific tests to diagnose CFS. However, the newer statement is not solely about exclusionary tests either, it also mentions tests to aid "management". For example, sleep testing, exercise tests and tilt table test. Abnormalities on these do not necessarily exclude a CFS diagnosis, in fact CFS is associated with such, a large proportion of patients will show fragmented sleep or reduced sleep efficiency, test positive for some form of orthostatic intolerance, and show significant dysfunction in a serial exercise test when compared to sedentary controls (eg abnormally low anaerobic threshold, major decline in VO2 on 2nd test compared to the 1st). I'm sure there are others, maybe JustinReilly is aware of more. I don't have all these references on hand right now, just trying to aid the conversation. Another promising biomarker or diagnostic method would include abnormal mRNA expression following exercise, I added this to the CFS Pathophysiology subarticle a few months ago, citing a book listed on PubMed.[2] - Tekaphor (TALK) 06:18, 2 December 2011 (UTC)

I think you misunderstand the CDC statement considering the context ("disease processes", as I indicated in my prior comment). For example, the sleep study is useful for diagnosing obstructive sleep apnea, and tilt table for postural orthostatic tachycardia syndrome. -- Scray (talk) 02:48, 3 December 2011 (UTC)

The sleep study can also useful for people who do not meet criteria for OSA but have other sleep issues which are not exclusionary for a CFS diagnosis. POTS is a form of orthostatic intolerance which is also common in CFS and again not exclusionary. Exercise testing is currently being researched and developed as a specific diagnostic tool for CFS. The CDC's wording could be clearer, but I interpreted the last sentence the way I did because abnormalities on these tests are not necessarily exclusionary for a CFS diagnosis and the CDC claiming so would not only be going out on a limb against scientific consensus but also contradicting their own website. On their Treatment Options page [3], they state the following:

"Sleep Hygiene: The majority of CFS patients experience some form of sleep dysfunction. Common sleep complaints include difficulty falling asleep, hypersomnia (extreme sleepiness), frequent awakening, intense and vivid dreaming, restless legs and nocturnal myoclonus (night-time muscular spasm). Most CFS patients experience non-restorative sleep as compared to their pre-illness experience."

"Orthostatic Instability Treatment: Some patients with CFS may also exhibit symptoms of orthostatic instability (relating to standing upright), in particular frequent dizziness and light-headedness. Depending on severity and clinical judgment, these patients should be referred for evaluation by a cardiologist or neurologist. Specific treatment for orthostatic instability should only be started following confirmed diagnosis and by clinicians experienced in evaluating therapeutic results and managing possible complications."

Although blundering inconsistencies from the CDC regarding CFS wouldn't be new, apparently they do not regard sleep dysfunction and orthostatic instability as exclusionary (which should show up in testing if significant), as your interpretation of the sentence in question would suggest. As for exercise testing, I only found one reference to it in a very quick search on the CDC website, in the context of evaluating deconditioning in CFS patients.[4] - Tekaphor (TALK) 03:51, 3 December 2011 (UTC)

Perhaps Scray's interpretation was correct, but I explained why I had a different one, especially when the paragraph was titled "Tests for Differential Diagnosis and Management" and used words such as "associated disease(s)" and then listed tests "to address specific questions" which are known to be used to diagnose non-exclusionary comorbid conditions in CFS. - Tekaphor (TALK) 04:04, 3 December 2011 (UTC)

I think we have to err on the side of Scray's interpretation, however also think that there is an issue here that does need to be addressed within the article. We are dealing with a medical condition for which the science isn't settled and for which ongoing researh might be expected to produce subtantial differences of interpretation by different researchers. The challenge for a Wikipedia article is not to provide a definitive presentation of which rsearchers are 'right' but to represent the range of researcher view as presented in apropriate sources. Perhaps the way forward is to have a new section listing putative bio markers from current research, this way the sources can be quoted without being presented as being definitively attributable to any one diagnostic preference, the test for inclusion in this new section would be publicatin in an appropriately peer reviewed journal.--In Vitro Infidelium (talk) 10:11, 8 December 2011 (UTC)

The wording is definitely vague. Given the example of testing for Multiple Sclerosis, I have to agree with the idea that they meant to give examples of exclusionary conditions in that sentence, though I don't think that was necessarily the case in the next one since, as others have mentioned, POTS and sleep issues are frequently associated with any number of conditions including CFS. But getting back to the broader biomarkers issue, I think IVI has the right idea. Given the number of suggested biomarkers, even if they have limited or no follow-up, a section on that would seem to be appropriate. We just need to be sure that there's appropriate wording to indicate that these are not definitive. – RobinHood70 ^talk 20:19, 8 December 2011 (UTC)

I agree with Tekaphor.

The way to interpret any CDC pronouncement is by asking the question "how is CDC trying to ensure that ME patients do not receive appropriate medical care?" In this instance, they are being pressured by CFSAC and others to revise their website to make it more accurate. They attempt to resist with weasel language such as that neurological imaging tests should be used- but only to exclude MS, not to confirm ME; sleep studies, exercise testing and tilt table testing can be used, but only to "answer specific questions", thus implying that they should not be used for an initial diagnosis of ME. This is obviously disingenuous. Exercise testing is a good diagnostic tool to make a diagnosis of ME- I don't see any way it could be used other than that. So, it's a bunch of intentionally confusing nonsense as usual, so I'm not sure it can be used to back up any claims to biomarkers in ME.

In any event, I think that there needs to be some clarifying language such as that which I or Tekaphor suggested. I will look to try to see if there are any review articles to back this up. Can anyone recommend any offhand? I am handicapped in that I don't have free access to articles (either on-line or a med library).

I essentially agree with IVI that a section on biomarkers would be appropriate. Thanks for your input, everyone. JustinReilly (talk) 02:52, 16 December 2011 (UTC)

Edits - December 2011

Latest comment: 12 years ago8 comments5 people in discussion

I just added something in for more general public clarity (a common shortening used by people), I put (CFIDS) in brackets next to where it already said Chronic fatigue Immunity Dysfunction Syndrome and it was right away removed by Orangemarlin for no good reason at all hence Im going to add it back in. He said it was irrelevent and it wasnt even put in the history section as he stated in the reason why the edit was made, I'd put in the name area). The fact the short term is used in many different countries and even is used for one of the big associations in America. eg http://www.cfids.org/ so hence I think it should be listed in name area not only by the much longer name but with the common shortening for the name beside it too. There is no reason for both not to be listed there esp when societies and others commonly do use the term, he had no reason to edit it. --Taniaaust1 (talk) 05:42, 7 December 2011 (UTC)

Quit your whining. CFIDS is already in brackets earlier in the article. As for the history crap, put it in a history section if you want. OrangeMarlin ^{Talk• Contributions} 05:47, 7 December 2011 (UTC)

It was nothing to do with history at all, I didnt even have it in the history area but in the naming section.

--Taniaaust1 (talk) 05:56, 7 December 2011 (UTC)

Doc James and JustinReilly There was a consensus which was come to in producing the Canadian Clinical consensus guidelines which was produced by a large group of experts and in that large document it does list various abnormalities commonly found in CFS. So a section of abnormalities that "may" be found on tests could be done using that. Some of these abnormalities have been found in large numbers of CFS people. I think Ive read the Rombergs test is positive in about 90% (dont quote that anywhere in case my memory is not correct).--Taniaaust1 (talk) 06:11, 7 December 2011 (UTC)

Where was the ref for that? Doc James (talk · contribs · email) 06:13, 7 December 2011 (UTC)

(edit conflict × multiple) As far as the abbreviations go, we're being inconsistent no matter how you look at it. According to Wikipedia:MOS#Abbreviations, the abbreviation should only be given at first occurrence, so I'll remove the ones I spotted. – RobinHood70 ^talk 06:19, 7 December 2011 (UTC)

The claim 90% of CFS patients have a positive Romberg test seems to lead back to Dr Paul Cheney's work on a select group of patients (see [5] and [6] and [7] but note that these are not what Wikipedia would consider "reliable sources"). The original Canadian 2003 definition mentions a positive Romberg test as suggestive towards a ME/CFS diagnosis, but does not give prevalence figures. In the study review "Myalgic encephalomyelitis - a persistent enteroviral infection" (PMID 2170962) by Dowsett et al in 1990, only 6% had a positive Romberg test. - Tekaphor (TALK) 01:42, 8 December 2011 (UTC)

Thanks Tekaphor. Ive been thinking further about what I said and I think was a figure of 70% I seen somewhere and it wasnt Cheney. If I can remember where I seen it, from what source (an org or another researcher) maybe its something which could be used. Cheney tends to more so see the ME patient group of people and not so much CFS ones, so I'd think he would find it higher in the patient group he treats, then if a study was done on more the CFS type of patient. I'll keep trying to remember where I seen it (has Ramsey said anything about that test? maybe it was from his writings).

--Taniaaust1 (talk) 02:08, 8 December 2011 (UTC)

ME case definition

Latest comment: 12 years ago23 comments7 people in discussion

The following was added to the article:

“

The CDC and many ME experts view myalgic encephalomyelitis (ME) as a differential diagnoses to CFS. The CDC states "The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS."^[1]

”

The reference is true, in the sense that there is a page on the CDC website that distinguishes between CFS and ME. The problem is that the addition directly contradicts the remainder of the article, in the sense that ME is considered a form of CFS. I am also puzzled by the claim (on the CDC page) that ME has neurological and muscle symptoms, whereas CFS has not. Both the CDC and Canadian classifications of CFS mention myalgias and various neurological features. What is it to be? I don't think we can discuss this in the article without substantial rephrasing and clear consensus. JFW | T@lk 23:34, 7 December 2011 (UTC)

Hi, It isnt just the CDC many others are saying they are different things too and always have, hence all the contraversy as many havent been aware of this. From specialists to many of the orgs eg the CFIDS association of America also see ME and CFS as being two different things.

I felt it was biased to leave it out when people have not allowed a page to be on wikipedia for ME of this kind (different to the English Wessely defined ME version which in truth is CFS), so hence till that time comes they need to be on same page but people need to be aware that even some big orgs say they are completely different illnesses, differential diagnosis so this should be in the differential diagnoses part as otherwise CDC is being completely contradicted. Its biased to not be pointing that out where the CDC stands on it.

--Taniaaust1 (talk) 00:57, 8 December 2011 (UTC)

It is interesting the CDC state that ME and CFS are not the same condition. I did a brief search on their website for the contrary, and all I found was a single vague sentence that CFS is "sometimes" called ME. I agree with Taniaaust1 that the above statement from the CDC, which is part of their training material, should go somewhere in the article for some purpose to avoid bias. If Wikipedia does not allow a separate article for ME (because the majority of published researchers and medical authorities supposedly view them as synonymous) then it must deal with the baggage and implications of the ME vs CFS issue without sweeping it all under the rug. Also, this year an international group of authors/researchers have published a new definition for ME (PMID 21777306) which I discussed here [8]. The authors state: "Individuals meeting the International Consensus Criteria 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." However they do not make it clear if ME is not generally the same as the CDC's commonly used 1994 criteria for CFS, despite criticizing it for lack of specificity. Only the CDC seem to be using their heavily criticized 2005 criteria, other researchers are not. - Tekaphor (TALK) 01:40, 8 December 2011 (UTC)

(edit conflict) While I know there are some proponents for a split between the two, I think we'd need to either find clear medical literature that distinguishes the two, or phrase it in such a way as to reflect the fact that some organizations and doctors are advocating a split, but it isn't universal. In the new International Consensus Criteria, for example, it states "Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Evidence (NICE) criteria for chronic fatigue syndrome." (See Conclusions section here.)

So far as presenting that as the CDC's position, though, that might be a bit of a stretch. They do indeed have a page that says that, but I don't believe that's part of their official CFS literature, and I was unable to find ME on their site anywhere in a quick search. – RobinHood70 ^talk 01:47, 8 December 2011 (UTC)

I know it dont help here, but I did email the CDC some time ago and was trying to get the actual ME definition from them. They themselves after leading me on a wild goose chase to try to find it (they gave me a heap of places to contact, who said they didnt even know about CFS let alone knowing about ME). When I then emailed CDC back, they then said they could get someone to phone me to explain the differences but confirmed again to me they were different illnesses. (Ive got Aspergers and hate phones, so didnt give them my phone number when they asked for it to ring me back).

I know others too who have spoken to them to about it and they also did get confirmed by them they were different. So it is their position but it just isnt really mentioned much just in their doctor education training stuff which I think is more for doctors rather then general public, who of cause shouldnt be trying to self diagnose anyway esp when it comes to complex diseases. I can only assume they do not want those who dont have ME and only have CFS thinking they have more serious ME eg http://www.hfme.org/Other/DefinitionBooklet_Sept_2011.pdf.

--Taniaaust1 (talk) 03:33, 8 December 2011 (UTC)

I just added the 2011 ME-ICC to the clinical descriptions of CFS subarticle. It is a rather strong statement from 26 international authors on the issue of ME vs CFS etc and was published in a reliable source, so it definitely belongs somewhere in the CFS articles even if not a widely used definition. [9] - Tekaphor (TALK) 02:33, 9 December 2011 (UTC)

The new criteria do almost everyone a disservice. There is a significant overlap between current systems (and that includes Reeves/NICE) and the new Carruthers et al. Despite its insistence that ME is not about fatigue, the first criterion is... fatigueability. As before, the vast majority of criteria are subjective, making the whole system entirely dependent on interpretation. Commonly used objective standards, such as the 6-minute walking test used in pulmonary hypertension and forms of cardiac failure, have been ignored. Despite claiming a neuroimmunological etiology, no objective measures of immune dysfunction (e.g. T-cell subsets, immunoglobin levels) or neurological defects (EEG or MRI abnormalities) are suggested. This classification is going to reinforce the commonly held view that ME is "all in the mind", that its scientific basis is nothing but cargo cult science, and actually strengthens the agenda of the much-maligned "psychiatric school". JFW | T@lk 21:32, 10 December 2011 (UTC)

(←) That's an interesting viewpoint, JFW, and while I hadn't thought of it that way before now, I can't say I disagree. I think they might still be a step better (in the sense of being more selective) than some of the other criteria, though, such as the rather ephemeral London criteria or the 2005 CDC criteria. As far as the fatigue issue goes, I think they really needed to elaborate on that more. My take on it was that they wanted to get away from the general idea of fatigue and/or motiviational difficulties, such as might be experienced in response to being underslept or depressed, and focus more on the specific type of fatigue experienced by CFS patients. But an entirely subjective symptom-based approach doesn't really advance us much further than any of the other criteria, and even if they're not definitive, there are certainly concrete tests that could have been included such as the repeat VO2 max test Tekaphor mentioned somewhere that would have been better than focussing on symptoms that are either entirely patient-reported or very generic, such as "flu-like symptoms". Ultimately, though, in terms of the article, the real test is how much they're cited and how much they're used, and right now, there's little of either—though that's hardly a surprise given how new they are. At this point, I'd agree with SW and say they should maybe get a one-liner in the article, since I know the patient community at large has some interest in them as potential criteria, which I think would make them notable. – RobinHood70 ^talk 22:39, 10 December 2011 (UTC)

I agree (off topic) with JFW's analysis and RH's (on topic) assessment, with one minor proviso re: notability. Cite count/relevance is clearly the primary relevant measure, but as RH points out that is not balanced when dealing with new publication, in that case I would suggest 'new' is itself 'notable' when dealing with an aspect as broad as 'clinical description'. Of course if the were suddenly a plethora of new descriptions of the same illness, then 'new' may become a less notable point, but for the pesent it does seem reasonable to treat 'new' as self recommending as notable where clinical description is concerned. It seems likley that future advances (if they arise) in aetiology/nosology will be focussed on sub typing M.E/CFS rather than upon entire new descriptions, it's perhaps worth bearing that in mind when consideraing the article structure. Fitting subtype descriptions as they arise is likely to be rather messy, which is in part why I envisaged a wholly separate section for including 'developments' which are not themselves part of any settled' consensus. --In Vitro Infidelium (talk) 14:24, 11 December 2011 (UTC)

Alleged real-world usefulness doesn't determine if it should go into the article. What makes the ME-ICC [10] notable is that it was written by 26 international authors with extensive experience in the field and is a position statement from: "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." It is inappropriate to treat it like just another insignificant primary source authored by a small handful of authors, and the number of citations in Google Scholar sounds like an unreliable indicator of how accepted a paper is when we don't know the context of such citations.

The ME-ICC does not reject the existence of baseline fatigue, just the primary emphasis on it. The authors wanted to get away from the current inadequate concepts of fatigue. Post-exertional symptom exacerbation is more than "fatigability". Unfortunately the ME-ICC doesn't adequately cover the duration and frequency of symptoms, the less affected patients, and impairments due to baseline symptoms. Yes, there is a disappointing lack of objective diagnostic tools in the ME-ICC, but all CFS criteria suffer the same problem of being symptom based criteria, and the authors are still working on physician guidelines. However unlike all CFS definitions, the original Canadian definition and the ME-ICC were part based on a large study into symptom prevalence [11]. The symptom cluster used in the ME-ICC could be a step in the right direction for future research.

Compare this to the opposite direction of the CDC, after they effectively "poisoned the well" and found guilty of misappropriation scandals, Reeves took over and further ran the "cfs" division into the ground with dubious criteria and flawed psychobabble. The so-called "empirical" CDC 2005 criteria were not derived empirically, it quantifies the Fukuda (CDC 1994) symptoms and managed to bloat up prevalence estimates 500-1000% compared to Fukuda and conflate it with primary MDD since one could be diagnosed with CFS based on emotional but not physical limitations (explaining the sudden retrospective association with childhood abuse, contrary to research using Fukuda). So it is no surprise that the ME-ICC authors wanted to separate their ME definition from all that baggage and incompetence. Reeves has left but said division seem incapable of "running a chook raffle", so I cringe at rumours that they are considering another definition.

Case definition is crucial and the whole situation is a mess. It is stupid that there are over a dozen competing criteria, with large prevalence discrepancies eg estimated 25-fold difference between Reeves vs Canadian. I have doubts about the ME-ICC impact, but the limited evidence comparing various definitions of ME and CFS suggest there are significant differences in the characteristics of selected patient groups, although this doesn't necessarily mean they are fundamentally distinct. Stricter criteria tend to select patients with more/worse symptoms and impairments, and such differences will probably influence the results of research. - Tekaphor (TALK) 01:43, 12 December 2011 (UTC)

sorry guys. I put the following into the wrong section before so moving it here (about to delete from other area

"What makes the ME-ICC [10] notable is that it was written by 26 international authors with extensive experience in the field and is a position statement from: "Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, "

I'd like to point out that now that the ME-ICC has been published which states ME is not CFS, there is bound to be studies in near future which will be being published under being ME studies and not CFS studies. Some of the authors of that publication are not only specialists in the field but also are researchers who do do papers and will certainly when their next papers come out, do them in the name of ME with their carefully selected ME patient groups who they will say arent CFS. So what happens then with their findings and recommendations, are people going to place new science findings which authors of it say arent CFS on this CFS page?

Whether people like it or not, the subgroups are going to split. Its a case of will this wiki page be lagging 10 steps behind what is going on really out there and a complete bullsup? or will it be keeping up with the changes happening? Some big changes need to be done for that to be able to happen.

The ME-ICC due to the amount of authors, not just average doctors but we are talking about many world experts/leaders in the field. It wouldnt be right to just do a line or two on this newest publication which has consensus of so many experts around the world. (I personally dont like it, wish they'd stuck with the CC CFS defination and just added some actual scientific findings to that but Im not about to ignore something which obviously was done as consensus of so many experts).--Taniaaust1 (talk) 15:33, 12 December 2011 (UTC)

I can see a strong case for leaving the "new" criteria out. At the moment we have no evidence that they are being used in practice. Furthermore, contrary to claims above, they do not actually provide tools for actively distinguishing between CFS and ME. Finally, the title of this article is "chronic fatigue syndrome", and providing criteria for a disease that is not under discussion is off-topic. Again, it is disturbing that a group of 26 internationally recognised authors with an interest in ME (such as Kenny de Meirleir and including Judy Mikovits, whose credibility has suffered terribly under l'affaire XMRV) is prepared to formulate a set of criteria that is so shockingly vague and of no help at all for clinicians or their patients. JFW | T@lk 17:43, 12 December 2011 (UTC)

Whether the ME-ICC is 'good or 'bad' science isn't the issue, the question is how does an article such as this treat research development and novel proposals, given that there is no definitively settled science about the condition. The very fact that 26 researchers with a range of competencies have put their names to the ME-ICC proposal, is significant relative to the lack of settled science in the appraisal of the condition. Without making reference to developments in research and without making reference to novel proposals for case description, the article displays an impression of settled science which in reality, does not exist. I do agree that without demonstrable utility a novel proposal could not be included in the primary narrative of the article, but I think we should be 'bold' and find a way to include some opportunity for the reader to apprehend the existence of 'emerging' approaches to the condition given that there is as yet no settled science that can be confidently applied to the whole of the variously acknowledged patient population.--In Vitro Infidelium (talk) 18:20, 12 December 2011 (UTC)

(Note: this is a response to Taniaaust1 which I wrote before seeing the intervening edits due to the move that occurred later on.) The thing with Wikipedia is that it's an encyclopedia, not a crystal ball. It must, necessarily, lag behind a little behind medical research due to the fact that new theories need to be both notable and verifiable. You can read more on this at WP:MEDRS. This can be a delicate balancing act. Take XMRV, for example: back in 2009, it was notable and verifiable that it was a prominent new theory as to the cause of CFS, so we reported it as such. What we didn't do, however, was state that it was the cause of CFS, which was utterly unverified (and since disproven, pretty much, though there's always the slim chance that the Lipkin study will figure out something everyone else missed). In that same vein, it is notable and verifiable that there is a new criteria being proposed by a large body of experts. Until it has come into significant use, and that use has clearly demonstrated a difference between its own patient selection and the Reeves/NICE patient selection, it would be inappropriate for Wikipedia to take any additional action on it besides reporting that it exists. – RobinHood70 ^talk 20:35, 12 December 2011 (UTC)

The ME-ICC discusses CFS, was part borne out of a "ME/CFS" criteria and a large study into CFS symptom prevalence, and was written by people who have authored on CFS and believe NICE and CDC are heading in the wrong direction, so JFW's dismissal of the ME-ICC because "the title of this [Wikipedia] article is 'chronic fatigue syndrome', and providing criteria for a disease that is not under discussion is off-topic" is rather strange considering how a few years ago JFW was one of the main proponents ~~(even using Administrator privileges?)~~ for assuming ME and CFS are synonymous and keeping ME merged in the CFS article. It is a bizarre contradiction to force ME and CFS together and sweep ME under the CFS rug then ignore anything written about ME that contradicts CFS for allegedly being "off-topic"!

One either meets ME-ICC or not, those who do "should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome". No one is saying the ME-ICC is awesome and couldn't have been better, but is it really more vague than any CFS criteria? No pure CFS criteria has proven itself to be clearly superior, in some research the most popular CDC 1994 criteria has even failed to prove particularly useful for distinguishing itself from idiopathic chronic fatigue which it is supposed to do. IVI is correct, whether the ME-ICC is 'good or 'bad' science isn't the issue. IVI asks "how does an article such as this treat research development and novel proposals". The answer to that question is "with contempt and hostility, at least if it goes against the status quo ~~as envisioned by certain editors~~". - Tekaphor (TALK) 03:56, 13 December 2011 (UTC)

Yes, what I have said may not be a sound argument against inclusion, but I would not want to write 3-4 long paragraphs on this new classification as there is no evidence that anyone is using the criteria or considers them useful. We've had "criteria" for CFS and ME for >20 years, and I consider these a step backwards. I am skeptical that the new criteria add anything, but I think "contempt and hostility" is not a reasonable assessment of my opinion. Nobody is going to take this whole area of research seriously unless there is quantifiable data, and the tools exist.

Tekaphor, please also provide evidence that I used my admin tools when trying to concentrate CFS and ME content in this article. If you cannot, I would like you to actively retract your accusation. JFW | T@lk 09:14, 13 December 2011 (UTC)

(←) I never said you "abused" admin tools as you stated on my talkpage, I simply implied that you used them and I wasn't even sure about it, being a long time ago hence the question mark. Frankly I can't be bothered sifting back for evidence of such use, so yes I will retract the accusation with strikeout. Also, the "contempt and hostility" statement was meant more generally rather than referring to you, I will strike part of that out as well but it still remains to be seen how IVI's equivalent of a "Research directions" section (as per WP:MEDMOS guideline) will be handled when considering how similar topics and sources are IMHO usually treated with such resistance here. I still stand by the comment that you calling the ME-ICC "off-topic" is bizarre, unless you now think that ME is distinct from CFS? - Tekaphor (TALK) 02:47, 14 December 2011 (UTC)

At best I would give it a single sentence - "In 2011 criteria were proposed to distinguish between CFS and ME." Mention the key distinctions in vague ways (the article itself should make these distinctions - if not it kinda discredits itself), and as soon as negative reactions pop up (doubtless very soon) we include the criticisms. The fact that Judy M. is a signatory is a bad, bad, bad thing in my opinion, she's essentially discredited her ability to do objective science. If objections like JFD's ever crop up in the peer reviewed or otherwise notable literature that would be a very, very important thing to include. The distinction (or really, lack of) between ME and CFS was one of my first involvements in the page and the conclusion, which resulted in a page ban for Guido den Broeder, was that there wasn't one. The fighting over nomenclature is noted quite prominently in the page, I wouldn't add to it by appearing to endorse one over the other. WLU (t) (c) Wikipedia's rules:^simple/_complex 00:36, 15 December 2011 (UTC)

Here are the 5 or 6 sentences I wrote summarising the main points of the ME-ICC on the CFS clinical descriptions subarticle before it was entirely reverted for allegedly being "fringe" and undue weight and having no citations on Google Scholar.[12] Here is my response on the relevant talkpage about the reversion.[13] WLU asks if there are any indications beyond this article/authors that a split or distinction between CFS and ME has been accepted. Acceptance may be too high of a threshold, but it is an obvious point of contention. At the very least, ME and ME/CFS criteria tend to select patients with more symptoms and impairments than pure CFS definitions.

WLU said elsewhere we are urged to respect and cite the CDC. On the CDC website it states in their training material that ME has been erroneously conflated with CFS [14] and no where else on the website do they state as plainly that ME=CFS. According to Wikipedia's rules it doesn't warrant a page split by itself, but to omit it completely as has been done over the years here at Wikipedia doesn't make sense. JFW takes issue with the CDC source for possibly implying that CFS has no neurologic and muscular signs, but looking again at the wording, perhaps they meant ME is always accompanied with such signs whereas CFS is not, or what they view as such signs is more specific and objective than vaguely worded CFS symptoms? Such contradictions are unsurprising from an authority known for scandal and incompetence, bungling of the Lake Tahoe probable-ME cluster which spawned "CFS", making fun of patients behind closed doors, etc.

In a 2008 presentation which probably isn't MEDRS, Peter White, well-known CFS researcher and lead author of the controversial PACE trial, stated that ME was different to CFS but the terms are now used interchangeably.[15] White and Michael Sharpe make somewhat related statements in a recent BBC News article.[16] - Tekaphor (TALK) 03:58, 16 December 2011 (UTC)

On the training materials site, published in 2006 originally, set to expire in August of 2012. And it certainly looks like it's not a slam-dunk or unequivocally accepted that the two are different [17]. Note on page 10 it says "A new definition of ME has been recently published to emphasize recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology. ;While there is no consensus on case definition', there is consensus that this is a serious syndrome and complex syndrome, and it is likely that there are multiple subgroups. Changes in immune, CNS and autonomic nervous system can be identified, but no tests have sufficient sensitivity and specificity to serve as a diagnostic test for CFS." The CDC appears to be playing politics - they state that there is no test and no consensus, but it is serious. The whole ME/CFS issue was debated in 2007 with a consensus reached to keep the two as a single page while noting the disagreements over naming here. I don't want to ressurect the debate until there is ample evidence that ME is being consistently and meaningfully distinguished from CFS. This is still a proposed definition; if it's never picked up then we're engaging in recentism to have a lengthy discussion of it. Separating the two would be a substantial change and one that would need to be well sourced. WLU (t) (c) Wikipedia's rules:^simple/_complex 14:39, 16 December 2011 (UTC)

The big debate was in 2007, so the CDC training material saying older ME and newer CFS have been erroneously conflated, has been censored for 4 years. No one here is now claiming there is universal consensus that ME and CFS are fundamentally distinct entities, or using this argument to demand a ME fork. What is being argued is taking the issue more seriously, rather than censoring the CDC and sweeping the issue under the CFS rug.

The new CDC source you quoted [18] does not seem to clearly support the notion of universal consensus that ME=CFS. In context with the first two sentences you didn't quote from the same paragraph on page 10 ("Currently there are several case definitions in use, some separating CFS from myalgic encephalomyelitis (ME), and others merging the two conditions together. The most widely used are the 1994 case definition, the Canadian and the Oxford definitions.") this would suggest there isn't an overwhelming consensus on the issues of case definition and ME vs CFS, only that whatever is being studied under the umbrella is serious and complex with probable multiple subgroups.

Combine the above with the older training material, according to the CDC there isn't overwhelming consensus that ME=CFS while only "fringe" researchers believe otherwise, there is more grey area than that. We have previously used sources other than the CDC to establish that most authorities and researchers generally view ME and CFS as the same condition in practice, however, obviously it isn't that simple because there is no consensus on case definition and now a group of 26 international authors have put their name on a new case definition which attempts to separate itself from Reeves and NICE defined CFS. - Tekaphor (TALK) 03:13, 17 December 2011 (UTC)

The majority view expressed in the literature is that ME=CFS. (I take this view, personally, though I certainly can see the merits of the other side), so I think there should be some discussion of that controversy in the controversy, clinical description and alternative names articles and also in the main article under the classification section, naming subsection. I think it might be hard to find "Reliable Sources" discussing which is the majority and which is the minority view and what those views are. What do you do when that is the case, do we just decide which is which, or is that Original Research? If you want to avoid undue weight, I guess we would have to make that determination ourselves if their are no Reliable Sources. JustinReilly (talk) 06:39, 17 December 2011 (UTC)

Until there is a reaction to the proposed distinction in the peer reviewed press, there is very little that should be said about the article and proposed distinction, per WP:RECENTISM and WP:UNDUE. There's not a universal consensus that ME=CFS, but nor is there a universal consensus that ME=/=CFS and the preponderance of sources suggest the two are used interchangeably. There's no case definition universally used, but then again CFS is a diagnosis of exclusion and the etiology is not understood. 26 authors have proposed a new definition, but there are far more than 26 authors specializing in CFS and there is no indication they have accepted the new definition. Time will tell if it drops like a lead balloon or is adopted, and in the mean time I would suggest using it judiciously and sparingly.

Justin, we need the sources to make the distinction. The best thing for us is to assemble sources that explicitly discuss the CFS vs ME debate and summarize them. The page should already do this (and does, in the section on naming). Normally consensus and due weight simply falls out by summarizing the sources, if you can find more sources making specific points pro or con, then quite naturally you accumulate a rough indication of weight. I'm not opposed to including the article as a brief (single sentence or less) point, I just don't think we should rewrite the page or even a section based on it. WLU (t) (c) Wikipedia's rules:^simple/_complex 02:36, 20 December 2011 (UTC)

Proposal for New Section

Latest comment: 12 years ago19 comments5 people in discussion

(Note: Initial proposal section removed in favour of new workpage.)

The following is a proposal to address issues raised in the preceding three sections of this talk page. CFS is problematic because no part of its aetiology is settled, therefore unlike most other WP articles on specific diseases, there needs to be a reflection of how ongoing research impacts upon the conventions which are currently applied by health provider and governance authorities. The proposal therefore is to include a new section “Nosological Developments” in the main CFS page,located between the current Epidemiology and History sections. The objective is not to provide a list of all ongoing research, nor to provide space for competing interpretations of the illness but to provide reference for research which provides likely impact upon the conventional views of CFS epidemiology, clinical description and biomarkers. What follows is primarily concerned with structure and the studies referenced are given as examples only, in the case of biomarkers it is notable that many WP articles already exist and cross referencing to those articles is likely to be of value to the reader. The proposal in respect of biomarkers is to list alphabetically and reference by relevant study, rather than list by study. --In Vitro Infidelium (talk) 11:59, 9 December 2011 (UTC)

Good idea, maybe this could be a separate article. Do we also need a ME vs CFS section? - Tekaphor (TALK) 01:45, 12 December 2011 (UTC)

If there is to be a separate article then I would suggest that be somewhat more expansive than what I've proposed here -probably under the title "CFS Research Developments". Date setting is an issue, for the Nosology section here I suspect a a five year limit(2006 and after) should be sufficient to produce meaningful content. For a full article, taking 1994 (Fukada) as the 'settled point' would be more appropriate. To ensure balance, any whole article would have cover all research ares in including psychiatric; the alternative would be to have separate biopathology and psychopathology articles, which in my view would be problemtic. I personally do not have an appetite for a new article(s) at this stage, although I will do some work on a new section, if that is agreed to. Regarding separate M.E - CFS sections, I can't see how that would be warrantd, the default is that of the article title; to separate for example, a biomarker for M.E from being a biomarker for CFS would require a source that authoritatively seperates the clinical definition used by one research group from that used by another. The reference titles should be descriptive so if the research has been specificaly based around a clinical description of M.E, that should appear in the text as I've proposed it be structured. As the science isn't 'settled' there can't be narrative relative to the entries as I've proposed them - simply a matter of record and reference that such research has been published. We sould be clear I'm not suggesting the Nosological Development section will be purely sourced from biopathology based results, some of the more recent 'stress' focussed bichemistry work may have a place as well - relevance is going to down to researcher claim for an epidemilogical, clinical description or biochemical diagnostic qualification. We can't pick and choose which research to include or not other than on the basis of appropriate source (peer reviewed) and practicable date cut off.--In Vitro Infidelium (talk) 10:52, 12 December 2011 (UTC)

No one else has commented but you have my vote for your proposal. Of course, Wikipedia's rules would insist we include the psychological and psychiatric research, but study methodology should be made clear. By a "ME vs CFS" section I did not mean separate for each ME and CFS, but a single dedicated section about possible or alleged differences, including the limited research done on comparing various definitions. - Tekaphor (TALK) 02:52, 14 December 2011 (UTC)

Sorry, I had meant to comment but forgot. I think the proposed new section is a good way of keeping the article up to date. It would clearly cover recent research on epidemiology, description, and biomarkers without presenting any of it as definitive. I think this is comparable to how other articles on such things work. The only thing I would suggest is that we follow Wikipedia:MEDMOS#Diseases or disorders or syndromes which suggests that "Research directions" be put near the bottom. – RobinHood70 ^talk 05:28, 13 December 2011 (UTC)

Circumstances permitting, I would be prepared to contribute to the subsection on ME vs CFS or the research comparing different definitions. - Tekaphor (TALK) 02:52, 14 December 2011 (UTC)

(out) I've worked through a three year limited search on google scholar - volume may be too great for the article page and there may also be style issues - but see http://en.wikipedia.org/wiki/User:In_Vitro_Infidelium/sandbox probably easiest to keep comments here. (is it possible to create a work page as a sub page of this talk page ?) --In Vitro Infidelium (talk) 18:38, 14 December 2011 (UTC)

Subpages used to work something out before adding it to the article are in fact a recommended procedure for this sort of thing. See Wikipedia:Workpages. It's really just a matter of creating Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 16/NosologyWorkpage (or whatever we want to call it), and going from there. Saves one of us having to have it in our sandbox forever if we decide to keep the workpage later on for archival reference. – RobinHood70 ^talk 19:08, 14 December 2011 (UTC)

This seems like it would run into WP:CRYSTAL problems, the sources below appear to be primary and in this sort of thing, particularly in a contentious area, secondary sources seem like a very, very good idea to demonstrate acceptance, replication, etc. The most I would use those sources for would be to indicate tests have been proposed ("A variety of diagnostic tests have been proposed^[1][2][3][4]"). Possible directions are proposed very frequently, but not even close to all of them pan out. Are there any indications beyond this article that a split or distinction between CFS and ME has been accepted beyond the scholars in this group? WLU (t) (c) Wikipedia's rules:^simple/_complex 20:57, 14 December 2011 (UTC)

While it's possible that it'll run into crystal ball gazing if we're not careful, I think IVI's suggestion follows your idea that we're only reporting on the direction of current research (which seems like it's accepted given that MEDMOS specifically includes where to put that heading), we're not trying to say "these are expected to be the accepted diagnostic criteria/biomarkers/whatever for CFS in the future" or anything like that. You're right that primary sources are potentially problematic in an area like this, and I would suggest that in order to limit FRINGE issues resulting from that, we do what we would do anywhere else and wait for these sorts of things to at least be mentioned on medical news sites or maybe if they gain widespread awareness in the CFS community (and if it falls into the latter category, make sure we report it as such, if at all, not as accepted fact).

Actually, adding to my previous statement, searching WP:MEDMOS for the word "research", as well as reading its Trivia section gives us fairly good guidelines on what's considered acceptable. – RobinHood70 ^talk 21:41, 14 December 2011 (UTC)

I would rather have secondary medical sources report the issues rather than the news, which is notorious for getting medical research wrong. Since these are primary sources attesting only to the fact that these test are proposed, that's about all I would find appropriate in the page - no individual markers, no discussion, not even a name or list of suggested tests. The thing about reporting the direction of current research is first the reporting part (we're not the news) and second the fact that it is a wide open invitation to cruft - misc. lists, minor topics, dead-end research that is never replicated and the like. Most of my comments are regarding the biomarkers section below, but the "International Consensus Criteria for Myalgic Encephalomyelitis" (PMID 21777306) I have pretty much the same reservations - one sentence at most saying it has been proposed. Once other references start appearing to discuss it, then a new discussion about how or whether to distinguish between ME and CFS would be necessary. I don't think the points below merit whole sections yet, at least not until there is more evidence they are accepted and/or discussed by at least a couple articles (ideally secondary sources that summarize and evaluate). WLU (t) (c) Wikipedia's rules:^simple/_complex 00:04, 15 December 2011 (UTC)

An endless and unrewarding circularity between WP:CRYSTAL and – “Not a Paper” could also be envisaged. I was surprised that the XMRV issue was ever included in the CFS article but there was clear consensus that it did belong. However I do think it is important to recognise those particular issues that are raised by CFS, which mean that it's a subject that doesn’t fit well with the generality of WP medical articles. Of course we can’t just abandon WP good practice because the subject is challenging, but there is some need to think outside the usual way of doing things. CFS is relevant to a wide range of medical specialisms and frequently falls between ‘multiple specialism stools’, an effect of which is that research is only given limited published review because the number of studies falling within the purview of a given speciality are limited in number, despite the overall research effort being substantial. A notable exception to this is Psychiatry, a specialism which has produced both a body of research and numbers of published review, but abundance of source should not of itself define the balance of an article. The more significant secondary sources on which the CFS article must rely are not in themselves independent, bodies such as the CDC and NICE have (for justifiable reasons) limitations on the type of research which they find relevant for their own purposes, worthy of comment. NICE for example is constrained to comment only upon upon cost effective treatments, a constraint which provides for a strong conservativism in its apprehension of research –that is entirely sound from the UK Government perspective but doesn’t offer a consistent secondary source on which WP can rely. Given this limitation on secondary sources, it doesn’t seem unreasonable to include some presentation of the ‘fact’ of 'ongoing research covering a broad range of specialisms', as a contribution to providing a more balanced article. The proposals to limit inclusion of those primary sources ‘noted’, to those having nosological relevance, to have a distinct section for the purpose, to include only limited narrative and to locate the section toward the end of the article separate from the primary narrative of the article, all seem to offer substantial safe guards for continued good practice. --In Vitro Infidelium (talk) 15:01, 15 December 2011 (UTC)

(out) new workpage created [19] --In Vitro Infidelium (talk) 16:01, 15 December 2011 (UTC)

Do you mean between WP:CRYSTAL and WP:PAPER? The two are different. WP:PAPER says we don't need to limit the number of individual articles because of a limit in size (however, individual articles do have limits, per WP:SIZE and WP:SS). WP:CRYSTAL says we should not attempt to predict or anticipate the future. The two do not present a circularity at all.

Irrespective the challenges of researching CFS, we must still cite the best sources available. As for the abundance of sources on a particular facet, we do actually use pure number to define the balance of an article - this, combined with quality of sources, is the essence of neutrality. A neutral article demonstrates neutrality by letting the topics discussed and amount of prose given be determined by how many sources there are discussing each idea. It's not an easy thing to quantify, but the pure number of sources is a consideration on how much text each point should get. Agencies such as NICE and the CDC are among the types of agencies we are urged to respect and cite, per Wikipedia:MEDRS#Medical and scientific organizations. They are considered very reliable sources and should be represented, and we can rely on them.

Per WP:MEDREV, the kinds of secondary sources we are supposed to rely on are review articles. This is for the whole of the page, not merely the lead or overview sections, and we should only cite primary studies in rare exception cases. We shouldn't use them to expand areas we think are interesting or promising. This is again, guidance for the whole page, not just top, bottom or middle. We should say very little, if anything, based on primary studies. If these are genuinely useful biomedical tests, they will be replicated, extended and eventually become part of the mainstream diagnosis and treatment of CFS. But we document this occurring, we do not anticipate it. WLU (t) (c) Wikipedia's rules:^simple/_complex 18:02, 15 December 2011 (UTC)

re WLU immediately above: "Agencies such as NICE and the CDC are among the types of agencies we are urged to respect and cite, per Wikipedia:MEDRS#Medical and scientific organizations. They are considered very reliable sources and should be represented, and we can rely on them." The guideline cited says that info published by these agencies for public consumption (not official reports) should be accorded less 'reliability' than the literature upon which they are based. Additionally, CDC and NICE are certainly not (at least in the colloquial sense) reliable sources re ME. I highly recommend reading the illuminating article recently posted by David Tuller (who covers ME for NY Times) on the Virology blog: CFS and the CDC, a long and tangled tale: http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/. As to whether they are 'reliable sources' (the Wiki term of art RS) is another issue (on which I will try to refrain from commenting until I learn more about the Wikipedia policies, guidelines, etc.) JustinReilly (talk) 04:56, 16 December 2011 (UTC)

The assessment given by WLU seems faultless, however it is a highly conservative rendition of Wikipedia principles which not only reduces the relevance of WP:Be Bold but introduces a deference to organisational and political authority (as opposed to expert authority) which in itself seems a novel departure. This latter point aside, WLU’s position would not be problematic were we to be concerned with diptheria or congestive heart disease where much of the science has been settled for decades. WUL’s position seems to be that ‘all diseases are equal in the eyes of Wikipedia’, and that as far as the CFS article is concerned ‘no change’ is all that is allowable under ‘Wikipedia rules’. I don’t see how consensus can be built on this ‘Niet’ position, which is disappointing to say the least; there are opportunities here to be creative in providing an informative article about a complex Syndrome which provides both medical and sociological challenges. It appears that creativity is to be lost at the cost of ‘lawyering’. --In Vitro Infidelium (talk) 12:09, 16 December 2011 (UTC)

Justin, they may be less reliable than the literature for primary statements, but they also represent the opinions of the agencies, and those opinions carry weight. We do, and should always, make a point of noting what these agencies have to say about health topics. Also, as secondary sources they may also synthesize the primary source material in a meaningful and useful way. This isn't to say they take precedence over actual journal articles - merely that they can, and should be used to verify text.

IVI, we are encouraged to be bold in our editing, but not to the point of breaking the other rules; the point is that we should not have to learn all the rules before editing, but we must still respect them. Wikipedia is not a place to promote a viewpoint, predict the future, publish original thought or present something as "wikipedia's opinion" (unless it is extremely uncontroversial). The very point you make, that CFS does not have a settled science, means we cannot present it is if it were settled. We certainly can discuss new viewpoints and findigs, but mostly if they are secondary sources (that is, review articles, textbooks and the like) and primary sources are used on an exception basis. Wikipedia is not meant to be creative, it is an encyclopedia, it is not a blog. Please review WP:NOT in general, it is extremely important for consensus building that we start from a common set of rules. I am not forbidding the use of primary sources - only urging extreme caution and almost no detail until a secondary source is present that discusses them. This is a core issue of neutrality, where we use sources in proportion to their importance, respectability and number, to demonstrate neutrality. In other words, something is "neutral" when it represents the overall perspective of the appropriate expert community, not the opinions of wikipedia's editors. In other words, wikipedia should not something because experts think it is important - not because we do. WLU (t) (c) Wikipedia's rules:^simple/_complex 13:51, 16 December 2011 (UTC)

WLU, you make some valid points. Don't mean to quibble, but i will note that you state that info from CDC and NICE "can" "take precedence over actual journal articles."

Here is the text from your link: "The reliability of these sources range from formal scientific reports, which can be the equal of the best reviews published in medical journals, through public guides and service announcements... are generally less authoritative than the underlying medical literature." Wikipedia:MEDRS#Medical and scientific organizations JustinReilly (talk) 22:16, 17 December 2011 (UTC)

Generally a primary source from even a well-respected journal would get less weight than a secondary source, even one issued solely by an organization. I've seen organization statements published in peer reviewed journals, marrying the best of both worlds. Others, such as the CDC suggested curriculum, seems to contradict at least a portion of the scientific literature (specifically the distinction between ME and CFS which most of the literature doesn't make). CFS patients like the term "ME" because it sounds more scientific and biological (this is noted in the page) but realistically most articles say "CFS/ME" and stick with CFS. WLU (t) (c) Wikipedia's rules:^simple/_complex 02:27, 20 December 2011 (UTC)

IACFS/ME Bulletin

Latest comment: 12 years ago17 comments6 people in discussion

In light of the ongoing edits and reverts of the IACFS/ME Bulletin reference, I thought I'd open a topic about it on the talk page. According to the IACFS/ME site, their bulletin is peer reviewed. That said, I know there are many sites that claim peer review that have little basis in fact for that claim. Personally, I have no basis to form an opinion here, but I thought others might want to discuss why it is or isn't appropriate to include the reference, particularly in light of the fact that at least one of the people involved is a new editor who may not understand why "peer reviewed" isn't always "peer reviewed".

On another note, though, regardless of whether it's validly peer reviewed or not, is a second reference actually necessary there? – RobinHood70 ^talk 23:34, 12 December 2011 (UTC)

I had not looked on the website, where it says that "The Bulletin of the IACFS/ME is a peer review [sic] online journal" At the same time, the site does not list an editorial board, and the editorial policies are unclear. Even if it publishes "peer review" articles, it is miles away from a reliable source on medical subjects. I agree with RobinHood70 that a second source is probably not necessary anyway. JFW | T@lk 23:57, 12 December 2011 (UTC)

It doesn't seem to be listed on pubmed as far as I can tell (do a search on pubmed for the title of the article and you'll see that no results come up). Checking for pubmed-indexing is the usual quick-and-dirty test we use on wikipedia to see if a journal is really peer-reviewed. --sciencewatcher (talk) 00:21, 13 December 2011 (UTC)

Pubmed is a reasonably proxy for a biomedical journal (not all its content, think about "news" and "personal view" items). However, I would not want to insist on citing a journal because it is on Pubmed (there are lots of them would not be suitable from a WP:MEDRS perspective). Sciencewatcher's point is just a further proof that this source is not WP:MEDRS. JFW | T@lk 09:07, 13 December 2011 (UTC)

Here is the editor and editorial board: http://www.iacfs.net/BULLETINFALL2011/tabid/499/Default.aspx JustinReilly (talk) 18:44, 13 December 2011 (UTC)

Considering the use of the source, the fact that it is followed by four other sources, I don't even think it's worth debating the issue. I wouldn't consider it reliable. WLU (t) (c) Wikipedia's rules:^simple/_complex 23:53, 13 December 2011 (UTC)

(←) The IACFS/ME states that "All manuscripts submitted for publication in the Bulletin will be submitted for peer review."[20] I concede that their Bulletin is not an "ideal" source according to the rules at Wikipedia, but I cannot see why it would be deemed "unreliable" according to WP:V and WP:RS. And "... published sources with a reputation for fact-checking and accuracy", because the IACFS/ME are a bunch of unknown liars and can't be trusted while journals like the Lancet and BMJ did such a fine job covering the PACE trial, where factual errors from nearly a year ago are still uncorrected and all demonstrable methodological concerns were glibly dismissed out of hand? Contrary to claims above, the IACFS/ME does list an editor and editorial advisory board, as JustinReilly already pointed out.[21]

Don't know if WP:MEDRS even applies since it isn't being used to make a biomedical health statement. However, the first summary sentence of MEDRS states "occasional exceptions may apply", citing WP:IGNORE which is "If a rule prevents you from improving or maintaining Wikipedia, ignore it." Not a trump card for violating all other rules, but a *policy* none the less. Kindlon's article is the most extensive paper on the issue of harms in CBT and GET that I've ever come across. It is peer reviewed by the professional International Association for CFS/ME. It fills a huge void in the literature and should be used more than just a fourth reference for patient surveys.

At Wikipedia the spirit of the law is supposed to be more important than the letter of the law. This can be problematic if people disagree on the spirit, but during the years here I've seen much more relentless parroting of Wikipedia's rules than constructive "consensus", despite WP:BURO stating that, "rules are not the purpose of the community". MEDRS was written with the average medical article in mind, apparently often by medical professionals or people claiming such. But "common practice" has limitations when dealing with the issue of ME/CFS because it is not an ordinary medical topic, and medical authorities has commonly displayed incompetence and negligence when it comes to ME/CFS.

As IVI points out the science is not settled. Constantly placing such a strict interpretation of MEDRS over the ME/CFS articles is a stranglehold that is preventing Wikipedians from making a better article. I'm not saying ignore all rules to let the floodgates open for all sorts of garbage to bloat up the articles, just relax the interpretations a little to briefly include more discussion and viewpoints which are not being adequately covered in so-called "high quality secondary sources". The implication of WP:CON is that if enough reasonable people from the ME/CFS community were to come here they would be the ones defining "common practice" for this article. - Tekaphor (TALK) 06:12, 14 December 2011 (UTC)

All that really matters is whether it passes the three core content policies WP:NPOV and WP:V and WP:OR. The principles of NPOV "cannot be superseded by other policies or guidelines, or by editors' consensus". The remaining variable is what NPOV refers to as "weight", and I don't see a problem with a single sentence. - Tekaphor (TALK) 06:26, 14 December 2011 (UTC)

Tek, the citation was used once, in a sentence that already has three pubmed-indexed citations. I simply don't see this as something worth spending a lot of time on. Is it proposed to be used somewhere else? Otherwise this seems like a poor use of our time and attention. WLU (t) (c) Wikipedia's rules:^simple/_complex 12:19, 14 December 2011 (UTC)

I wasn't involved in the above editing activities and I haven't read all of the paper but I did mention the possibility of using it as a brief sentence about the issue of harm reporting in CBT and GET, rather than just as a 4th citation about patient surveys. As for the argument that this source is redundant, even just looking at the abstract it is still useful, at least for the CFS Treatment subarticle where only two such surveys are mentioned, because it has combined the data from 8 surveys and is probably more a WP:RS than an advocate website? : "Fifty-one percent of survey respondents (range 28-82%, n=4338, 8 surveys) reported that GET worsened their health while 20% of respondents (range 7-38%, n=1808, 5 surveys) reported similar results for CBT." - Tekaphor (TALK) 02:07, 16 December 2011 (UTC)

I agree with Tekaphor including the paragraph immediately above. JustinReilly (talk) 05:18, 16 December 2011 (UTC)

I would have to see a proposed or actual change to say what I thought. The sole use I've seen it for is as an unnecessary citation. I would suggest attributing it as a publication by an advocacy group though. And use caution - if nothing else, the statement about it's bulletin has a grammatical error (journals are peer reviewed, not peer review ). Further, there's no discussion of who the peer reviewer(s) is/are, are they members of the advocacy organization? Does the organization promote a specific point of view? What sort of independence is there? Pure number of subjects is less important than accounting for selection bias. I'm not saying it must not be used, I'm saying it should be used cautiously. Part of the concern is the lack of pubmed indexing which really, really suggests treating it with kid gloves for MEDRS claims. WLU (t) (c) Wikipedia's rules:^simple/_complex 14:14, 16 December 2011 (UTC)

(←) How do we decide a journal's selection bias for purposes of Wikipedia? The IACFS/ME lists an editor and editorial advisory board. I don't know if these people serve as peer reviewers, but now you are expecting the names of peer reviewers and/or their biographies? Is this even common practice in medical journals? I will draw a comparison to the PACE trial which is given the largest weight out of any single primary source in all the ME/CFS related articles. If you can find out on the Lancet website [22] the names and biographies of the people who peer reviewed the PACE trial then I will take your demand for names/biographies of peer reviewers for the IACFS/ME Bulletin more seriously. - Tekaphor (TALK) 02:16, 17 December 2011 (UTC)

I think that the nominal grammatical error "peer review" is not grave enough to consider at all. These are scientists- they went into science because they couldn't talk good. : ) IACFSME is a professional organization of "scientists, clinicians and educators" "dedicated to scientific research and improved patient care." They do say that one of their goals is to "establish IACFSME as a powerful advocate of research and treatment", but any advocacy they do is ancillary to being a professional research and education org, in my impression over the years. http://www.iacfs.net/Portals/0/pdf/single%20pages%20final.pdf

WLU's idea of using this source 'with caution' sounds reasonable to me.

Isn't the identity of peer-reviewers kept secret in any peer-reviewed publication? Since the members are research scientists and clinicians specializing in ME, I would expect that members of IACFSME have much more subject-matter expertise than the peer-reviewers of a typical ME article (which are often in psychological and psychiatric journals).

WLU, can you explain more what you mean by this: "Pure number of subjects is less important than accounting for selection bias." JustinReilly (talk) 06:18, 17 December 2011 (UTC)

The "advocacy" facet already means there is an issue - "advocacy" is very different from science. If we're serious about using this journal extensively, it would be nice to see what sort of impact it has, what the citation indexes are, things like that. Does it have a good scientific reputation? Is it vanity press for the organization? Are the peer reviewers drawn from within, or outside of the organization? These are the sorts of questions that determine reliability. Lack of pubmed indexing is an issue, enough to question the degree of respect the journal gets.

Peer review can be anonymous or not and can be revealed after or not. They are also selected for expertise, not merely at random.

Pure numbers doesn't mean much if your recruitment is biased. For instance, if they recruited from people who were dissatisfied with GET and CBT as a form of treatment, you've got a bias. You may accumulate a million subjects, but if the question you're asking is "does GET or CBT work for you", your results are nor generalizable. Again, I would have to see a suggested use before giving a more concrete comment. WLU (t) (c) Wikipedia's rules:^simple/_complex 02:23, 20 December 2011 (UTC)

Suggested uses:

Out of 5 surveys conducted by patient organizations, 20% of respondents (range 7-38%, n=1808) reported that CBT worsened their health.
Out of 8 surveys conducted by patient organizations, 51% of respondents (range 28-82%, n=4338) reported that GET worsened their health.
<after reading full text, summarize a brief sentence about how the reporting of harms in CBT and GET needs work>

_Tekaphor (TALK) 04:59, 21 December 2011 (UTC)

Ugh, I really think that's a bad idea. Looking over the full paper, it cites eight surveys, none appear to be published in anything scholarly, and synthesizes it into a document that itself is of dubious peer review and scholarly respect. I would be OK with saying "surveys of patient groups have suggested GET and CBT may have under-appreciated adverse effects" but that's about it. Certainly not details or numbers, which convey the idea that the findings are reliable and 'hard'. WLU (t) (c) Wikipedia's rules:^simple/_complex 18:10, 21 December 2011 (UTC)

"Multiple Psychological and Physiological Factors may Contribute" to CFS?

Latest comment: 12 years ago74 comments12 people in discussion

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I'm going to revive this discussion from the last archived page: http://en.wikipedia.org/wiki/Talk:Chronic_fatigue_syndrome/Archive_15#.22Multiple_Psychological_and_Physiological_Factors_may_Contribute.22_to_CFS.3F

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 Hotopf are not credible authorities, though perhaps this book may technically be a "Reliable Source." This is also an outdated book (1998). There isn't a reasonable basis for concluding that multiple psychological factors contribute. I have certainly read that from authoritative sources and will look for one. 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) 23:16, 16 December 2011 (UTC)

I have to go, so I'll be abnormally briefy.... Making that assessment would inherently constitute WP:OR on our part. Unless and until medical consensus around the world clearly establishes that all CFS is entirely physical (or whatever other etiology), we cannot make that decision here at Wikipedia. – RobinHood70 ^talk 00:49, 17 December 2011 (UTC)

There are certainly clashing views presented in the literature around whether or not "multiple psychological factors" may contribute to maintenance of symptoms (with no actual basis as far as I've seen). It also seems that the assertion that "multiple psychological factors" may contribute to causation is in the clear minority in the literature. So at the very least, this should not be presented as a fact, but instead brought up under controversies and perhaps pathophysiology sections as one view. Otherwise, this position is given undue weight and prominence.

The cite is to an outdated (and incredible, though perhaps a "Reliable" ("RS")) source, so I would like to remove this statement from the first paragraph. I really think anything mentioned in the first paragraph should have a rock-solid, recent source. JustinReilly (talk) 02:30, 17 December 2011 (UTC)

I think JR has a valid point here, the use of the term ‘may’ by the quoted experts seems highly problematic, rendering the expert pronouncement void of an specificality. Essentially one could say of any medical condition that “multiple psychological and physiological factors may contribute to the development and maintenance of symptoms”. For inclusion in the article, “maintenance of symptoms” should be demonstrable in replicated studies, the source doesn’t appear to reference these (if it did it would surely avoid use of the indefinite “may”) so all that we have is an ‘opinion’ from a single medical specialism, about a condition that is acknowledged to be relevant to multiple specialisms. There is also a degree of contradiction between the sources currently number [5] and [6] – the fomer distinguishes between ‘functional conditions’ and CFS (see Overlapping conditions) Given the contradiction between sources and that the problematic source dates from 1998 and there has been ample opportunity in the intervening 13 years to demonstrate certainty of “maintenance of symptoms” and that such demonstration hasn’t occurred, an edit to remove the ambiguity is required. I suggest changing:

Although classified by the World Health Organization under Diseases of the nervous system,[4] the etiology (cause or origin) of CFS is unknown, and multiple psychological and physiological factors may contribute to the development and maintenance of symptoms.[5][6] There is no diagnostic laboratory test or biomarker for CFS.[2]'Italic text

to

Although classified by the World Health Organization under Diseases of the nervous system,[4] the etiology (cause or origin) of CFS is unknown [6] and there are no accepted diagnostic laboratory tests or biomarkers for CFS.[2] --In Vitro Infidelium (talk) 12:44, 17 December 2011 (UTC)

I support the proposed edit. Anything may contribute to the development and maintenance of a syndrome for which the etiology is unknown. The excised assertion is ~~meaningless~~ speculation. --Anthonyhcole (talk) 15:16, 17 December 2011 (UTC)

I don't think it's fair to say that 'anything' may contribute. We do actually have a lot of research on triggers, and stress and viruses seem to be the two main ones. Also if you look at the pathophysiology article we mention multiple psychological factors. Also the 2003 Buchwald review that we reference for that sentence says "Findings to date suggest that physiological and psychological factors work together to predispose an individual to the illness and to precipitate and perpetuate the illness". The real question here is why some editors want to remove this. --sciencewatcher (talk) 16:31, 17 December 2011 (UTC)

"Suggest" is not strong enough for the lede. By all means discuss this speculation with due weight in the article or elsewhere, but it is inappropriate for the lede. --Anthonyhcole (talk) 16:51, 17 December 2011 (UTC)

Just to ensure due process was followed, I went looking on PubMed for articles that would support the concept of a psychological maintenance of symptoms (based on various combinations of relevant keywords..."cfs perpetuate" was the one that turned up the most relevant results). I found a very limited number, most were around 10 years old (when psychological maintenance and causation beliefs were more common) and most also allowed for the possibility that other factors could be involved. Some of the articles that also turned up in the search talked about entirely physical perpetuation of the illness, so clearly, both physical and psychological perpetuation are still on the playing field. Of those that only discussed psychological etiologies, they all used similarly vague wordings such as "suggest", "may", and "hypothesis". Given the very small number of articles that seem to support this assertion, I agree with Anthony Cole that this should be removed from the lead, but that it still merits a place in the broader article where we can discuss the broader divergence in theories with appropriate weight given to both. – RobinHood70 ^talk 20:02, 17 December 2011 (UTC)

Two comments.

1. The Afari and Buchwald review is well cited in pubmed [23] so it certainly is a good WP:MEDRS. The actual wording the the article states, "Taken together, current knowledge about chronic fatigue syndrome suggests that genetic, physiological, and psychological factors work together to predispose an individual to the condition and to precipitate and perpetuate the illness."[24] This wording supports the statement in the lead, but many illnesses fit this criteria to some degree or another. I agree with Anthonyhcole, and I support IVI's proposed change.

2. The book citation by Wesseley, Sharpe and Hotopf[25] is proposed to support the wording. It probably is somewhere in the 400 page book, but the pages aren't specified and I haven't been able to find the section that specificially supports this wording. The book also talks about contributions from inactivity and fitness (pg.166), infection (pg.176-192), allergies (pg.201), comorbid conditions (pg. 310-316) and other factors.

Keepcalmandcarryon stated their reason for adding the citation, "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)"[26] Citations are added for verifying the material in the article, not for their overview of the state of the knowledge in 1999. This citation is written so vague it is useless for verification of the material in the lead and probably should be modified or removed. Ward20 (talk) 22:30, 17 December 2011 (UTC)

I don't have a problem with removing the book citation. --sciencewatcher (talk) 23:04, 17 December 2011 (UTC)

I like IVI's proposed edit of the first two phrases through "the etiology (cause or origin) of CFS is unknown [6]". (for the last phrase, I would add "generally" - or something similar such as "widely" or "commonly" - between 'no' and 'accepted', but this has more to do with our other discussion of biomarkers, and I guess should be dealt with there)

My new proposed edit (IVI's proposed edit + insert "generally"): Although classified by the World Health Organization under Diseases of the nervous system,[4] the etiology (cause or origin) of CFS is unknown [6] and there are no generally accepted diagnostic laboratory tests or biomarkers for CFS.[2] JustinReilly (talk) 00:42, 18 December 2011 (UTC)

I still don't see why we should remove that bit...it seems to be a fair summary of the article, and that is what the lede is supposed to be. Here is alternative wording from the conclusions of Buchwald: "Findings to date suggest that physiological and psychological factors work together to predispose an individual to the illness and to precipitate and perpetuate the illness". If it's important enough to take up 50% of the space of the conclusions of what appears to be one of the best reviews we have, I think it should be included in the article. --sciencewatcher (talk) 03:15, 18 December 2011 (UTC)

Oh, and just to clarify, I think 'may' is a being a little conservative here...if you look at the other wordings they use, e.g. ' Findings to date suggest that physiological and psychological factors work together', that seems to be about right. It's certainly not like cancer or other illnesses where stress and psychological factors have nothing to do with the etiology...in CFS these (and other) factors are thought to be important in the etiology, so it is incorrect to say that we shouldn't mention this because it is the same as for any other illness. --sciencewatcher (talk) 03:23, 18 December 2011 (UTC)

I'm not following what you mean by "in CFS these (and other) factors are thought to be important in the etiology." The statement we're discussing says findings "suggest" involvement of these factors. Is there an authoritative secondary source that makes a stronger claim for their involvement in etiology to support your stronger statement that these factors are "thought" to be important in the etiology? --Anthonyhcole (talk) 03:38, 18 December 2011 (UTC)

I'm happy with using 'suggest', or leaving the wording as is. I'm not saying that we need to make it stronger, but rather than it is sufficient to stay in the article. --sciencewatcher (talk) 03:46, 18 December 2011 (UTC)

In my experience, authors use "suggest" when the evidence is weak. It is often used to describe results that trend one way or another but don't reach statistical significance.

I'm fairly sure most Wikipedia articles on medical conditions, including all psychiatric syndromes (from memory), do not speculate on possible causes in the lead, when the evidence is weak. This is of course appropriate for Pathophysiology of chronic fatigue syndrome but not here. Especially considering psychiatry's appalling track record with its baseless pontifications about the psychological basis of stomach ulcers, hypothyroidsm, and god knows what else. They may be right this time but we don't usually put such speculation in the lede, and privileging this speculation in the lede is undue and may mislead readers as to the strength of its evidence base.

I just looked at the lead of the major psychiatric syndrome articles. This is what they say about possible causes:

ADHD: No mention.
Generalized anxiety disorder: No mention
Autism spectrum disorder: No mention
Schizophrenia: "Genetics, early environment, neurobiology, and psychological and social processes appear to be important contributory factors; some recreational and prescription drugs appear to cause or worsen symptoms. Current research is focused on the role of neurobiology, although no single isolated organic cause has been found."
Bipolar disorder: "Genetic factors contribute substantially to the likelihood of developing bipolar disorder, and environmental factors are also implicated."
Major depressive disorder: "Proposed causes include psychological, psycho-social, hereditary, evolutionary and biological factors."

Except where the evidence is strong, none mention etiology. "Appear to be important", in Schizophrenia reflects the considerable strength of the evidence there, as does "also implicated" in Bipolar disorder. "Proposed causes include" implies nothing about the (considerable) strength of the evidence in Major depressive disorder. --Anthonyhcole (talk) 04:53, 18 December 2011 (UTC)

Oh and one final thing, this time directed to Justin: your little ploy to get around wikipedia rules by getting all your cronies to post on this page won't work, and here is why: wikipedia doesn't operate on a voting system, so even if you get 100 people to agree with you, it won't make a shred of difference. You can't force your point of view into a wikipedia article - it simply won't happen. I'd suggest you do what (most of) the regular editors here have done, which is to work within the wikipedia guidelines to make the best article possible reflecting the sources we have. While this will never be the 'truth', that isn't what wikipedia is about. My own reason for editing this page is to help CFS patients by giving them the most accurate information available, and I know that many of the regulars here share that view. I would suggest you do the same if you don't want to waste your time and everyone else's. And if anyone wonders what prompted me to write this little rant, do a little googling. --sciencewatcher (talk) 03:46, 18 December 2011 (UTC)

~~Yes, I was disturbed by that comment~~. If it starts to look like there's been off-wiki canvassing, I'll be arguing for full page protection. Justin, please familiarise yourself with WP:CANVASS, if you haven't already. If you perceive bias in the article, your best tools are WP:MEDRS, WP:NPOV and polite sound reasoning. --Anthonyhcole (talk) 04:10, 18 December 2011 (UTC)

Which comment are we referring to? I didn't see anything within the body of this section that suggested any kind of canvassing. Nor have I seen any new or unusual contributors to the page. Did I miss something? – RobinHood70 ^talk 04:26, 18 December 2011 (UTC)

This is spooky. I'm sure I read Justin musing on the effect on consensus here if one were to invite participation from patient advocate groups, but I can't find it now. Is that what you were referring to, Sciencewatcher? --Anthonyhcole (talk) 05:45, 18 December 2011 (UTC)

I got that wrong. It was this from Tekaphor above that I was thinking of, and on second reading, it's quite benign. "The implication of WP:CON is that if enough reasonable people from the ME/CFS community were to come here they would be the ones defining "common practice" for this article." --Anthonyhcole (talk) 13:55, 18 December 2011 (UTC)

(←) Someone just contacted me off-wiki and said it had been mentioned on Phoenix Rising somewhere. I don't follow Phoenix Rising, but maybe that's where you saw it? (The astute will notice I have an account there...I joined about a year or two ago and saw a few predominant personalities there whom I really despise, so decided to leave it alone.)

As to the suggestion of what would happen here if patient advocate groups became active here, it would make very little difference in the short term. Sciencewatcher is right that votes do not trump the rest of the rules—not by a long shot—and any kind of suspicious activity would get this article locked very quickly (and I'd be happy to request it myself if I saw any kind of biased editing). I don't doubt for a moment that CFS is primarily physical in nature, but medical science hasn't proven that yet—until it does, any encyclopedic article on the subject needs to reflect all prominent points of view, even when we as patients disagree with them vehemently.

All that said, however, what any new user(s) can legitimately bring to the table is information. Each of us here finds research that others don't, brings a new perspective to the existing information, points out holes in logic, etc. If new editors want to get involved and understand & abide by the rules that Wikipedia operates under, then there's no reason they shouldn't. – RobinHood70 ^talk 06:25, 18 December 2011 (UTC)

Edit made to lead as per my proposal - which seemed to have consensus. I found JR's proposal difficult to understand, and the following discussion (about the article body ?) somewhat opaque and to include a degree of POV based argument - SW we've rehearsed the stress hypothesis on my talk page [27] and you've not presented compelling sources for the defintive placement of 'stress as agency' in the CFS article that you seem to believe is warranted. I also don't think it helpful to respond to a new user (in this case JR) with absence of assumption of good faith and incivility. JR was misguided in posting as he did on the PR forum, but there's no evidence he acted with 'evil intent', simply naivety and as RH points out attracting new editors, notwithstanding concerns about Single Purpose Accounts, is something WP should welcome. For other suspicious editors here, I have posted on the PR forum, where my perspective was consistently in a minority. I stated on that forum some time ago that I would not continue posting there and am not interested in off wiki cavassing or cabalism at that or any other venue. I suggest that any discussion on changes to the article body text, that may or may not be required following the change to the lead be restarted in a new section, and fully separated from the confounding factors introduced above. --In Vitro Infidelium (talk) 12:27, 18 December 2011 (UTC)

Break

(edited) this is what I was talking about.

As for the edit itself, I think IVI is getting confused here, or maybe my discussion above was confusing him/her. So to keep things simple the main point is that this is a well-referenced, important point from a well-cited, reliable review. Also it concurs with other sources such as the CDC website. Basically it is a good summary of the situation, which is what the lede should be. The only reason for removing this is that Justin wants to "control the content" for his "ME advocacy" purposes. --sciencewatcher (talk) 16:13, 18 December 2011 (UTC)

Are you suggesting this current conversation has been tainted by canvassing?

This claim:

multiple psychological and physiological factors may contribute to the development and maintenance of symptoms

cites

Afari N, Buchwald D (2003). "Chronic fatigue syndrome: a review". Am J Psychiatr 160 (2): 221–36
Wessely S, Hotopf M, Sharpe M (1999). Chronic fatigue and its syndromes. Oxford: Oxford University Press. ISBN 0192630466.

Can someone point me to the page in each of these sources that supports the claim? --Anthonyhcole (talk) 18:36, 18 December 2011 (UTC)

SW: It's unreasonable to assume that we're all aware of what you're talking about based solely on a claim that Justin was trying to get "his cronies" to contribute. If you're going to make accusations of off-wiki canvassing, then you should post a link (the first time around, that is) so we're not all wondering what on Earth you're talking about. It is, after all, Wiki policy to assume good faith, not to go hunting for instances of bad faith or, as IVI points out, possible naïveté about Wikipedia's rules.

As to the edit itself, who deems it important besides you? Well-cited and reliable does not necessarily give sufficient weight to include the information in the lead. What does a speculation add to the lead, which in my mind, should summarize what's known about a condition, not what's thought about it? According to WP:LEAD, we should summarize controversy, which we do in the last paragraph of the lead. The first paragraph isn't about controversy, it's a description of what the disease itself is about, thus controversial etiologies should remain absent from that paragraph. Justin's motivations for the edit are irrelevant—the simple fact is, he's right. – RobinHood70 ^talk 20:03, 18 December 2011 (UTC)

I've spent several hours researching this and I think these views are in flux due to the increasing recognition of heterogeneity within the definitions and specialties[28][29]. In regard to Anthonyhcole's points I found the important wording in Buchwald concerning the edit under discussion to be in the Abstract, Pathophysiology, Attribution, Perception, and Coping, and Conclusions. Two versions from the article were previously put forward, "physiological and psychological factors work together", and "genetic, physiological, and psychological factors work together".

Other wording in the Conclusions state, "However, a growing body of literature suggests that abnormal biological processes are present in many patients, including subtle abnormalities of the CNS and of neuroendocrine regulation and chronic activation of the immune system. These abnormalities across many domains suggest that chronic fatigue syndrome is a heterogeneous condition of complex and multifactorial etiology....and treatment must be individualized, reflecting the heterogeneity of the chronic fatigue syndrome population."

I also found a a few more reviews worth mentioning that support the heterogeneity. They are recent with good citations.

A 2006 Wessely article PubMed full text reiterates, "importance of several psychological factors especially in maintaining CFS:", but also states, "The current case definition of CFS does not, however, seem to define a single clinical entity...", and "These recent findings suggest that further research is needed on the improvement of the current case definition of CFS;...the involvement of CNS; the question of whether the pathophysiologic findings are the cause or consequence of CFS; and the high quality investigation of immune dysfunction and genetic contribution."

The 2009 review by Lorusso PubMed [30] primarily implicates immune factors. "The main hypotheses include altered central nervous system functioning resulting from an abnormal immune response against a common antigen; a neuroendocrine disturbance; cognitive impairment caused by response to infection or other stimuli..."

So one size doesn't appear to fit all, and trying to generalize about "multiple psychological and physiological factors" in the lead is not warranted IMO.

Another article I found at the National Cancer Institute discusses correlations between stress and cancer IMO further reinforces Anthonyhcole's point about not putting "suggested" relationships in the lead.

I didn't find any article support for JR's proposal to change to the wording, "there are no generally accepted diagnostic laboratory tests". Ward20 (talk) 23:34, 18 December 2011 (UTC)

(←) The first 200 search results of [justin reilly wikipedia cfs] on Google do not list the forum thread in question, I found it by accident when I misspelled [justinreily wikipedia cfs] on my first attempt. WP:CON policy states, "Discussions on other websites, web forums, IRC, by email, or otherwise off the project are generally discouraged." The WP:CANVAS guideline is all about on-wiki activity except for the part about how "the use of email or other off-wiki communication to notify editors is discouraged unless there is a significant reason for not using talk page notifications". So it is discouraged but not a hanging offense, it didn't cause disruption this time and if people stick to the rules then what's the problem? The recommended discipline is just a polite request to stop, future incidences assuming they are disruptive "may be reported to the administrators' noticeboard, which may result in their being blocked from editing".

If you search for cfs wikipedia within the last week, it is the very first result on google. --sciencewatcher (talk) 15:41, 19 December 2011 (UTC)

Anthonyhcole said, "I'm sure I read Justin musing on the effect on consensus here if one were to invite participation from patient advocate groups, but I can't find it now." Maybe there was confusion with what I said in the different context of another talkpage section; The implication of WP:CON is that if enough reasonable people from the ME/CFS community were to come here they would be the ones defining common practice for this article. I was merely pointing out the irony of expecting all newcomers to follow consensus derived policies/guidelines and article content, at some point they become the consensus.

Wikipedia's rules and multiple editors here claim that voting does not count. WP:CON further states, "The quality of an argument is more important than whether it represents a minority or a majority view." Who judges the quality of the argument? It depends on subjective interpretation and the variable of "common sense" which isn't codified. Raw vote counting isn't allowed, but in practice when people disagree we have ad hoc quasi-voting, we all know what happens in a conflict of 4 people when 3 editors of the same opinion disagree with the argument from the remaining dissident. In the case of 2 people, it is usually the more aggressive editor that wins out if they cannot reach a compromise.

If 100 people came here and merely agreed with JustinReilly, it supposedly wouldn't count. But if those 100 people presented reasonable arguments according to the rules why JustinReilly is correct, then you can kiss the current "consensus" and opposing arguments goodbye. Who defines all these rules anyway? They are also defined or heavily influenced by "consensus" derived from what a self-selected group of Wikipedians believe constitutes best common practice for the entire community. What happens when hypothetical group of 100 people start deciding the current common practice is inadequate and needs changing? Good luck trying to stop them. - Tekaphor (TALK) 03:44, 19 December 2011 (UTC)

I see above that Anthonyhcole already spotted it. - Tekaphor (TALK) 03:48, 19 December 2011 (UTC)

Not sure that this is relevant, but I made one of the IACFS edits (87.115.236.35), as I'd just made another minor edit elsewhere on wikipedia, and spotted that someone here had claimed IACFS was not peer reviewed, when I remembered that it was (and easily checked it on their website). I was not part of some illicit campaign, but rightly correcting the error of another, which was then again reverted with the explanation: "Not peer reviewed". Flatronal (talk) —Preceding undated comment added 10:09, 19 December 2011 (UTC).

In reply to RobinHood's comment: this isn't speculation, it is what is known about CFS. If you look at CDC's website (http://www.cdc.gov/cfs/general/causes/) you'll see that the main causes listed are: infectious agents, immunology, HPA axis and NMH. It also says under HPA axis "Physical or emotional stress, which is commonly reported as a pre-onset condition in CFS patients". It is ludicrous to deny that psychological factors are important in CFS, given the evidence and reviews we have, yet there are a lot of editors here who want to hide it under the carpet. I know many patients don't like it, but that is not a good reason to remove it from the article. Certainly we can put information about the hate into the controversy sections, which is what we have already done. I would be interested in hearing what a neutral medical expert such as JFW or JMH thinks about this. I also find it interesting that Tekaphor and others are trying to defend Justin when he was clearly trying to incite people to get around wikipedia rules and control the content. I don't have a problem with organising off-wiki to improve the article (who wouldn't?), but when you're inciting people to get around wikipedia's RS rules by voting in favour of an edit, that isn't something you should be defending.

(edited). --sciencewatcher (talk) 15:16, 19 December 2011 (UTC)

You have not addressed any of my concerns. I don't even think you've understood them. Your attitude is rude and patronising. Does anybody here agree with Sciencewatcher's position that the lede of this article should include "multiple psychological and physiological factors may contribute to the development and maintenance of symptoms"? --Anthonyhcole (talk) 16:16, 19 December 2011 (UTC)

[Sciencewatcher has removed the comments I describes as "rude and patronising." [31]. --Anthonyhcole (talk) 03:38, 20 December 2011 (UTC)]

I don't follow, ~~and please be WP:CIVIL~~. Buchwald (at the link you yourself give) says in their conclusion "Findings to date suggest that physiological and psychological factors work together to predispose an individual to the illness and to precipitate and perpetuate the illness". That is what supports the text. --sciencewatcher (talk) 16:27, 19 December 2011 (UTC)

Yes, you don't follow. It is weakly supported speculation and, as such, doesn't belong in the lede. Most readers familiar with scientific writing understand what "findings suggest" means, but most readers of an encyclopedia won't. This will mislead them. I have invited comment from Wikipedia:Wikiproject medicine. --Anthonyhcole (talk) 16:49, 19 December 2011 (UTC)

Yes, I did actually follow~~, and for the second time please be WP:CIVIL~~. I understand your argument, and as I pointed out above the evidence seems to be robust enough to put this in the lede, as it takes up 50% of the conclusions of one of the best reviews we have, and also the CDC website supports the text. The evidence isn't rock solid, but it certainly isn't speculation either. If you think it is purely speculation, you really need to do some more reading on the subject (and I see you admit you know little about the condition). And it is certainly not a case of "the phrase is being held in place because it offends patients and advocates" as you speculate on the wikiproject medicine page (at least, that is certainly not my justification, quite the opposite in fact, which you would know if you followed my edits or knew me personally). --sciencewatcher (talk) 16:57, 19 December 2011 (UTC)

With regard to civil behaviour, please point to an instance of my incivility. "Not this shit again" is offensive. Of course it is speculation. Look at the language: "suggest" + "may" = speculation. Why are you pointing to that CDC page? It reports that physical or emotional stress is commonly reported as a pre-onset condition in CFS patients. Vaccination is commonly reported as a pre-onset event in autism. --Anthonyhcole (talk) 17:59, 19 December 2011 (UTC)

As for "I fear that the phrase is being held in place because it offends patients and advocates, and is making some kind of point", I've seen this too often on this project: POV pushers - Muslims on Muhammad, Scientologists on L. Ron Hubbard, acupuncturists on Acupuncture, etc - besiege a page; the community pushes back, resentment builds, and the result is the POV pushers loose (which is a good thing) but the article ends up unbalanced in the opposite direction, because it is left in the hands of one or two editors who are quietly pushing it that way, and people who are neutral on the issue assume anyone who complains about the new bias is just a (Muslim/Scientologist/acupuncturist or, in this case, patient advocate). I hope my fears are unfounded, but the way you treat others on this page doesn't fill me with confidence. --Anthonyhcole (talk) 18:33, 19 December 2011 (UTC)

Perhaps a compromise would be the lead mentioning that the exact cause(s) of CFS are debated? Admittedly, one would then have to make the choice of whether to go further into said debate in the lead, as in something like "with some scientists[citations here?] favoring essentially or purely physical causes while others[citations here?] favor psychological factors also having a role" (pretty badly put, but I think you get what I mean); I can see arguments both ways. (Incidentally, I'm both a biomedical scientist and someone with CFS.) Allens (talk) 17:04, 19 December 2011 (UTC)

(←) @Allens: The fact that the causes are debated is actually already mentioned in the lead (last paragraph).

@SW: Psychological causes are not known to be involved, they're speculated to be involved. I and several other editors have pointed out how all the wording used involves words like "may", "suggest", etc. You made this mistake yourself...you changed the idea that psychological factors may be important (as mentioned in the various reviews noted previously, and the CDC causes page you linked to) to the idea that psychological factors are important. This simply isn't proven in all, or even most, cases. Even those like Wessely who promote psychological causation for most also understand that this is a heterogeneous grouping and other causes may apply to other people. Contrary to your assertion, however, nobody's trying to remove psychological factors from the article. In fact, I think most of us are in agreement that it's a significant theory and has a place in the article body...just not in the lead. Finally, as I said, Justin's motivations or the responses to it are irrelevant. We're supposed to be discussing the content here, not the editors. – RobinHood70 ^talk 17:50, 19 December 2011 (UTC)

I have, for the time being, moved the said info from the lede to the controversies section.StevieNic (talk) 18:06, 19 December 2011 (UTC)

No consensus has yet been reached, so I think that edit was premature. Your edit also attributed to Afari and Buchwald, but used Wessely's book as a reference. JFW | T@lk 19:04, 19 December 2011 (UTC)

Delayed in edit conflict:

Does that sentence really provide any useful information? Surely psychological factors may contribute to the development and maintenance of all subjective symptoms, for every condition? Physiological factors are likely to contribute to psychological conditions too (or certain too, depending upon what you view as physiological). I don't think that the sentence is inaccurate, but it does seem superfluous, particularly as it follows on from 'the etiology is unknown'. It's inclusion/exclusion doesn't seem that important either way, other than wanting to tidy up the language. A sentence along the lines of "There has been much debate over the role of psychological factors..." would have more of a point to it, but as Allen says, there might then be a need to recount the debate.Flatronal (talk) 18:12, 19 December 2011 (UTC)

Sciencewatcher appears wholly reliant on his own OR for justification of the current wording. The current text as it stands is dependent upon two sources – one of which even SW accepts should be removed; the proposition that the retained single source supports the text on its own is not a tenable argument. SW’s construction that: “The evidence isn't rock solid, but it certainly isn't speculation either.” is a contradition in terms – either there is substantive evidence or there isn’t, if the evidence is insubstantial then that has to be referred to if that ‘weak’ evidence is invoked as being relevant to the article. Dealing with ‘weak evidence’ within the article body may be an appropariate way forward, in the lead however that is clearly far too cumbersome. Threading together as SW does, multiple sources that happen to refer to weakly supported conclusions, to create a construction that makes multiple sources of ‘weakness’ somehow equal a strong conclusion, is clearly OR on SW’s part, and it’s patently a falacious argument. We have just a single editor who using grounds that are specious in order to protect text that supports his own POV, is seeking to put a veto on an edit that is clearly agreed to by other contributing editors,. If SW continues to refuse to offer constructive involvement there is probably no alternative but to seek resolution of the issue elsewhere, at this stage SW seems to be acting strongly in terms of WP:OWN. --In Vitro Infidelium (talk) 18:24, 19 December 2011 (UTC)

Really?! You can't be serious, can you? My proposal was to take the content straight from the conclusions of one of the most authoratitive review we have, with a little bit of rewriting but no change in meaning. How on earth does that translate to 'Threading together as SW does, multiple sources that happen to refer to weakly supported conclusions'? I think your logic is seriously flawed, which is why I discontinued our discussion at your talk page. --sciencewatcher (talk) 19:59, 19 December 2011 (UTC)

What is it that makes that the most authoritative review? And why should we take any one review as conclusive when the review itself merely "suggests"? You seem to be presenting Buchwald as word from on high—it's not, it's jut one more paper like all the many, many others on this subject. – RobinHood70 ^talk 20:02, 19 December 2011 (UTC)

I'm not sure if it is 'the most', but it seems to be one of the most (fixed above), and it seems to agree with the other major reviews. Anyway, I don't want to argue about the edit any further. I've made my point and I'm going to leave it to others for now. I was just replying to IVI's dig. --sciencewatcher (talk) 20:18, 19 December 2011 (UTC)

Break 2

I don't think the concept (that fatigue is maintained by a multitude of factors) is controversial until you have proven that it is. Has any source directly critisised this line of thought? JFW | T@lk 19:04, 19 December 2011 (UTC)

I think the larger point is that we don't know what maintains or causes the illness (note that the sentence in the lead does not refer to just fatigue, but to the illness in general), whether it's one factor or several, and so the point doesn't belong in the lead except to say that etiology is controversial, which we already state. Per WP:BURDEN, the burden of proof lies with the editor who wants to include the material, and it has not in any way been proven (in either the broader scientific community or here) that any specific factor or factors contribute to the onset or maintenance of the illness. Therefore, it stands to reason that that information inherently belongs in a section on controversy. Also, I don't think the most recent edit was premature...we had one person objecting out of nine (at the time), and the grounds for his objection had been refuted. Consensus had, indeed, been achieved, though perhaps in light of your objection to the edit, the discussion should continue. – RobinHood70 ^talk 19:31, 19 December 2011 (UTC)

Another point occurs to me here as well: how can there be a direct challenge to the theory that CFS is maintained by multiple factors? Inherently, anybody who tried to challenge that could only do so by proving that there was only a single factor. Since there have been multiple theories that involved single factors (chronic EBV comes to mind), I think we can take that as being as close as we'll ever get to a challenge to the hypothesis that there are multiple factors. None of the theories about causation or maintenance are proven, therefore any suggestion that there are multiple factors maintaining the illness is inherently up to debate. – RobinHood70 ^talk 19:55, 19 December 2011 (UTC)

There is a WP:MEDRS-compatible source that says so. It is a perfectly valid question: why is CFS not self-limiting? One can ask the same question about pneumonia and cancer - why are the normal compensatory systems not succesful in reversing the disease process (in pneumonia these are the virulence factors of bacteria and in cancer this is a failure of immunosurveillance)? The source suggests that CFS symptoms are maintained by a number of factors. Are there sources that directly take issue with this approach? I'd like to hear about them. JFW | T@lk 22:52, 19 December 2011 (UTC)

But that's just the point: the MEDRS-compatible source doesn't say so, it suggests that there may be multiple physiological and psychological factors. We're not disputing that the theory may have merit, we're disputing that it belongs in the lead because it's just a theory. To use your examples, where in the leads of pneumonia or cancer are there any hypothetical mechanisms listed? Cancer comes close in saying that it's often impossible to assign a specific cause, but even there, it goes on to only talk about known cancer risks in the lead. The lead is supposed to be a quick summary of the facts, and it is not a known fact that Chronic Fatigue Syndrome has multiple physiological and psychological factors involved in its development and maintenance. The hypothesis that chronic EBV could be a cause, which would be a single physiological cause in terms of its development, and perhaps in terms of its maintenance would contradict the idea that multiple causes are involved. The hypothesis that it's purely a functional somatic disorder (e.g., [32]) would also amount to a single factor, and so forth. These would invalidate the theory that the illness is caused and maintained by multiple factors. Is that a direct contravention of what the Buchwald review says? No, but there can't simultaneously be multiple physiological and psychological factors if CFS is strictly chronic EBV or strictly a functional somatic disorder. That's a contradiction in terms. – RobinHood70 ^talk 23:58, 19 December 2011 (UTC)

I support the inclusion of text stating that psychological factors may be involved. There is a sizeable proportion of the medical world that believe CFS is wholly or in part psychogenic. Definitely not all, but at least a portion. This deserves to be noted. It may not be popular with a vocal number of editors and CFS patients or advocates - but it is part of the literature. The point is to document and summarize the debate - not conclude. People, particularly many patients, want this to be a physical disease - but until there is conclusive proof that is accepted throughout the medical world, we're still documenting the debate. One thing I'm actually surprised at is the length of the psychological/psychosocial section in the pathophysiology article being as long as it is, while there's almost nothing in the main article about it. I'm not saying we rewrite the article to emphasize psychological aspects, but we have to mention them in the lead if they are in the body and we mention them in the body if they appear in secondary sources. We don't get to ignore results because we don't personally agree with them. WLU (t) (c) Wikipedia's rules:^simple/_complex 03:10, 20 December 2011 (UTC)

I think there's a point of confusion here. The idea that there might be psychological factors isn't in dispute (or at least it's not in dispute in terms of its inclusion in the article <g>). I can't speak to the Wessely source, but the sentence quoted above from the Buchwald sources "suggests" that both physiological and psychological factors contribute to the disease and its maintenance, either simultaneously or in sequence. The idea that this coexistence is an uncontested theory is what's at issue. (At least it is for me, and glancing back at other contributors' comments, clearly some of them have that understanding as well. Those coming at this from an advocacy perspective may have a different understanding here.) The simplest way around that is to get rid of that portion of the phrase and have it covered more broadly under "unknown etiology". You have a point, though, that removing it would leave out any specific mention of either physiological or psychological involvement. If it's felt that we need to address that point specifically, then I think it would make more sense to add that to the fourth paragraph, which talks about the controversy specifically (and we would need to use wording and sources that clearly states that either or both may be involved). – RobinHood70 ^talk 04:19, 20 December 2011 (UTC)

I would like to see a clear and neutral description of the psychosomatic etiology hypothesis in the body of the article. Perhaps someone familiar with the sources would like to propose something. Ordinarily, I'd suggest being bold but, since this is such a contentious area, it may be helpful to work it out on the talk page first.

I mentioned acupuncture above as an example of an article that shifted too far in reaction to POV pushers. For the record, I was referring to the past, when ScienceApologist and others were active there. WLU's stewardship of that page has been exemplary.

Proposal: As I pointed out above, many of our articles on psychiatric disorders say nothing about possible causes in their lede, and those that do have a much stronger evidence base than CFS. But perhaps CFS should, because of the popular controversy around the psychosomatic hypothesis. There is something ambiguous and possibly weaselly and open to misinterpretation about "may" in "multiple psychological and physiological factors may contribute to the development and maintenance of symptoms." MDD has "Proposed causes include psychological, psycho-social, hereditary, evolutionary and biological factors." Perhaps we could have

"Multiple psychological and physiological factors have been proposed as possibly increasing the liklihood of developing CFS, triggering the the illness, and perpetuating it."

--Anthonyhcole (talk) 08:37, 20 December 2011 (UTC)

Good, more discussion on how to improve the article. With more experienced editors looking this over there should be a solution that most can support. Another proposal:

CFS is presently thought to be a "heterogeneous condition of complex and multifactorial etiology".[5] Proposed mechanisms for the development and persistence of symptoms include psychological, biological,[5] genetic, and infectious components.[33]

With the different definitions, along with new research into subgroups, everything from simple depression, burnout, EBV, Ross River virus, Q fever, immune defects, genetics, and more, see (Pathophysiology of chronic fatigue syndrome) has credibly been correlated with cfs. I think the pathophysiology section in the main article has been neglected because it has been contentious to edit in the past. It should be put into better shape with effort from editors that are willing to document the literature, cooperate and not retreat into a fixed POV. Ward20 (talk) 10:17, 20 December 2011 (UTC)

Anthony Coles' seems to me unnecessary - "no aetiology" is definitive. If there is to be comment on disease hypothesis, then that needs to be clearly identified separately from any discussion of aetiology. It's the textual linking of 'opinion' with established fact that makes current wording so egregious a failure.

@WLU - the pathophysiology article carries this: The possible involvement of psychological factors within CFS is both unclear and contentious, the fact there there's a lot of psycho stuff in the pathophysiology article, could be argued as evidence of the imbalance of that article, and not stand as evidence for a lack in this. How patients want to characterise the disease of course can't be the defining isue of a WP article, but we are back to your apprehension of the need to give weight to the volume of published review, while ignoring the fact that we are dealing with a condition without settled science and where all the psychiatric material keeps repeating the same the narrow perspective without any progress in definitive research. Having the same 'experts' say the same thing five times over in ten different fora, doesn't equal a weighting of 50 - the weight is still just 1. Acknowledging the 1 may be necessary, but as 1, not 50.--In Vitro Infidelium (talk) 10:33, 20 December 2011 (UTC)

Nothing in CFS is uncontested, because nothing is settled. It is not our job to predict what will be the definitive theory, only what the proposed theories are now. I don't think we should say "CFS is psychogenic", we should say "Some people have proposed psychological factors as causing or perpetuating CFS". CFS having a psychological component is not controversial among experts (just as its not settled), it's objected to by patients (and some experts agree, but most just aren't sure). I prefer Ward's version, but I would reword to remove the quote. Personal beef, I hate quotes.

The etiology of CFS is not understood and may have multiple causes.[5] Mechanisms have been proposed for the development and persistence of symptoms, include psychological, biological,[5] genetic, and infectious components.[34]

IVI, CFS has no accepted etiology, period, merely a large number of hypotheses. The psychogenic factors are unpopular among patient groups and almost certainly others, but it must still be documented. None of the hypotheses are presented as definitive, and all are short; this is in contrast to the immunological section that contained a large number of low-quality sources (Medical Hypotheses basically shouldn't be cited, ever) and primary documents with a small number of subjects. All the sources need to be checked and the primary replaced with secondary, or removed. The very fact that there are a large number of sources discussing psychogenic factors is a pretty clear indication that it is considered a viable explanation for at least partial of the research community. If you can find a large number of sources, that means it is undue weight to ignore it. Your comment about a lack of definitive research for psychological causes applies equally well to the physiological causes. Lots of tests are proposed - which one does everyone agree has tremendous sensitivity and specificity for CFS and successfully distinguishes patients from healthy controls? Which corroborates a biological origin for CFS that is accepted by most researchers? I would argue pretty much none, the research is undeveloped. You say repetition doesn't make for acceptance - actually it does as it indicates that publishers of peer reviewed journals believe the idea has merit thus indicating weight. A profusion of pilot tests that are not replicated and extended however, does not indicate that CFS has a physiological cause; secondary sources will rightly point out the lack of consensus (or if there is consensus, I haven't seen it yet - please indicate which sources demonstrate it clearly and convergently). WLU (t) (c) Wikipedia's rules:^simple/_complex 12:13, 20 December 2011 (UTC)

I like WLU's version. Anybody else? Should it go in the first or last paragraph of the lede? --Anthonyhcole (talk) 15:43, 20 December 2011 (UTC)

I agree. WLU's version provides a better summary of the article than what we have at the moment and it covers all the bases. There is just a minor grammar problem as far as I can tell...I think you need to either remove 'have been' or change 'include' to 'including'. As for position, I would be inclined to leave it in the same location as the sentence it is replacing. --sciencewatcher (talk) 15:54, 20 December 2011 (UTC)

I'm good with WLU's version also (with SW's noted grammar fix), though I'd also alphabetize the possible the mechanisms, just to avoid any appearance of weighting. Oh and as for where it should be, I can see an argument for either the first or fourth paragraph. I think fourth is more appropriate, since it's something that a lot of researchers debate, but I have no objection to it staying in the first paragraph. – RobinHood70 ^talk 17:26, 20 December 2011 (UTC)

Also +1 for the wording including the grammar fix. As SW says leave the sentence at the current position it occupies now..StevieNic (talk) 18:01, 20 December 2011 (UTC)

One more proposed tweak to incorporate what I consider important material presently in the lead.

Although classified by the World Health Organization under Diseases of the nervous system,^[2] the etiology of CFS is not understood and may have multiple causes.[5] Mechanisms have been proposed for the development and persistence of symptoms, including psychological, biological,[5] genetic, and infectious components.[35]

Ward20 (talk) 18:58, 20 December 2011 (UTC)

(ec)You all warm the cockles of my heart and I've edited a modified version based on this rough consensus. Note that I've also removed the "The WHO classifies it as..." statement for giving undue emphasis on a debatable nosological point, and have also reworded the reason why some people object to the term "CFS". Hope that is acceptable, if not then you've my blanket permission to revert so we can continue the discussion. Personally I think the etiology and developmental course is a sufficiently prominent issue for all diseases that it merits placement in the first paragraph (I can't imagine sickle cell anemia without a note on it being a single point mutation, or AIDS being due to HIV infection).

Ward, I've actually removed the WHO classification since it seems bizarre to note where a nosological guide places it when there is no actual agreed on etiology. WLU (t) (c) Wikipedia's rules:^simple/_complex 19:05, 20 December 2011 (UTC)

WLU, you very well could be correct about the WHO designation, I have to do some more research to see how prominent it is mentioned in reviews. I am less sure about the name change as it comes up frequently in a variety of journalistic and scholarly publications, I don't believe it is a WP:MEDRS issue. I will think about it. Ward20 (talk) 19:26, 20 December 2011 (UTC)

The edit looks good to me. Thanks for drafting, WLU.

Ward20, you said "I didn't find any article support for JR's proposal to change to the wording, 'there are no generally accepted diagnostic laboratory tests'." I'm not proposing an edit because of/in relation to diagnostic lab tests, just biomarkers. I think that saying there are no biomarkers may give the false impression that there is no physical pathology in ME. I am changing my suggested edit to:

there are no diagnostic laboratory tests or widely accepted biomarkers.

JustinReilly (talk) 22:57, 20 December 2011 (UTC)

I understand Justin, but you need to provide a reliable source for what the additional proposed wording is based on. Ward20 (talk) 23:26, 20 December 2011 (UTC)

Indeed, any reliable, widely-accepted test that distinguished CFS patients from healthy controls would pretty much revolutionize the diagnosis, treatment, investigation and overall conception of CFS; it would be a big deal, and we would pretty much have to include it prominently on the page. Witness, for instance, the brief and furious reaction to the XMRV news when first announced. Witness the second, what happened when nobody could replicate it. That episode is why we insist on MEDRS to indicate a consensus, and don't try to predict or promote what CFS research should be. If there is any test that is accepted as diagnostic, even in a minority of cases - please provide as many sources as you can find to substantiate this point so we can integrate it. May I suggest starting a new section though. WLU (t) (c) Wikipedia's rules:^simple/_complex 02:14, 21 December 2011 (UTC)

(←) How was I "defending" Justin's actions by merely quoting what Wikipedia's rules say on the issue? There was no disruption and at most he gets a slap on the wrist for a first offense. I didn't write the rules, take it up with said self-selected Wikipedians who do. I don't know what version of Google that Sciencewatcher was using, but for me on the 20th December 2011 the #1 result for searching [cfs wikipedia] is Wikipedia's article on CFS, the forum thread in question is result #19. Wading through the different arguments above gives me the impression there is a need to mention something about the full range of proposed and studied factors, but the wording needs to be better than the previous text in question.

Multiple CFS researchers from the biopsychosocial paradigm do form what Wikipedia calls a significant viewpoint. NPOV demands we include significant viewpoints no matter how dubious the methodology and conclusions are. WLU's version is an improvement. JustinReilly proposes changing the sentence about lack of biomarkers or diagnostic tests, but sources for that change seem to be lacking? However, it may be easier to add an additional sentence stating some have been researched and proposed, if a good source can be found? - Tekaphor (TALK) 04:53, 21 December 2011 (UTC)

Good find Ward20, NCI's summary of cancer and stress.[36] A few people above have compared the CFS article to what has been done in other Wikipedia articles, but only listed psychiatric diagnoses where the role of psychological factors probably has a stronger evidence base. So let us compare with the article on multiple sclerosis, a neurodegenerative inflammatory disease of unknown etiology, where the lead section states, "Although much is known about the mechanisms involved in the disease process, the cause remains unknown. Theories include genetics or infections. Different environmental risk factors have also been found."

MS is not viewed as a psychiatric illness or even a "stress-related illness", but surprisingly appears to have more MEDRS evidence for the role of stress than CFS does. Among a dozen or so narrative reviews listed on PubMed mentioning it, there is a 2004 meta-analysis of 14 studies PMID 15033880 and a 2011 systematic review PMID 21335982, in the former the effect of stress on MS is stronger than the effect of CBT on fatigue in CFS but the authors urge caution and temper the interpretation. Yet the word "stress" only appears twice very briefly in the entire MS article at Wikipedia and not at all in the pathophysiology subarticle. I make no comment on the actual role of stress in MS, but it is interesting to note the difference between how psychological factors are handled in coverage of established diseases and psychiatric conditions, compared to undeveloped diagnostic entities such as CFS which are still rife with sloppy speculation and poor standards.

In response this entire talkpage has now become littered with stereotypes about what patients/advocates supposedly like and dislike and why. On the other side of the coin we may also have biopsychosocial advocates with vested interests and reputations staked on CFS as a psychosocial disorder who "simply don't like it" when psychological factors are questioned. I don't see why stress cannot contribute to CFS in principle, but the evidence just isn't as strong as psychosomatic ideologues would have us believe. Should I rant about that everytime someone rants about patient advocates? - Tekaphor (TALK) 04:53, 21 December 2011 (UTC)

I question the removal of the WHO classification. It is what it is, where is the evidence of consensus that the scientific community rejects the WHO classification? Only a small handful of psychs or their sympathizers "simply don't like it" (pun intended) for placing ME/CFS as a disease entity whereas they have vested interests in it being a psychosocial disorder, and because of their actions the UK government had to reiterate that it officially accepts the WHO classification. WLU also appears to confuse unknown etiology for unknown disease mechanisms. Granted that much is not known about the mechanisms of CFS, but to say nothing is known at all would be a major denial of reality.

Anyone who has read the papers on mechanisms such as various indicators of oxidative stress, heat shock proteins, reduced cardiac output, autonomic dysfunction, mild hypocortisolism, abnormal gene expression and receptor activity, reduced VO2 on serial exercise testing, increased neural recruitment on neurocognitive testing, etc etc etc, would have noticed the authors often if not usually observe these all correlate with symptoms or illness severity. Even the biopsychosocial club acknowledge physiological albeit functional changes which help to explain physical symptoms, the idea of a psychogenic enhanced interoception to normal bodily sensations as a primary explanation of reported symptoms isn't taken seriously anymore, some of them now refer to this as the "extreme" psychological position.

I don't have multiple high quality secondary sources with 1000 meaningless citations of unknown context on Google Scholar on hand right now, just food for thought. Which reminds me, certain editors are frequently going on about the number of citations in PubMed or Google Scholar, but none of them have ever specified what the magic threshold is. The Lombardi et al paper of 2009 on XMRV currently has 97 PubMed citations [37] and 327 Google Scholar citations [38]. That must mean the scientific community has accepted XMRV right? LOL. - Tekaphor (TALK) 04:53, 21 December 2011 (UTC)

Just registering my contributon to 'consensus' on the edit. I would have liked to see a clear separation (by sentence, or preferably by paragraph) of the definitive "the aetilogy is unknown" from the speculative -"mechanisms have been proposed" which otherwise gives a rather weasely look to the text, but I accept we are unlikely to find closer agreement at this stage. However my thanks for everyone's patience on this. --In Vitro Infidelium (talk) 12:39, 21 December 2011 (UTC)

All viewpoints are summarized and assessed based on impact of journal and publication (which we handle throug han assessment of the source itself and now many times the specific article has been cited - and how it was used - in secondary sources). We generally don't comment on methodology (though we will note if someone else has) and it's normally not appropriate for us to decide that a particular result is inappropriate because of its methodology. This is because we mostly rely on secondary sources that are supposed to do this for us; we avoid primary sources because they may have faulty methods that result in them being ignored. Tek, the most important thing to note about the tests is that none are accepted as diagnostic; saying "several have been suggested" adds very, very little to the page or the lead unless accompanied the statement that they aren't accepted. I'm not sure why you're including comparisons between cancer, multiple sclerosis and CFS - the former both have explicit diagnostic tests that are biomedical in nature and point to biomedical causes. While MS's etiology and diagnosis strongly point to a biological cause, there is no equivalent for CFS; it is a diagnosis of exclusion (i.e. if you can't figure out why someone meets the criteria, then they have CFS) and is currently based on symptoms rather than signs (i.e. subjective reports rather than objective tests). If this changes, then we note it. Hasn't changed yet. As for people with vested interests - they exist on both sides but only data that is repeatable and widely accepted will solve the problem. The portrayal of XMRV ignores the fact that we also look at how a source is used. This links to the WHO point - why was it placed in that category? Is there any discussion we can cite? It's only important to note that the WHO puts it in a specific category if we can summarize why this is an important point. Otherwise, we're using the classification to imply that CFS has a concrete, recognized cause - when it doesn't. WLU (t) (c) Wikipedia's rules:^simple/_complex 17:57, 21 December 2011 (UTC)

Sleepiness

Latest comment: 12 years ago2 comments2 people in discussion

Just to explain my thinking better, I've left the cited sleepiness bullet for now, as it's cited in a journal (which I think is a reliable one, but correct me if I'm wrong), and it certainly matches several other descriptions I've seen of CFS. I've reverted the image change, however, based on the fact that excessive amounts of sleep are only experienced by some people with CFS, and putting it as the lead image presents a wholly inappropriate image of what the disease is about. In addition, as I stated in my edit summary for the revert, the very source quoted in the sleepiness bullet says that "CFS patients as a group had less total sleep time, lower sleep efficiency, and less rapid eye movement sleep than controls" (emphasis my own) meaning that showing us as a group who are frequently asleep is inaccurate. – RobinHood70 ^talk 04:08, 2 March 2012 (UTC)

I also removed the symptom, as all our other symptoms come from the list on the CDC website, whereas this is just a primary study. --sciencewatcher (talk) 15:37, 2 March 2012 (UTC)

Belgian report

Latest comment: 12 years ago10 comments5 people in discussion

On the 13th of April 74.51.82.222 (talk · contribs) added a discussion of the 2008 report by the "Federaal Kenniscentrum voor de Gezondheidszorg" (Federal Knowledge Centre for Healthcare) of the federal Belgian government. The edit quotes extensively from the sixth chapter of the report, which seems to include a dataset of CFS patients managed at expert centres in Belgium. It is not entirely clear what the edit is meant to add to the current state of the article, and I am particularly concerned about the primary-sourciness of the reference. Despite the fact that the report contains a fairly extensive literature review, the data in question are clearly primary source material. JFW | T@lk 18:00, 15 April 2012 (UTC)

The CBT sub-section currently includes information based on RCT's of CBT. The KCE report is based on a multi-year, nationwide effort established at the behest of an official government body to implement the RCT findings in a real world setting and not just in tightly controlled research settings, which in my opinion means that the Belgian findings would be just as, if not more, relevant than the RCT's. The MEDRS page clearly states that "Statements and information from reputable major medical and scientific bodies may be valuable encyclopedic sources." In my opinion the KCE report would qualify as such and deserves to be cited. — Preceding unsigned comment added by 74.51.82.222 (talk) 19:54, 15 April 2012 (UTC)

I think exceptions to the rules on secondary sources need to remain what they are: exceptional. Shall we wait for other people to weigh in over where before trying to work out some forms of consensus? JFW | T@lk 20:20, 15 April 2012 (UTC)

That sounds good, though I'm not sure that I explained the summary well enough. The 2008 KCE summary was a summary of an earlier report and not the report itself. The full report was published in 2006 by RIZIV/INAMI and was a much more comprehensive undertaking than the summary might give the impression. Therefore I'm not sure about the 2008 KCE summary being primary source. The MEDRS page states that "A primary source in medicine is one in which the authors directly participated in the research or documented their personal experiences. They examined the patients, injected the rats, filled the test tubes, or at least supervised those who did. Many, but not all, papers published in medical journals are primary sources for facts about the research and discoveries made... A secondary source in medicine summarizes one or more primary or secondary sources, usually to provide an overview of the current understanding of a medical topic [or] to make recommendations, or to combine the results of several studies. Examples include literature reviews or systematic reviews found in medical journals, specialist academic or professional books, and medical guidelines or position statements published by major health organizations."

So while the 2006 RIZIV/INAMI report itself could be considered a primary source, since although AFAIK the report's authors were not directly involved in the data collection themselves, it's possible that they technically 'supervised' the research, the 2008 KCE summary of the 2006 report could be considered a secondary source, couldn't it? The 2008 KCE report states that "In 2006, an evaluation report describing the activities and patient outcome of the reference centres was published by the RIZIV/INAMI Akkoordraadh. This report will be summarized in the section 6.2, and will be the main reference for the Belgian data on CFS" and "The main objective of our study is to update the evidence based knowledge on diagnosis and treatment of CFS".

So the 2008 KCE summary is actually a summary of primary sources done for the purpose of 'providing an overview of the current understanding of a medical topic and/or to make recommendations', isn't it, since the KCE report states that "INAMI/RIZIV has to decide on future financing rules for CFS patients care. To support its decision, INAMI/RIZIV asks for an updated evidence based knowledge related for diagnosis, therapy and alternatives in organisational modalities for CFS patients care". This is what the 2008 KCE report was compiled for.

webpage for 2006 RIZIV/INAMI report- http://www.inami.fgov.be/care/nl/revalidatie/general-information/studies/study-sfc-cvs/index.htm

webpage for 2008 KCE report- https://kce.fgov.be/nl/publication/report/chronisch-vermoeidheidssyndroom-diagnose-behandeling-en-zorgorganisatie — Preceding unsigned comment added by 74.51.82.222 (talk) 11:40, 16 April 2012 (UTC)

While this may be a secondary source and is a reliable source, according to WP:MEDRS we mainly rely on reviews published in peer-reviewed journals. Also, this info should be put into the "chronic fatigue treatment" article as a first step rather than the CFS article itself (the treatment section in this article should be a summary of the treatment article). --sciencewatcher (talk) 18:57, 16 April 2012 (UTC)

Both the KCE report and the reviews already cited in the Wiki article refer to both the questionability of whether CBT given outside of research settings is as effective as reported in various RCT's and also to the poor quality of evidence in the RCT's themselves. For this reason the INAMI/RIZIV study was done specifically to systematically test out the interventions described in the RCT's in a real world clinical setting. While Wikipedia may prefer articles published in peer-reviewed journals, the MEDRS page specifically states that "information from reputable major medical and scientific bodies may be valuable encyclopedic sources". Seeing as how KCE is a reputable scientific body, the report is a secondary source and that the information summarized in the report addresses a clearly described deficiency in the research literature, this make it entirely relevant to the article. I think the paragraph should stay in this article as it is fairly clear, concise and to the point, with the treatment page possibly offering a somewhat expanded discussion, similar to the treatment given to the RCT's. The article would still be relying mainly on the reviews, the KCE summary would simply be an addendum which adds information on a currently lacking but entirely relevant area. — Preceding unsigned comment added by 74.51.82.222 (talk) 01:03, 17 April 2012 (UTC)

The material in question places too much WP:WEIGHT to the findings of one set of results. While the applicability of the treatment outside a research setting would be a good discussion to be had, I think it would be much better if it is contextualized in a review first, though discussion in the treatment sub-article, as suggested above, may be another option. Yobol (talk) 01:11, 17 April 2012 (UTC)

(←) I concur with IP:74.51.82.222 that the KCE report is important for the reasons stated above. It should go to the treatment subarticle with a sentence reinserted here into the main article. So what if it is a primary source embedded into a secondary source, the PACE trial has a whole section with several paragraphs devoted to a primary source, and the the KCE report provides information no other source does, a large dataset on the real world application of CBT and GET. I'm readding it back in to both articles, feel free to improve on it. - Tekaphor (TALK) 02:23, 18 April 2012 (UTC)

The important policy here is WP:SCHOLARSHIP. The PACE trial has 45 citations, but I can't figure out how many this Belgian report has. Google scholar reports zero. --sciencewatcher (talk) 14:55, 18 April 2012 (UTC)

Good point, although I must say that the Lancet paper had close to zero citations when the section was first added, it was notable for other reasons. AFAIK, Wikipedia does not prohibit the use of grey literature. There are several different reports of the Belgian evaluation of CBT/GET for CFS but with non-English titles and the URLs may have changed over time. As for having no direct citations, Google Scholar does actually list one journal paper which seems to cite the non-English title of the above 2008 KCE report.[39] I imagine CBT/GET proponents would be reluctant to discuss it in their papers.[40]

However, the Belgian evaluation has been a recurring topic in several papers by Maes and Twisk which do have Google Scholar citations: PMID 19855350 (full text here) has 33 GS citations, PMID 20550693 (full text here) has 17 GS citations, and PMID 19855351 (have not seen full text) has 9 GS citations: The evaluation is also discussed in Tom Kindlon's 2011 IACFS/ME Bulletin paper on harms reporting in CBT/GET, drawing upon 3 different sources.[41] The Belgian evaluation has entered academic discourse and helps to fill a knowledge gap in the research. -- Tekaphor (TALK) 02:49, 21 April 2012 (UTC)

Possibility of adding this website?

Latest comment: 12 years ago3 comments3 people in discussion

cfidsselfhelp.org seems to be a very useful website for patients. I know that websites like this don't normally satisfy WP:EL, but I'm wondering if we could make an exception. It is a non-profit, and seems to have helped a lot of patients recover (which is more than many of the "official" treatments have done) - see their success stories. The CFS wikipedia page is the top google result for CFS patients looking for information, and like many of the editors here my reason for editing here is to help CFS patients get information about the illness. The site is nothing to do with me. --sciencewatcher (talk) 16:16, 18 May 2012 (UTC)

The question with these sorts of sites is: what does this site offer that the article itself wouldn't offer if it became a featured article? While there are some parts of the site I had minor quibbles about, in the end, I see nothing on this site that isn't covered by just about any other CFS management article/site. They all talk about adapting to chronic illness, pacing, removing stressors, learning coping techniques, etc. And I presume that any featured article would do the same. So my first question would be: what makes this one special?

My next major concern here is that we have no independent verification of any assertions of efficacy. Success stories are great, and really inspiring for some people, but how do we know these success stories are completely factual? Even assuming they are, success stories are often the best of the best, and may not present a typical baseline for what to expect from their program.

Finally, this website exists primarily to promote a specific program, and while they may be non-profit, if you look closely, most of their courses are only available after you've taken the US$30 introductory course. From the wording of the course pages, it looks like only one of the free courses has no prerequisites. Paying money into a program with no independently proven success makes me wary and goes against what Wikipedia is about. – RobinHood70 ^talk 20:11, 18 May 2012 (UTC)

Out of the 23 or so success stories on the website, only 2 or 3 sound like actual recoveries (judging from the brief descriptions), most of the rest seem to be improvements due to pacing, adapting to chronic illness, coping better and reducing stressors etc. I certainly wouldn't say it is helping "lots of people recover" based on these success stories. The fact is, most strictly-defined cases never recover once established but some do improve over time. Success stories may provide needed hope for some people, but they can also provide false hope and disappointment and detrimental pressure for others. Worst case scenario is that promoting optimistic messages in order to help some people may actually come at a cost of other patients' mental and physical health, a rather dangerous game. - Tekaphor (TALK) 02:25, 3 June 2012 (UTC)

Only doi notation for references?

Latest comment: 12 years ago2 comments1 person in discussion

This edit just leaves doi information for sources. For the casual reader I guess this is OK, but removing the aux information makes it so the ref link has to be followed to see if the source is primary, secondary, or if the title seems related to the material. This puts an extra burden on editors but I dont see what benefit this change brings to the article. Other thoughts please? Thanks. Ward20 (talk) 22:08, 23 May 2012 (UTC)

Nevermind I see now it's just a temp ref cleanup edit. Ward20 (talk) 22:14, 23 May 2012 (UTC)

'Controversial changes'?

Latest comment: 12 years ago5 comments4 people in discussion

It is unclear why JFW regarded these changes as "controversial".[42] Granted that 82.20.243.22 could have provided references, but should we concerned that a "Dutch doctor living and working in the United Kingdom", with an apparent long-term interest in CFS and Wikipedia, regards the very notion of severity differences between CFS patients as "controversial" (even the CDC states on their website that "the severity of CFS varies from patient to patient [...] symptoms vary from person to person in number, type, and severity" [43]); and also had no idea that a 3-month threshold was placed on CFS for children and adolescents in the same UK NICE 2007 guidelines for CFS/ME which he previously defended? No offense intended, there just seems to be too many uninformed reversions going on. I added back similar but clearly referenced statements as 82.20.243.22 previously added, except the muscle seizure one.[44] - Tekaphor (TALK) 03:51, 18 June 2012 (UTC)

I would be helpful if you avoided generalisations about my personal and professional background. I think your response borders on a personal attack with the use of words like "no idea".

The CDC reference does not mention duration of 3 months in children, yet the anonymous editor made the addition in such a way as to suggest that it did.

As to the addition "it is also important to note that chronic fatigue syndrome (ME) comes in many different forms of severity", it suffers from editorialising ("important to note"), mangles the various terminologies, and is syntactically disastrous ("forms of severity").

Perhaps it was my edit summary that was unclear, but my reversion was not "uninformed". JFW | T@lk 19:47, 18 June 2012 (UTC)

Regarding the '3 months' for children: it is my understanding that the 6 months duration for adults is covered in many different criteria (not just CDC), whereas this is the first time I have ever heard of a 3 month time limit for children. Is it just the NICE guidelines that say that? If so, then perhaps we shouldn't be including it in right at the top of the lede. I see we already include this info in the clinical descriptions sub-article, so perhaps that is sufficient. --sciencewatcher (talk) 21:30, 18 June 2012 (UTC)

I didn't research specifically for this comment, but as I recall, all of the recent definitions that have been written for children in the US and the UK use the 3 month duration. Ward20 (talk) 01:54, 19 June 2012 (UTC)

@ JFW: I could have been more polite regarding the "no idea" comment. From your edit summary it sounded like you never heard of a 3 month threshold and even regarded the very notion of severity differences as controversial: "none of these changes are uncontroversial - where is the 3 month limit from children from?"[45] I can see what you mean about the wording from IP:82.20.243.22 being problematic, but I have grown somewhat sensitive to a common problem with this article where if a proportion of an edit isn't perfect then the entire edit simply gets reverted with vague explanations instead of further improved or adequately explained, I imagine this would be rather discouraging for new users.

@ Sciencewatcher and Ward20: The pediatric definition of ME/CFS by Jason et al. (2006) also has the 3 month threshold, but as it was published in the now defunct Journal of Chronic Fatigue Syndrome which people here will fight tooth and nail to keep out of this article (because it doesn't have a PubMed listing and the paper doesn't have 1000 meaningless citations in Google Scholar), I decided it wasn't worth attempting it. - Tekaphor (TALK) 02:46, 21 June 2012 (UTC)

An editor has proposed that Chronic fatigue syndrome be redirected to Myalgic encephalomyelitis

Latest comment: 12 years ago19 comments9 people in discussion

I offer no opinion on this suggestion at this time. I am opening this discussion because there has already been a back-and-forth attempt to redirect. This should not happen without discussion. Thanks -- Taroaldo (talk) 20:46, 23 June 2012 (UTC)

Oppose. They are for all intents and purposes synonymous. Even opponents of the CFS label make it clear that it is a synonym for ME (doi:10.1111/j.1365-2796.2011.02428.x). JFW | T@lk 22:53, 23 June 2012 (UTC)

Mild Approval. If CFS weren't a pejorative, why would there be such a vociferous movement against the use of the term as the 'primary' term? I myself don't have M.E.; however, my friends who do have M.E. tell me that the term CFS by default belittles the condition and lends credence to the idea that the condition is psychosomatic instead of legitimately clinical in a manner akin to multiple sclerosis (see http://www.hfme.org/methemedicalfacts.htm ... are we gonna call those people a bunch of crazies? I sure wouldn't; it sounds sufficiently reasoned and balanced to me, and it points out that this condition has been known for a much longer time than is commonly thought to be the case).... I don't have M.E. but I definitely know how it feels to have a disability that the disabled person knows is real and knows is chronic (like say for example, oh, I dunno, my own spastic diplegia?) not be taken seriously/not offered serious medical treatment/not offered serious medical tracking...... So I'm very jittery when it starts to seem like a group of Wikipedians wants to maintain an erroneous status quo as compared to taking the plunge and siding with those who would wanna start a new conversation. However, I am not actually accusing those who want to keep it at the CFS heading of stifling progress. I'm just wondering where the so-called consensus to call it primarily "Chronic Fatigue Syndrome" even came from in the first place. Who in the international medical community actually treats the term CFS as more medically accurate than M.E.? Wouldn't it by default be more accurate to describe this condition as M.E. rather than a "fatigue syndrome"? CFS is so simplistic by its very nature. It boils the condition down to "fatigue" when that is not really how the condition is at all. It would be like trying to call multiple sclerosis "shaky syndrome" or cancer "body-wasting hair-falling-out syndrome". CFS is far too narrow a term; at least M.E., as a term, lends itself to a much broader interpretation, and also lends itself to a general sense of, if there is such a thing (and I believe there probably is), 'clinical seriousness'. Kikodawgzzz (talk) 23:43, 23 June 2012 (UTC)
Oppose; major medical bodies like the CDC call it CFS, and having two article is completely untenable as they describe the same condition. Yobol (talk) 23:50, 23 June 2012 (UTC)

The US CDC inherently opposes the idea of M.E. being a real condition, so who are they to be an authority in the first place? We have to go by the organisations and groups that treat this seriously to begin with. If we go by what a major medical body believes purely because it is a major medical body (without asking whether that major medical body has conducted thorough research on the condition, which the CDC hasn't because it doesn't consider M.E. real to begin with), we are, as Wikipedians who want to make an accurate representation, shooting ourselves before we've even got out of the gate. And re the 'two articles describing the same condition' charge: It isn't two articles. It's an attempt to move the existing article from the CFS heading to the M.E. heading. Kikodawgzzz (talk) 23:56, 23 June 2012 (UTC)

"We trust major medical bodies because they are reliable sources for medical claims. We make decisions based on independent, reliable sources, not advocacy groups. Yobol (talk) 00:03, 24 June 2012 (UTC)

CDC is a patently unreliable source regarding ME "CFS" as has been exhaustively documented in Osler's Web and in David Tuller's blogpost. CDC may do very competent work in some other areas, but it is very corrupt and anti-science regarding ME. The 'advocacy groups' only advocate that the anti-science biases of CDC et al. be expunged from ME science. Seriously. I know this is difficult to accept. I would not believe what I just wrote to be the truth if I had not studied the topic exhaustively for many years.

On the other hand, I must recognize that because CDC has changed the name from ME to "CFS" in order to trivialize the disease, that most of the rest of science has blindly followed their lead, much of science in general, like Wikipedia, seeks to reflect the status quo rather than the truth. At least Wikipedia explicitly admits this, I'll give it that. (God I wish I didn't sound like such a nutball!, but I got to call it as I see it) JustinReilly (talk) 05:24, 2 August 2012 (UTC)

The CDC itself would gladly admit that it has done no comprehensive research on this condition. The CDC itself would admit that it doesn't take the condition seriously enough to call it anything more than a fatigue syndrome and to refer it to behavioural therapists as psychosomatic. If the CDC isn't taking it seriously in the first place, if it hasn't done comprehensive research on the condition in the first place whereas the advocacy groups have been and are doing exactly that research, then how on earth can we say that the CDC's summation is reliable and the advocacy groups' summations aren't? That doesn't make any sense at all. Science doesn't accept the proclamations of an established body merely by it being an established body; that established body (in this case the CDC) would have had to have examined the situation-in-question in detail in the first place in order for it to be treated as a worthwhile point of consultation on the topic. That's not only the scientific process, that's also basic root-level logic! Kikodawgzzz (talk) 04:12, 24 June 2012 (UTC)

Oppose: At this time, there's no proof that CFS and ME are two separate conditions, so there definitely shouldn't be two articles. It's certainly possible that they are, and if and when that's proven, we can split at that time. As far as having ME as the primary name with CFS as a redirect, not all medical bodies recognize the term ME. For that matter, not all CFS/ME patients use ME. I've known many who use the two terms interchangeably, or use one term or the other exclusively. I know in some countries, it's seen as part of the battle to have CFS/ME more legitimately recognized, but in others, it's seen as a non-issue or at least a milder one compared to the actual research being done (or not done, as the case may be). So at this point, I see no compelling reason to make the switch. – RobinHood70 ^talk 01:31, 24 June 2012 (UTC)

The question being talked about here seems to have gotten twisted. Nobody actually tried to create two separate articles. The question here is whether the condition described under the heading CFS should be lifted-and-transferred to the heading M.E., since those with M.E. and emerging clinicians taking M.E. more seriously are increasingly arguing that CFS is not only an inaccurate term for M.E. but is also a belittling and inherently insulting one, built purposefully to sustain an image that this condition is 'all in one's head' (which by the way is what the medical community used to think about a lot of things that people would thereafter very quickly die from). Kikodawgzzz (talk) 04:12, 24 June 2012 (UTC)

It appeared that there were to be two separate articles at one point, so I thought I'd cover all the bases. My problem with ME (and I say this as someone who has what I normally refer to as CFS) is that it implies an etiology that isn't known to be true in all or even the vast majority of cases. That's the problem that much of the medical community has with it as well. Many people believe that CFS is a wastebasket diagnosis covering several similar conditions, both physical and psychological. One of the problems facing the CFS/ME community is separating them all out from one another. Those like me who have neurological symptoms seem to have ME in the limited research that's been done, including the etiology the name implies, but we don't have extensive enough research to say with certainty that all those exhibiting neurological conditions clearly have ME. Until we do know that with some degree of certainty, a name change is not only inappropriate, it could conceivably be harmful to those who have CFS from other possible causes who may or may not be exhibiting neurological conditions. Regardless of that, however, the simple fact is that while many groups are increasingly using the term ME, it's not an established universal name, nor is it even the most common one in my experience. Once it is, or a clear split of conditions has been identified, then we can entertain a move or split on Wikipedia as well. Wikipedia isn't the place for advocating change. – RobinHood70 ^talk 16:32, 24 June 2012 (UTC)

It is my understanding that there is just as much, or more of a basis for calling ME "ME" as for calling MS "MS." Komaroff's 1992 landmark paper showed 85% of the tahoe cohort as having detectable multiple punctate lesions to the subcortical white matter of the brain on MRI. At the time I believe only 80% of MS patients had detectable plaques on MRI. This doesn't prove causation in either disease, but yet we call MS "MS" rather than what the medical profession called it a few decades ago- "hysterical paralysis." Every credible researcher now acknowledges that ME in the sense at least of encephalopathy (if not encephalomyelitis) is a proper and accurate term. JustinReilly (talk) 05:24, 2 August 2012 (UTC)

I just Googled it myself and while my information was a little out of date (last I heard, a small minority definitely had gray/white-matter abnormalities, but not all), I easily found several studies indicating both significant numbers of patients with grey/white-matter changes, as well as others indicating no significant amount of patients with grey/white-matter changes. Thus, I believe my original statement was at least in the right ballpark in that we just don't know that that's part of the etiology at this point. – RobinHood70 ^talk 06:44, 2 August 2012 (UTC)

Neutral for now In general, I agree with Kikodawgzzz that we should be bold and not rely on patently unreliable sources (such as CDC and NIH) and we should rely on those researcher groups (like IACFSME) and patient groups who have displayed actual demonstrated reliable authority. On the other hand, Wikipedia's function as an encyclopedia would counsel that "CFS" not be redirected to ME. While NIH (another demonstrably incredible source on ME, but one that is considered credible by Wikipedia), the Mt. Sinai ME/CFS Research Center and the only ME researcher association, the IACFSME, all call the disease "ME/CFS", and probably the majority of associations use either ME or ME/CFS in their names, the vast majority of papers on the disease still refer to "CFS." (at some point, if this trend continues, it may be proper to change the heading to "ME/CFS")JustinReilly (talk) 05:24, 2 August 2012 (UTC)
Oppose (Although the actual request seems to be to move Chronic fatigue syndrome to Myalgic encephalomyelitis.) CFS is recognized by medical authorities, and may be an organic syndrome; ME is not recognized by medical authorities. — Arthur Rubin (talk) 07:36, 24 June 2012 (UTC)

Comment: Kikodawgzzz, I agree with many of your criticisms, but Wikipedia is not science or the truth, it is an encyclopedia designed to appeal to supposed authorities and reflect the status quo, regardless whether these are incompetent and negligent or not. Wikipedians have previously established multiple times that overall, CFS is the most commonly used name by authorities and published literature which generally view ME as a synonym. In the current climate, CFS will never ever be redirected to ME at Wikipedia. People have even been banned over it, so you might as well spend your effort on more fruitful attempts such as expanding the ME subsection. Just a warning though, I once tried to add the 2011 international consensus criteria for ME but one editor reverted me because it was new and didn't reflect the status quo while another editor bizarrely called it "off topic" for a CFS article despite believing that ME and CFS are synonymous. Yet the London ME criteria is mentioned with the citation just being a discussion on the ME Association website, so if you stay around you will have to get used to this sort of double-standard.

The irony is that it is possible in at least 3 definitions to be diagnosed with ME "slash CFS" without having chronic fatigue, as the emphasis is on other neurological, immune and autonomic symptoms and post-exertional symptomatology (which is often dumbed down to "fatiguability"). WHO adopted a ME classification in 1969, and although the name CFS didn't help, psychobabbling the condition(s) began long before CFS was coined (eg McEvedy & Beard misattributed it to hysteria in 1970) and involves many other factors besides the name. Komaroff was involved in the 1988 CDC case definition and openly regretted the coining of CFS. The CDC seems relatively quiet on ME in general, when I searched last year there was no definitive statements that ME = CFS, and there was even something in the training material about how the terms CFS and ME have been wrongly used interchangeably.

Another problem with redirecting CFS to ME is that the vast majority of the article is based on research using the CFS criteria not ME criteria. Many people would find it absurd to talk about the prevalence and characteristics of ME using broad CFS criteria which doesn't require hallmarks of ME. Most CBT/GET research mentioned in the article doesn't even use CDC criteria but either Oxford or other ad hoc equivalents. Even the notorious PACE trial which supposedly included ME patients, first required fatigue to be the only main symptom (Oxford criteria), conducted medical assessments which may exclude clinical features that were allowed in classic ME, then to subgroup the remaining patients used a modified version of the London ME criteria which even the original authors of it eg Goudsmit and Shepherd have publicly disavowed. JWF correctly points out that in the ME-ICC, Carruthers et al admit CFS is used as a synonym for ME. However, the authors also conclude that ME patients meeting their new criteria should be removed from CFS classification by Reeves criteria or NICE criteria. In how many other medical topics do a team of 26 international researchers heavily criticism the name and also explicitly reject alternative criteria like that and then for such a strong position to be denied entry into Wikipedia articles? - Tekaphor (TALK) 01:45, 25 June 2012 (UTC)

Tekaphor, I'm not sure why you seem so keen on reopening the discussion on the ME-ICC criteria. 26 "international researchers" producing a piece of non-science without any attempt of applying modern methodology, such as ROC modelling, reproducibility, etc. The criteria are absolute rubbish because they are completely unfalsifiable and subjective, and as such someone can most definitely meet both the ME-ICC "criteria" and the more widely accepted criteria for CFS, and thus be said to have both conditions. The "international researchers" have done their own credibility and their patients a disservice. JFW | T@lk 02:06, 2 July 2012 (UTC)

I'm not going to stop discussing the ME-ICC (which now has 21 citations on Google Scholar for those who keep going on about GS) just because you personally think it is "absolute rubbish" and "off topic". Although I agree more could have been done on the ME-ICC to make it valid for research and clinical use, it is no worse that other definitions in that regard. The Canadian and ME-ICC definitions are the only ones which partly base their symptom categories on empirical data, citing a study using multivariate analyses on data from over 2000 patients with "chronic fatigue". Note that the CDC's attempt at applying guidance from empirical data to the quantification of symptoms was a complete disaster, but I've read that they are having a more comprehensive attempt at a new criteria so I look forward to see what they come up with this time.

So what if a patient can meet ME-ICC criteria and also another purposely-broad "widely accepted" CFS criteria? The purpose of the ME-ICC was to decrease heterogeneity of the patient cohort, rather than the current wastebasket where heterogeneity is paradoxically accepted and denied. The authors of the ME-ICC believe that patients meeting their criteria do not generally have the same illness characteristics of those meeting Reeves et al (CDC 2005) criteria or NICE (2007) criteria but not ME-ICC. Some patients meeting ME-ICC will not meet other CFS criteria, so we have the situation where patients can meet criteria for [supposedly another name for CFS] without chronic fatigue.

I'm not a strong supporter of the ME-ICC or the name ME, I use the term ME/CFS as a rough synonym but acknowledge a discrepancy between earlier epidemics of ME vs the "functional somatic syndrome" conceptualization of CF. I think the clinical judgement of an "international [team of 26] researchers" published in a peer-reviewed journal holds enough weight for a brief mention in a Wikipedia article regardless whether it is correct or not. If an equivalent group heavily leaning towards the cognitive behavioral model came out with a new definition which made strong statements on the issue of ME vs CFS, it can be virtually guaranteed that the statement and the criteria would be featured in Wikipedia articles, regardless of arbitrary thresholds of Google Scholar citations (I will donate at least $25 to Wikipedia if I am proven wrong in such an event). - Tekaphor (TALK) 11:24, 3 July 2012 (UTC)

Oppose WP isn't an advocacy group nor the tool of an advocacy group. As Tekaphor points out above, WP "reflects the status quo" as laid out in verifiable reliable sources. Currently, it seems that CFS is still the term most used in the sources.--William Thweatt ^Talk^Contribs 02:37, 25 June 2012 (UTC)

CFS diagnosis

Latest comment: 12 years ago2 comments2 people in discussion

I have read your information on CFS and there seems to be no information about red blood cells. I sufferd with ME as i call it for about six years. I joined a ME group in my area I went to a meeting and there was a talk given by a hematologist from New Zealand. In New Zealand they have the highest record of CFS/ME per head of population on this planet. The doctor look at the blood for answer to the illness in his research he discoverd that red blood cells are a certaion shape in the human body for a reason Cup shape as descrieb in your article. He has taken blood from poeple with out CFS/ME and compared them with poeple suffing from CFS/ME and found that the red blood cell are a diffrent shape in poeple that have CFS/ME. Red blood cells have to be a certain shape so that they can be absorb into the capilries and a carrier of oxygen i beleave that Iron is present in in the cell and has several vital functions. Examples include as a carrier of oxygen to the tissues from the lungs in the form of hemoglobin, as a transport medium for electrons within the cells in the form of cytochromes, and as an integral part of enzyme reactions in various tissues. Reduce all that and you have the symptoms of CFS/ME. He also notice that poeple with CFS/ME red bood cells are group together in strings not seperated like in poeple that do not suffer from CFS/ME. Taking all that information I came across some more information just by chance from a diffrent source. I happened to be looking at some information about Magnets not any magnets but magnets with a CRP (Central Reverse Polarity)technology. Magnotherapy has been around for along time and was used dueing the war to make fuel go further. I relised that this would work for CFS/ME symptoms. I tried it and found that it work. In the information I came across were two pictures of red blood cells befor and after wearing these magnectic bracelets the red blood cells were the correct shape and each cell was seperated. Well it work for me and I went on selling this product my self. — Preceding unsigned comment added by 90.213.80.93 (talk) 15:21, 10 July 2012 (UTC)

The purpose of this talk page is to discuss ways of improving the article, and any improvements need to be based on reputable published sources -- so none of that is actually helpful, I'm afraid. Looie496 (talk) 15:36, 10 July 2012 (UTC)

Signs and symptoms

Latest comment: 12 years ago2 comments2 people in discussion

It seems like the diagnosis section should be included under this section and possibly the section renamed symptoms and diagnosis or vice versa. Ward20 (talk) 23:38, 22 July 2012 (UTC)

That would be against WP:MEDMOS, which separates "signs and symptoms" and "diagnosis". My view is that clinical scoring systems and diagnostic criteria belong under "diagnosis" and not "signs and symptoms" as we are doing currently. JFW | T@lk 19:52, 23 July 2012 (UTC)

Auto-archiving

Latest comment: 12 years ago1 comment1 person in discussion

I've reverted our auto-archive settings back to what they were originally. As Arthur Rubin implied in his recent edit summary, the current settings leave long-finished discussions on the page, and encourage really old topics to be resurrected, which I really don't think is a good idea on a controversial article. This has undergone a few changes over the last bit, but just in case anybody wants the entire history:

The changes to the archiving process were originally added without explanation by a completely uninvolved user.
I reverted the change a couple of months later.
This was changed, yet again by an uninvolved user, along with a bunch of other maintenance edits in February of this year.
This was tweaked, yet again by an uninvolved user, in May.

If anyone else has any thoughts on this matter, I'm by no means set on any particular archiving interval. I just thought that since every last change away from our original settings has been done by an outsider, that they may not be sensitive to what works best on a controversial article. I think it's better if we make our own decisions about what's appropriate for this page. – RobinHood70 ^talk 20:14, 2 August 2012 (UTC)

New PACE trial results on cost-effectiveness and service usage

Latest comment: 12 years ago5 comments2 people in discussion

Based on small self-reported improvements (QALY derived from the EQ-5D questionnaire, fatigue, physical function), both CBT and GET passed the UK's commonly used ICER threshold of £30K from a healthcare perspective, were "dominant" from a societal perspective, and from both perspectives had a higher "probability" of being the most cost-effective when compared to APT and SMC. However, quite gloomy results for everything else important in the paper, such as total service usage and associated costs, which did not change much over the course of the trial and showed no significant difference between groups except for CBT vs APT. Also, the dream is over for those expecting CBT/GET would help ME/CFS patients increase employment or prevent them from receiving welfare benefits or insurance payments, etc. http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0040808 - Tekaphor (TALK) 03:30, 10 August 2012 (UTC)

Thanks, but this is a primary source. JFW | T@lk 16:45, 10 August 2012 (UTC)

A significant proportion of the CFS treatment sub-article is already devoted to a primary source on the 1st set of PACE results. [46] The above mentioned paper is another set of PACE results. [47] The PACE trial is one of or the most controversial study of CFS in history (notoriety already indicated in the sub-article), and a secondary source gives the trial itself (based on the 1st paper) the highest quality score out of 12 studies on CBT or GET [48], so the notability of PACE is unquestionable for the purposes of Wikipedia. Surely it is worth mentioning that CBT and GET fail to help CFS patients improve employment status or prevent them from receiving welfare benefits or insurance payments? There is simply no better source for this outcome, and current secondary sources on this issue, such as Ross et al (2004) and Cochrane (2008), are too old. - Tekaphor (TALK) 03:13, 5 September 2012 (UTC)

If there is no secondary source we cannot include it. It is that simple. There is no deadline, and we're WP:NOTNEWS. I suspect that a secondary source will become available in due course.

My bigger question is whether you would have advocated a primary source if it had supported the view that GET & CBT were effective. JFW | T@lk 06:43, 6 September 2012 (UTC)

When did Wikipedia's preference for secondary sources evolve to the point of automatically and definitely excluding all information in primary sources not specifically covered by secondary sources? I do not have a phobia for primary sources, particularly when reporting on large studies. I would not have a significant problem with appropriate use of a primary source on the largest and best conducted trial on CBT/GET to date if it provided important new positive information about supposed effectiveness. However, there is no need to advocate for this, because there are numerous secondary reviews on the issue already, some are more recent but still do not provide much new information above what is already known: a minority of patients report small to moderate improvements in some domains. Whereas the coverage of employment/welfare issues is currently extremely sparse, and the PACE trial offers the best evidence to date on these issues, so why not a brief mention? Wikipedia may have no deadline, but that is not the same as purposely excluding important and readily verifiable information just for the sake of waiting.

Regarding the "bigger question" which is ironically the smallest question as it deals with speculative allusions about POV and motives rather than the application of WP:RULES on actual Wikipedia content; it is not my job to "advocate" equally for every aspect of ME/CFS, but there are gaps in Wikipedia articles on CFS which I would like to see covered. If someone else wants to work on different aspects, that is up to them, as long as it stays within the rules. I've already openly admitted numerous times that I am skeptical about CBT/GET. So what? I'm also somewhat of an inclusionist with emphasis on appropriate context of the included content. The counter-question would be, would you stonewall a primary source on the PACE results if they showed that CBT/GET helped many patients get off welfare and/or back into employment? It is not my fault, or the result of patient advocacy, that CBT/GET were found to be useless for these outcomes among others. This is an important finding considering the hyperbolic interpretations about the curative properties of CBT/GET. - Tekaphor (TALK) 02:38, 7 September 2012 (UTC)

CFS patients neglected by the NHS

Latest comment: 12 years ago7 comments4 people in discussion

http://www.independent.ie/breaking-news/national-news/cfs-patients-neglected-by-nhs-3219168.html

"These figures are a disgraceful indictment of institutionalised discrimination and neglect. Health services in all of the four home nations are still not even beginning to address the needs of this vulnerable patient group properly. Rhetoric and prevarication from ministers is simply not good enough. We need action now to put this right once and for all."

_Tekaphor (TALK) 02:30, 5 September 2012 (UTC)

Seems a case of WP:NOTNEWS. Is this survey of 250,000 people going to be published in a peer-reviewed authoritative publication? Such a large sample would be pretty publishable. JFW | T@lk 06:43, 6 September 2012 (UTC)

Surely peer review only refers to MEDRS content? This isn't MEDRS, and neither does it fall under WP:NOTNEWSPAPER. -- TerryE (talk) 09:36, 6 September 2012 (UTC)

You missed my point. This is #2 under "WP:NOTNEWS" - it might be newsworthy for news outlets, but not for an encyclopedia. However, a 250,000 patient strong sample is perhaps suitable for formal scientific publication with peer review, and might in turn become a source for systematic reviews and meta-analyses. Now that is stuff that we could cite. JFW | T@lk 19:00, 6 September 2012 (UTC)

Just a point of clarification here: it's not a survey of 250,000 people, it's a survey of the services available to those people.

As far as MEDRS goes, however, like the other two, I don't see it as applying. This is a survey that discusses the quality of the health services available to people with CFS (e.g., not offering home visits), not a specific biomedical topic such as a treatment or approach. Even if it were, MEDRS gives provisions for using primary sources with "care", not "never ever use them at all". Now, having said that, this is one survey about a single area of the world, and it should be presented as such. It should also be made clear that some of the statements, such as the one quoted above, are reactions to the survey, and not the conclusions of the survey itself (or at least that's my interpretation, it's hard to say when it's attributed to the CEO of the company that put out the survey, rather than the survey itself). – RobinHood70 ^talk 21:33, 6 September 2012 (UTC)

Here is the original report from Action for ME: [49]. The wording in the report is just as harsh as in the news coverage, the report itself is even titled "Ignorance, injustice and neglect". I agree that the MEDRS guideline does not apply to non-medical issues. The fact is, the UK's largest patient organization for ME/CFS have conducted a large survey using NHS data, which strongly suggests that ME/CFS patients are being neglected by the NHS. This seems highly relevant to the Wikipedia CFS article section on society and culture. [50] If this was a report from the UK's largest patient organization for MS or PD, would it need to be published in a peer-reviewed "authoritative" publication before people took notice? But of course, ME/CFS patients are just "heart-sink patients" (common attitude of physicians) and "the bastards that don't want to get better" (common attitude of nurses in the FINE trial), so such reports are seen as more of an annoyance than a reason to take action. So I can understand how the issue might strike a nerve in people who work for the NHS. ;-) _Tekaphor (TALK) 01:54, 7 September 2012 (UTC)

This issue is also important for the subject of treatment. - Tekaphor (TALK) 02:14, 7 September 2012 (UTC)

Alter et al - XMRV and pMLV not associated with ME/CFS

Latest comment: 12 years ago7 comments5 people in discussion

http://mbio.asm.org/content/3/5/e00266-12.full.pdf - There is only news article coverage and no peer-reviewed secondary reviews on the issue published in medical journals, unless you count Science NOW as such [51], so according to certain Wikipedians it may as well not exist yet for the purposes of Wikipedia? ;-) _Tekaphor (TALK) 05:14, 19 September 2012 (UTC)

ABSTRACT : The disabling disorder known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) has been linked in two independent studies to infection with xenotropic murine leukemia virus-related virus (XMRV) and polytropic murine leukemia virus (pMLV). Although the associations were not confirmed in subsequent studies by other investigators, patients continue to question the consensus of the scientific community in rejecting the validity of the association. Here we report blinded analysis of peripheral blood from a rigorously characterized, geographically diverse population of 147 patients with CFS/ME and 146 healthy subjects by the investigators describing the original association. This analysis reveals no evidence of either XMRV or pMLV infection.

IMPORTANCE : Chronic fatigue syndrome/myalgic encephalomyelitis has an estimated prevalence of 42/10,000 in the United States, with annual direct medical costs of $7 billion. Here, the original investigators who found XMRV and pMLV (polytropic murine leukemia virus) in blood of subjects with this disorder report that this association is not confirmed in a blinded analysis of samples from rigorously characterized subjects. The increasing frequency with which molecular methods are used for pathogen discovery poses new challenges to public health and support of science. It is imperative that strategies be developed to rapidly and coherently address discoveries so that they can be carried forward for translation to clinical medicine or abandoned to focus resource investment more productively. Our study provides a paradigm for pathogen dediscovery that may be helpful to others working in this field.

_Tekaphor (TALK) 05:17, 19 September 2012 (UTC)

Just very strange that all those other researchers did not confirm XMRV in their cohorts, and that many believe it was a laboratory contaminant. I think this reaffirms the importance of using secondary sources, which will hopefully one day make sense of this quagmire.

doi:10.1128/mBio.00266-12 is the DOI for the above paper, by the way. I think it's pretty brave of the editors of mBio to publish this, and will certainly generate discussion (and further attempts elsewhere to replicate the findings, one hopes). JFW | T@lk 08:24, 19 September 2012 (UTC)

It does not seem that strange to me if these particular retroviruses are absent. I accept the results as valid, and good news (no one wants a retrovirus), although I would be interested in further retrovirology developments. The quagmire is effectively over and people are moving on already, so I am not sure if you realize the gravity and supposed definiteness of this study, the results of which have sounded a loud death-knell for the role of XMRV and pMLV in ME/CFS, which was already assumed dead last year. This is probably the most authoritative study on the subject we are going to see, and I doubt there is going to be much funding for further exploration of this issue. Prostate cancer studies are also being retracted now, ending an era of hypocrisy. Unlike other areas of ME/CFS, we will not have to wait long for a secondary review paper, as there will be plenty of authors falling over themselves to write about the final nail in this coffin, just as there were a few Wikipedians itching to prepare for a restructuring of the XMRV article after first hearing the rumours about contamination emerging from CROI 2011. Tekaphor (TALK) 01:30, 20 September 2012 (UTC)

I'm not entirely clear on the importance of announcing the death of an idea whose funeral was already held a year ago. Looie496 (talk) 02:31, 20 September 2012 (UTC)

Ah, it is because we must have respect for the exhumed body of the dead! It is a cultural and religious thing. :-p--MrADHD | T@1k? 05:38, 20 September 2012 (UTC)

(out)For the purposes of this article and following what was decided a year ago in the light of the BWG study (XMRV mention retained in History section only), there surely is no problem merely adding to the History section (as with the BWG) a simple sentence referring to the fact of the study. It is perhaps worth waiting to see if there is Nature or Science mag coverage in their respective forthcomming issues, however (as per Looie496's comment) the Lipkin study may be greeted with a general shrug and 'meh' without any major comment from a reliable secondary source. As no conclusions or interpretations are required, if no secondary source appears in the next 7 days - then a simple sentence with the Lipkin study itself as reference should suffice. --In Vitro Infidelium (talk) 17:07, 20 September 2012 (UTC)

Diagnosis section

Latest comment: 12 years ago2 comments2 people in discussion

This section is very empty and needs expanding. I am going to see what I come up with and make a stab at expanding it. I know this condition is very controversial or has strong feelings attached to it with some people and my knowledge is weak on this condition, so I may make some mistake on how things should be weighted/worded. Please feel free to expand on what I am writing or correct/fix anything I write.--MrADHD | T@1k? 05:38, 20 September 2012 (UTC)

You've already made an addition, which is great. I wouldn't want to put too much in a section after we already say that there is no positive test that conclusively proves or rules out CFS/ME. JFW | T@lk 10:29, 20 September 2012 (UTC)

Dietary salt restriction

Latest comment: 12 years ago4 comments4 people in discussion

Does anybody have access to this article? If so, what does it say? Abductive (reasoning) 05:48, 20 September 2012 (UTC)

It is in Medical Hypotheses, meaning that it is not suitable as a source here. JFW | T@lk 10:29, 20 September 2012 (UTC)

Per WP:MEDRS. --Anthonyhcole (talk) 10:48, 20 September 2012 (UTC)

And it's not even an article in Medical Hypotheses, merely correspondence. Looie496 (talk) 19:22, 20 September 2012 (UTC)

CFS page, Simon Wessely debate, ME/CFS deaths, as recorded by a coroner as the primary cause

Latest comment: 11 years ago6 comments4 people in discussion

I'm new here but was asked to enter the debate by another established Wikipedia user in the CFS topic area. He felt, and I feel, that I might be able to add some depth and understanding to the CFS page and also the Simon Wessely topic. Primarily he felt that I might be able to demonstrate, with references, the patient perspective on the SW debate. Also, having read the CFS page, we have a section on mortality. Nowhere in that section is mention of the significant numbers of people in the UK and abroad who have died and an inquest finding of CFS/ME as the primary cause of death. Of course, in the UK Sophia Mirza was the first and most notable, but there have been a number of other deaths since that have recorded that verdict here and elsewhere in the world. I find it incredible that, in a mortality section, there is no mention of these cases. I know that the psychological/biomedical debate is a hot potato in the UK, but strangely not in the US, Australia etc, but surely recorded patient deaths must be referenced?

I'm not here to kick up a fuss, to mess about with any copy I don't agree with, to abuse or threaten anyone. I'm happy to discuss any copy I may wish to add on here first. I know that you've had terrible problems in the past with certain extreme elements, but I can promise you I'm neither involved with or endorse any such behaviour. I was asked to join the debate because it was felt that I can introduce relevant information in areas that the current listings are lacking. I'm not up to speed with all the rules here yet, but I'm doing my best to understand. I'm a wiki virgin so be gentle! Anyway, I would be grateful for the chance to contribute and would try to adhere to any applicable guidelines.

User: Richio76 User Talk: Richio76

Note to others: I encouraged Ricio76 to come here after an exchange on Twitter following Wessely's award by Sense About Science. He was a moderate voice among the usual strident ones with whicxh we are long familiar. I am not current enough with this article to help him meaningfully myself but it does seem to me that this fatality is worth discussing, partly because it will be of interest to patients and families of those with CFS and partly because it highlights precisely the difficulty of where to draw the line between CFS and the effects it has on the overall physical and mental wellbeing of sufferers; I think it is an interesting story that can probably be told in a neutral way, and I think this is the right article for it to go in. I culd be wrong, but that's what I thought after reading some patient blogs on the subject. I think we have an opportunity to get some worthwhile input on the Wessely controversy as well, our article on him still really doesn't make the case for quite why is is so vilified. Peopel more current than I am here, please do help him with this if you can. Guy (Help!) 20:06, 14 November 2012 (UTC)

(edit conflict) First off, a purely technical matter: to sign your posts, just add ~~~~ at the end of them. As far as edits to the page go, Wikipedia takes the view of "it's not what I believe, it's what I can prove". In that light, there are different options with controversial subjects like CFS (and it is quite controversial outside the UK as well, just a little less touchy of a subject than in the UK, I think, probably because we don't have to deal with the Simon Wessely's of the world quite as much).

The first one, and this goes for all articles on Wikipedia, is bold, revert, discuss. That's basically what you've done here: you "boldly" added content, it was reverted, so now you've taken it to the discussion page. On controversial topics, if you're going to be "bold" in adding new information, it's highly recommended that you cite review articles from peer-reviewed journals rather than one-off cases. You can read more about that at Identifying reliable sources (medicine) (MEDRS, for short).
The second option, one that's encouraged on extremely hot-button topics like this one, is to just add your information to the talk page to begin with and skip over the "bold, revert" steps under the assumption that someone who has different views will probably just revert your "bold" addition anyway. In this case, it gives everyone the chance to state why the information is or is not appropriate to the article, and why any cited material is or is not acceptable under MEDRS. Hopefully, a consensus will emerge as to what should be done.

In the specific case of what you added, the first citation was to an article that said "here's a one-off case", and the second was to what's considered to be an unreliable source by Wikipedia standards, since INVEST in ME isn't a peer-reviewed journal. If you have sources, either in newspapers or journals, that talk about the numerous deaths now being attributed to CFS/ME, that would make your additions much more likely to stay in place. – RobinHood70 ^talk 20:23, 14 November 2012 (UTC)

We do have an article on Sophia Mirza which discusses this in detail. The issue with adding it here is that the references would fail WP:MEDRS. Generally if you look into these deaths you'll see that none of them likely actually died of CFS. --sciencewatcher (talk) 22:51, 14 November 2012 (UTC)

But how do you define what dying of CFS actually entails? The coroner's verdicts are that deterioration of the body as a result of CFS led to death. People don't die specifically of many illnesses, but as a result of the toll that condition takes on their bodies. We don't consider them to have died of the ultimate organ failure but of the primary illness. For example, Victoria Webster, 18 died this year, and ME/CFS was recorded as primary condition that led to her death. Obviously she actually died of heart failure. We could class that as the event that will finish us all off. If the decision of a coroner after autopsy isn't good enough then what is? Alison Hunter is the standout example in Australia. The description of her doctor as he saw her die slowly over a period of months is harrowing, and no explanation could be found for the visible and appalling bodily breakdown she endured. I understand the need for rigour with regards to referencing, but it seems slightly perverse that in the mortality section we have small scale trials mentioned which spoke in broad, rather unscientific terms about incidences of death of ME patients from other conditions, but ignore cases where an inquest has, hearing all of the medical evidence, concluded that ME/CFS led to that person's death. Anyway, that's my two penneths worth. I'm new here and still getting used to the rules and etiquette, but from an outsiders perspective Wikipedia is or should be about presenting all of the accumulated information on a topic and allowing the reader to draw their own conclusions. Just my humble opinion. ~~~~ User:Richio76 User talk:Richio76 23:47, 14 November 2012 (UTC)

Hi guys.

I'm happy to set aside my suggestions re ME deaths for now and would like to look at the Simon Wessely section which doesn't really seem to explain why the large majority of patients have such negative attitudes towards him. I think I might be able to she'd light on that by referencing him in his own literature, studies and conference addresses. From around about 1988 he can be repeatedly quotes as denying the existence of ME, of suggesting that patients are looking to gain attention by playing the "sick role". He also advises that the prognosis for ME patients who receive state benefits is poor because they have no incentive to recover and also that any doctor who either makes a diagnosis of ME or accepts such a diagnosis is complicit in the illness fraud and failing in their duties to the patient. Sufferers believe that much of the hostility and disbelief they experienced and experience from medical professionals is as a result of his adoption of ME as a behavioural condition, which he likened to hysteria. This rhetoric is fairly consistent over the last 25 years, although he is now more careful with his words, due to the growing weight of scientific evidence that it is a biological condition. There is also, of course, the attempt to unilaterally change the WHO coding from a neurological to a psychiatric condition, with 30,000 text books being sold to practitioners before the WHO forced a correction. Finally, I'd like to touch on the role that he has played in creating a system that saw many ME patients sectioned and children removed from their families into mental health units. Of course, Sophia Mirza is the most famous example of the former, whilst Ean Procter was the first of many children to be abused in that way. Wessely denied any involvement in the latter despite panorama uncovering the patient notes in which he had instigated the proceedings. Ean recalled being thrown in a swimming pool, being left in his own urine, taken on a roller coaster and being thrown out a wheelchair during his 5 months in the unit.

I suppose I have two questions for you all regarding the above. It's obviously incredibly emotive stuff and is therefore difficult to present in a manner that is neutral and purely factual. I'd like to try to do that if I may, in as concise a manner as possible, purely referencing recorded facts. Also, what is the protocol for referencing text book, research materials etc which aren't available online? I'd happily receive any advice about how to approach the above from the more experienced of you and could work through appropriate wording on here, in consultation with you. Richio76 (talk) 15:30, 15 November 2012 (UTC)

For signing, you were thinking too technically and you just copied my code. You were supposed to just read the formatted text, not the wikitext. So in other words, just type in four tildes as the very last thing in your message, and when you save it, it'll convert to a signature with the time automatically. Use the "Show preview" button and if you got it right, it should display your name and the time you clicked "Show preview" at. – RobinHood70 ^talk 20:59, 15 November 2012 (UTC)

Query on blood donation

Latest comment: 11 years ago2 comments2 people in discussion

Is there any change in the white platelet count or (stress) hormone levels in patients? Or any major difference in the blood composition between patient and healthy individual? Otherwise, why discourage patients from donating blood?

Also, this may be a quicker way to identify a Chronic fatigue syndrome patient 57.73.135.225 (talk) 10:16, 26 November 2012 (UTC)

No measurable differences are fully diagnostic for CFS. The reason blood donations are currently discouraged is the possibility of an as yet undescribed viral infection (although XMRV was disproven). JFW | T@lk 21:10, 26 November 2012 (UTC)

Correspondence between Wessely/White and the Countess of Mar

Latest comment: 11 years ago19 comments4 people in discussion

The Countess of Mar's latest open letter (25th January 2013) to Peter White and Simon Wessely contains some very pertinent criticisms, pointing out a number of logical flaws, inconsistencies, contradictions and deviations from the normal scientific process in the work of White and Wessely. These flaws and criticisms need to be included in this article, in order that the reader is made aware that the published results of the PACE, CBT and GET trials should be viewed with considerable skepticism, given that they are over-exaggerated. (The first letter in this exchange can be viewed here.) Drgao (talk) 05:04, 27 January 2013 (UTC)

It is a letter not published in any way other than on blogs. The letter itself is a litany. I don't think any of the points should be quoted in this article. JFW | T@lk 23:01, 27 January 2013 (UTC)

Agreed, the sources do not appear to be appropriate for use here. Yobol (talk) 23:19, 27 January 2013 (UTC)

I presume Lady Mar's letter will be published in a newspaper or journal in due course. In any case, you don't have to reference this letter directly, you can just reference some of the published studies it quotes. In particular, the points made in this letter about the controversies surrounding the actual the efficacy of CBT and GET are very pertinent. I suggest the Dutch report mentioned in the letter needs to be included in the main CFS article, otherwise this Wikipedia CFS article will be as misleading as the CBT and GET trial results are themselves. This Dutch report is as follows:

Quoting Lady Mar's letter of 25 Jan 2013: A Dutch report in February 2008 came to unambiguous conclusions about CBT for ME/CFS: the study “does not confirm the high success rates regularly claimed by research into the effectiveness of CBT for ME/CFS”. It found no increase in employment rates, in educational training, engaging in sports, maintaining social contacts and doing household tasks. The majority reported substantial deterioration. Moreover, the length of the therapy did not affect the results. The authors’ conclusion was: “Overall, CBT for ME/CFS does not improve patients’ well-being. More patients report deterioration of their condition rather than improvement. Our conclusion is that the claims in scientific publications about the effectiveness of this therapy, based on trials in strictly controlled settings within universities, have been overstated and are therefore misleading” (Source: Medisch Contact, February 2008, ISBN: 978-90-812658-1-2, by Koolhaas MP, de Boorder H, van Hoof E. The Netherlands). Drgao (talk) 23:41, 27 January 2013 (UTC)

That source appears to be a primary source published in a non-MEDLINE indexed journal. Doesn't meet WP:MEDRS to dispute multiple high quality systematic reviews, which specifically prohibits using primary sources to debunk secondary sources. Yobol (talk) 00:56, 28 January 2013 (UTC)

Is it actually fair to consider the CBT and GET trial results as secondary sources in the true sense of the word? As far as I am aware, the published CBT and GET studies are all performed by the same tiny clique of Wessely school acolytes; it is not as if CBT and GET studies have been widely replicated and validated by independent groups and laboratories around the world. In reality, the CBT and GET secondary sources are not really a review of independent literature. Thus the CBT and GET publications may be secondary sources on paper, but in real terms, perhaps they are not as secondary as you would want. Plus there is quite a bit of fishy business with the methodology of these CBT and GET studies anyway, as Lady Mar's letter catalogues. My view is that there is a real controversy here, and rather than pretend that this controversy does not exist, or try to paper over it, I think the reader needs to be informed of it.

In any case, I don't suggest we use the Dutch primary source to debunk the secondary source CBT and GET studies as such. Let these CBT and GET studies stand, but let us convey to the reader, by means of the Dutch source, that they need to be a little circumspect about accepting these CBT and GET results at face value. Drgao (talk) 01:36, 28 January 2013 (UTC)

We need to use secondary sources, not idle speculation or hand-waving. The sources you have produced (first the blog, then the primary source) are not appropriate. We are not here to discuss the topic, but to suggest appropriate changes to the article cited to specific sources and policies. Please read MEDRS again, we do not use primary sources as you suggest that secondary sources are wrong, as you are proposing. Yobol (talk) 01:54, 28 January 2013 (UTC)

No, I am not breaching the rules of WP:MEDRS. To quote WP:MEDRS: "Individual primary sources should not be cited or juxtaposed so as to "debunk" or contradict the conclusions of reliable secondary sources". So first of all, this WP:MEDRS stipulation only applies to reliable secondary sources, and there is good evidence to suggest that the CBT and GET studies are not such reliable secondary sources. So in this case, the WP:MEDRS stipulation may not apply at all. Secondly, as I already mentioned, but you presumably missed this point, I don't suggest we cite the Dutch primary source in order to "debunk" or contradict the conclusions of the secondary source CBT and GET studies, nor do I suggest we write that these secondary source are wrong. Rather, I suggest we cite the Dutch source in order to clarify the extent to which CBT and GET is helpful in ME/CFS.

How does this contradict WP:MEDRS? It doesn't. Ergo, there is no reason why the Dutch source should not be included in the CFS article.

The Dutch study adds important qualifying information about CBT and GET, because the Dutch study "found no increase in employment rates, in educational training, engaging in sports, maintaining social contacts and doing household tasks". This is a very important piece of information about CBT and GET, and I suggest anyone reading about CBT and GET would very much want and need to know this. Thus I think we need to include this sentence about no increase in employment rates,... etc in the article. Adding this once sentence in no way contradicts the CBT and GET studies, it merely qualifies them. Drgao (talk) 02:51, 28 January 2013 (UTC)

The secondary sources are not the CBT/GET studies themselves, but are meta-analyses done by independent bodies such as the Cochrane Collaboration, which are highly reliable. No, we do not use primary sources like you are suggesting, when we have multiple high quality secondary sources which say otherwise. Yobol (talk) 02:56, 28 January 2013 (UTC)

If that review process is so highly reliable as you say, how is that there are other published reviews such as Twisk & Maes taking a diametrically opposing opining on the effectiveness of CBT for CFS? Indeed, we need to more accurately represent the conclusions of Twisk & Maes in the CFS article.

And by the rules of WP:MEDRS, it is perfectly legitimate to add the above mentioned sentence: "no increase in employment rates,... etc" to the CBT section, as it does not contradict anything in that section.

I suggest the last paragraph of the CBT section be changed thusly:

CBT has been criticised by patients' organisations because of negative reports from some of their members that have indicated that CBT can make people worse. One published review concluded that it is unethical to treat CFS patients with the ineffective, non-evidence-based and potentially harmful techniques of CBT and GET. One study on the effectiveness of CBT for CFS patients found this therapy produced no increase in employment rates, in educational training, engaging in sports, maintaining social contacts and doing household tasks. Drgao (talk) 05:19, 28 January 2013 (UTC)

Adding information about details from a single primary source is WP:UNDUE weight to that material. To add information critical of CBT as you seem intent on doing, you will need to find a high quality secondary source (a systematic review - a higher quality than a literature review - since all the other sources we use that support CBT are systematic reviews) that says it does not work. The current use of Twisk and Maes seems appropriate to the WP:WEIGHT it deserves, since it is not as high a quality review as the others. Yobol (talk) 13:07, 28 January 2013 (UTC)

Regarding the weight that Twisk and Maes deserve: two excerpts from WP:UNDUE seem pertinent to this question:

• "Neutrality requires that each article or other page in the mainspace fairly represents all significant viewpoints that have been published by reliable sources, in proportion to the prominence of each viewpoint in the published, reliable sources".

• "undue weight can be given in several ways, including, but not limited to, depth of detail, quantity of text, prominence of placement, and juxtaposition of statements."

Given that there are currently around 10 lines of text in the CBT section from secondary sources that support the efficacy of CBT, if we are just going to add the following 1 line to the CBT section:

One published review concluded that it is unethical to treat CFS patients with the ineffective, non-evidence-based and potentially harmful techniques of CBT and GET.

then this above 1 line of secondary source text expressing an opposing view on CBT would be weighted in a ratio of roughly 10 to 1 lines of text against. So this 1 line represents just one tenth of the total quantity of secondary source text. Allocating just 10% of the text does not seem like undue weight. This opposing viewpoint on CBT can be found in 3 different review studies by Twisk & Maes: 1, 2, 3.

One other point on this matter: I am not aware of any Wikipedia rules that state that a systematic review is higher quality secondary source than a literature review. And in this case, for the CBT studies, where the reliability of the primary source raw data is in question anyway (the CBT trial data is very fishy), a systematic review, with its meta-analysis of the very same data will have the same reliability question mark. Thus in this case, the literature review will be higher quality, more appropriate, and more authoritative than the systematic review. Drgao (talk) 17:23, 28 January 2013 (UTC)

Are there any further objections or issues about including the following sentence in CBT section?

One published review concluded that it is unethical to treat CFS patients with the ineffective, non-evidence-based and potentially harmful techniques of CBT and GET.

If not, I will go ahead and include this sentence. Drgao (talk) 06:45, 31 January 2013 (UTC)

Need to rephrase it. The review contradicts other sources with regards of actual effectivity of these techniques. You cannot say that a treatment is evidence-based and then say that they shouldn't be used because they're not. JFW | T@lk 20:35, 31 January 2013 (UTC)

Yes, it is not quite satisfactory, I agree. For the moment, I have just tagged on the new sentence (denoted in bold italics below) to follow on from the existing sentence (in bold below) which already indicated a negative view on CBT.

CBT has been criticised by patients' organisations because of negative reports from some of their members that have indicated that CBT can make people worse, a common result across multiple patient surveys. This negative view of CBT has been additionally expressed in a review which concluded that it is unethical to treat CFS patients with CBT and GET as these techniques are ineffective, non-evidence-based, and potentially harmful.

But in order to better prepare the reader for these opposing views on the efficacy of CBT, perhaps the whole CBT section should begin with a statement explaining that CBT is a controversial area. That way, the reader will appreciate that the widely differing conclusions regarding the efficacy of CBT are due to the fact that the efficacy of CBT has not been resolved or agreed on. Drgao (talk) 21:23, 31 January 2013 (UTC)

I have rephrased your addition, and hope you can agree to this. I don't think we need more than one reference from the Twisk & Maes team (particularly because the second source seemed to focus on the situation in Belgium in particular). In general, I am really quite doubtful about the editorial standards at Neuroendocrinology Letters. While it is indexed on Pubmed and has an ISSN, the website[52] looks amateuristic and it is not possible to access even abstracts of the articles. JFW | T@lk 13:38, 1 February 2013 (UTC)

OK, it's slightly watered-down, but I guess it does flow better with the text above. I think, though, it is important to include the info on the Dutch study on the effectiveness of CBT for CFS patients, which found this therapy produced no increase in employment rates, in educational training, engaging in sports, maintaining social contacts and doing household tasks. This very important information that qualifies the scope and effectiveness of CBT. Without this info, the reader will not have a clear-cut understanding of the capabilities of CBT. Drgao (talk) 08:41, 6 February 2013 (UTC)

(←) The Dutch study is not published in a peer reviewed journal and is a primary rather than a secondary source. You cannot use such sources to displace high-quality secondary sources. JFW | T@lk 15:56, 6 February 2013 (UTC)

We already include the Dutch study in the treatment article. It is group therapy, which explains why they got the results they did. If you want you can add a sentence to the main article saying that group cbt isn't as effective, but I would use the Cochrane review as a ref rather than the Dutch study. --sciencewatcher (talk) 17:01, 6 February 2013 (UTC)

Ampligen

Latest comment: 11 years ago2 comments2 people in discussion

It might be worth adding a sentence about Ampligen to the main article, as it has generated quite a large amount of news recently. I just updated the treatment sub-article with the latest info. --sciencewatcher (talk) 23:38, 17 February 2013 (UTC)

I'd agree with that. So far as I know, only Belgium and Canada are allowing it as treatment, but I wasn't able to find anything quickly that gave a rationale for that, given the less-than-stellar trial results (or so I gather). We'll definitely want to mention the FDA rejection as well and perhaps cite some of their explanation from the link you put in the treatment article. – RobinHood70 ^talk 07:50, 18 February 2013 (UTC)

Autoimmune Illnesses

Latest comment: 11 years ago3 comments3 people in discussion

The Wiki page on Autoimmune illnesses has a table listing a number of health conditions which are referenced as "suspected" or "accepted" as autoimmune illnesses. ME is not listed in this table, but I believe it should be (as "suspected") since, to my understanding, many specialists believe it is an autoimmune illness. Thoughts? Pillartopost (talk) 21:26, 12 March 2013 (UTC)

I think it would depend on how much evidence you can dig up and how strong that evidence is. It also depends on the criteria for inclusion in that section. In the years that I've had ME/CFS, I've heard a lot of different theories. My general impression is that while there are a couple of front-runners (neuroimmune, autoimmune, viral, probably one or two others I'm not thinking of right now), none of them has a strong likelihood over the other. That said, I may be out of date.

Also, while you may get more knowledgeable people here, this topic is probably better off on Talk:Autoimmune disease, with only a link to it from here. – RobinHood70 ^talk 21:41, 12 March 2013 (UTC)

There is a proven autoimmune aspect to ME, significant autoantibodies to thyroid. Whether most or the whole disease is autoimmune is of course unknown. I agree the full discussion is best on that page with a link to here. But glad there is a heads up here. JustinReilly (talk) 11:47, 26 April 2013 (UTC)

Media / Popular Culture

Latest comment: 11 years ago3 comments3 people in discussion

Though I have not seen this film, "Voices from the Shadows", I wanted to question if it might be appropriate to have a reference to this ME/CFS documentary somewhere within the ME/CFS article. Thanks. Pillartopost (talk) 21:38, 12 March 2013 (UTC)

I agree. Maybe in the "see also" section. I Very highly recommend this documentary to everyone who edits this page. Please, please watch it. I would consider it a personal favor. Thanks for your consideration. JustinReilly (talk) 11:50, 26 April 2013 (UTC)

Voices from the Shadows is a redlink. --Anthonyhcole (talk · contribs · email) 13:30, 26 April 2013 (UTC)

Add sulbutiamine as a possible treatment?

Latest comment: 11 years ago2 comments2 people in discussion

The sulbutiamine page mentions it as a treatment for chronic fatigue: http://en.wikipedia.org/wiki/Sulbutiamine#Asthenia -- Clevera (talk) 08:22, 15 March 2013 (UTC)

I took a look at those therapeutic claims and removed them from that article, because the sources failed WP:MEDRS. Probably best to discuss on that talk page rather than here. -- Scray (talk) 09:08, 15 March 2013 (UTC)

Discover Magazine article: "Are B-cells to blame for Chronic Fatigue Syndrome?"

Latest comment: 11 years ago1 comment1 person in discussion

Reference to the research in this article could be useful to take into consideration at some stage:

http://discovermagazine.com/2013/may/01-are-b-cells-to-blame-for-chronic-fatigue-syndrome#.UVzHnTehrFw

(Discover Magazine: "Are B-cells to blame for Chronic Fatigue Syndrome?") — Preceding unsigned comment added by 210.48.83.17 (talk) 23:25, 3 April 2013 (UTC)

Reaction time

Latest comment: 11 years ago2 comments2 people in discussion

From the 'Cognitive functioning ' section: "A 2010 meta-analysis concluded cognitive symptoms were principally resultants of decreased attention, memory, and reaction time". I'd have thought that increased reaction time was more likely. Is this an error, or am I misunderstanding something? AndyTheGrump (talk) 00:14, 3 June 2013 (UTC)

You are correct. I changed "decreased" to "deficits in". - Tekaphor (TALK) 04:34, 5 June 2013 (UTC)

"ranging from viral infections to psychological stress"

Latest comment: 11 years ago3 comments3 people in discussion

I removed from the lead for multiple reasons.

1) The wording is lifted verbatim from Mayo page.

2) Sentence already states,"infectious and psychological mechanisms have been proposed".

3.) The Mayo clinic website source is not on same the level as the journal review or CDC source already cited.

Ward20 (talk) 04:45, 2 July 2013 (UTC)

I agree with Ward20 on all points. Keepcalmandcarryon (talk) 11:04, 2 July 2013 (UTC)

In regard to #1, that can be easily remedied. In regard to #2, I can see what you point out, but don't see it as a disqualifying factor. In regard to #3, the Mayo Clinic is one of the foremost medical facilities in the world. However, if you find it that objectionable, I don't see the point in continuing to arguing it. So no worries. Liam Patrick (talk) 17:00, 2 July 2013 (UTC)

The Mayo Clinc is only one source; and not itself a researcher or institute involed in fatigue; or conditions where fatigue is a major factor. [Max MJ]

Fatigue vs Chronic Fatigue vs "CFS" vs other conditions

Latest comment: 11 years ago1 comment1 person in discussion

Research into Fatigue as a symptom; diagnosis of Chronic Fatigue as an aggravated condition requires a better approach than an umbrella like CFS.

Scientific research to separate General Fatigue and Chronic Fatigue from conditions such as Myalgic Encephalitis, fibromyalgia, etc. and cases of misdiagnosis require that the 'syndrome' of assumed Chronic Fatigue is ended.

Should the term CFS should be retired? Cases of misdiagnosis are being brought against doctors who use CFS; and confuse the current bands of diagnosis such as the stated "three months" fatigue for CFS, - compared to the four to five years used with ME.

Max MJ — Preceding unsigned comment added by 80.42.189.244 (talk • contribs) 09:40, 4 July 2013

This is not a forum for general discussion of the subject. Are you proposing a specific change to the article? If so, it will need to be based on sources compliant with WP:MEDRS. AndyTheGrump (talk) 11:53, 4 July 2013 (UTC)

The rise and fall of XMRV

Latest comment: 11 years ago1 comment1 person in discussion

Anyone have access to this article? [53] It might be useful in updating the Blood donation section. Thanks. Ward20 (talk) 01:52, 8 July 2013 (UTC)

^ http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html
^ "International Classification of Diseases (and Related Health Problems)". 7th Edition, Version for 2007 - Chapter VI, G93.3.

[1] ttp://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

[2] "International Classification of Diseases (and Related Health Problems)". 7th Edition, Version for 2007 - Chapter VI, G93.3.

[1]

[2]