Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 9

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Talk page archive summaries

Has anyone found the time to do a summary of the talk page archives with a view to writing up some sort of FAQ or summary of what has been discussed in the past? What I would be interested to know is at what point there was the largest number of people discussing the issue. There might be something in the talk page archives, but I haven't got that far yet (there is a lot to read). What I'm seeing above is a few dedicated editors, and no indication yet that a clear summary of the literature (I suppose there is so much literature that summarising it is not possible) has been presented to a broad base of Wikipedia editors for a neutral decision on how to approach this (i.e. a request for comments). Carcharoth (talk) 04:56, 1 November 2008 (UTC)

Other relevant talk pages are: Talk:Alternative names for chronic fatigue syndrome and Talk:Controversies related to chronic fatigue syndrome. Before I go any further, I want to say that debates about the titles of an article are particularly draining. It is far better to get the content of the article to a much better standard and worry about the right title later. As long as the ME and CFS/ME redirects are in place, and something is mentioned at the top of each article, then readers will find their way here and know what is going on. They may be (depending on where they are from) surprised at the title, but it is the content of the article that matter 100 times more than the title. Hours and hours spent debating a title is time better spent improving the article. Carcharoth (talk) 05:10, 1 November 2008 (UTC)

OK, do you have suggestions on improving the article, bc it has alot of high quality sources already, it says there is a naming conteroversy, it says ME is an alternative name prefered by some patients and doctors. Guido told us what would improve the article, that is take out all my edits, go back to version before I edited, take out any thing about psychological bc he thinks it is wrong all tho well sourced. I disagree may be you agree. RetroS1mone talk 05:39, 1 November 2008 (UTC)

I am with you on the naming, it is very wasteful debating it, specially when most sources in last 20 years use one name. Here is an early version of this article, it startles it is so similar to alot of what there is now. Most of the editing was done in this year and last year, I think there is a group of editors like Guido, MEspringal, Jagra, Ward20, Strangelv, Tekaphor etc. Guido has on his user page that that did alot of work renaming things and making subpages in last 2 years approximate but some of them are not editing the pages now and there is a shift back towards the mainstream, my opinion, and this can be why Guido is upset now, he thinks the work of this group is being destryoed?? Which I can understand, but weight is also important. I like the FAQ idea btw, thx for that. RetroS1mone talk 06:02, 1 November 2008 (UTC)

Does the page say that some people use the combined term "CFS/ME"? For example: "Many patients, and some research and medical professionals in the United Kingdom and Canada, use this term in preference to or in conjunction with CFS (ME/CFS or CFS/ME). An international association of researchers and clinicians is named IACFS/ME." - from Alternative names for chronic fatigue syndrome - see Sharpe M (2002). "The report of the Chief Medical Officer's CFS/ME working group: what does it say and will it help?". Clin Med 2 (5): 427-9. PMID 12448589: "Chronic fatigue syndrome (CFS) sometimes known as myalgic encephalomyelitis or encephalopathy (ME) has long been a controversial topic. [...] Much remains to be resolved before guidance that is both evidence based and acceptable to all parties is achieved." (2002) - have things changed in the last 6 years? Can Wikipedia really in all honesty tone down aspects of the controversy by invoking WP:UNDUE, without ending up being involved in the controversy itself? Carcharoth (talk) 06:21, 1 November 2008 (UTC)

Does the page say CFS/ME, I gave the link so I guess it is rehtorical question, but no it does not. Wikipedia should follow the common use and that is CFS. You can't blow up what is not a controversy except in activist circles without getting involved in the controversy itself. So you call it CFS and you say there is another name preferred from some activists etc, that is what the article does now. RetroS1mone talk 17:21, 1 November 2008 (UTC)

RetroS1mone, I'm trying to help here. If you take affront at what I'm saying, we are not going to get very far. My position is simple. The extent of common use appears to vary from country to country. I'm not trying to gauge a percentage in the medical literature and combine that percentage with WP:UNDUE to work out what Wikipedia should say. I'm trying to find out what published experts have said about the name controversy. Not what published experts call the disease. Do you see the difference? Some people call the condition by a combined name of "CFS/ME". Wikipedia should have room in this article to say that. Not numerous paragraphs about it, but an adequate summary in this article of the "alternative names" article. Carcharoth (talk) 18:30, 1 November 2008 (UTC)

I am not taking affront Carcharoth, you can think about wp:faith also pls, I am just wondering why a respected admin takes a side and repeats what Guido said w/o looking into history and so confused about Wikipedia medical articles. Published experts don't say much about the name conteroversy bc there is not much name conteroversy except for ME activists like Guido, so the stuff you find published is in activist newsletter and journal. Name conteroversy in past was between benign me and epidemic me then it was chronic mono or epstien barr against cfs and now it is should WHO say cfs beside post viral fatigue. World Health Organization calls it post viral fatigue syndrome, under that benign myalgic encephalomyelitis and links from CFS. it does not say CFS/ME. But you are right, some patients are very activist about saying ME and there is popular sources for that, I say, add CFS/ME to Nomenclature which is the second section in article!!!that is wierd to, and say why it is used and who does it. but that is enough this article is about CFS it is a medical article so it is wrong putting so much in the nomenclature. RetroS1mone talk 13:31, 3 November 2008 (UTC)

Towards a FAQ

I think Talk:Chronic fatigue syndrome/ME archive was most useful (from my brief scan through the talk page archives). Now, I want to suggest a FAQ-based approach. Have a look at Talk:Global warming/FAQ and Talk:Evolution/FAQ. Does anyone think that that sort of approach would help here? A good starting point, I think, would be to clearly lay out the history of the various conditions and names, and their definitions, in a working space that can be worked on in a more fluid manner than in the article. Possibly a draft of various sections would help as well. See Talk:Evolution/draft article (though that is more because the main article is in a near-permanent state of protection - not something I hope would ever happen here). Carcharoth (talk) 05:02, 1 November 2008 (UTC)

More on the validity of ME

I found the full text of Donald Acheson's "The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia" article from 1959 here. He says the encephalomyelitis term is due to the "presumed inflammatory nature of the disorder" (my italics). And he says the term BME has been criticised by Sigurdsson who says that "the disease is not always benign, not invariably myalgic, and possibly never encephalomyelitis". Also, he says the staff at the Royal Free Hospital criticized the name. I would suggest putting these criticisms into the Alternative Names sub-page. --sciencewatcher (talk) 03:38, 2 November 2008 (UTC)

One thing to be wary of is putting too much in subpages. At some point, someone needs to step back and assess whether the balance between details in subpages and summaries in the main article is being done right. As an example from above, I think that because CFS is the main article people will arrive at, there should be something in the summary here about CFS/ME and ME. Carcharoth (talk) 03:02, 3 November 2008 (UTC)

The issue of ME vs CFS is more than just name accuracy, but also about clinical descriptions

Thanks Sciencewatcher for finding that paper. I noticed in this paper that ME wasn't "invariably" fatigue either, so now I better understand why ME proponents generally hate the emphasis on "fatigue" in CFS over everything else. The impression I attained from skimming through it, is that there are important similarities which suggest ME and CFS are indeed comparable, although CFS is slanted towards common "chronic fatigue" and presumed chronic Epstein-Barr virus. On "lymphadenopathy", Acheson states that "In the Royal Free Hospital outbreaks it was such a constant feature that the illness was at first diagnosed as infectious mononucleosis.", perhaps the Lake Tahoe outbreak which influenced the CFS definition was similar, so was CFS over-influenced by a single outbreak? Whereas ME in this paper seems to be a hybrid description based on numerous outbreaks, which despite some major similarities, varied somewhat in presentation and outcome; this adds some heterogeneity to ME, although the accuracy of the CFS definition itself is still also in question.

While Acheson's paper indicates that ME can cause long-term disability in some people, the bulk of the data is on ME as an acute illness (whereas CFS by definition is a chronic condition, and the early onset stage is almost ignored). It is interesting to note that in some outbreaks Acheson says that most people recovered within a few months (so therefore can't be retrospectively classed as "CFS patients"?), although overall many cases turned chronic and symptoms usually remained despite improvements in function. Melvin Ramsay's later paper on ME (PMID 746017) describes: "A follow-up study suggests that there is one group of patients that recovers completely or nearly completely, a second that recovers but is subject to relapses and a third that shows little or no recovery, these patients remaining incapacitated." Unsurprisingly, it sounds like those affected by the outbreaks generally represent a more neuroimmune-affected group than what the CFS criteria now represents, which reminds me of the Canadian 2003 definition as an attempt to reintroduce ME into CFS.

_Tekaphor (TALK) 03:31, 3 November 2008 (UTC)

I think it is the same for CFS with regards some patients recovering in a few months. We already have PVFS diagnosis, for people who have post-viral CFS lasting a few months. Then, if it lasts longer than 6 months they are diagnosed with CFS. I think the research shows the majority of people recover from PVFS before they reach the 6 months stage (after that recovery is much less likely). And I agree with you about the confusion about whether he is talking about one illness or multiple. This should be discussed in the article if it isn't already. --sciencewatcher (talk) 15:26, 3 November 2008 (UTC)

We don't know enough about other PVFS diseases to generalize this, but it has indeed been reported that many epidemic cases of ME recover quickly. The same may be true for endemic cases; in practice, these patients most likely do not get diagnosed at all. --Guido den Broeder (talk, visit) 02:06, 24 November 2008 (UTC)

Different uses of the term "ME"

Could I raise a point here to see if I'm getting this right. I think the term ME (myalgic encephalomyelitis/encephalopathy) is used in several ways:

• (1) A strict medical 'Latin' (etymological) use where the term can effectively be translated as muscle pain, "myalgic" and "encephalomyelitis" inflammation of the brain and spinal cord (for 'myalagic encephalopathy' - "pathy" refers to unspecified pathology rather than inflammation).
• (2) A term used to describe a condition that some consider distinct from chronic fatigue syndrome.
• (3) A term considered by some to be an alternative name for chronic fatigue syndrome.

I think points (1) and (3) are covered by Alternative names for chronic fatigue syndrome, though the exact etymological history would make an interesting article in its own right. Would point (2) be covered by Controversies related to chronic fatigue syndrome? The point I'm trying to make here is that there is a distinction between those that consider something that they call ME to be something different from CFS, and those that think CFS is the wrong name (or a poor name) for the condition. Have I got that about right? Carcharoth (talk) 03:13, 3 November 2008 (UTC)

Carcharoth you are right and it is good you are getting involved but pls could you read the archives, this was discussed all ready thx. I am not trying to take affront and attack you I am just saying, there is alot about it up there, it will help you reading it.

But the problem, way 2 you say, is not supported by good sources it is a minority opinion like they say and not minority, it is like a few people. You i think want to give it alot of weight bc you are defending Guido, that is what you know, and Guido and other ME activists are tire-less for their cause and that is great, but Wikipedia is not for giving loudest side the weight.

Naming stuff should go, CFS, that is like more then 10 to one common name, then PVFS and BME, that is the WHO, then you can talk about the historical stuff. For patient preferred, i think CFIDS is the biggest orgnanization am I right about it, but I think so, so CFIDS should be there, it is not having it's own sentence now, and then ME and also CFS/ME to sum up sub article. RetroS1mone talk 13:45, 3 November 2008 (UTC)

Retro: I don't think Carcharoth is suggesting we rename/rewrite the entire article, he's just saying (I think) that we should put a paragraph into the controversies section. I agree that many patient groups do believe that ME and CFS are different (not just Guido), and if we can find a quote or reference from a respected patient organisation it might be worth putting it in. --sciencewatcher (talk) 15:31, 3 November 2008 (UTC)

I put more sources in Alternative names for chronic fatigue syndrome and i talked about the differences in researchers and doctors and patients with review sources. See if you all agree with it, if you do this article should get more about the ME CFS. Also when can the tag come off this article? I think the "totally disputed" was not right for Alternative names, it is not totally disputed not even by Guido I think it should come off that article I will take it off soon when you do not object. RetroS1mone talk 06:05, 4 November 2008 (UTC)

I took the tag off - I thought you just forgot to remove it. The article doesn't appear to be disputed - Guido just put the tag on, then insulted me in the talk page, and refused to discuss the reason for the tag (see "totally disputed" section). --sciencewatcher (talk) 16:13, 4 November 2008 (UTC)

Hang on a mo, RetroS1mone. Carcharoth has put his finger on something surely? Please don't dismiss it. Maybe here's a proposal that will make everyone happy. Either i) ME is a separate condition from CFS (ergo it should have its own page); or ii) it is a subset of CFS (in which case it should have a separate paragraph on the CFS page, along with any other subsets of CFS); or iii) it is a synonym for CFS - in which case, the page is right as it exists. Does anyone disagree? Tishtosh20 (talk) 00:31, 7 November 2008 (UTC)

Actually, what I am saying is that regardless of the "truth", the term ME (and CFS) is used in different ways by different people. That needs to be made clear in this article and the related articles. There are lots of nuances here, and I don't think this article or the related one picks up on all the nuances at the moment. Even for minority viewpoints, you have to include enough information to make clear what the minority viewpoints are, in order to avoid adding to the confusion. Carcharoth (talk) 00:56, 7 November 2008 (UTC)

Use (1) is the main interpretation. To understand (2) and (3), it is necessary to list the various uses of CFS as well. Guido den Broeder (talk, visit) 01:46, 24 November 2008 (UTC)

Can I also make some points about the Wikipedia guidelines?

"The names of Wikipedia articles should be optimized for readers over editors, and for a general audience over specialists."

Even if we accept that "the majority of the medical community" opt for CFS, then we should also recognise that the majority of patients in the UK - I can't speak for anywhere else - opt for ME/CFS: the main patient group here is named the ME Association http://www.meassociation.org.uk, and the main UK research charity is ME Research UK http://www.meresearch.org.uk

See also The 25% ME Group http://www.25megroup.org; The Young ME Sufferers Trust http://www.tymestrust.org;

Patients here reject CFS on its own as inaccurate for their cases, and as the Wikipedia guidelines say: "the purpose of an article's title is to enable that article to be found by interested readers". These are more likely to be patients than medicos - and their views are unlikely to appear in peer-reviewed journals!

"Minority views can receive attention on pages specifically devoted to them" - but this, I think is what Guido was proposing - and didn’t get much support for! Is there instead a case for some kind ofpage with an ME title that would cross-refer to CFS? Or does this contravene POV forks guidlelines?

I accept that the UK may differ from the US - and indeed from other nations.

But there are two UK government reports which refuse to come down on the simple CFS term - the Gibson report and the NICE guidelines. And during August 2008, Ann Keen, Parliamentary Under-Secretary for Health Services on the The official site of the Prime Minister's Office http://www.number10.gov.uk/Page16688 use the term CFS/ME.

Yes, I know: these are not medical reports: they are from what someone rcently described as "agencies, which are of lower reliability than the the peer-reviewed journals, according to our guidelines on [WP:MEDRS|medically reliable sources]]. “

But they are secondary sources - and as the guidelines say:

“Ideal sources for such articles include general or systematic reviews in reputable medical journals, widely recognised standard textbooks written by experts in a field, or medical guidelines and position statements from nationally or internationally reputable expert bodies. “ (my italics).

Though secondary, they are NOT described by the guidelines as of lower reliability - indeed the guidelines conclude that “primary sources should not be cited or juxtaposed so as to "debunk" or contradict the conclusions of reliable secondary sources”.

Jimbo also says: “If a viewpoint is held by a significant minority, then it should be easy to name prominent adherents;” and “the NPOV policy is to let competing approaches exist on the same page”

Can we reach a compromise here? Please at least read the two reports before rubbishing them:

Gibson report: http://www.erythos.com/gibsonenquiry/

NICE guidelines: http://www.nice.org.uk/guidance/index.jsp?action=download&r=true&o=34192

(Sorry - I can't remember how to do links properly. Nor would you if you had ME!)

Tishtosh20 (talk) 01:09, 7 November 2008 (UTC)

Isn't this already covered in the Alternative Names sub-article? Or are you proposing to create a separate article for ME? I'm not opposed to an ME article if that's what everyone agrees to, but I'm not sure it's necessary. After all, we don't have separate articles for PVCS, CFIDS, etc. The UK government's position is that CFS and ME are interchangable terms for the same illness, so it makes sense to just have a redirect from ME and explain in the article that some people call the illness ME or CFS/ME.

The only issue that isn't in the article, which probably needs to be put in, is the minority viewpoint that some patient organisations believe that CFS and ME are different illnesses. --sciencewatcher (talk) 02:39, 7 November 2008 (UTC)

Tishtosh20 I hope your OK, and I am agreeing on you and Carcharoth and I made changes, pls look at Alternative names for chronic fatigue syndrome Sciencewatcher and me did some addition there with some good reviews like the Prins etal systematic review from 2006, that is a Dutch group in a UK journal bc I know you are objecting to American imperialism. The longest section in Altenrative names is on ME. The UK patient view is there, also how they protested and got the Royal College to drop their opposing ME and use CFS/ME or ME/CFS. It also says some people think ME and CFS are different conditions. I can only find one good source for it, and their reference is the 1959 Acheson paper. Do you have other good sources, pls tell then we can add more. That stuff that is in Alternative names has good sources, it can go in this article.

I do think best solution is what I said before why not have article about like Patient groups' views about CFS or ME/CFS Then medrs is not so improtant bc it is not a medical article and it is fine having views from non professionals that is what it is about!! That article can be linked from here. Wikipedia needs to have med articles based on medrs but other articles do not need to be that is where patient's views and non-professional views are great!! RetroS1mone talk 02:49, 7 November 2008 (UTC)

I took some ME and CFIDS stuff from Alternative names for chronic fatigue syndrome and put it in nomenclature section so now the history of patient's groups and doctors dispute in UK is here, also the view from some people CFS and ME are separate conditions. RetroS1mone talk 10:21, 10 November 2008 (UTC)

I also re-organized using the WP:MEDMOS guidelines for medical articles. Controversy related is in "Society and Culture" following "History". RetroS1mone talk 10:53, 10 November 2008 (UTC)

I just read some of the additions you added and I think it looks good. I did notice on my watchlist that you have done more so I will read some more but you are doing wonderful to try to get the information in that has been in debates here. It nice to see the fairness you are trying to do and the hard work you are doing to do it the right way, kudos to you IMHO! --CrohnieGal^Talk 13:38, 10 November 2008 (UTC)

Thank you CrohnieGal!! RetroS1mone talk 16:21, 10 November 2008 (UTC)

I like the added bit explaining 'most common name' - that's excellent, thank you; also the extra info on 'Benign myalgic encephalomyelitis' under 'Nomenclature'. I think the additional explanations are a huge improvement and fair to all.

If I could have my druthers I'd like to see links to some of the UK reports/organisations - especailly Gibson and NICE - perhaps most appropriately in the para that starts 'Many patients, and some doctors...'. If I could have that I'd go away and leave you all in peace. But maybe I'm pushing my luck??!!

Two factual updates:

i) "Tishtosh20... I know you are objecting to American imperialism." You know nothing of the kind.

ii) "Tishtosh20 I hope you're OK..." No. Tishtosh20 (talk) 00:25, 13 November 2008 (UTC)

Tishtosh20 I am sorry I do not spell check and gramar check my talk page comment i just write what is on my head and it does not all ways come out right. By OK I mean I hope you are doing better, I don't know you are doing better but I hope you get better it was a dumb way trying to say "Get well!!" American imperialism, you said you think of CFS like an American thing when the rest of world says ME, that is what I was saying by American imperialism may be you do not think it is imperialism those were my words.

I do not want you to go away Tishtosh20 but it is possible putting in the UK reports that are notable in reliable sources. Lets talk more about it. RetroS1mone talk 03:18, 13 November 2008 (UTC)

Disputed tag removal

Again are there specific objections to remove the tag? RetroS1mone talk 11:44, 10 November 2008 (UTC)

Not from me,I think you should remove. --CrohnieGal^Talk 13:34, 10 November 2008 (UTC)

I'd like it to stay until we have truly nailed this one.Tishtosh20 (talk) 00:11, 13 November 2008 (UTC)

Ok but what specifically do you want? RetroS1mone talk 00:13, 13 November 2008 (UTC)

I think the tag is disruptive. The editor who placed it has been banned, and never bothered to give a clear outline of the dispute. JFW | T@lk 08:57, 16 November 2008 (UTC)

OK I took off the tag, that is consensus I think. Tishtosh had one objection, say the NICE guidelines and Gibson Enquiry say CFS/ME or ME/CFS. It is all ready saying ME/CFS and CFS/ME are common names, when you put in NICE guideliness then do not you have to put in alot of other organizations, US and other places, and the Enquiry is not in reliable sources, the website for it is an orchid society!! So w/o better and reliable sources on the Enquiry I do not think to put it in this article, the conteroversy article right one? RetroS1mone talk 02:59, 17 November 2008 (UTC)

Factual update re. RetroS1mone's comment on the Gibson Inquiry website. This site is only one of five hosted on the same domain. All are for voluntary bodies which include a Pre-School, two orchid organisations and an ME campaigning group, plus Gibson. The only common factors are the shared web space (given without charge) and thus a shared root domain name, and the same Webmaster. The Gibson site and its content has always been and continues to be controlled directly, via the Webmaster, by Dr Ian Gibson MP of the UK Parliament's Group on Scientific Research into Myalgic Encephalomyelitis (GSRME, i.e. the Gibson Inquiry), whose official site it is, as clearly stated on the site itself. Thus the site's reliability as a source on the Inqiry is 100% - none better - and is in no way compromised or influenced by any other site sharing its host domain. Erythos (talk) 23:29, 21 November 2008 (UTC)Erythos

I think an important government organization would have government web site not share a name with orchid society called Erythos, that is also coincidence I guess your name. What ever it is it is very obscure and there does not seem a good news source or other reliable indapendant source about it. RetroS1mone talk 01:23, 23 November 2008 (UTC)

Two identical letters to the editor in local UK news papers from a ME activist, that is all i see and it is nonrs. RetroS1mone talk 01:32, 23 November 2008 (UTC)

My guess is Erythos is the webmaster for the site. Anyway, the Gibson Enquiry wasn't really an "important government organisation" - it was just an enquiry by a member of the UK parliament (Ian Gibson). Perhaps he should have made the site look a bit more official, but I don't doubt that the info on the site is the actual official report from the inquiry. Whether it is a reliable source is another matter. My opinion is that it is a reliable source for comments about the illness, but not for anything to do with medical research. What was the reference for anyway? --sciencewatcher (talk) 02:28, 23 November 2008 (UTC)

User TishTosh20 said they wanted put in links to NICE and the Gibson Enquiry. The NICE is there, i added some stuff on that today, but I do not think Gibson Enquiry is very notable and the website is kind of a problem for rs, it could be in the Controversy article, i do not think it is notable and rs for main article. RetroS1mone talk 03:27, 23 November 2008 (UTC)

The Gibson inquiry is not an official parliamentary enquiry, but it is not a one-man job either. Various politicians and scientists have contributed to it. If the NICE guideline is mentioned, which is a very one-sided view, then referencing this inquiry (the report, not necessarily the website) can help belance the text. Guido den Broeder (talk, visit) 01:57, 24 November 2008 (UTC)

NICE guideline is a National Health Service product, that is in the article as an example of guidelines. "One sided view" is your interpretation. We do not balance text with nonrs. Gibson Enquiry is just not notable, and it is not in reliable sources. It can go in an article like Conteroversy, it is not appropriate for the medical article. RetroS1mone talk 04:21, 24 November 2008 (UTC)

Sorry I mean it can go in Conteroversy article if some one finds a reliable source for it. RetroS1mone talk 04:22, 24 November 2008 (UTC)

Obviously, the report is its own reliable source for its existence.

Gibson I. e.a. (2006), "Inquiry into the status of CFS / M.E. and research into causes and treatment", Group in Scientific Research into Myalgic Encephalomyelitis (M.E.), Londen, England [1]

The fact that it is mentioned by a great many patient organizations makes it notable. [2] Guido den Broeder (talk, visit) 08:43, 24 November 2008 (UTC)

Mere existence isn't enough, and googlehits isn't useful for many things, but ultimately the paper might be used in the history/society sections or in the controversy article. What sort of text could it justify/what changes could be made based on it? WLU (t) (c) ^{(rules - simple rules)} 23:26, 29 November 2008 (UTC)

International Symposium on Viruses in Chronic Fatigue Syndrome 2008

By Drgao, November 2008

You many want to to consider providing references to the work of Dr John Chia, Dr Nora Chapman on enterovirus aetiologies of CFS, arguably one of the more common viral causes of CFS (with Epstein-Barr virus, Herpes Six, and Parvovirus either being infectious co-factors, or slightly less common viral causes of CFS). Of course, CFS has non-infectious aetiologies also, such as pesticide exposure, but here I wish to provide an update on the rapidly-progressing research on viral causes.

The persistent enterovirus infections suspected of causing the CFS syndrome do not shown up in blood tests. Up to very recently, this has been a complete mystery.

But new research by Nora Chapman, et al, explains why: it seems that in long term enteroviral infections, actual genetic changes occur to the virus, and a new form of this virus emerges, called the the terminally-deleted enterovirus, which is a NON-CYTOPATHIC ENTEROVIRUS. This non-cytopathic enterovirus lives within cells (intracellular), and rarely breaks out (no cellular lysis), therefore it is rarely found in the blood, spinal fluid, etc. This new research begins to explain why enterovirus has been so hard to locate within the blood and central nervous system of CFS patients, because in the long term, enterovirus mutates into a non-cytopathic form.

NORA CHAPMAN SYMPOSIUM 2008 VIDEO: THE NON-CYTOPATHIC ENTEROVIRUS: http://www.scivee.org/node/7031

In this video given at the Symposium, Nora Chapman explains that the enterovirus ditches significant portions of its own RNA, but is still capable of persisting and replicating within cells at a low yield. The provides the mechanism to explain why enteroviruses are often detected within human tissues, even though no infectious and cytolytic enteroviruses are found. SInce they do not quickly destroy the cell, these non-cytopathic enteroviruses remain within the cell, where they can cause cellular dysfunction. These non-cytopathic enteroviruses can exist even in the presence of an active immune response, and can thus cause this cellular dysfunction for a long time.

This is a groundbreaking advancement in understanding the enterovirus.

Enterovirus can now been consistently detected in CFS patients, thanks to the meticulous and pioneering work of John Chia in finding enteroviral genes in the tissues of CFS patients.

Chia says that the most reliable way of detecting long-term enterovirus infection is through taking a tissue sample via stomach biopsy, and testing this tissue for the presence of enteroviral RNA genes and enteroviral VP1 protein. With this approach, and for the first time, Chia is consistently able to detect enterovirus genes and enterovirus VP1 protein in the tissues of the subset of CFS patients whose condition is caused by an enterovirus such as the coxsackie B virus.

Chia has given double interferon therapy to CFS patients with enterovirus, and has put their condition into remission. This in itself certainly goes a long way to prove that the aetiology of this subset of CFS is an viral one. But unfortunately for the patients, many relapse after about a year, so it is not yet a permanent cure. Ref: http://www.phoenix-cfs.org/TrtInterferon.htm

GOOGLE SEARCH REF: http://www.google.co.uk/search?q=Dr+John+Chia+enterovirus+chronic-fatigue-syndrome

GOOGLE SEARCH REF: http://www.google.co.uk/search?q=Nora+Chapman+enterovirus+chronic-fatigue-syndrome

Very Interesting interview with John Chia, MD: http://phoenix-cfs.org/IntChia1.html http://phoenix-cfs.org/IntChia2.html

Similarly, work by Jose Montyaya at Stamford has shown that CFS caused by Human Herpes 6 (HHV-6) or Epstein-Barr virus (EBV) can be treated by the administration of the anti HHV-6 and EBV drug "valganciclovir". Again, this provides strong evidence that HHV-6 and EBV are the causes of these sub-types of CFS, not to mention the great benefit to patients.

GOOGLE SEARCH REF: http://www.google.co.uk/search?q=Dr+Jose+Montoya+Stanford+University+HHV-6+valganciclovir+OR+ganciclovir+chronic-fatigue-syndrome

Most of this groundbreaking advancement in CFS was unveiled at the International Symposium on Viruses in Chronic Fatigue Syndrome, in Baltimore, Maryland, June 2008

GOOGLE SEARCH REF: http://www.google.co.uk/search?q=Baltimore+2008+Conference+viruses+chronic-fatigue-syndrome

FOR GREAT VIDEOS OF THE SYMPOSIUM, SEE HERE: http://www.scivee.tv/node/7965/video

These are very exciting times for CFS, and for the people who suffer this condition. —Preceding unsigned comment added by Drgao (talk • contribs)

Lacking publication in a peer-reviewed journal, this isn't really the appropriate source to adjust the page. The presentation is more than a little WP:NPOV to me. WLU (t) (c) ^{(rules - simple rules)} 23:22, 29 November 2008 (UTC)

One source that I believe I've added before is:

• Chia JKS, Chia AY (2008), "Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach", Journal of Clinical Pathology", Jan;61(1):43-8 Guido den Broeder (talk, visit) 23:34, 29 November 2008 (UTC)

The main website of the foundation [3] of the conference [4] states that Anthony Komaroff has prepared a lay summary for patients [5] and that the scientific summary will be published soon. Perhaps when it is, it will be possible to search through the presentations to see if they have already been published in peer-reviewed journals. Some may be published later on, although this might take a while: for example, I remember reading about PMID 18942064 (electronically listed in October 2008) in the summary of the 8th International Association for CFS/ME conference (held in 2007). - Tekaphor (TALK) 06:53, 30 November 2008 (UTC)

Anyway, for those who are interested, the summary given at the end of the HHV-CFS conference document mentioned above ([6]): "CFS was named and defined only 20 years ago, although a similar illness had been described in the medical literature for hundreds of years. The possibility that CFS is often triggered by infectious agents has been widely discussed and debated. Few scientists have argued that a single novel infectious agent is responsible for CFS, in the way that HIV is the central and necessary cause of AIDS. Indeed, most illnesses caused by infectious agents can be caused by multiple different types of infectious agents. For example, bronchitis, gastroenteritis, hepatitis, urinary infections, and the common cold are each caused by multiple infectious agents. This conference presented evidence that a handful of infectious agents are plausible triggers of CFS. The evidence was both direct—associations between an infectious agent and CFS—and indirect—evidence of an immune response in CFS that suggests the body may be attempting to battle an infectious agent. Altogether, both proponents and opponents of the theory that CFS can be triggered by infectious agents had much food for thought." - Tekaphor (TALK) 06:53, 30 November 2008 (UTC)

Hi, WLU and Tekaphor. Thanks for reading the info I wrote on the International Symposium on Viruses in Chronic Fatigue Syndrome.

I agree with all your points: in particular that this is early days for this research, whilst awaiting peer-reviewed publication, therefore possibly too early to include in the main CFS article. It is also true that CFS is can be caused by many more infectious agents than just those considered at the Symposium. However, the viruses covered probably causally account for the majority of CFS cases, so there is significant relevance for patients in this respect.

Perhaps the most fascinating discovery publicized at the Symposium, which I briefly reiterate here, pertains to the enteroviral subset of CFS. The amazing fact is that enterovirus can auto-delete parts of its own genome, and in effect, turn into a different type of virus, the non-cytopathic enterovirus, which lives and replicates inside cells, but never (or rarely) breaks out of the cell.

Typical viruses will normally infect a cell, replicate at a rate of around 500 new virions per minute, and continue this way until the cell bursts and tens of thousands of new virions are released into the blood or surrounding tissues, ready to enter more cells, and continue this process. Sometimes a virus (for example, herpes simplex) will go into a latent state, and delay this bursting out (lysis) for some time - months or years. However, enterovirus actually becomes a different virus, capable of permanently living purely within cells. This is why it causes so many problems in CFS: enterovirus buries itself deep inside the cell, and is not easily defeated; well, that and the fact that the enterovirus has a rather nasty habit of infecting the hypothalamus and the brain stem, two brain areas known to be significantly compromised in CFS.

Furthermore, for decades there has been a mystery regarding why enterovirus seems to disappear from the blood and fluids after the initial prodrome fever, yet patients remain ill. If this research gets peer-reviewed and accepted, it will be the long-sought answer to this old mystery. It may also open avenues for a cure for this enterovirus subset of CFS, since we now know that we need to target and kill an intracellular virus, not a normal one.

This research may also have relevance to other enterovirallly-caused diseases, such as type 1 diabetes, which evidence indicates may be caused by persistent Coxsackievirus B4.

By the way, not directly related, but on the subject of the viral explanation of CFS, new research helps, in part, explain why chronic viral infection can create a depressed mood: in such infection, there is a higher level of interferon alpha, one of the metabolic responses to infection, and interferon alpha tends to lower serotonin levels, thus depressing mood. This also explains why patients become depressed during interferon alpha intravenous therapy. There are other mechanisms that create or contribute to overall depression in CFS patients, but I mention this interferon alpha one just because it is new.

In summary: it is probably too early to put the non-cytopathic enterovirus research in the main article on CFS, but it is defintely something to keep an eye on.

Drgao 01:03, 2 December 2008 (UTC)

Interesting. So perhaps hidden viruses aren't necessarily "the modern equivalent of evil spirits and swamp gas" after all. ;-) It could help to explain the upregulated gene expression involving "immunologic disease and function ... immune response, and infection" (PMID 19007540). As for infection and depression, I noticed that in some descriptions on ME, emotional symptoms and even weeping was observed especially in the onset or early stages too. I'm guessing it's more complex than serotoninergic activity, but good point. A peer-reviewed paper would be a noteworthy read. - Tekaphor (TALK) 07:07, 3 December 2008 (UTC)

Thing is, virologist are now discovering that many more diseases have a viral aetiology. This is coming to light thanks in part to metagenomics, in which the presence of a virus (or other microbe) in body tissues can be detected merely by its genetic fingerprint. Metagenomics thus makes it much easier to pinpoint a virus (or other types of microbe) hidden in body tissues. At present a whole range of diseases with previously unknown causes are now being pinned down to probable viral causes. These include: multiple sclerosis, Alzheimer's, breast cancer, obsessive compulsive disorder, motor neurone disease, certain types of depression, and many others. That chronic fatigue syndrome is also being more convincingly connected to viral aetiologies is just part of this larger picture; of finally realizing the causal connection between infectious pathogens and many diseases.

All the human species requires now is some effective antiviral medicines, or some wide-coverage vaccine, and then with luck we might say goodbye forever to a whole bunch of serious diseases.

Drgao 23:06, 6 December 2008 (UTC) —Preceding unsigned comment added by Drgao (talk • contribs)

Here is a reference to a peer-reviewed and published journal article of Dr John Chia, and the discovery of non-cytolytic enteroviruses in the stomach biopsies of chronic fatigue syndrome patients: http://www.scribd.com/doc/3155526/CFS-ME-and-the-digestive-system

Recommended reading in this article: see the Take-Home Messages on page 6.

Drgao 20:11, 12 December 2008 (UTC) —Preceding unsigned comment added by Drgao (talk • contribs)

Thanks! This is PMID 17872383. When it comes to all the diseases mentioned above, viruses could be a major or main contributing factor, rather than the sole cause. Genetics and perhaps some additional environmental factors (nutrition, exposure to toxins/pollution, neurocognitive fitness, psychosocial situations) could also play some varying role for some of them. A good way to view the complex interaction of these is to consider them in terms of increasing the probability of a type of outcome. We are getting off-topic, but still. I share your (long-term) optimism for solutions, but unfortunately it probably won't be very easy or simple. I could be wrong though, I'm just used to seeing many things as complex shades of grey. - Tekaphor (TALK) 04:16, 15 December 2008 (UTC)

Cultural references to chronic fatigue syndrome

The page Cultural references to chronic fatigue syndrome is still a stub. If this is all there is, does it need a separate page? Guido den Broeder (talk, visit) 00:32, 30 November 2008 (UTC)

Perhaps it could go in the "Society and culture" subsection of the main CFS article? - Tekaphor (TALK) 06:25, 30 November 2008 (UTC)

I agree. RetroS1mone talk 09:33, 30 November 2008 (UTC)

Exaggeration of CBT effectiveness

In the lead sentence of the CBT subsection in the CFS treatment article, it states that CBT "results in improvements in about 70% of patients". The reference given is PMID 16443043 (which in the full-text seems to cite PMID 11179154). However, the next paragraph in the article describes the recent Cochrane review which showed the statistic to be more like 40% (with the long-term effect in doubt). So I'd like to know why one single study with a much higher success rate than systematic reviews is given preference in the lead sentence as a "matter of fact" statement? Just imagine the editing furor that would occur if this was done in the subsection on essential fatty acids. - Tekaphor (TALK) 06:21, 30 November 2008 (UTC)

Well it is a secondary source in a very high journal, Lancet. WP is based from sources like that, see medrs, we do not do OR to second guess the Lancet. When you have a similar quality source saying what you agree with pls put in. RetroS1mone talk 09:36, 30 November 2008 (UTC)

The Lancet also published criticism on this very source, twice, because they base their conclusion on one article that used a deviant definition of the disorder (requiring only fatigue) and flawed methodology (they imprint on the the patients that they are getting better, and then ask by teleophone whether they feel it, instead of doing objective measurement). It is not a reliable source and doesn't reflect what is said in the related section in this article, so it should certainly not be singled out to put in the lead. Guido den Broeder (talk, visit) 10:50, 30 November 2008 (UTC)

well you can add criticism, was it letters to editor or what, but remember we go on medrs and systematic reviews are better then letters to editor. It is possible the review is wrong!! IT is still reliable til another systematic review a better one newer takes it a part. WP:RS WP:MEDRS. RetroS1mone talk 11:25, 30 November 2008 (UTC)

Reliability depends on the methodology. The guideline merely provides an indication when it comes to types of publications, it is not a law. Guido den Broeder (talk, visit) 11:30, 30 November 2008 (UTC)

Yes in real life. In WP reliability depends on source reputation. Look at methodology and decide you want it or not, that is original research. Reviews in Lancet and JAMA are good as you get on WP medrs. RetroS1mone talk 11:34, 30 November 2008 (UTC)

• Proper sourcing always depends on context; common sense and editorial judgment are an indispensable part of the process. (WP:RS). Guido den Broeder (talk, visit) 11:57, 30 November 2008 (UTC)

The word review is being bandied about here as if all reviews are equal. They are not. The Cochrane review was a systematic review. The Lancet article was an old-fashioned unsystematic review, basically a discussion piece - definitely not as 'good as it gets'. But it's being defended here by User:RetroS1mone to promote a single RCT from 2001 - in the lead paragraph, taking precedence over the more reliable Cochrane conclusion in the second para. I believe that's called sopaboxing on WP. A single RCT should never be cited as the basis of a general conclusion, as it is here, especially on such a sensitive and controversial topic. Sam Weller (talk) 13:08, 30 November 2008 (UTC)

Hi RetroS1mone, you said, "IT is still reliable til another systematic review a better one newer takes it a part." Exactly, so to reiterate, with methodological issues aside: the 70% figure was briefly mentioned in the Lancet review paper (non-systematic overview about CFS), whereas the 40% statistic is from a Cochrane systematic review of multiple studies on CBT specifically. Furthermore, the Lancet paper was published in 2006, whereas the Cochrane paper was published in 2008. Surely the latter paper has more weight according to your own statement? So, perhaps we do "question the Lancet" in this instance. ;-) _Tekaphor (TALK) 13:17, 30 November 2008 (UTC)

Thanks Sam Weller, you beat me to it! I think RetroS1mone simply misunderstood my initial objection, otherwise wouldn't have raised "MEDRS" and "OR" - Tekaphor (TALK) 13:20, 30 November 2008 (UTC)

I've changed the text to reflect the above. Guido den Broeder (talk, visit) 13:37, 30 November 2008 (UTC)

But the 70% from a single RCT is still there in the lead para. I suggest removing the Dutch figure altogether - their opinion on the general issue can remain for the time being. I'm reluctant to edit it myself, as my straightforward edits calling for citations in the Wessely biog led to personal abuse from the same CBT proponent. Sam Weller (talk) 14:16, 30 November 2008 (UTC)

I notice the cherry-picked 70% study is also cited here as if it's the whole truth: Chronic_fatigue_syndrome_treatment. Sam Weller (talk) 15:37, 30 November 2008 (UTC)

Pls do add the Cochrane it is a reliable source but do not say the other one is not a good source, they should both get cited. Pls do not call me a CBT proponent, i just see the literature says it and GET are the only good treatments proven now, and for some reason so called "patient advocates" want patients not getting good treatments bc it makes them feel better about them self bc of antique ideas about psychological problems, that is sad and counter procutive and hurts patients for selfish reasons. you should all be a shamed. RetroS1mone talk 19:41, 30 November 2008 (UTC)

I reworded both the mainpage and subpage. We shouldn't have to feel "ashamed" for demanding accurate information and representation. When looking at the literature and MEDRS that you brought to our attention, the 40% figure has much more weight than the 70% figure accordingly, so why push for a single study to be given equal status in the leading statement to a systematic review? What most "patient advocates" seem to want is the appropriate recognition for the reality of their symptoms, and effective treatments without the caveatless hype that usually accompanies them. - Tekaphor (TALK) 10:48, 1 December 2008 (UTC)

Sorry Tekaphor i get very frustrated w/ Guido and i did not mean unloading at you. You should have accurate information, you deserve that and more. 40% and 70% are from different studies, the studies have different outcome measures. Problem w/ CBT and similar treatments is, part of it is you have to give it a chance and be positive about it, literature says people that start w/ negative attitude and saying it is all physical and putting down psychological do not do as well w/ CBT. So my opinion, organizations that tell patients CBT is crap and demeaning are hurting patients. And editor that has the business, cutting everything psychological out from article bc they do not like it are hurting patients, but the main thing is, they are going against medrs that is the relavant thing on WP. RetroS1mone talk 02:25, 2 December 2008 (UTC)

RetroS1mone: The Prins 2001 study was included in the Cochrane review, so the article is wrong to state "Different trials of CBT use different measures of outcome, and some studies report higher success rates (as high as 70%[48] and 73%[49]) than those reviewed by Cochrane". And here you talk as if the 40% and 70% are just different results from 2 equivalent studies. They are not. Prins's 70% is merely one study of the 15 in Cochrane. The Cochrane weighted average of results supersedes the individual ones. You might also like to read the Cochrane comments on bias - Prins is by no means a reliable study, since there are large areas of uncertainty as to how it was conducted. Please stop trying to boost CBT's efficacy by cherrypicking one study that appears to support your agenda. Sam Weller (talk) 21:55, 2 December 2008 (UTC)

I do not have agenda, just going by medrs when that is "agenda", pls assume good faith. I do not say Cochrane and one study have same weight, that is why Cochrane comes first. RetroS1mone talk 23:41, 2 December 2008 (UTC)

Also what is "Prins2001" the Prins is a 2006 review in Lancet, that is a damn good reliable source. RetroS1mone talk 23:44, 2 December 2008 (UTC)

Since it's not 100% conclusive, since no single treatment has ever been resolved as consistently effective, why not phrase it as such? What do people think of something akin to "positive results have been suggested for X therapy, though the actual effectiveness is not conclusively demonstrated"? That's my bastardized review based only on talk page contributions. If they're both reporting some success, but neither reports complete success, they're essentially agreeing on a point, but disagreeing to degree. Leave out the actual numbers and state instead that there is some promise but much doubt. It's not like there's a deadline and this will be the final version - ambiguity is OK. I've always disliked including specific numbers and p-values - it assumes the reader has advanced statistical and methodological training, and that the numbers speak for themselves. Can we leave them out? WLU (t) (c) ^{(rules - simple rules)} 02:11, 3 December 2008 (UTC)

Well the problem is, that is true on all most all treatments for all diseases, no X therapy is conclusively demonstrated with total effect. But do we need numbers, i do not know, i agree it is easy mis-representing them, like the Cochrane review it has 15 studies, in four of them CBT is 40%, in another three it is 48%, people here are saying Cochrane says 40% but it is more complicated. I think some numbers are good, we should show a range from reliable sources, reviews ,but say also CBT is not effective in all patients, i think all the sources agree about it. RetroS1mone talk 03:45, 3 December 2008 (UTC)

No worries. I won't deny that some advocates can seem a little extreme. However, when considering how people with ME/CFS symptoms have been badly treated over the years, precisely because they were deemed a psychosocial problem, I think advocates are totally justified in their general frustrations and suspicions with psychosocial approaches, regardless of potential misinterpretations. Hyping up CBT probably increases it's effectiveness, but perhaps at the cost of false hope and lost money for the other 60%? The degree of effectiveness is in question, and this must be reflected in the article. I agree that numbers (used carefully) are good, but the text here only describes the proportion of people meeting CFS criteria that will "improve" with CBT, it doesn't state how much improvement there is.

There is disagreement with the notion that CFS is mainly a psychosocial problem that must be treated with psychotherapy, especially when the results are relatively modest and even contested or methodologically flawed. In such an environment, statements like "CBT is an effective treatment..." and "Patient characteristics predicting a poor outcome of CBT include..." are too vague and misleading without quantification. Perhaps Prins et all 2006 do their own "cherry picking" on CBT/GET (thanks Sam Weller) since it isn't a systematic review, yet it seems to be the most cited reference in the entire CFS article and the contents/citations used within are talked up as unquestionable. To explore the possible hypocracy of this stance, I notice how the Hooper 2006 review is published in the J Clin Pathol by the BMJ Publishing Group, but it's treated with disdain; at Wikipedia we are apparently supposed to view the contents as dubious because it's allegedly an anti-psychiatry rant by Hooper, yet the contents/citations of the Prins review goes unquestioned simply because it's a review published in the Lancet?

_Tekaphor (TALK) 06:48, 3 December 2008 (UTC)

Thanks Tekaphor, the politeness is VERY appreciated. If we can't agree, I suggest marshal the best arguments for and against, then request some advice from WP:MED on how to best portray it - they're very reasonable people, and there's a lot of experience there on how to portray complicated numbers in medical articles. I might be able to review and give a more reasoned opinion on the situation (not that my opinion is in any way a panacea, but at least I'll be able to understand the arguments better). Really, ultimately and sadly, I would guess that the most crippling factor is that no-one is sure of much about CFS. WLU (t) (c) ^{(rules - simple rules)} 12:00, 3 December 2008 (UTC)

Compare Prins2006 and Hooper 2006, alot of factors to think about.

What is impact factor of J Clin Pathol and what is impact factor of Lancet?

How many publications on CFS and ME by Prins and Bleijenberg and van der Meer on Medline? Hundreds.

How many publications by Hooper on CFS ME on Medline? One.

What is the expertise from Prins and Bleijenberg and van der Meer? What is expertise of Hooper? Who associate with fringe organizations and do activism, who most doing research and treatment? My opinion i am very comfortable on Lancet and Dutch group, not so much on Hooper who writes more editorial then research review outside frome own expertise area which is biochemistry. RetroS1mone talk 03:42, 4 December 2008 (UTC)

The point wasn't about Prins et al vs Hooper; your objections to Hooper supports my original objection to the claim that we don't second guess the contents of a review paper simply because it's published in a respected journal. Anyway, the way the figures 70% for CBT and 55% for GET were worded as a matter of fact betrayed the fact that these were not from a systematic review on CBT or GET, which is one main reason I questioned it. Your editing response to this criticism (selectively adding 3 primary sources that are highly favourable towards CBT) only makes the problem worse, since it appears to lean towards a POV synthesis (see my post in "Mechanism section"). - Tekaphor (TALK) 13:07, 4 December 2008 (UTC)

CBT/GET is being boosted beyond the evidence here and on various subpages, making this discussion difficult to keep track of. I have no opinion on Hooper et al. (not having read them) but Tekaphor is correct: the unsystematic overview by Prins is being used all over the place in preference to the systematic review by Cochrane. The Cochrane review gives an *overall* figure of 40% - and mentions lack of evidence for CBT at longer-term follow-up:

"The review showed that people attending for CBT were more likely to have reduced fatigue symptoms at the end of treatment than people who received usual care or were on a waiting list for therapy, with 40% of people in the CBT group showing clinical improvement, in contrast with 26% in usual care. At follow-up, 1-7 months after treatment ended, people who had completed their course of CBT continued to have lower fatigue levels, but when including people who had dropped out of treatment, there was no difference between CBT and usual care."

WLU's solution is one I agree with - cut out the naive use of percentages, and use standard terms like 'promising', 'needs further replication with different patient groups'. I'd also suggest that failure to mention the disappointing results at 1-7 months is cherrypicking. There were huge numbers of dropouts in some of these trials. Sam Weller (talk) 15:14, 4 December 2008 (UTC)

Another suggestion was to bring it up at WP:MED - there's a lot of expertise there we could tap, and most have access to full journal volumes. We should get it to the point where we agree we can't go any further, then solicit an opinion on the appropriateness, representativeness and overall weight. WLU (t) (c) ^{(rules - simple rules)} 20:51, 4 December 2008 (UTC)

Sounds like a plan. Perhaps PMID 17426416 ("69% no longer met CDC criteria") which I mentioned yesterday below in the "Mechanism section" [7] isn't covered by any systematic review because it wasn't a RCT, it was uncontrolled with no follow up. I like percentages, but only one systematic review uses them for CBT, and only for the ratio of participants which responded, not for the amount of improvement. CBT seems partially effective in some patients, is not a cure and some aspects are in question. The summary on the CFS mainpage could be like: "<Insert introduction.> CBT trial results have varied. <Insert conclusions of systematic reviews.> Patient groups dispute the efficacy of CBT trials, and the discrepency between patient surveys and published trials has been noted by the PACE trial group."

Sam Weller makes a good point, this issue involves GET too (often a part of CBT). It seems patients are blamed when CBT and/or GET fails them, and they have objections to methodology and claimed safety/efficacy. The severely affected and/or long-term in particular question if the results of GET research applies to them, especially when; (1) a large proportion with "CFS" don't experience the post-exertional component and this generally isn't required for study inclusion, (2) lack of evidence for the role of "physical deconditioning", (3) patient surveys are indicating failed or adverse effects from both CBT and GET, (4) CBT/GET trials usually use subjective outcome measures and often have other issues. (5) pathological findings in ME/CFS which worsen after exercise or are at least a cause for concern. - Tekaphor (TALK) 16:40, 5 December 2008 (UTC)

Has there been much/any research into patients who drop out of CBT trials? The Cochrane metaanalysis included them in longterm followup, and CBT was then no better than 'usual care' (= doing nothing). Pure speculation, of course, but this might still overestimate benefits in some groups, since Cochrane looked only at numbers who improved (40% CBT v. 26% controls), not the size of the improvement. If patients dropped out because they became worse during/after CBT/GET, and the size of the worsening were included, you might even find CBT/GET less good than doing nothing.

On the general topic, I found this critical but broadly sympathetic review by Dr Derek Pheby of a book about the psychiatrization of unexplained illness: http://www.positivehealth.com/book-view.php?reviewid=150 Pheby is clearly an expert in CFS/ME. Is it worth citing it, as a level-headed consideration of the claims of the 'patient groups'? Sam Weller (talk) 10:57, 6 December 2008 (UTC)

Interesting that the inclusion of dropouts negate the effect, I've read accusations that some researchers exclude dropouts from study findings. There appears to be little research about drop-outs and adverse effects. Both Cochrane 2008 systematic reviews state that no data was reported for adverse effects. The CBT Cochrane review [8] states "Patients assigned to usual care were less likely to dropout of treatment than those assigned to CBT." Dropout is further discussed on page 15 (p19 in adobe reader) and it also raises issues of selection bias and response bias in the "Quality of evidence" section. With different information from a range of sources, questioning the psychosocial approach isn't the same as denying the relevant aspects. Patients (supposedly) have secondary gain conflicts, yet the main CBT proponents are (supposedly) unbiased despite career reputations and $100-$200/session at stake?

The GET Cochrane review [9] states: "At 12 weeks, those receiving exercise therapy were less fatigued than the control participants (SMD -0.77, 95% CIs -1.26 to -0.28). Physical functioning was significantly improved with exercise therapy group (SMD -0.64, CIs -0.96 to -0.33) but there were more dropouts with exercise therapy (RR 1.73, CIs 0.92 to 3.24)." (later saying the difference is non significant). It implies on page 7 (p10 in adobe reader) that higher intensity exercise may cause higher dropout and poorer outcome. GET isn't supposed to worsen CFS, but unfortunately when it fails, instead of questioning the efficacy of applying exercise to a post-exertional illness, common patient experience is ignored as anecdotal, or like (PMID 17561700) it's recommended that consultating a psychiatrist "is necessary".

The Chambers et al 2006 systematic review [10] mentions: "Some studies of behavioural interventions have reported significant rates of withdrawal from treatment or lost to follow-up, as high as 20–40% in some studies. Withdrawals not related to adverse events may reflect patient dissatisfaction with treatment. Our review did not find any new evidence of adverse effects (sufficient to cause withdrawal from treatment) associated with GET or CBT. However, reasons for withdrawals were often poorly reported and should be investigated in more detail in future studies." The PACE trial is unlikely to resolve all these disputes either, especially considering how it's being criticized for dropping the accelerometer. CBT/GET appears promising for some and not others, while other interventions/treatments haven't received the same attention/funding. As for the book review, thanks for posting it; interesting that Dr Pheby supports most of the assertions, although it's unlikely that this will be accepted here as a "reliable source", especially when the author (M J Walker) is much disliked at the Simon Wessely talkpage. ;-) ... _Tekaphor (TALK) 03:22, 8 December 2008 (UTC)

The range of opinion and findings in medrs is important. Cochrane says 48% improvement in 3 studies, 40% in 4 other ones. A review in the Lancet says 70% improvement. One study says up to 69% recover not just improve. All medrs. first two both secondary sources by recognized experts just like medrs says. Sam Weller, "you might even find CBT/GET less good than doing nothing," that is not medrs it is personal speculation. A website, that is not medrs. Speculation about drop outs is speculation and of course when people drop out from treatment, any effective treetment they will not get better. Lots of places where people can speculate and give own opinions about medical research on message groups, patient websites and stuff. WP and WP talk pages is not where you do it. Pls, people when yhou want to speculate do it somewhere not on WP, it is not a soapbox for your personal ideas about an illness. Thx, RetroS1mone talk 03:56, 8 December 2008 (UTC)

RetroS1mone: Sorry you didn't understand I was asking if a researchable hypothesis (CBT is worse than doing nothing if the extent of adverse effects is completely accounted for, including in all dropouts) has been covered in the literature. Tekaphor did understand, and looked for the data. I have no opinion about CBT for CFS, except hoping patients get the best treatment. Concerns about under-reporting of adverse effects of any and all treatments hardly make a soapbox. Tekaphor makes another good point about the possibility of COI among CBT researchers. Sam Weller (talk) 15:29, 8 December 2008 (UTC)

If the inclusion of dropouts negates the statistical significance of CBT on the entire group (not merely reduces it), despite dropouts being in the minority and generally counting as neutral rather than negative, this suggests a surprisingly modest effect for CBT. As for the contrasting "69% no longer meeting CDC criteria" study (the abstract doesn't give baseline severity, but a stricter definition of "recovery" brings that figure down to 23%), this is the only trial mentioned in the article which isn't already covered by a systematic review, so how well does this non-RCT with no followup stand up to systematic reviews on the much cited WP:MEDRS? Perhaps not very well. Anyway, there is a whole subpage to include the full-range of findings, but the "Psychological therapy" section on the mainpage has recently bloated up in selective favour of CBT. Back in early 2007, the CBT/GET dispute was resolved using a balance of both the positives and negatives mentioned in the systematic review(s). - Tekaphor (TALK) 06:35, 10 December 2008 (UTC)

I'm equally dismayed by the uncritical hyping of CBT. People would not stand for similar boosting of vitamins or fish oils, so what's so special about Vitamin CBT? And apologies for not objecting earlier to the 69% - in spite of my scepticism about the headline figure, which turns out to be 23%. I assumed it came from an RCT, not a mere cohort study. With the reporting deficiencies Tekaphor points out, it doesn't stand up, and ought to be removed. Sam Weller (talk) 18:24, 10 December 2008 (UTC)

When you say "uncritical hyping of CBT" you are taking a side sorry Sam Weller, that is not "I have no opinion about CBT for CFS". I am a person that has no opinion about CBT for CFS just what I am reading in journals like Lancet. See problem is, there is not reliable sources on vitamins and fish oil, there is reliable sources on CBT. Who cares what article said when it was edited in 2007 by a group of ME agenda patients, it is improtant now it is based on medrs. Add stuff from medrs, that is great, if you do not want do that, then do your speeches some where else, pls, I am not trying on being mean, it is just not right for WP arguing about your opinions, pls use medrs. Thx RetroS1mone talk 06:13, 13 December 2008 (UTC)

Wouldn't it be more productive to address Sam's concerns rather than speculating about motives? WP:MEDRS doesn't say Lancet papers are unquestionable, and instead seems to suggest that systematic reviews trump the specific Lancet paper in question. It also states "Make readers aware of any uncertainty or controversy."; the systematic reviews have positive conclusions but are generally riddled with caveats (which are apparently glossed over here). The systematic reviews cover all primary studies in question, except one uncontrolled study with no follow-up. There is plenty of room on the subpages for the full-range of research, but both the "Mechanism" and "CBT" sections are in danger of bloat. But now I'm just repeating myself. - Tekaphor (TALK) 04:14, 15 December 2008 (UTC)

Moved from article

I took from article, I do not think Ramsay is notable, there is only one RCT i see that used it and it also used CDC 1994. Also this is how it should be called, London criteria, that is how the literature calls it.

• The London criteria, based on a definition of myalgic encephalomyelitis by AM Ramsay, who had investigated an outbreak of an unknown illness at the Royal Free Hospital in 1955.

thx. RetroS1mone talk 09:38, 30 November 2008 (UTC)

Ramsay didn't research CFS. He is notable for his work on myalgic encephalomyelitis, so that's where he should be mentioned. The best reference would furthermore be to the definite description of his definition, which was published shortly after his death in

• Ramsay AM, Dowsett EG, "Myalgic Encephalomyelitis -- Then and Now: An Epidemiological Introduction", in: Hyde (1992), chapter 4, pp. 81-84, along with a reprinted article of Ramsay's research with this definition. Guido den Broeder (talk, visit) 11:06, 30 November 2008 (UTC)

Well except their is not reference to it like there is to "London criteria" in Lancet et cetera. Guido you know alot of things, but we go on medrs at WP, may be Wikisage is different?? RetroS1mone talk 11:19, 30 November 2008 (UTC)

Wikisage is certainly different, for instance it allows an article on ME, but not regarding reliability. You are far too selective in your use of WP:RS. Guido den Broeder (talk, visit) 11:23, 30 November 2008 (UTC)

Perhaps we should not cite the Ramsay criteria precisely because they are intended for the diagnosis of ME to the exclusion of CFS. I agree with RetroS1mone that WP:MEDRS would grade Hyde's book as a very poor source. I don't think we need to discuss editorial policies of other wikis on this talkpage. JFW | T@lk 12:32, 30 November 2008 (UTC)

JFW, can you please explain this edit [11] (the removal of PMID 17293137 as "removed source that doesn't back up FM claims"). The abstract states: "In the absence of obvious biochemical/metabolic abnormalities and in the lack of neurological symptoms the complaints are frequently labelled as fibromyalgia or chronic fatigue syndrome." I don't have access to the full-text, did you remove it because they didn't use an appropriate citation? - Tekaphor (TALK) 10:56, 1 December 2008 (UTC)

That is the most tangential reference I have ever seen. It is not an article on CFS or FM. It is an article about MERRF syndrome, specifically about those with the mtA8344G mutation in mitochondrial DNA. I suggest a reference is found that meets WP:MEDRS criteria. JFW | T@lk 00:07, 2 December 2008 (UTC)

OK. - Tekaphor (TALK) 13:18, 4 December 2008 (UTC)

Note to all

comment unrelated to improving the main page hidden - please do not edit, take concerns to the appropriate users' talk page

Since it is apparently alright for other users to modify my talk page contributions, this is my last comment on a talk page other than my own. I hope it will stay untouched long enough for more than one user to read it. Guido den Broeder (talk, visit) 00:53, 3 December 2008 (UTC)

As far as I'm aware it's not permitted to modify anyone's comments on a talk page, except to delete them if it's your own talk page. Can you point to the edit where this happened? --sciencewatcher (talk) 01:21, 3 December 2008 (UTC)

SW, don't bother playing the game. In the past, Guido has said similar things many times - witness his "move" to wikisage. The more important point is, he won't be posting on this, or any other, talk page. Unwatch his talk page, and he has voluntarily removed himself from any controversial edits. Ever tried to make a complex point using only edit summaries? Do it often enough and you're likely to be blocked for edit warring. WLU (t) (c) ^{(rules - simple rules)} 02:04, 3 December 2008 (UTC)

I suggest this thread be immediately archived as a violation of WP:TALK (not a forum) and as a disruptive post per WP:POINT. Verbal chat 15:08, 3 December 2008 (UTC)

If we just let it die, it'll get archived eventually. If we archive it right away, we get squaked at for, God knows what, probably stifling free speech. The best way to move forward - start a new thread below this one to discuss improvements to the page. It's patently obvious that this is a waste of time and not actually contributing to the improvement to the page. Happens all the time, but over-reacting is fuel for the fire. Anyway, I've divhid it, that's the next best thing. WLU (t) (c) ^{(rules - simple rules)} 15:33, 3 December 2008 (UTC)

Mechanism section

Tekaphor, you added the original text, what do you think of my rewording? I'm again trying for a more generic presentation as well as a bit of a wikification. The year of publication and specific methodology is useful and relevant to the editors of the page, but to arguably less so to the reader - the only time I'd think Brittanica would include info like this would be if it were the study that revolutionized a field. And the only way we'd know this would be retrospectively. Ergo, I've taken out the year and methodology tried to maintain the relevant ideas and links.

Also, the mechanism section seems a bit of a mess - does it need a reorder? Is it getting too specific? Should specific study results be deferred to the main article? WLU (t) (c) ^{(rules - simple rules)} 21:10, 3 December 2008 (UTC)

WLU I am agreeing we should not go back to the old way of taking every primary source and putting it in as "WLU et al in a 2007 study said this, and RetroS1mone in a 2008 study responded this" it is to prone on synthesis, that is how these pages got in a mess in first place. RetroS1mone talk 03:23, 4 December 2008 (UTC)

WLU, your wording is fine. Perhaps it can be further reduced to only the immune/infection aspect since it was added in support of the immune activation hypothesis. As for which type of cell death, I cannot say (from memory, I think both types have been reported in other gene expression studies). I'm not sure how large the summaries of subpages should be; some articles (at Wikipedia in general) have rather large summaries, but might be proportionate to the size of their subpages. The summaries on the CFS article are relatively small. The brief summaries on the main page should simply be a condensed generalized version of the subpages (which themselves need work), right? - Tekaphor (TALK) 13:01, 4 December 2008 (UTC)

RetroS1mone, the issue of synthesis is difficult to pin down and it could be argued that the entire article is a guided synthesis where the main difference in content to an outright public synthesis is additional wording like "studies suggest", "so and so said", etc. Using secondary sources doesn't preclude synthesis either. The "Mechanism" section may indeed be prone to synthesis, but what about your recent work on the "Psychological therapies" section where only the most optimistic CBT statistics from 3 primary sources were added? If Cochrane didn't review these primary sources as stated, perhaps the question should be why, since it's a very recent review. Besides, we have the Chambers et al 2006 systematic review on the subpage (abstract: PMID 17021301 | full text: [12]) which included all these studies except for PMID 17426416 ("69% no longer met CDC criteria") which was published the following year. At this forum I have witnessed many papers being questioned/removed because a systematic review took preference; if someone had added 3 primary sources on studies casting doubt on CBT, I'd bet real money that there would be citing of "MEDRS", "OR", "SYN", "NPOV" etc.

The overall evidence suggests that CBT is at least partially effective in some people that meet CFS criteria. That's not really in dispute; what is however, is the degree of effectiveness, the outcome measures, the criteria used, and possible publication bias (all mentioned by systematc reviews if I remember correctly). MEDRS says "Make readers aware of any uncertainty or controversy." Perhaps some people would prefer to blame the CBT inconsistencies on patients rather than sloppy science, but there is controversy for reasons that go beyond the misleading accusations that "patients/advocates simply can't tolerate notions of being mentally ill". Fashionably ignoring the mind-body problem doesn't make it go away, and citing hypothetical inadequacy of the mind vs body dualism doesn't invalidate the criticism (or conflicting evidence) towards the psychosocial model of CFS and the claimed success of CBT/GET. Obviously the subject is complex and there is a whole separate subpage dedicated for this, so it should be moved there and the brief summary on the main page should simply be a condensed generalized version of the subpage.

_Tekaphor (TALK) 13:06, 4 December 2008 (UTC)

Note that MEDRS also cautions us regarding the use of primary sources - Wikipedia:MEDRS#Respect_secondary_sources (secondary sources for medical topics are summary/review articles, the results of an experiment are primary). Regards the sub-sections that have main articles, I'm certain there's guidance somewhere (I'd have to dig), but I would suggest the best option is to get the main article to the best state it could be, then adjust that lead to be in sync with the body of the article, then essentially port that lead into this article. The lead and the CFS summary should basically do the same thing - summarize the state of the art.

If we're really not sure about the CBT, the best way to move forward if we're not using WP:MED, would be a WP:RFC. Outside input can be used to settle disputes, it's also good for simply generating outside opinions and would also force each 'side' to re-state their positions. If we can agree that CBT is effective in some circumstances and some people, but not always and overall it's uncertain (RetroS1mone, do you agree?), that may be the best way to portray it. Promising, but unproven, is a valid way of portraying results. I'll have a look at the section and sources to see if I have an opinion. WLU (t) (c) ^{(rules - simple rules)} 21:12, 4 December 2008 (UTC)

A couple points

• If Prins' statement that Both "neuroticism and introversion" may predispose people to getting CFS is speculation at odds with research, then the research that it is at odds with should be presented for discussion.
• The CDC is explicit that there are no tests for CFS, so it is incorrect to state that this is not in source. See here.
• From here - "The other side of the coin is that, in accepting an organic explanation for their condition—which might be viruses, toxins, infections, allergies and so on—some sufferers equally vehemently reject psychological causation and with it psychological treatments." That seems adequate for Chronic_fatigue_syndrome#Mechanism. If not, please discuss here because two editors have now reverted to some form of this sentence. WLU (talk) Wikipedia's rules:^simple/_complex 14:55, 12 December 2008 (UTC)

When you do not quote exact word from a source, a tendentious editor says that is not what source says or that is not in source, he says that bc he does not agree with sources like Lancet, just his tendentious editing. It is very sad we are talking aobut one editor here, without these disruption we could be improving article but now we are defending all the time sources like Lancet, it is very wierd and surealist. A statement in a Lancet secondary review source, an editor does not question that based from OR, but that is what a tendentious editor does most of time. RetroS1mone talk 06:22, 13 December 2008 (UTC)

Also note - this edit inserts a paper that references disease processes in general, and doesn't seem to justify a specific relationship to CFS - it's not mentioned in the abstract or title. So I removed the section. WLU (talk) Wikipedia's rules:^simple/_complex 04:08, 14 December 2008 (UTC)

Yes and we should not have long quote from primary source, its own paragraph. RetroS1mone talk 04:10, 14 December 2008 (UTC)

Follow-up regards this diff; the journal is not pubmed indexed (at least, I couldn't find it), it's older than the Lancet, it's not a review as Prins2006 is, and we're discussing a qualification below of that statement below. Also, if it's in the Lancet, it's got hefty support such that it should take precedence over Journal of Mental Health. Plus, we're specifically enjoined to respect secondary sources - no debunking reviews with primaries. WLU (t) (c) Wikipedia's rules:^simple/_complex 20:42, 17 December 2008 (UTC)

It's own "paragraph"? It was a single sentence! This area will always be under some dispute while the proper range of research isn't presented. It's inappropriate for either "side" of the debate to insist on only a single source to represent a complex issue (eg psychological aspects). - Tekaphor (TALK) 03:02, 27 December 2008 (UTC)

Neuroticism and introversion statement

Prins' statement is "In a review of personality characteristics, neuroticism and introversion have been reported as risk factors for the disorder.[48]", which refers to a paper co-authored by Prins which I haven't found on PubMed; [Hoogveld S, Prins J, de Jong L, et al. Persoonlijkheidskenmerken en het chronisch vermoeidheidssyndroom: eenliteratuuroverzicht (Personality characteristics and the chronic fatigue syndrome: a review of the literature). Gedragstherapie 2001; 34: 275–305.] In regards to the recent edit warring, in the full text of the older Dubbo paper (PMID 16950834) it's clear they investigated psychiatric factors. More specifically to the current issue, they measured for neuroticism; the overall conclusion was that psychological and psychiatric factors weren't predictors of post-infective CFS (neuroticism was only associated with more severe mood disturbance). The Australian 2002 clinical practice guidelines state that there is conflicting evidence of the role for personality factors.([13]). A more recent (published 2007) review on personality in CFS (PMID 17350740) found that the studies ranged from no evidence of to major differences, they stated that although personality seems to play a role in CFS it's difficult to draw general conclusions, and they argue that this is partly due to the "diversity and heterogeneity in study methods, patient populations, control groups and CFS case definitions."

I started looking into this a while ago and what I found is typical of CFS research, mixed results possibly leaning towards an association in some situations but with a bunch of caveats, which is why adding simple statements without clarification or comparison is problematic. It's also important to distinguish which "psych" factors we are talking about; they aren't all the same. On the specific issue of prior and current neuroticism/emotionality and introversion-extraversion in CFS, the results of a study using a twin registry (PMID 17088507) and CDC criteria states "Higher emotional instability and self-reported stress in the premorbid period were associated with higher risk for chronic fatigue-like illness in matched case-control analyses (odds ratios, 1.72 and 1.64, respectively). In co-twin control analyses, relative risk of emotional instability decreased to 1.02 whereas that of stress increased considerably to 5.81. There was no association between extraversion and fatigue." Another twin study (PMID 18624602) investigating 13 physical conditions (including CFS, but without accessing full-text I don't know how specifically or accurately this applies to CFS) found higher levels of prior neuroticism increased the likelihood of having a "physical condition", "with some associations attenuated when controlling for familial similarity."

A study on ME (PMID 1559114) found that personality scores displayed less extraversion and less psychoticism, but pointed out (in 1992) that the "direction of causality remains to be clarified" (abstract doesn't mention neuroticism, but full text might if using Eysenck's P-E-N model [14]). A study using the Holmes et al 1988 criteria supports the role of current and possibly prior neuroticism (PMID 1876640) but points out that a subgroup (20/58) "reported a lack of psychological symptoms or emotional disturbance contrary to the overall trend for the CFS sample". A study (PMID 8736462) found that those with concurrent depression (34%) accounted for most of the personality pathology in CFS. A study (PMID 9788031) found that "Obsessional and healthy neurotic defense levels predominated, which differs from historical comparison groups with dysthymia and panic disorder." Authors of a study (PMID 10340240) concluded that "Our results suggest that high scores on neuroticism and low scores on extroversion in CFS could be a reaction to chronic illness." I've mentioned the "Dubbo" study above, and a different study (PMID 8142830) had previously also found that neuroticism at CFS onset didn't predict outcome, with another study (PMID 12442562) finding that the postinfectious CFS group were "social extroverts" while the noninfectious CFS group were "neurotic and introspective". Two studies found similar personality profiles (including neuroticism) in CFS compared to multiple sclerosis (PMID 12670610) and rheumatoid arthritis (PMID 10616232).

_Tekaphor (TALK) 03:19, 14 December 2008 (UTC)

Tekaphor you are doing alot of good research, you should write about it, problem is WP is not where to do. Wikipedia medical articles use secondary sources. Prins 2006 is secondary source in may be best medical journal in World. It is may be totaly wrong and you are totaly right but it does not matter on Wikipedia, when you have problem on a secondary source write to the Lancet editors, if they retract then you can remove stuff from article. You are acting like this one sentence is a personal insult, it is not. It is not saying every person with CFS is neurotic or introverted, it says they are predisposing factors. Pls try to keep personal emotions from distort your NPOV on topic. Thx RetroS1mone talk 04:15, 14 December 2008 (UTC)

I would step back from the statement that Tekaphor is doing this purely out of personal motive; there's a lot of text there, and as impressive as the Lancet is, it's not everything. Does anyone have an electronic copy they could forward to me? The other thing I'd be interested in is the two responses to the article that pubmed points to (pubmed 16698404 and 16698406). Tekaphor - ultimately the authority for the statement comes from the Lancet, not the journals that Prins cites (the oversight is from their peer review board; if a statement passes that peer review without retraction, then it bears the full authority of the journal). HOWEVER! that doesn't mean we report it blindly. I read the statement in the article itself as quite mild ("High scores of neuroticism and introversion on psychological tests have also been associated with a predisposition to developing CFS.") but that doesn't mean other research shouldn't be presented. The most recent and best of the sources you cite above seem to be PMID 16950834, this isn't bad, PMID 17350740 would also be a good qualifier, PMID 17088507 also. CFS is controversial and ill-understood. Even with the lancet, there's still plenty of material that would be useful for demonstrating that not everyone believes the same thing. Can my more expert colleagues suggest a qualifying wording or sentence that uses the best of these references to indicate the some of the issues with the personality? Something along the lines of "Though personality traits have been associated with CFS (prins perhaps?) the association is not well understood and questions remain about causality, possible sub-types of CFS and..." works for me, but I will be the first to concede that I'm not guaranteed to be right. I would keep the statement but also adjust to it's clear that the association is not proven. WLU (talk) Wikipedia's rules:^simple/_complex 13:11, 14 December 2008 (UTC)

RetroS1mone, if I was so insulted about the neuroticism and introversion statement as you suggest, why would I also include supporting evidence for it? I presented notes of what I found, not copied it into the article, and I challenge you to demonstrate that I pushed a one-sided argument. Understanding a subject matter requires actually seeking a wide range of information and then deciding the appropriate weight, not simply selecting a "reliable source" to the exclusion of everything else without even looking into the issue. As far as I knew, Wikipedia is more about the acquisition of knowledge than bureaucracy; of course WP policies/guidelines apply, and I did present two secondary sources in the first paragraph. I never called for the outright removal of the Prins paper, and I find it ridiculous that demanding qualifiers for simple statements about a complex subject is being interpreted as emotional POV pushing.

The recent referrals to the unquestionableness of a single Lancet paper for several aspects of CFS are starting to wear a little thin; the citing of WP:MEDRS and blaming "patient agendas" for any opposition, these aren't really convincing. You seem patronizing about the value of secondary sources, but yourself added several primary sources on CBT for example, all much more optimistic than the relevant systematic reviews, none that were negative or critical, and giving them weight. Over time I have done edits both in support of and critical of CBT depending on the situation (perhaps a blunder), so I'm not buying speeches about how I'm biased and you're unopinionated. Anyway, claims of being "unbiased" are so common they are meaningless, yet co-presentation of conflicting information (which I make some attempt at) seems suspiciously rare by comparison despite purported stances of WP:NPOV.

_Tekaphor (TALK) 04:11, 15 December 2008 (UTC)

WLU, thanks for a more reasonable consideration. My main expectation is that if the research is diverse and conflicting, this article should say so and why, accordingly, as WP policies/guidelines allow. Perhaps the current wording isn't too bad, and I never said it should be totally removed, but the subject needs the qualifiers like you suggested, and maybe the wording was different before the edit warring between Retro and Guido and whoever began? I had hoped that by presenting more sources, the debate between them would be aided by other research rather than solely fighting over a single source. - Tekaphor (TALK) 04:11, 15 December 2008 (UTC)

Do you mind if I take the lazy position of "copy editor"? Suggest a qualifier you think is fair to the N/I statement/section, I'll have a look, suggest changes, if I can't think of any I'll paste it in? Frustration leads to anger, which leads to polarization which leads to bad faith instead of good; let me mediate between RetroS1mone and you if need be, I think both of you are doing good work, and I'd like to keep you both on the page. I really would like to de-escalate the conflict between the two of you, as I think you both represent the two sides quite reasonably and the page would be well served by you working together instead of against each other. WLU (t)/(c) Wikipedia's rules:^simple/_complex 13:52, 15 December 2008 (UTC)

Incidentally, an anon has mentioned the causality of results - did CFS cause the N/I, or did N/I cause, contribute towards or exacerbate the CFS? I loosely remember a similar comment in one of the above sources (I think, I could have come to that conclusion myself). Is it explicit somewhere? WLU (t)/(c) Wikipedia's rules:^simple/_complex 14:08, 15 December 2008 (UTC)

CAM for CFS

I noticed that Guido addded CAM as a treatment for CFS, and that his source (NIVEL, a Dutch research center) was questioned. I've heard before that CAM has some evidence for CFS. It took me about two minutes to find the University of Michigan's overview of the CAM evidence. It rates the evidence with 2/3 stars, indicating that it is preliminary. Vitamin B12 and magnesium are reportedly low in CFS patients, and other supplements have been tried with mixed success (based on a very quick reading). Thoughts? Can this page be cited, or some of the research within it? II | (t - c) 01:21, 21 December 2008 (UTC)

As I said at WP:RS/N, the general overview from the Lancet is a poor source for specifics. Better to go to more specific reviews. In that vein, I found PMID 18831878 (open-access full-text). PMID 18537652 is another one. PMID 16444659 focuses on botanical treatments for CFS. II | (t - c) 07:03, 21 December 2008 (UTC)

The NIVEL source is essentially a survey of patients and organisations, and does not provide actual medical evidence that CAM might be effective. I would rank it very low on a WP:MEDRS scale - it is a primary survey not published in a peer-reviewed source that indicates that 44.5% of CFS patients have consulted CAM providers within the last year. For Guido that might be a satisfactory source, but it is simply insufficient for the purposes of this article.

The most systematic review of CFS treatments is Chambers et al (PMID 17021301) which we are already quoting. Chen et al is hypothesis-generating only and does not propose treatments as such. Same goes for Gur & Oktayoglu. Tharakan & Manyam is not free, so I can't review it, but it does not seem to be a systematic review.

The UMich source is very hard to judge on its merits. It is attributed to Healthnotes and was last updated in April 2007. The exact provenance of its recommendations is difficult. Two stars means "contradictory, insufficient, or preliminary studies suggesting a health benefit or minimal health benefit". One star is "an herb is primarily supported by traditional use, or the herb or supplement has little scientific support and/or minimal health benefit". If these were studies with non-CAM compounds, would they be recommended? I don't think so. JFW | T@lk 13:44, 21 December 2008 (UTC)

Wikipedia is not all about recommended or entirely proven therapies. The use of CAM by CFS sufferers is notable and should be decently well-covered. The reason that these CAM therapies may be recommended despite strong evidence is that the adverse effects are generally low, and there really isn't much that works for CFS sufferers. Given that, some reliable sources may recommend trying these sorts of things. I'll look to see if there are better sources, since the UMich source isn't that great. Still, you can't say that it's all that biased -- it gives them two stars, and if it was included, it should be presented as two star evidence.

Incidentally, I presented that hypothesis-generating paper because there seems to be some controversy on this page over how psychosomatic CFS is, and based on my shallow reading so far, the term neurobiological appears more popular than psychosomatic.

Here is a link to a paper titled "ALTERNATIVE AND INTEGRATIVE TREATMENT OF FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME". It covers both fibromyalgia and CFS fairly well. II | (t - c) 19:59, 24 December 2008 (UTC)

Does NIVEL cover the use of CAM by Dutch-only patients, or is it greater breadth? If it's not published by a peer-reviewed journal, I'm reluctant to use it, and I can't even read it 'cause it's in Dutch. What journal is the zen-tai article published in? Is it pubmed indexed? I can't find it after a brief search. Also, fundamentally the medical community is unsure of CFS from what I've seen - no one knows what causes it, what cures it, if it's one condition or several, and what to call it. There are multiple competing hypotheses and we should discuss them; when it comes to neurobiological or psychosomatic, I'm not certain if one wins out more than the other. My inkling is that people are leaning toward both - it's a biological condition with how one thinks about it and deals with it having a significant impact. WLU (t) (c) Wikipedia's rules:^simple/_complex 22:03, 24 December 2008 (UTC)

The zen-tai article was published in Clinics in Family Practice, basically a mainstream journal published only until 2005. Did you read the article? It takes a fairly mainstream perspective, saying that CBT and GET are the most proven therapies. It is not PubMed-indexed, but I don't think that should disqualify it. If you'd prefer a PubMed-indexed review, there is Werbach MR (2000). "Nutritional strategies for treating chronic fatigue syndrome" (PDF). Altern Med Rev. 5 (2): 93–108. PMID 10767667. {{cite journal}}: Unknown parameter |month= ignored (help) I'm not a fan of using foreign-language articles unless absolutely necessary, either. Werbach covers (from a dated approach) some interesting things that this article doesn't cover: the abnormally-shaped erythrocytes, neurally-mediated hypotension, and the relatively high levels of magnesium deficiency observed in large samples using the most reliable test (magnesium loading). The erythrocyte abnormalities, despite being reported in Lancet in 1987, don't seem to have been investigated that much (articles citing the paper). Niblett 2007 has an interesting overview. Afari 2003 covers the neurally-mediated hypotension angle and CAM briefly in more of the refuting vein.

It seems like this article has a fair amount of repetitive citations and vague, almost vacuous language. Seems like it might be better to focus on getting as much as possible from the decent freely accessible articles. II | (t - c) 07:39, 27 December 2008 (UTC)

If you look at the history of the articles on CFS, from the middle of this last year a great amount of specific and attributed reliably sourced information on the physiological basis of CFS has been removed from the articles. Some of the information may have been wordy. There had just been a major effort to split the article into sub-articles, and many editors were burned out I believe. But the information could have been condensed without major changes in the POV of the material. During the removal of information on the physiological basis of CFS, much more weight has been added to the psychologically oriented basis of CFS without nearly as much attribution as there had been previously. Ward20 (talk) 08:23, 27 December 2008 (UTC)

I've reviewed the history and I see some of what you mean. Edits seemed in good faith and necessary, but things got overly trimmed -- the symptoms section got cut down far too much, for example. I noticed that Hooper 2007, a notably anti-somatic take on CFS, was "unjustifiably" retracted, leading to its removal from the article. It has since been restored with an apology from BMJ (who said it was due to a technical error). It should be reintroduced. I also saw my own edit to this article back in July, when I tried to note that enteroviruses are a big thing, and was promptly reverted by Jagra who said it needed to go in a subarticle. Hooper's article notes that Chia 2005 says that "recent studies have confirmed the role of enteroviruses". There are a limited number of major biological things going on here which can be mentioned specifically. II | (t - c) 10:50, 27 December 2008 (UTC)

[unindent]After the articles were split, some of them were merged again, and that also might have contributed to the removal of some bits. I don't think there is too much weight to the psychological basis. But obviously if you don't think there is any psychological basis to CFS then the article will appear to be biased in that way. Some items, such as Hooper, were probably deleted because of not being reliable sources. AFAIK there is no evidence of enteroviruses in CFS published by a reliable source - that's why it isn't in the article. Also, there appears to be vandalism by a plusnet ip who was previously vandalising the fibromyalgia page. The same user obviously has an issue with me because a while ago he went through the fibromyalgia talk page and deleted all my comments! Perhaps a banned user? My suggestion is to just revert any changes by a plusnet ip if there is any doubt. I think it is highly unlikely that wikipedia will range-ban the entire plusnet ip range. --sciencewatcher (talk) 04:47, 28 December 2008 (UTC)

Eh? I just pointed out that Chia 2005, in a review in the Journal of Clinical Pathology, says that "recent studies have confirmed the role of enteroviruses". Surprised that the sciencewatcher didn't pick that one up. Hooper 2007 is also published in BMJ Group's JCP. II | (t - c) 21:02, 28 December 2008 (UTC)

Yes, I saw that, but the Chia paper isn't an authoratitive review. It is just a review by a researcher working at "CEI Research Center" which I assume is Chia's own company. Also if you look at the "EVIDENCE FOR ENTEROVIRUS INFECTION IN CFS" section in his article you'll see that the evidence is weak - some studies show positive results and some negative. And I'm not sure if Hooper is a reliable source. Just because something is published in a reliable journal does not automatically mean the article or author is automatically a reliable source. The Hooper "review" is mostly a rant, talking about the "possible imminent extinction of modern psychiatry". He also says HIV/AIDS is an "overlapping syndrome of uncertain origin". What?!?! HIV/AIDS is uncertain? And it is overlapping with CFS? And he says "An ill-founded alternative approach offers a common psychiatric explanation for these syndromes". Clearly the "review" is just an anti-psychiatric POV rant and I'm very surprised that the BMJ actually published this nonsense. --sciencewatcher (talk) 00:38, 29 December 2008 (UTC)

Surely he meant that the symptoms are overlapping, although the inclusion of MS and HIV/AIDS should have been better differentiated. The section starts by discussing "syndromes of uncertain origin" (citing "Merck Manual, Millennium Edition, Merck, Sharpe and Dohme,1999.") These seem to be "OPs, GWS/I, MCS, FMS, CFIDS" in Table 1. I'm guessing he later adds MS and HIV/AIDS to the table to demonstrate the similarities between symptoms of ME and other diseases of a neuro-immune or infectious nature. Conversely, an inaccurate pro-psychosocial POV rant is used in the CFS article [15], although it's for the "Social issues" section so apparently sources don't need to be as accurate or reliable there. Niall McLaren actually raises interesting criticisms about psychiatry and the biopsychosocial model, but he goes too far when dismissing it. - Tekaphor (TALK) 07:22, 29 December 2008 (UTC)

MEDRS is "written by an expert in the field" The Hooper review is from reputable publisher but Hooper is a amaetuer in the field he is a biochemist who did not publish about CFS before he has not research on CFS. He is not an expert in the field. REview is not medrs and should not go back in. RetroS1mone talk 05:00, 31 December 2008 (UTC)

POV and weight issues

OK, here is an example of why I think there are some WP:POV and WP:WEIGHT issues. This is a specific, but there are many similar items like this thoughout all the articles. Look at the current Pathophysiology of chronic fatigue syndrome article about enteroviruses.[16]

Enteroviruses like the Coxsackie virus and Polio virus have been associated with symptoms resembling CFS. The validity and implications of enterovirus findings are controversial.

About 6 months ago the Pathophysiology of chronic fatigue syndrome article looked like this [17].

Enteroviruses

Often, there is evidence of enteroviruses, e.g. the Coxsackie virus. The type of enterovirus varies, which can affect symptoms. Polio virus is one enterovirus associated with ME, in earlier times of outbreaks, before polio vaccination was common, paresis (paralysis) was often found in ME patients; this is no longer the case. Stomach biopsies of 80% of CFS patients showed the presence of enteroviruses in one study, as opposed to only 20% among controls, and nearly all biopsy specimens had microscopic evidence of mild chronic inflammation. Hyde and others suggest that these enteroviruses had been latent to be awakened by another, triggering infection, after which the immune system stays chronically active to combat the enterovirus.

Reviews report different laboratories from Europe and, recently, from the USA have found enteroviral RNA in the tissues, including peripheral blood mononuclear cells, muscles and stomach, of patients with CFS. Chronic viral persistence through the formation of stable doublestranded RNA reconciles the two opposing observations of the past two decades: – the absence of live virions in chronically infected patients and animals and – the presence of enteroviral RNA in the blood or other tissues of patients.

The previous wording may have needed some editing, but the cited studies talk about finding evidence of enteroviruses in CFS and ME patients, yet the present article is weasel worded and says, enteroviruses "have been associated with symptoms resembling CFS." Also, the present statement, "The validity and implications of enterovirus findings are controversial." has as its source an editiorial commentary [18] that states, "CFS is a common problem and any clues regarding its cause are welcome. The authors need, however, to demonstrate enterovirus within the muscle fibres by in situ PCR; prove that viral persistence alters the metabolic machinery of the cell; and show that such abnormalities cause clinical symptomatology." It certainly would be nice to spend the half billion dollars that would entail. The hypothesis of the psychological basis of CFS is certainly not held to the same standards. The previous enteroviruses section was gutted of material from reliable sources, weasel worded, and an editorial commentary given more weight than review studies. There may even be some new enterovirus studies [19] that weren't in the older version. Ward20 (talk) 08:25, 28 December 2008 (UTC)

Are there any authoritative reviews that discuss enteroviruses? I thought it was just a fringe theory, and therefore the current short paragraph is probably appropriate. At most it seems to be similar to herpes, i.e. CFS patients are more likely to have it, and it might be a trigger, but it isn't thought to be the cause of CFS. Most likely the compromised immune system in CFS patients just makes them more susceptible to infection by a variety of agents. The psychological theories of CFS have been published in authoritative reviews that carry a lot of weight, but I haven't seen the same for enteroviruses. --sciencewatcher (talk) 16:15, 28 December 2008 (UTC)

Interesting example Ward20; I agree with your assessment (welcome back, BTW).

Sciencewatcher, like in this review (PMID 16978917), I would consider enteroviruses as a part of the broader infectious hypothesis. Another review (PMID 12562565) states that " ... enteroviruses, and retroviruses, among others, have been proposed as etiological agents in chronic fatigue syndrome". An older review published in 1999 (PMID 10583715 | full text: [20]) states that "Another type of virus which has drawn a lot of attention is the enterovirus group [60±62] because clinical symptoms in CFS are similar to those found in enterovirus infections. So far, there is no clear evidence for an active involvement in studies based on either serology or muscle biopsies [60, 63±66]"

Since then there have been other studies and reviews on enteroviruses, but like you said, perhaps "CFS patients are more likely to have it, and it might be a trigger, but it isn't thought to be the cause of CFS". However, this description is pretty much how all supposed causes of CFS are viewed, including psychological "stress". Hence why the etiology of CFS is officialy "unknown", despite some biological clues to what causes or corresponds to some of the symptoms. I'm guessing that if severe psychological stress is important prior or during onset, it's because it compromises the immune response to infection.

_Tekaphor (TALK) 06:35, 29 December 2008 (UTC)

I've reworded the section a bit. See what you think. --sciencewatcher (talk) 15:01, 29 December 2008 (UTC)

87.115 and POV

Someone from the 87.115 range has now made several runs of POV edits, all of which have been reverted. There is a real possibility the article may need to be semiprotected unless this anonymous user can come to the talkpage to defend his/her edits. I think there is a particular concern that this is a reincarnation of banned user Guido den Broeder (talk · contribs), although the IP evidence points at the North of England. JFW | T@lk 15:10, 28 December 2008 (UTC)

Too late. Mr POV anon is invited to join the discussion. JFW | T@lk 15:25, 28 December 2008 (UTC)

Apologies to Stevenfruitsmaak for the edit conflict tangles. Needless to say, his version is the right one. JFW | T@lk 15:44, 28 December 2008 (UTC)

I'm not sure it's Guido. As I said above, it is plus.net, which is a UK ISP (I used to use them myself when I lived there). Unless plus.net are also in Holland or Belgium or wherever Guido lives, it is probably someone else. Would it be possible to just protect the article so that only registered users can edit it? That would be less restrictive than full protection, and it makes it a little more difficult for the spammers. --sciencewatcher (talk) 15:57, 28 December 2008 (UTC)

The current protection level is set to non-autoconfirmed users, so only new and unregistered users shouldn't be able to edit. We didn't full-protect. --Steven Fruitsmaak (Reply) 16:04, 28 December 2008 (UTC)

Ah, ok, I should have checked. Thanks. --sciencewatcher (talk) 16:16, 28 December 2008 (UTC)

Ongoing disputes

This article will always be subject to disputes as long as the proper range of biological information isn't included, the psychosocial aspect or cognitive behavioural approach are selectively oversold without caveats or qualifiers, and with double-standards in regards to sources. Addressing these issues should alleviate the feuding somewhat; some won't be satisfied until psychological factors are totally removed/excluded, but when considering WP guidelines/policies and research on CFS, this won't happen. There are psychological and social factors in many diseases, so I think this argument is a question of degree rather than "primary role" vs "absolutely no role", but beware of the (false) middle ground problem.

Guido was recently banned from Wikipedia; I view his so-called "disruptive edits" as mainly a response to the frustration at what happens at this article, attempting to balance things out. "87.x.x.x" made similar edits. It's inevitable and even warranted that a group of people who've been treated poorly for decades in the name of psychobabble will dislike/distrust anything resembling it and eventually rally against it, especially if CBT/GET failed them. And while these patients are often accused of "avoiding responsibility", you generally won't see any of the counter-accused "psychologizers" taking any responsibility for the poor treatment.

_Tekaphor (TALK) 06:29, 29 December 2008 (UTC)

I have to agree with much of what you're saying, Tekaphor. Looking at the article now vs. what it was a month ago or so, there have been a lot of very biased statements introduced which, to summarize rather broadly, seem to be of the general bent that "it's all in your head, if you just get out and exercise, you'll get better". Since you mentioned GET, let me take that as just one example: in the current version of the article, GET seems to be presented as a very positive treatment that works well in over half the cases. When you read the quoted articles, however, you see a lot of caveats and suggestions that more and better research is required. There's also little mention of how much improvement there was, only that there was some...one of the articles quoted mentions the word "signficantly". How much is that? What were the starting points for these people? Did those who were bed-ridden suddenly start working their old jobs again, or was it considered "significant" that they could now sit up on their own? That same article also refers to dropouts. Were the improvements perhaps "significant" because the dropouts (who presumably couldn't keep up with the exercise) were no longer being factored in?

But rather than mention these things, the section as it currently stands simply blames any disputes with these results on patient groups, making it sound very much like patients are simply refusing to do the things that will help. (Trust me, many of us have tried! And I'll be the first to admit "some" improvement with exercise, though as the disease has a tendency to improve at least somewhat over time...another factor not mentioned in any of the articles quoted...it's unclear how much the exercise has actually helped vs. the condition simply having improved of its own accord.)

There also seems to be a lot of weight placed on a very few authors' work (Prins stood out, as did a couple of other names to a lesser extent) in recent edits.

In short, there are definitely some physical factors in most patients and there may be psychological factors as well. In point of fact, since we don't really know what's going on, it could be a dozen different conditions with the same symptomology. The article as it stands now, however, doesn't even come close to a balanced, unbiased view that tries to present all the relevant information. I think what it really needs is for the mythical unbiased person (or the closest we can find to it) to really go over it with a find-toothed comb and then place the article under protection for a while to allow the recent edit-warring to die off...hopefully. --Rob (talk) 07:35, 29 December 2008 (UTC)

Clearly neither of you have actually looked at 87.*'s edits. If you did you would see obvious vandalism here and 11 other instances on this page alone, where he/she deleted other users' talk entries.

As to questions about what is in the article: it is all about the quality of the references. Hooper's work is not mentioned because he is not a WP:MEDRS, whereas Prins is. And if GET/CBT or anything else is not represented fairly in the article, then you should improve it. But you can't base anything on your own experience, you must use reliable references. --sciencewatcher (talk) 15:12, 29 December 2008 (UTC)

I wasn't commenting on any editor's changes specifically, but rather on the overall tone of the article compared to what it was historically and the array of information that's out there on reliable medical sites. As a Patroller on UESPWiki, even though the focus is obviously very different, I most certainly have an appreciation for what is and is not acceptable in an article. I would never base the content of an article on my own experiences, however based on those same experiences, I most certainly will refute any categorical claims that are made to sound like they apply to all when clearly they don't.

As for improving the article, while I don't like what's there currently, I have neither the time nor the wherewithal to go over it in the detail it requires. Prins may well be a reliable source, but he is only one of many and the plain and simple truth is that nobody knows with certainty what the etiology of the disease is. As such, his work should be given no more weight than any other published in medical journals and the like. I can certainly tell you that the guidelines we use here in Canada and the research done by several reputable doctors disagrees with the use of CBT and GET in all instances. See the blue section between pages 10-11 and the "Caution" section on page 12 of this PDF overview of Canadian position when it comes to ME/CFS. --Rob (talk) 23:57, 29 December 2008 (UTC)

That blue section doesn't make sense. The proponents of CBT don't ignore the reality of biological symptoms and signs, and they don't think that symptoms are imagined. Wessely himself has done a lot of research into the physiology of CFS. But this does in fact go to the heart of the problem - the anti-psychological crowd believe that psychosomatic=imaginary, which is not (and never has been) the case. But seeing as this is such a common perception, it might be worth mentioning in the article if it isn't there already, using appropriate refs. --sciencewatcher (talk) 00:46, 30 December 2008 (UTC)

Update: I've just rewritten the "cognitive behavioural model" section of the article here. Have a look at the ref in google books - it gives useful info on the CBT illness model. --sciencewatcher (talk) 01:08, 30 December 2008 (UTC)

While I agree that psychosomatic does not equal imaginary, the overwhelming evidence at this point is that CFS is not in any way psychosomatic, at least not for the majority of its sufferers. In fact, CFS is even quoted on the psychosomatic medicine page as being one example of a disease where the psychosomatic view of the disorder has been slow to disappear despite evidence to the contrary. This is the same sort of thinking that we've seen time and time again with conditions like MS, Lupus, Lyme Disease, and even ulcers! "We can't find a cause, so it must be psychosomatic. Certainly our science can't possibly be failing us, and to say that our knowledge might be deficient is just plain offensive." While CFS may not have a specific etiology at this point, it's definitely inappropriate for the article to take a pro-psychological view, which it very clearly does as it reads right now.

Personally, I'm neither pro-psychological nor anti-psychological - there are somatoform disorders out there that produce very real symptoms, and since there's no established way of confirming CFS, I'm quite certain that in some cases, a somatoform disorder is the real cause. As such, that should certainly be mentioned on the page. But somatoform disorders do not typically produce the level of measurable impairment that is often seen in CFS patients, they most certainly do not produce the reductions of grey matter that are attributed to ME, wide-ranging genetic alterations, and the various other observed changes reported in various studies. Also, perhaps of primary importance in any debate about psychosomatic illness is that in many patients, there's a complete and utter lack of any psychological cause - no stressors, no factitious disorders, nothing.

But in the end, most prominent physicians who've studied the illness believe it's entirely physical in nature. For the article to take the highly pro-psychological bent that it does now is entirely inappropriate. Frankly, I think we should undo the last 6 months or so of edits and leave it at that! If you go back and read the articles from then and compare them to how they read now, you'll see why many people object. Balanced it ain't! --Rob (talk) 01:37, 30 December 2008 (UTC)

(outdent) Re: your update - it looks pretty good, though I don't believe the original CBT paragraph was all that flawed. The simple reality is that a patient's perception of their illness will affect how they proceed, how they treat it, and in many cases, how quickly they recover. The new section as-written does seem to be a balanced presentation of the facts and why CBT and similar self-help treatments are used and often effective to some degree. --Rob (talk) 01:43, 30 December 2008 (UTC)

The psychosomatic article doesn't say that "psychosomatic view of the disorder has been slow to disappear despite evidence to the contrary". If you read it carefully you'll see it actually says that there is still a controversy for CFS and peptic ulcers. Peptic ulcers are a very good example of an illness that was thought to be purely psychosomatic, then purely physical, but now we know there is a large psychosomatic factor. Have a look at the peptic ulcer article. Anyway, you're right in saying that the CFS article shouldn't have a pro-psychological bent. It should discuss the evidence in a NPOV. If it doesn't do this (and I haven't read through the entire article recently, so I don't know) then it should be edited accordingly. But you are incorrect in saying that psychiatric disorders do not cause genetic alterations or changes in grey matter. Take stress, for example, which causes changes in brain structure and chemistry, and also causes changes in gene expression. And again this is also one of the major misconceptions that lead many people to believe that CFS can't be psychiatric. --sciencewatcher (talk) 02:05, 30 December 2008 (UTC)

Actually, re-reading it, I think the wording in the pscyosomatic medicine article is ambiguous and could be taken either way. And as for ulcers, did we ever actually think they were purely physical? I was at least vaguely aware of the various components and the fact that some were still entirely unexplained, but my wording was, admittedly, a little unclear. As for stress and gene expression, I was unaware of that and the wiki article makes no reference to it. Can you provide details? You've got me curious. --Rob (talk) 02:48, 30 December 2008 (UTC)

After I wrote the above I realised that the psychosomatic article probably needs some re-wording which I'll do soon. Regarding gene expression: the one that comes to mind is "Chronic psychosocial stress regulates the expression of both GR and MR mRNA in the hippocampal formation of tree shrews" (PMID 11769314). Gene expression isn't itself a sign of damage, and even one session of heavy exercise alters the expression of genes associated with stress and the immune system in the blood (PMID 15194674). I suspect the reason this isn't included in the article is because it's not really anything to do with CFS, although it is interesting and it's probably useful to understand it when considering the gene expression studies of CFS patients. --sciencewatcher (talk) 04:14, 30 December 2008 (UTC)

I would support the comments made above by 'Rob', 'Ward20', 'Tekaphor' and others in recent time that the Articles currently do not present a WP:NPOV balanced position, and there would seem to be consensus to this and the need to remedy. It may well be an artifact of the exalted position of WP:MEDRS and its bureacratic 'rules' ie. of favouring reviews over primary findings, together with the observation that one school of ME/CFS thought have been pro-active in producing "reviews' IMO one sided limited scope ones at that. This coupled with the apparent bias of some editors both in interpreting WP:MEDRS and in editing, could be producing the lop-sided changes of more recent time? The situation is becoming so obvious that something needs to be done, and I hope others will find time to edit. Jagra (talk) 04:21, 31 December 2008 (UTC)

People pls remember, this is not a medical encyclopedia for doctors and we are not here to talk about what mRNA goes up two percent in one study and down five point three in second study and debating the methods of those two studies and if its better the one used Taqman and other used SYBRgreen and which one is better blah blah. Also sorry Jagra we go on MEDRS at Wikipedia medical articles it is not right when people use anecdotes about one patient like Tekaphor did saying CBT worsens symptoms!! And pls read discussion, CBT succes does not mean CFS is purely psychological. Opinions are great on blogs, here please stay in MEDRS, prefer top journals. Thx, RetroS1mone talk 05:22, 31 December 2008 (UTC)

RetroS1mone, I admit I didn't even bother to check out the primary source before adding the review, perhaps I got sloppy after WLU's comment about the Lancet dispute, that the authority for the statement in a review comes from the publishers and not the cited sources used within. Sciencewatcher, as for "87.x.x.x", I wasn't aware of that, and talkpage content shouldn't really be deleted like it was; perhaps there's more than one editor under that IP range? Hi Jagra, welcome back! As you know, none of the editors you listed are "anti-psychological" or pushing for the removal of CBT or psychological factors, and just insist on the warranted balance and qualifiers for these sections that are usually enforced for all other aspects of the CFS article. Rob, while psychological states do affect physiology, this means little to understanding CFS itself unless it can be clearly demonstrated that both are CFS-specific. - Tekaphor (TALK) 13:08, 31 December 2008 (UTC)

I just had a quick look over the main cfs article, and it does appear to be pretty balanced. Psychological viewpoint doesn't appear to be pushed, and it seems to reflect the current state of research. I did however notice that ref 37 (Prins) is used 7 times in the text. I don't have access to the full text of this review, but it appears to be a reliable source. But I do understand if people think this represents a pro-psychological POV as the review is from a "Department of Medical Psychology". One example: why does Prins say the Canadian definition was developed "in an attempt to exclude psychiatric cases"? Also, in response to a previous query about why we don't use Spence: we do, his research is referenced in the pathophysiology sub-article, and there is info about genetics, oxidative stress, etc. --sciencewatcher (talk) 15:56, 31 December 2008 (UTC)

RS, I have no objection to WP:MEDRS but note from its own talk page that many issues are far from settled there. You seem to be defending the suggestion of an artifact having arisen! and i am sure MEDRS alone is not responsible for the bias of the Articles as they presently stand, and commented upon now by numerous editors. As you know CFS is not well funded in all areas of research and tends to favour certain sectors from time to time, such that any attempt to impose age limits on studies or texts is bias in itself. As to favoured journals, a mainstream journal is a mainstream journal, as you said yourself "this is not a medical encyclopedia for doctors and we are not here to talk about what mRNA goes up two percent in one study and down five point three in second study and debating the methods of those two studies and if its better the one used Taqman and other used SYBRgreen and which one is better blah blah."So I will scrutize interpretations closely, with this in mind. SW, we all have filters: emotional, professional, psychosocial etc. and one persons meat is anothers poison, (or bias) consensus of late is that the Articles are not NPOV 'balanced' for whatever reasons, despite your opinion otherwise.Jagra (talk) 23:33, 31 December 2008 (UTC)

Consensus of late?? Medical articles consensus are not from a vote of POV group of activisits that used to edit the article and did not for a long time and now are editing again suddenly Guido is gone, hmmm very strange?? Medical articles consensus is the consensus of the medical literature, medrs. RetroS1mone talk 03:21, 2 January 2009 (UTC)

Deletion of information taken from Knoop 2007

Retro You deleted some info in the CBT section about worsening of sx. During the same edit, you also deleted some entirely unrelated info about Knoop 2007, that I added yesterday.

"However, the study lacked a control group; the authors also reported that the percentage of recovered patients depended on the criteria used for recovery. Only 23% of the patients fully recovered, using the most comprehensive definition of recovery."

I inserted it because the existing description of the Knoop 'study' did not mention that this was an uncontrolled non-experimental study, unlike other 'studies' here which were in fact experimental 'trials' - RCTs in fact. A crucial distinction in the hierarchy of evidence used in EBM, as I'm sure you're aware. I also added the authors' own prominent acknowledgement (i.e. from their abstract) that only 23% recovered using more comprehensive criteria than CDC. Since I refuse to engage in retaliatory reversions, either please reinstate my edit, or explain how essential info taken from Knoop's own paper can be deleted as OR. Thanks, Sam Weller (talk) 16:22, 31 December 2008 (UTC)

I deleted worsening of symptoms BC it was an anecdote about one patinet in a obscure journal.

I object when you take a reference you do not like conclusions from and you say however and then try pick apart its methods. That study is in medrs reviews by experts it is one from a few studies that say 70%, it uses many patients it is not just anecdote like the one Tekaphor added for lower range of CBT. You can use 23% by more stringent criteria but we shouldnt have lots of sentences trying picking it apart, that is the OR. RetroS1mone talk 17:49, 31 December 2008 (UTC)

1. Who's objecting to Knoop's conclusions? I objected only the selective presentation of the 70% figure. The authors thought the 23% was so important that they highlighted it in their abstract. 2. Are you really unaware that an observational study is not as reliable as an RCT, due to all sorts of potential biases that RCTs control for? That's why systematic reviews like Cochrane include only RCTs when they are available. Since there are 2 RCTs showing 70%, outside Cochrane, why cite Knoop at all? I've previously said it would be better to delete it, and repeat that here. Or if you insist on keeping it, I will have to insist on a caveat: that uncontrolled studies are not equal in weight to RCTs. Sam Weller (talk) 18:23, 31 December 2008 (UTC)

It might be worth trimming some of the CBT section in the main article, as it doesn't make sense to have all the info again in the treatment sub-article. The main article should really just be a summary. --sciencewatcher (talk) 19:54, 31 December 2008 (UTC)

I have significant problems with the 23% figure. I grant it to Sam that the abstract mentions this, but for the average reader it is meaningless unless we can expand on what is meant by this. Not meeting the CDC criteria means that technically one doesn't have CFS anymore. Clearly there is a significant gap between "full-blown CFS" and complete recovery. But even if CBT isn't a cure for many, it still seems to improve symptoms. JFW | T@lk 20:42, 31 December 2008 (UTC)

It would be helpful if someone could post more info about this study. I only have access to the abstract, and it doesn't say what the "most comprehensive definition of recovery" actually is. It does seem strange that there is such a gap. Also, this study is mentioned in the treatment sub-article. Previously it only mentioned the 23% figure, but I just added the 69% figure as well. --sciencewatcher (talk) 20:54, 31 December 2008 (UTC)

RetroS1mone, despite the constant citing of "MEDRS", there seems to be some double-standards. For example, the current text "some studies report higher success rates (as high as 70%[54] and 73%[55]) than those reviewed by Cochrane" is arguably using primary sources to partly contradict Cochrane and isn't even correct because both of these studies were reviewed by Cochrane. I doubt that you would tolerate this if the situation was reversed (eg using PMID 8430715 from Cochrane to contradict it) or if it was done in other sections of the article. ... Sam, good points. ... Sciencewatcher, good luck with the trimming and subpage issue, I've mentioned it before. ... JFW, without accessing the full-text, I can't tell how much improvement there was; if "full-blown CFS" is an arbitrary cut-off point, it's possible that even a modest improvement could result in "no longer fulfilling CDC criteria" if they were close to the threshold before treatment, and I remember another CBT study being criticised for that exact same reason. - Tekaphor (TALK) 03:26, 1 January 2009 (UTC)

Well an anecdote about one patient is not medrs sorry Tekaphor we use medrs not your opinions and cherry picking from literature. RetroS1mone talk 04:39, 1 January 2009 (UTC)

Tekaphor's discussion of how primary sources are misused in regard to secondary sources is much more persuasive than the hand waving argument by RetroS1mone. Support Tekaphor on this. Ward20 (talk) 09:22, 1 January 2009 (UTC)

Since when is a readily verifiable point "hand waving"? JFW | T@lk 12:12, 1 January 2009 (UTC)

R1, as I explained yesterday, I didn't consciously add an "anecdote about one patient" and I already freely admitted that it was a sloppy mistake to not first check the citation used within the review before inserting it into the article, so why dwell solely on that in your response? Reversion of all my new today edits (and one of Ward20's) in one step as "POV edits" without an adequate explanation is concerning, and so is the general refusal to discuss your edits; aren't these the behaviours you accused Guido of doing? Reverting the "Onset" section edit was especially bizzare, considering that I simply replaced the tagged text with the conclusion of the authors, so how does the authors' own words "fail verification" of the source?

I've requested explanations for why two primary sources are selectively used and incorrectly worded, why all other primary sources that don't lean the same way are dismissed while a single non-RCT without follow-up is strongly defended as "MEDRS", why there is a resistance to follow WP:MEDRS's "mention uncertainty/controversy" and WP:NPOV's "present conflicting perspectives fairly", and similarly why the positive findings in systematic reviews (among other sources) are viewed as evidence while the caveats from the same sources are seemingly viewed as opinions and OR? I've tried to resolve the issue through discussion (WP:TALK), but was I being unreasonable to expect this? Then I tried to resolve the problem with edits, which were rejected; but were today's edits really so radical? JFW, perhaps a readily verifiable point becomes "hand waving" when it is used hypocritically? - Tekaphor (TALK) 12:28, 1 January 2009 (UTC)

Yes, JFW, there's a minor problem with Knoop's 23% as it stands even though 23% is close to the much more rigorous Cochrane figures. But we're waiting to hear your position on the bigger problem: an uncontrolled cohort study mentioned in the same breath as a Cochrane review of RCTs. BTW, I was wrong about it being observational - with no control group, it's even lower in the evidence hierarchy, so I'm adjusting the study description to match the Medline Mesh heading for Knoop. Good summary, Tek. Sam Weller (talk) 16:18, 1 January 2009 (UTC)

Ward20 and verifiability

Ward20 (talk · contribs) now insists that we directly prove (with a source) that "chronic fatigue syndrome" is the most common name for the disorder discussed in this article. I am being asked to PROVEIT in an edit summary.[21] So here we go:

• Googlefight CFS vs ME, ratio 20:1
• PubMed 3769 versus 229, again a ratio of 16:1

Even if we cannot directly demonstrate this with a source, the predominance of CFS as a name is easily verifiable. I suggest we leave it at that. JFW | T@lk 11:49, 1 January 2009 (UTC)

You should know there is a reason WP:V does not mention google or PubMed hits to establish claims, and that WP:PROVEIT says, "any material challenged or likely to be challenged must be attributed to a reliable, published source using an inline citation." I can do original research like you did and get different results. A google search for "chronic fatigue syndrome" over the last month gets 79,800 hits. [22] A google search for "cfids" over the last month gets 80,900 hits.[23]. According to that cfids is the most common name for the disorder. That is why we need to stick to WP:reliable sources for claims and not WP:original research. Please revert your removal [[24]] [25] of the tag. Ward20 (talk) 13:48, 1 January 2009 (UTC)

I've added the ref for this claim. I'm pretty sure it was there before, but maybe not. --sciencewatcher (talk) 15:45, 1 January 2009 (UTC)

Given that a source is now present, I shall not be reverting myself. Also, trends in naming come and go. I would not support a renaming to CFIDS purely because over the last month the latter term got 1100 more hits. Quite on the contrary, it is unsustainable as a name because immune dysfunction is not a consistent finding. JFW | T@lk 16:38, 1 January 2009 (UTC)

Ward20 alot of this was talked about many many times in last months since you edited with your group of ME friends Guido Tekaphor Jagra MESpringal and MEagenda, pls read it before you start this stuff again. Thx! RetroS1mone talk 00:03, 2 January 2009 (UTC)

RetroS1mone I was just asking for WP:policy to be followed. The relevant links are discussed above. Editing should follow policy. It was not being followed in this particular instance. RetroS1mone, I don't have a group of ME friends, and resent your statement that I do. Using someone's affiliations (whether true or not) as a means of dismissing or discrediting their views is a form of personal attack, so please do not repeat it.... Seriously. Ward20 (talk) 05:56, 2 January 2009 (UTC)

Guido said you and Tekaphor and others were part of a group that edited in co-ordinate. I am just listening to him and watching your stuff. You have a obvious POV. Your edits show it. The POV of WP is POV of MEDRS. Views do not get discredit, they are medrs or not. Yoursalot of times are not. Sorry RetroS1mone talk 04:00, 3 January 2009 (UTC)

RetroS1mone wrote that Guido den Broeder said I "and Tekaphor and others were part of a group that edited in co-ordinate." I am not aware of a statement by Guido den Broeder that I edit in coordination with anyone, and I have not done that. A link needs to be provided to where Guido den Broeder said I and Tekaphor and others "edited in co-ordinate" with any group. If a link is not shown where Guido den Broeder stated this, I would also consider it a lie and irresponsible baseless asserting of false information on a discussion page in order to mislead editors. STOP NOW with the other accusations on the talk page against me RetroS1mone! If you have specific material to discuss about WP articles I would be happy to discuss those. Ward20 (talk) 05:38, 3 January 2009 (UTC)

Like Ward20, I was not aware of any "group" that made co-ordinated edits. During 2008 I didn't make any article edits at all for about 7 months and my only contribution to the ME/CFS article split "project" was to suggest some names. Guido might have said that there are some editors which supported him on some issues and/or at least thought they were worth considering. - Tekaphor (TALK) 06:32, 3 January 2009 (UTC)

RetroS1mone, it would be useful if you could support your allegation with a diff. I'm not personally convinced there is a cabal here, but at the same time it would be useful if Ward20 informed himself of the previous discussions we've had on this subject. JFW | T@lk 18:09, 3 January 2009 (UTC)

JFW, I have been monitoring the article and talk page periodically. I realize there has been a lot of effort on the nomenclature. I tried to convey my belief the use of google hits, PubMed hits, or other surveys conducted by editors does not meet the threshold to verify a claim. My intent above was not to suggest we insert in the article that cfids is the most common name for the disorder. The example was only intended to illustrate that the the results of an editor using google hits should not be used to verify a claim. I am sorry if I did not make that point clearly. In any case Sciencewatcher found a verifiable source for the information. It would be nice if it came from a source that talked specifically about data concerning the name and wasn't 9 years old, but it is better than no source. Thank you for your cooperative discussion on the issue. Ward20 (talk) 22:32, 3 January 2009 (UTC)

Does anyone have a source saying that the condition this page is about is regularly called anything else? What else would we say here? If "easy to prove" is being used against CFS, it should equally be used against the alternative - what sources exist that say the page is about a condition other than CFS? What is the dispute about in this section? What sources are there that say "chronic fatigue syndrome is not the same thing as myalgic encephalomyelitis", or chronic fatigue immune dysfunction syndrome, or whatever other names are being bandied about? WLU (t) (c) Wikipedia's rules:^simple/_complex 23:50, 3 January 2009 (UTC)

I will try on finding the diff but i am remembering Guido said it many times how he and like minded editors and he was talking about people he said he respected on his user page and that was Ward20, Jagra, Tekaphor, had the page and subpages in a good condition and he accused me that i ruined all, when it was not me that made all edits alot of people have helped make these pages more like the medical literature in last half year. Guido had a name for the group it was ME/CFS interest group or something. I will try find the diffs some time i have time.

OK to Sam Weller did I say you were part in this group, i a msorry when i did i meant it is strange Guido gets community banned and suddenly Weller Tekaphor and two people that were not here for so long Ward20 and Jagra are suddenly here now Guido is gone. RetroS1mone talk 05:41, 4 January 2009 (UTC)

OK and Ward20 medmos says, name for condition is what medical community uses. A PubMed search is a good place on finding medical community usage not Google. PubMed is over-whelming CFS. It is just common sense to use CFS. Even the Journal of CFS that is not medrs and is alot of researchers with kinda fringe ideas has CFS in its title and it used it. Its like, i can't go on cancer and say hey people lets not call it cancer anymore i think it has bad connotation, i do not like it and patients do not like it, it should be called cytologial proliferative disorder CPD.

I have no problem with common sense but claims need verification. I asked for verification from a WP:RS and was supplied with one thanks to sciencewatcher. End of issue until someone comes up with a better WP:RS. Ward20 (talk) 00:05, 5 January 2009 (UTC)

I also think the mudslinging by Retrosimone is an underhanded form of personal attack and I resent accusations that I belonged to some sort of cabal of editors. I value my indepence as an editor and frankly have in the past refused to get involved in petty page politics and sanctions, as I am sure others editors could testify. I think apologies are in order unless evidence is forthcoming. As to names there certainly is sources for ME/CFS. Jagra (talk) 00:54, 5 January 2009 (UTC)

Yeah, I have to agree that there's a lot of mud-slinging going on here, and especially RetroS1mone seems to be intolerant of any evidence that doesn't match her own views being entered into the article, cited or not. It's for that reason that I've chosen to stop participating in this discussion...it's fruitless at this point. Having said that, if RetroS1mone continues her current behaviour, I'd suggest that someone report her and have her banned in much the same way as Guido apparently was. She doesn't see it, but her edits are as much POV as anybody else's, and it's unacceptable for a wiki article. With that, I will stop monitoring this page entirely for the time being...I have neither the time nor energy to engage in/defend myself from this kind of debating which I think is ultimately going nowhere. --Rob (talk) 21:07, 5 January 2009 (UTC)

I am still awaiting an apology before considering other options Jagra (talk) 01:21, 6 January 2009 (UTC)

I think Guido just had a list of people who edited in a way he liked. And sometimes when they did something to annoy him he removed them from his list. I don't think it was any sort of cabal. Maybe he's contacted some people recently, maybe not. Who knows? Who cares. Let's just get on with improving the article. Guido was useful for putting forward a patient POV, and now that he's gone we probably need others to fill his place. Tekaphor and Ward20 do a good job while sticking to the science and avoiding POV pushing (and I'm not implying that all other editors don't do this, just giving a couple of examples). --sciencewatcher (talk) 02:31, 6 January 2009 (UTC)

Thanks Sciencewatcher, interesting assessment. Like you said, we all should focus on improving the article rather than getting bogged down in speculation. Rob, I understand your position; some of RetroS1mone's edits seem disruptive, but banning is a little extreme, perhaps WP:RFC can be started for individual content issues? - Tekaphor (TALK) 09:11, 6 January 2009 (UTC)

I agree, banning would be extreme at this point. I'm trying to assume good faith at this point, but looking at some of her other edits and comments on her talk page, I can see that this isn't the only article where her edits have been controversial. That definitely gives me pause. That's why I said it should only be considered if her behaviour continues to be this disruptive. --Rob (talk) 10:07, 6 January 2009 (UTC)

Thank you that you did not ban me Rob but please retract the personal attack. My most conetroversial edit, i deleted a defamatory talk page comment, it was commented by Jimbo Wales, who said, "Clearly, RetroS1mone did the right thing" I have not history of blocks and bans, pls try understand, I am just trying follow a major WP guideline to keep this article in medical consensus. WP is not a sopbox for patient activists. It says what their views are it does not give them emphasis. RetroS1mone talk 13:06, 6 January 2009 (UTC)

I don't think RetroS1mone is in the same league as users such as Guido. She hasn't make any real personal attacks (I wouldn't put calling someone an "activist" in the same league as saying "in your complete and utter ignorance"). And she has reverted changes and agreed to consensus with others. It looks like she is a relatively new user (since May 2008), and hasn't quite learned that you can't force (what you believe to be) the truth on wikipedia. Anyway, I don't see her as being disruptive, and hopefully she'll learn from this and at least consider other POVs before making changes in future. --sciencewatcher (talk) 16:44, 6 January 2009 (UTC)

Labelling people as "activists" or whatever (regardless of the truth to the claim) wasn't really the main problem, but automatically dismissing the validity of their edits (based on speculation they are activists) is, and this was the source of my earlier frustration with RetroS1mone. - Tekaphor (TALK) 07:58, 7 January 2009 (UTC)

RetroS1mone: I see only opinions and suggestions in my post, not personal attacks. If you feel that something crossed the line, please quote the offending passage and in what way it contradicts WP guidelines, and I will retract that portion of my statement. Frankly, I'd rather you simply dropped it, I'm trying not to be involved in this discussion any more, and only monitoring the responses to my posts. --Rob (talk) 08:16, 7 January 2009 (UTC)

At the moment this page will only load to this point and i am unable to edit anything current. I'll try anoyher day. I think it needs some archiving! Jagra (talk) 23:38, 9 January 2009 (UTC)

WTF?

The current article text states that those 2 RCT's weren't reviewed by Cochrane; this was the main rationale for their addition, but they were in Cochrane so just do a search! Therefore, they are incorrectly worded, and selectively used to contradict Cochrane despite being included in the review, hence why I removed them (especially when selectively using a CBT-negative study in the same way, like PMID 8430715, would be furiously opposed, hence the suspected double-standards about WP:RULES). If I can't even get such a simple verifiable point through after raising it several times and even using bold or underline, WTF is going on? Did the people opposing this even bother to check it out? So it's OK to lie in the article, eh?

I'll make it even easier for everyone and post the details. In the Cochrane 2008 CBT systematic review[26], if you look at the section "References to studies included in this review", you will see the following: "Deale 1996" matches PMID 9054791 (70% figure) and "Sharpe 1996" matches PMID 8555852 (73% figure). It doesn't get much clearer than that folks. As a side note, Cochrane says both these studies used Oxford criteria (although the sample in the "Deale 1996" matched both CDC and Oxford criteria). I previously explained the ridiculousness of the Dubbo study reversion. As for the "different trials use various outcomes" text in the CBT section, after deleting the above primary sources, this statement was orphaned so I added a caveat from the Chambers et al 2006 systematic review because they specifically mention this as a fundamental issue. Again, I'm drawing on WP:RULES to mention uncertainty/controversy and present differing perspectives fairly.

The research suggests CBT is partly effective in some people diagnosed with CFS; this line of research also comes with many questions and caveats; the systematic reviews on the subject each have several such examples which are glossed over here, and it's the way these are just dismissed as unimportant bias that is unacceptable, especially with the instances of apparent double-standards that I've given ample opportunities to be openly corrected on (RetroS1mone won't even discuss the issue and simply reverts all the changes as "POV edits"). In consideration of the smug contempt for anyone deemed to be a ME advocate or patient or associate regardless of the actual validity of their edits and comments (as Ward20 has also noticed), I have better things to do than waste hours trying to move an inch forward by negotiating with bigotry and the condescending or hypocritical parroting of WP:RULES. Obviously I'm wasting time/effort even pretending to expect reasonable debate and edits on these issues; like flogging an immortal but paralysed horse, there's some noise but no forward movement. - Tekaphor (TALK) 06:44, 2 January 2009 (UTC)

Tek, I understand your frustration with the bullying and foot-stamping that substitutes for evidence-based discussion here, but stick around. Deale & Sharpe are now removed again, since they were cited misleadingly, but no doubt in good faith.Sam Weller (talk) 10:59, 2 January 2009 (UTC)

This is not a good way to discuss by using nasty words in section start. A strong POV and being rude and nasty that is how Guido got banned. Why do not you reword not just delete stuff to help your anti science POV. RetroS1mone talk 04:02, 3 January 2009 (UTC)

So you now admit that Deale and Sharpe ARE in Cochrane? Are you aware why highlighting 2 RCTs at the top end of the Cochrane metaanalysis is anti-science? In case you're not, please explain why someone should not highlight those at the bottom end. Read what systematic reviews are, and what meta-analysis is. When you're done, you will understand why cherrypicking component RCTs - as you do - is anti-science. Sam Weller (talk) 10:42, 3 January 2009 (UTC)

RetroS1mone, as for rewording the 70%/73% statement instead of deleting; no, why would I support your double-standards? The positive findings and negative caveats go hand in hand; you can't stubbornly allow only the most positive aspects and then expect me to take you seriously when bashing people over the head with accusations of "cherry-picking" and "not following MEDRS", especially when you viewed a caveat from Chambers et al 2006 as POV despite the authors wording it as a "fundamental problem". You also refuse to allow any significant minority viewpoints whatsoever, which was just a short sentence from PACE. Your reversions appear more based on the alleged agenda of editors rather than WP:RULES. I doubt you could even accurately define what my opinion actually is, especially without pigeon-holing. Detailed discussion is more productive than merely typing acronyms like "MEDRS" and "POV". PS, I've "politely" responded to your message on my talkpage [27]. - Tekaphor (TALK) 01:40, 4 January 2009 (UTC)

It is not matter what your personal opinion is and what I think about it, just what MEDRS says. Cochrane says one percantage for one group of RCT, another percentage for another group of RCT. Tekaphor and Sam Weller and others always pick the Cochrane result with lower percentage. I gave both and i sad, the authors of some RCTs give higher percentage then what Cochrane said. I did not use the right words at end. The sentence was there a long time, no one said any thing, i was mistaked, now i am accused i do not know what a systematic review is. Lets be quieter and try work along each other RetroS1mone talk 05:49, 4 January 2009 (UTC)

Oh by the way the article Tekaphor gives Lloyd et al 1993 is totally medrs and it can go in there with the others, giving idea of range. It should be clear that most recent studies have higher results but it is wrong not including Lloyd when we have others, i am sorry if i was opposing it, was I?? Thx, RetroS1mone talk 07:49, 4 January 2009 (UTC)

[unindent]Retro: I don't have access to the full-text of Cochrane, but it looks like the only figure they give is the 40% one. If some of the studies had a 73%, perhaps some others had lower results, giving an average of 40%. In the review they pool the results so obviously some of the trials will have lower figures and some higher, and you can't just cherrypick the higher results without also giving the lower ones too, and that doesn't really make sense. It would be different if Cochrane gave a higher figure in their abstract saying that different criteria give different numbers, but they don't do that. --sciencewatcher (talk) 16:59, 4 January 2009 (UTC)

Also, the Knoop study, which I think was originally added by me, is useful because it does look at a different thing: full recovery. So even though it's not as authoratitive as Cochrane I think it's useful to include it (at least in the treatment sub-article), along with the caveats, etc. But I also think it would be useful to trim the CBT info in the main article as it should really just be a summary of the treatment sub-article which also gives the info. --sciencewatcher (talk) 16:59, 4 January 2009 (UTC)

Sciencewatcher Cochrane has lots of differnet sections about lots of different categories, the compare CBT with usual treatment in four and CBT with other psychological treatment in three, or is it other way around. To usual treatment is 40%, to psychological treatment is 48%. There is one study Lloyd 1993 that balances out the others, I think we should say about Lloyd and also give the more recent positive resutls. RetroS1mone talk 21:23, 4 January 2009 (UTC)

OK i have time to read Cochrane again. Sharpe is not used by Cochrane to come to 40% figure in four trials, CBT against usual, or 48% figure, three trials CBT against psychological treatments. Sharpe used in Cochrane as Sharpe 1993 is not just the Sharpe 1997 in our article it is four different studies. Sharpe 1993 is only used for data at follow up for CBT against usual not the 40% that is immediate post. So the 73% is separate from Cochrane report. Deale 1996 in Cochrane is Deale 1997 in here article and some others, it is may be one of the three studies used for immediate post in CBT versus psychological, so I take it out. So confusion solved?? RetroS1mone talk 02:13, 5 January 2009 (UTC)

The problem remains. In Cochrane p.26 the following are grouped together, and referred to collectively as "Sharpe 1993 {published and unpublished data}"

SharpeM.Non-pharmacological approaches to treatment. Chronic Fatigue Syndrome: Ciba Foundation Symposium. Vol. 173, 298-308, Chichester: John Wiley & Sons, 1993.

Sharpe M, Hawton K, Peto T. Cognitive behaviour therapy for the chronic fatigue syndrome. BMJ 1998;312:1098.

SharpeM, Hawton K, Simkin S, Surawy C, Hackmann A, Klimes I,PetoT,WarrellD, SeagroattS.Cognitive behavior therapy for chronic fatigue syndrome: a randomized controlled study. Verhaltenstherapie 1998;8(2):118–24.

SharpeM, Hawton K, Simkin S, Surawy C, Hackmann A, Klimes I, et al.Cognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. BritishMedical Journal 1996;312:22–6.

They are the same trial. Sharpe 1996 is the BMJ publication of Sharpe 1993.

This trial (Sharpe 1993 or 1996) was then pooled with 3 other trials:

"Analysis 1.9. Comparison 1 Cognitive behaviour therapy versus usual care, Outcome 9: Reduction in fatigue severity at follow-up (short/medium-term)." Graph on p.70.

Notice that the outcome measure (fatigue severity) is exactly the same as in the main analysis. Notice also that the earliest trial (Sharpe) is by far the most +ve. 2/3 of the trials published since 2000 failed to reach significance.

I make that 3 substantive errors in the text, compounding the shameless cherrypicking, so I'm removing it yet again (sigh). Interesting though how well it illustrates the common finding that early strong +ve results by enthusiasts tend to fail in independent replications. Sam Weller (talk) 21:13, 5 January 2009 (UTC)

Sharpe study was used for follow up part, not for the post treatment, the post treatment is the 40% or the 48%. RetroS1mone talk 03:19, 6 January 2009 (UTC)

I used the 40% figure because that's all the abstract gave; I didn't realise then that subscription wasn't needed for the full text. We've both made mistakes. I did indirectly imply on the 10th/Dec/2008 [28] that "Deale 1996" and "Sharpe 1996" were used in Cochrane, although I didn't highlight specifics. Sharpe 1993/1996 wasn't used for the 40% figure but was used for the same measure to calculate an average of 47% for short/medium-term follow-up and just happens to be the most optimistic trial out of the 4 listed on page 66 (so it's still being used selectively and the "aggregate" sentence is still incorrect). Lloyd 1993 wasn't used either so it's not "balancing out" the other studies as claimed (the wider 6 studies range was 1% to 54%). I used Lloyd 1993 as an example of what I doubted would be allowed, but I'll retract the accusation that it would be "furiously opposed" because RetroS1mone since said it would be allowed. However, selectively adding studies to the text to "balance out" the current selection wasn't really my intention and I've placed more emphasis on discussing the caveats in these systematic reviews.

Sharpe 1993/1996 [29] states that 73% (22/30) of CBT recipients achieved a "satisfactory outcome" (80 or more on the Karnofsky score (0-100) and/or improving by 10 points or more, with both groups starting at 72). It also gives 60% vs 23% for "much improved or very much improved" and 13% vs 10% reported deterioration. It uses the Oxford 1991 criteria that Sharpe co-authored, which even mentions that using different criteria makes "constructive comparison" of the research difficult. Wasn't RetroS1mone's argument for including Deale 1996 and Sharpe 1996 partly because "recent" CBT trials show higher results? 1996 isn't exactly "new" compared to 1993 since we are in 2009. It's been proposed that we mention a range of findings (eg no or minimal effect up to "73%" for Sharpe). However, they dont measure the same outcome, and this according to the authors Chambers et al 2006 is a "fundamental problem" but according to RetroS1mone's "POV" this is an activist opinion, and maintains that the "different studies use different outcome measures" statement should instead be followed with the most optimistic CBT study, as if different measurements explains why Cochrane didn't find averages of 70-73% rather than 40-48%? Suspected OR? I also remain unconvinced that important/relevant caveats are "undue" and I wouldn't want "biological" research added without such caveats either. - Tekaphor (TALK) 09:02, 6 January 2009 (UTC)

OK you convinced me Tekaphor, I reverted myself and it is gone, I agree on the problem with different measurements that is bad writing. Sam Weller is still mistaked, Sharpe is not one of four pooled for the 40% but it does not matter now it is gone. RetroS1mone talk 13:21, 6 January 2009 (UTC)

At last. And FTR, I said Sharpe was pooled with the follow-up trials (analysis 1.9, p.70) - not in the post-treatment group.Sam Weller (talk) 18:49, 6 January 2009 (UTC)

Edits by User:Lassesen

I think this was a poorly masked attempt at WP:OR WP:POV-pushing about antiphospholipid syndrome and related speculations, so have reverted. Comments welcome of course. --Steven Fruitsmaak (Reply) 21:05, 4 January 2009 (UTC)

Steve, your actions suggests that you appear to be advocating your own WP:POV. There is a large number of articles on the use of antibiotics and antiviral as treatment for CFIDS. Pubmed search

1. chronic fatigue syndrome antibiotic --> 53 hits
2. chronic fatigue syndrome antibiotic --> 65 hits

and there is not a single reference on this page. My references were removed because they are "unreliable".

I believe that many other people would agree that is prima facie bias spin on your editing. Many in the CFIDS research community have been very upset on the recent editing of this article -- your edits seem to reflect the approaches being advocated in the Netherlands which is where you are a medical student. These perspectives are not shared by the rest of the world.

Lassesen (talk) 21:26, 4 January 2009 (UTC)

Those numbers are peanuts, and it's not quantity that counts, it's quality. You were trying to argue that CFS is due to antiphospholipid syndrome based on 1 single article and a whole lotta smoke. I'm a medical student in Belgium, a country next to the Netherlands (although we do speak Dutch, which is the same as Flemish).

Find me one good randomized controlled trial about antibiotics in CFS, or one good article about antiphospholipid syndrome, and there will be no problem adding it. --Steven Fruitsmaak (Reply) 21:43, 4 January 2009 (UTC)

"Wikipedia articles should cover all significant views, doing so in proportion to their published prominence among the most reliable sources. The choice of appropriate sources depends on context and information should be clearly attributed where there are conflicting sources." WP:Reliable source That is what I did, and now you appear to be trying to create your own guidance to suite your WP:POV To most folks, PUBMED is the most reliable source, thus the CBT content should be less than the antibiotic, i.e. currently ZERO. I will give you some time to digest this, but an appropriate edit would be to remove all CBT references from the article. Lassesen (talk) 01:31, 5 January 2009 (UTC)

Hi Lassesen, an important guideline for Wikipedia medical articles is WP:MEDRS. Read this and you will have better understanding on Steven Fruitsmaak's edits. Medical articles should be most based from secondary sources in high quality journals like Lancet Nature Science BMJ, it idoes not mean you can not have a primary source when it is a very improtant one but mostly primary results in small journals are not good for a general medical article like here. And the Journal of Chronic Fatigue Syndrome is not a reliable source for a medical article.

Also, please do not make attacks on editors by disclosing bio details about them, thx. RetroS1mone talk 21:49, 4 January 2009 (UTC)

On what objective basis is “And the Journal of Chronic Fatigue Syndrome is not a reliable source for a medical article. “. If we assume that this is true, then any author that opts to publish there should also be deemed unreliable? Well, many of the existing citations in this article are included in that set of authors. Be consistent please! Lassesen (talk) 22:00, 4 January 2009 (UTC)

The discussion on the Journal of Chronic Fatigue Syndrome is here. [30] Ward20 (talk) 22:40, 4 January 2009 (UTC)

And past consensus as RS here Jagra (talk) 01:26, 6 January 2009 (UTC)

Ken: no serious researcher believes that antibiotics cure CFS. As Retro says, you need to look at the reliability and quality of the research. It's also a bit rude coming in here, putting in a whole raft load of POV edits ("CBT is a non-remission management") and edits where the references don't in any way support your text ("comobidity of these psychological symptoms with those seen with brain trauma") and then accusing others of POV. --sciencewatcher (talk) 00:13, 5 January 2009 (UTC)

That's a polemic response and definitely WP:POV. The FIRST question we need to address what are reliable sources. At that point we are in major disagreement. I'm about to start a topic here to address that foundational question. Once that is resolved, then we can ask if there are reliable sources that deems antibiotic and antvirals to be part of an effective treatment protocol. CBT is not a therapy but a coping strategy -- this article should be consistent in making that clear.

The question remains what (and who) determines what a reliable source is. See my new post when it appears. Lassesen (talk) 00:29, 5 January 2009 (UTC)

Recruiting

I am concerned by statement from Lassesen above, "Many in the CFIDS research community have been very upset on the recent editing of this article." Since Guido was community banned there are alot of people editing this article suddenly who did not edit before or they are editing after long absence. Is there recruiting to make a false consensus against medical sources, is my question. WP is not for campaigning for a cause like a name change for CFS. RetroS1mone talk 21:52, 4 January 2009 (UTC)

IMHO there is likely multiple WP:POV recruiting. Psychologists and people offering CBT profit from their offering being deemed to be the best treatment option. Many MD's prosper from being able to refer on to others patients that are beyond their medical knowledge and expertise (the classic MD ego issue).

Take the case of CFIDS coagulopathy, most family practise MD's do not wish to prescribe Heparin. They will refer to a hematologist. Hermatologists are rarely accustomed to dealing with chronic non-acute coagulopathy.

There is a signficant divide between main-stream medical sources consensus ("we don't want to deal with CFIDS patients because there are no pro-forma treatments") and the smaller CFIDS centric medical sources (for example, those that are publishing in the Journal of Chronic Fatigue Syndrome.

The surpression of even mentioning antibiotics and antivirals in the article speaks much about the dominate editors. For example, all of the SPECT studies showing hypoperfusion in CFIDS brains were deleted -- Why? Because it shows there is a real physical basis for the illness? Can you find any large study finding that there hypoperfusion is not common in CFIDS?

Lassesen (talk) 01:03, 5 January 2009 (UTC)

I doubt if it's anything as conspiratorial as "recruiting". My own reaction (but not editing) to the article, for instance, was based on the research I've been doing over the last several years since I got CFS and the knowledge I've acquired from reputable sources over those years. When I read the Wiki article, it didn't even remotely jive with the bulk of the information that I've seen and heard from those sources. The psychological aspect is one put forward by a minority of psychologists and very few others who've done any significant research in the field. That is not, however, how the article read when I looked at it again in late December. It had a very clear pro-psychological bent, and seemed to be recommending GET and CBT as "the best" (whatever that is) forms of treatment, where these have been clearly rejected by some researchers, and presented in a somewhat modified format by others (e.g., self-paced exercise that stays well under limits, and CBT used only as a mechanism to cope with long-term illness). I don't have the time or interest in editing an article that's this badly edit-warred, so I've chosen not to contribute beyond the occasional minor correction, and at this point, am giving up on Wikipedia as anything resembling a reliable source of information on this subject. --Rob (talk) 22:12, 5 January 2009 (UTC)

I wouldn't say that it is just "a minority" of researchers who have a pro-psychological bent. If you look at reliable sources, I would say it is close to 50/50, although it's hard to tell. There are a lot of well meaning researchers who are trying to prove that CFS is NOT psychological because they believe that a psychological etiology is somehow bad for patients. But from my own experience with people who have actually recovered from CFS, psychological factors have been the most important to recovery. I've been doing my own research into the illness for about 8 years now. Anyway this is all irrelevant for the article so I'll stop here. But if anyone is interested in discussing this further, feel free to email me. I'll also be putting some info about my POV/thoughts about CFS on my talk page soon. --sciencewatcher (talk) 23:50, 5 January 2009 (UTC)

Well if 50% of psychologist researchers have a pro- psych bent and 100% of others do not then 75% of researchers may not. Do you seriously think the Articles currently reflect that state? Like the psych researchers many of their studies are based on tertiary referal patients and are not a proper cross section of CFS or select to Oxford criteria that allows psych conditions. Not that I am against such research, only that it behoves Wiki to accurately define the population base of studies cited, so as not to confuse the reader, to beleive that somehow it is all the same. I do not know which population your observations are based upon, perhaps you could expand a bit? Jagra (talk) 01:43, 6 January 2009 (UTC)

No, I didn't say 50% of psychologists. I meant 50% of all researchers. But as I said, that's just a wild guess anyway. The article seems pretty much balanced. The only thing I would suggest is to trim the CBT section because it's already discussed in the treatment sub-article. My observations are based upon severe CFS as defined by both CDC and Canadian criteria (i.e. the patients would be diagnosed as having CFS under both), and having multi-system abnormalities in the immune system, neurological, physiological, heart problems, POTS, chronic pain, etc. Your POV appears to be that anyone who is cured of CFS using a psychological therapy didn't have "real" neurological CFS. This is a very common view among CFS campaigners, but it is completely wrong based on my experience. Anyway, back to the article now...if there is any research showing that different criteria give different results in CBT trials (or anything else) then it should go in the article. There is already a study which gives different figures for recovery using CBT depending on the definition for "recovery" used, but I'm not aware of any that actually compare the criteria used to diagnose the patients against the effectiveness of treatment. --sciencewatcher (talk) 02:19, 6 January 2009 (UTC)

It's not my impression of 50/50 at all, though in the UK where there seems to be a much larger group of psychological advocates, I'll admit it's probably closer to that. But the argument that because psychological factors have been the most important that the disease is therefore psychological is incorrect. People who are devoutly religious have also been found to have greater recovery rates from various illnesses in some studies. That doesn't mean that we should all go out and "find God". There again, it simply points to the fact that people who have a positive outlook and believe they'll get better are more likely to. (Though that brings up the argument of whether it's a real improvement or a delusion, but that's a whole 'nother ball of wax. Or you could argue that whatever god(s) they believe in are lending a hand...but that's going really far afield at this point. <g>)

Also, perhaps it's your 8 years of research that's the reason behind your views being more pro-psychological than mine. Back when you first started your research, that would've been a more predominant view. My research started just over two years ago, I think...about a year after symptoms first started that nobody could explain. By then, the psychological view was in decline, particularly amongst Canadian doctors, and being debated much more heavily by UK doctors. The US still believed that it was psychological by that point, though I'm seeing a substantial shift there in recent literature as well. My impression is that most European doctors have always considered it physical, but I'm content to be disproven on that...I didn't exactly do a study on each country's doctors' viewpoints. :D --Rob (talk) 10:26, 6 January 2009 (UTC)

I've replied on my talk page. --sciencewatcher (talk) 16:55, 6 January 2009 (UTC)

There you go again sciencewatcher used the word "cured" in relation to CFS, anyone who is cured of CFS using a psychological therapy you have been asked before for RS sources for the use of that word, or have i missed something of late? Jagra (talk) 01:37, 7 January 2009 (UTC)

Type "define:cure" into google and you'll see the definition of the word. My favourite is: cure - bring around: provide a cure for, make healthy again; "The treatment cured the boy's acne"; "The quack pretended to heal patients but never managed to. --sciencewatcher (talk) 04:41, 7 January 2009 (UTC)

My dictionary says of Recovery “a return to a previous state” whilst a Cure “is a return to health”. Further the connotation commonly associated with a cure is one of permanent change. For instance one can recover from a heart attack or stroke, but would not be considered by the average person (or reader) to be cured. CFS can be either sudden or gradual, which types were included in the treatment group? For a return to a previouis state for some does not necessarily mean to “full health”. So were the patients ‘post-viral’ or have comorbid or pre-existing psychiatric conditions? For instance if a patient lost one criteria symptom they would no longer meet the ‘CDC’ criteria for CFS (which criteria?) and would be classified, despite having many symptoms still as ‘recovered’ hardly cured, by any definition! Jagra (talk) 01:56, 8 January 2009 (UTC)

The patients were returned to perfect health with no relapses, which I think would be classed as "cured". We could discuss this further and I could answer your other points, but I think I would just be wasting my time. --sciencewatcher (talk) 02:35, 8 January 2009 (UTC)

Sw what follow up studies were done and at intervals? Answering your earlier query on recruitment; Comorbid presentation with psychiatric illnesses has been noted. Due to these fundamental issues, the impact of patient selection and the specification of the methods of outcome assessment loom large in therapeutic studies of CFS. The role of clinical methodology in the study of the therapeutics of CFS is not trivial, and may confound our understanding of pragmatic recommendations for treatment. PMID 16610962 Demitrack

Exclusions include a clear underlying organic cause, substance misuse, and psychiatric disorders such as psychotic depression. Less severe psychiatric disorders without Diagnostic and Statistical Manual (DSM)-IV-defined melancholic features or anxiety disorders or secondary depression are not exclusionary diagnoses and are found comorbid with CFS in some patients. Because high circulating cortisol is a frequent occurrence in major depression (7 ), this may clearly affect the results of these (HPA) studies. It is therefore vital to assess accurately the psychiatric status of CFS patients who participate in studies. (or treatments) Thus, although the subjects studied by Wood et al. (41 ) were said to have had a diagnosis of major depression excluded by clinicians, 5 of 10 subjects had Beck Depression Inventory scores within the mild-to-moderate depression range. This could have accounted for a failure to find reduced salivary cortisol levels. The same reservations apply to the study by Altemus et al. (33 ), whose negative findings were in apparently non-depressed CFS subjects who in fact had Hamilton Depression Rating scale scores consistent with mild depression. Similarly, the finding by Demitrack et al. (17 ) of impaired ACTH responses to CRH testing is also found in depression, and many of their subjects had comorbid psychiatric disorder. PMID 12700181 Cleare.

Most studies of Chronic Fatigue Syndrome (CFS) have been based on patients recruited from primary or tertiary care settings. Patients from such settings might not be typical of patients in the general population. PMID 12627607 So experts say it is important to clearly define the psych status of patients particually in treatment studies and WP should also define the recruitment and criteria used particually when citing treatment studies.Jagra (talk) 03:03, 8 January 2009 (UTC)

Ok, I am trying to catch up on conversations here, but from what I have read so far on this talk page is everyone needs to take a deep breath and calm down a bit. May I suggest this? Take one new ref and post it here under a new title then discuss the use of it both pro and con. Use the projects policies and decide if it is a reliable source. My undersatnding is that advocacy groups do not qualify for this type of article. I see a lot of editors posting now are patients, I try myself not to edit the Crohn's disease article too heavily because I have the disease so I have too strong of an opinion to edit there in my opinion. I am seeing too much emotion from some here too for the same reasons. It's hard to write an article about a disease you suffer from, esp. if you are part of an online group advocating for certain things. From what I have been able to tell so far is the CFS is the better known name, at least here in the US and according to the refs that were in the article prior to all these new editors that are here from when I was here. I don't think that RetoSImone is pushing anything here. She is trying real hard to follow policies here and I think it's unfair to judge her for that, let's try to assume good faith more. I just mention her because of the discussion for an RFC or calls to have her banned above. But I would like if someone would answer the question she put above and the title of this thread, is there offline recruiting going on? I think this is an important question that needs to be answered. I don't know much about this disease other than a few refs I have read and reading the article awhile back. I am sure by now things at the article has changed so it will take me time to get up to speed. I am not medical in anyway so some of the discusions going on are over my head and I will not respond to them unless there is a link that I can go to and read and understand. Like a few of you here have stated, my medical conditions also puts severe limitations on me, so I have to take my time. Thanks for listening,--CrohnieGal^Talk 16:37, 6 January 2009 (UTC)

Thanks for the comments Crohnie Gal If you wish to compare recent changes on a broad scale I suggest you compare the Article(s) from say last Aug to the current ones and I would be interested to hear your views, You are correct there has been a shortage of assume good faith by a certain editor, who has been asked a number of times to present evidence for her assertations, but is silent?, that is the more important question. Jagra (talk) 01:37, 7 January 2009 (UTC)

People often think they're NPOV-defenders, but can we stick to the validity of individual edits rather than stereotyping editors as activists or part of some cabal? I'm not aware of "recruiting" either, and sharing one or two comments on our talkpages over a period of nearly 2 years is hardly evidence of some unified front as implied by RetroS1mone. On the so-called "ME/CFS project", my main concern was having the article split at all, because this had been warranted for a long time; I merely provided some name suggestions and perhaps the occasional comment, but didn't participate in related edits as claimed. Occasionally using the term ME/CFS or CFS/ME out of respect for the history and controversy doesn't make me extremist, and neither does exploring the points made by "advocates/activists". Perhaps people started editing more after Guido got banned because of the holiday season? - Tekaphor (TALK) 08:25, 7 January 2009 (UTC)

Thanks for the responses. Question for Jagra, do you Aug '08 to present, or earlier? I also agree, lets try not to use names for editors like POV or anything else since it always derails discussions so lets just speak of the edits right now and not the editors. Another question, sorry if I am being dense, what question have you asked but not gotten an answer to? I see a lot of questions asked and attempts at answering. As for using the term CFS, CFS/ME and so forth, that was discussed at length not long ago and it was decided by the majority of editors and if I remember correctly some outside editors to go with CFS so as not to confuse the reader. Then the other terms were to be described in the article so the reader understood that there are multiple names for this syndrome. I think the hardest part for me with this article is the lack of knowing this disease. For example, Crohn's is a known disease, there is no doubt in the scientific community about it being a real disease and no doubt about it's name. But problems on that article comes from the disease having no known cure. There is evidence of genes, bacteria and so forth but some of it is under dispute, like the bacteria aspect, IE: MAP. MAP has been shown to help some with Crohn's achieve remission but for others it does nothing. I see this kind of conflict with a lot of areas of this disease. So we have to take the conflicted areas one at a time, present the refs, discuss the pros and cons and then try for a consensus for it. It is slow and hard to do but this is the only thing I can think of to make it the easist way to add new material about areas of conflict. And for the record, I am on who does NOT believe this is in your head type of illness. I got that diagnosis myself for two years so I want others here to understand that I do not ever say it is in your head. I will keep reading. Please continue to supply links and info to help me out if you feel like it. It does help me a lot to be lead sort of to what I am looking for. Oh another quick question, someone above questions the use of the word 'cure' above. Do you believe that there is 'no cure' or that 'some can be cured but others cannot because of extended damage and length of time, or that there is 'no cure at all'? For me this would help out alot since I think a lot in terms of 'no cure at all'. Thanks again, --CrohnieGal^Talk 12:27, 7 January 2009 (UTC)

Crohnie, interesting that you agree Article now not balanced. The request was from JFW the moderator RetroS1mone, it would be useful if you could support your allegation with a diff. I'm not personally convinced there is a cabal here, ---. JFW | T@lk 18:09, 3 January 2009 (UTC)Jagra (talk) 01:56, 8 January 2009 (UTC)

@ Jagra (and the others), first I hope it's ok that I corrected the spelling of my name, a pet peeve of mine to spell Crohn('s) correctly. I think the article can use some work yes. As for not being balanced, I am not that good of an editor so my judgement on some things are off, see my user page to understand my comment. You ask for difs, do you mean to show a cabal activity here? If that is the case, then review Guido's user and talk page history and the history of discussion on this article for comments he has made about "others who support and work with him." Personally, I tried real hard to help and also to understand Guido. I was unsuccessful in this and do not feel that dredging this stuff is useful to anything or anyone. As for a cabal I do find the comments concerning that have been mentioned here about recruiting help. I am not sure that there are editors working together to help get a certain view point into the article. I really think though that it would be more constructive to continue to talk about refs, the pros and cons and work from there. If there is outside forces talking about this, and I am not saying one way or the other, I would suggest this to stop as it is not helpful either. I happened to read your comments to WLU on his talk page about this and you made sense in some of the areas you talked about. I mean I agreed with you somewhat. I still feel that advocates are too emotional to work towards an NPOV sometimes which should be considered. What I am really trying to do is help with ideas that might not be thought of and to try to help keep discussions going without the name calling. Some of the refs being provided by advocate groups listed above I believe do not belong. I had this same problem when I tried to edit the Crohn's disease article with trying to put refs in that didn't follow policy. Sometimes it feels right and true to give all the truth in an article but this is not what we do. We have to follow the refs and say what their conclusions come to. I do find that the policies are being read from a different perspective thus there is a problem with deciding whether something is a reliable source. Policies here can be interpretted differently by editors which is why is suggest again to list one ref at a time and discuss it. Asking for a list of what one editor feels is a WP:RS really isn't helpful in my opinion. I also don't think listing a bunch of refs at one time is helpful because the discussion gets confusing and tempers rise. Finally, patients do have a view of things but unless there are reliable peer reviewed refs, they shouldn't be allowed. To me this falls into the likes of testimonials which also aren't allowed. I hope I am making sense, didn't sleep well so a little unfocused today, sorry for that. I hope I am helping some, if not please advice me of this and I will bow out of the conversations. I don't want to inflame anyone or cause disruptions with my comments. Thanks again for listening, --CrohnieGal^Talk 12:46, 8 January 2009 (UTC)

There has been recruiting by editor Lassesen on his message board. I am saying it bc Lassesen already says he is internet activist on his talk [31], he is moderator from major message board about CFS. The message board has alot of patients on it, it has sections of free advertisement for Rife machines and electrocures and all kinds of other unproof and dangering cures. Unfortunately it is private board you have to join to see it but my friend is on it, and he sent me some of the stuff from there. There was a thing about Wikipedia where Lassesen said about how bad this article is and they make sarcastic comment about Wikipedia, but the original message is not there any more just the reply and part from original,

What is the point of trying to find viral or environmental ortoxicologic causes or cures for peoplewith the "impossible" to treat "chronic fatigue syndrome"? Its soooo expensive to keep testing and treating for this virus or that. If someone has (nudge nudge, wink wink) "CFS", just give up! "Just give em whiskey!" On Sun, Jan 4, 2009 at 4:35 PM, Ken wrote: "The CFS page does not have a single reference to antiviral or antibiotics." RetroS1mone talk 04:21, 8 January 2009 (UTC)

Thanks Crohnie be assured you are not causing disruptions, but I think others could also show 'good faith' and accept comments from editors about cabals, I certainly do not want to add to 'dillusional' paranoid acussations although I could! The comments above are not evidence but speculation, and comments have been made about wiki CFS bias by other organisations even on this page. There seems to be a feeling among patients that they are subjected to 'supervised neglect' by medical authorities . Wiki can offset this by showing in a balanced manner the range of findings and views, and that should be the aim of all editors. It seems from what I read here that this Article is now perceived by patients (readers) as having been 'captured by vested interest groups' I would hope that Wiki can see the danger in this! It seems too many subjective assessments are being made citing MEDRS and trying to enforce these as 'rules' it is after all only a guideline! Agreement on reliable sources and authors on this page would seem a sensible step to further clarification. Jagra (talk) 00:51, 9 January 2009 (UTC)

Just for the record, the 'splitting' of the Article was carried out as it has become unweildy and one of the largest articles in Wiki at the time, it was by consensus, with few objections. The material for the Article(s) was derived almost entirely from the existing origonal, developed over many years by editors of all persuasions, and was conducted thru the Talk page where any editor could have contributed, even the drafts were available for editing by anyone before posting, none of it was done in some 'secret advocacy' meeting place, (unlike some recent changes/amalgamations) and it is all in the Archives. It is hard to see how anyone can now say so blatantly that it was split by 'advocates' and then attempt to associate that with an editor who was to my recollection only marginally involved anyway. There is too much conspiracy theory and misinformation being peddled of late intended to discredit others, it cannot go unchecked even though it is a waste of everyones time, and frankly we need someone to control it. Jagra (talk) 02:42, 9 January 2009 (UTC)

Two things Jagra, you, Ward20, and a third editor made the subarticles together, i did not say it was a secret conspiracy, Guido thought of you as a group, may be you did not. I said it is not wrong to work like a group, you were doing stuff you thought was right. Problem, the articles were all getting like big literature reviews of the primary literature, they were not encyclopedic. That is why there is a guideline, MEDRS, and WP tries on reporting from published peer review expert articles, reviews in good sources. It is not wrong being an advocate or activist, that is great, I have said that so many times I respect patients, there views, I think Lassesen is doing a good thing at his message board, also Guido at his organiztion. It is just a problem when you put stuff in a WP article w/o good sources basing from your original research and opinions not medical rs.

Second thing is, this is totally seperate, recruiting is hapening the evidence is there when people want to look at it I am not going to show more and do detective work, that is not a good use for my time. Lassesen was the person that gave the link to the message board on his talk, he used his own name, he gave his biographical details, his letter in the Lancet and stuff. Do you say Lassesen is not an advocate, do you say there is no recruiting. Lassesen said, the message board he does is to promote experimental treatments. That is a great thing for a message board, not Wikipedia. I am not in conspiracy theory, it is blatant activism and recruiting happening there.

At my talk page, there is a suggestion from David Ruben, he gives very good advice to me and us, can people pls read and say what you think. RetroS1mone talk 04:13, 9 January 2009 (UTC)

Retro, You say above, It is just a problem when you put stuff in a WP article w/o good sources basing from your original research and opinions not medical rs. Now given that I have NOT edited an Article yet, this time, it is hard to see how you could make that comment about me! When you make indirect accusations like that, be decent and provide a Diff. otherwise I am entitled to say that this is more deliberate misinformation being peddled by you! Your apologist SW beleives in time you will learn to be courteous and I am prepared to accept his judgement, after all he has worked in a group with you for some time! It may just be your difficulty with expression and syntax, but it is not for other editors to tolerate but for you to change.

I'd prefer to just ignore all this, but seeing as you have dragged my name into it let me just say this: you, Jagra, have displayed a lot more discourtesy than Retro recently. And as far as I remember I never said that Retro was discourteous anyway. At no time has Retro made personal attacks or been uncivil, whereas you have displayed many instances of both recently (and your "apologist" comment above is your more recent example). You have been on wikipedia a long time and there is no excuse for you not knowing the rules by now. Listen people: let's just drop this ridiculous mudslinging match before someone gets banned! --sciencewatcher (talk) 01:10, 10 January 2009 (UTC)

This is what I was refering to SW, and hasn't quite learned that you can't force (what you believe to be) the truth on wikipedia. Anyway, I don't see her as being disruptive, and hopefully she'll learn from this at least consider other POVs before making changes in future. --sciencewatcher (talk) 16:44, 6 January 2009 (UTC) Now is that not being discourteous and apologetic? As to not making personal attacks, others also said her nameplating was just that! If you wish to point out my discourtesy I will recant if you show it is inappropriate. But I take your point and to coin your phrase 'hopefully she'll learn from this' and choose her words more carefully, as I have tried to explain with an example above her real intent is difficult to understand at times and perhaps i take offence too readily, particually after repitition. Jagra (talk) 02:15, 10 January 2009 (UTC)

This, Problem, the articles were all getting like big literature reviews of the primary literature, they were not encyclopedic. is your opinion and you are entitled to, but that does not make it correct, kindly read the Talk page archives for that period. MEDRS at that time was not as widely accepted. An editor(s) JamesStewart7 about a year ago tried to introduce something similar (but not MEDRS) as I recall, consensus did not accept only secondary reviews and instead reviews and primary papers were used in conjunction where appropriate. This was accepted as correct practice at the time of the split. It was also considered useful to the reader to list main primary papers or more recent findings with a review. So there is clearly a different view currently on what readers want or are capable of understanding. If they are prepared to wade into a medical science Article, and there should be room for differentiation between the main and sub-articles. I have made comments on MEDRS on this page and do not feel the need to defend or repeat that. Essentially though IMO the problem is less with MEDRS and more with the slanted interpretatios of it by POV editors. Just to repeat it again so you are clear, I am neither an advocate nor activist but an editor. Jagra (talk) 00:49, 10 January 2009 (UTC)