Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 18

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New edits

I generally agree that most of the newer edits by Doc James improved the article but I have disagreements with some. I wanted to discuss them to see if there is consensus.

• I don't believe serious symptoms in the first sentence of the lead is as accurate as debilitating symptoms. A majority of the recent reviews and guidelines seem to use the wording "debilitating symptoms" to describe the illness.

• I disagree with separating the Oxford criteria from the other criteria as they are all used for clinical and research purposes. I believe they should be recombined and possibly the title renamed to better describe the section.

There are some other wording changes that may improve the article here and there. Now that the sections are rearranged and simplified it has exposed other weaknesses in the article. But these seem to be minor and in time copy editing should fix these. Good job Doc James. Thanks. Ward20 (talk) 15:31, 7 May 2015 (UTC)

Agree that overall this is an improvement - although it would have been good if DocJ could have at least outlined his strategy on this page given the scale of changes. I agree with Ward that 'debilitating symtoms' is a far more useful term. As regards the split of the Oxford reference - I think that is wholly logical and I would keep DocJ's edit; Oxford was developed specifically for Research and as far as I'm aware has never been expressly employed in a clinical setting. I haven't been able to go through all the changes,although something did stand out as problematic (not sure if new or old) is:

• Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have shown moderate effectiveness for many people in multiple randomized controlled trials. Many seems far too ambiguous, certainly PACE only showed notable benefit for a minority.

I also agree with Ward that the new presentation shows up deficiences in the article. Some sections look somewhat bloated relative to the information given the reader, and it might be worth looking at reductions where daughter articles exist.--In Vitro Infidelium (talk) 17:24, 7 May 2015 (UTC)

Sure so I had two goals

1) to order this article to match the outline used for other conditions per WP:MEDMOS

2) to simplify the language to make the lead more accessible specifically Doc James (talk · contribs · email) 20:38, 7 May 2015 (UTC)

How about rather than "CFS is a medical condition characterized by significant symptoms, including fatigue, that lasts for a minimum of six months in adults (and 3 months in children or adolescents)."

"CFS is a medical condition characterized by symptoms, including fatigue, that lasts for a minimum of six months in adults (and 3 months in children or adolescents). These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities.[1]"

rather than use the complicated word "debilitating" we can simply write what it technically means "limited ability to carry out ordinary daily activities"

By the way the new MedlinePlus content is in the public domain and therefore we can use it verbatim. They have partly dumped ADAM. Doc James (talk · contribs · email) 20:43, 7 May 2015 (UTC)

I suggest "CFS is a "devastating and complex" medical condition characterized by fatigue and other symptoms that substantially limits a person's ability to carry out ordinary daily activities. The illness must last for a minimum of six months in adults (and 3 months in children or adolescents) in order to receive a diagnosis.[2]" Ward20 (talk) 10:32, 8 May 2015 (UTC)

That is more complicated IMO. Also does not have a very encyclopedic tone. Doc James (talk · contribs · email) 17:06, 8 May 2015 (UTC)

I think the term "devastating" is too subjective, and the disease varies from one person to the next anyway. While certainly life-altering for me, I think "devastating" would be a bit strong of a term, while others who are permanently bed-bound most certainly are devastated by the disease. I have no objections to the term "complex", though—after all, if it were simple, we'd know exactly what it is by now—and I like the idea of including wording that specifically references the change to ordinary daily activities, since even milder cases of it usually have a notable impact in that area. – Robin Hood  ^(talk) 19:24, 8 May 2015 (UTC)

OK, here is a mash up for consideration: "CFS is a complex medical condition, characterized by fatigue and other symptoms, that lasts for a minimum of six months in adults (and 3 months in children or adolescents). These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities.[3]"

Ward20 (talk) 07:03, 9 May 2015 (UTC)

Could we simplify it a little further to "CFS is a complex medical condition, characterized by fatigue and other symptoms, that lasts many months. These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities."

We can than describe the exact number of months in areas as the exact number of months IMO is not the most important. Doc James (talk · contribs · email) 16:04, 9 May 2015 (UTC)

I'd suggest changing the wording to "long-term fatigue and other symptoms", if we're going to simplify it to that extent. As worded there, it sounds like the disease comes for a few months and then goes away again, which obviously isn't the general case. – Robin Hood  ^(talk) 17:42, 9 May 2015 (UTC)

Yes, using the wording, "long-term fatigue and other symptoms" I would eliminate "that lasts many months" as that term would then be redundant and possibly ambiguous as to the illness duration. Ward20 (talk) 18:01, 9 May 2015 (UTC)

Sounds good. Doc James (talk · contribs · email) 18:12, 9 May 2015 (UTC)

• The problem with that suggestion above is that 'Myalgic Encephalomyelitis' now redirects here. That is not long term 'chronic' fatigue. It is exhaustion that comes and goes -dependent on the amount of activity, both mental and physical. We have both 780.71 & G93.3 locked into one article. It would be better to separate them again. One code, one unique article article. Otherwise, it continues to go against, all we have been taught about about correct nomenclature & taxonomy. That established form is the correct way (as an encyclopaedia) to organize things. --Aspro (talk) 13:33, 10 May 2015 (UTC)

This suggestion has been brought up many times in the past. The problem is that there's no broad agreement that ME and CFS are two separate things. Before we can entertain separating the two, there would have to be significant support for the idea in the medical literature from government health agencies, in the various journals, that sort of thing. The ICD itself doesn't make the clear distinction, and the two codes you're referring to are in different versions of it, so we can't say that they're two different entries for two different diseases. Also, contrary to your assertion, for many of us, there is chronic fatigue (and other chronic symptoms, of course) which gets a lot worse when we exercise. The new SEID criteria, for example, even suggests that "The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity." It's been a while since I've read them, but as I recall, the CCC and ICC allow for both intermittent and chronic illness, and make no distinction between them. – Robin Hood  ^(talk) 15:32, 10 May 2015 (UTC)

Is it any wonder that “This suggestion has been brought up many times in the past.”? This redirect (ME to CFS) was done some years back, when a number of psychiatrist (who have become known as the Wesley School) gained some traction in convincing people that ME was psychological in origin. Yet there was never any logical reason offered, to lump CFS (associated with cancer etc.,) with and other codex designations. Prof. Wesley has now excused himself from this and so we should re-split the articles. It will make the wording easier. Trying to blend a conclusion from two different premisses, was discovered by the Greek philosophers to be impossible. Now that, that Prof (that original promoted this), has backed-out himself, from wanting to lump all these sign and symptoms together -then what is the point of WP still lumping everything together? This problem didn’t exist before the redirect. The redirect only serves to confuse. So why not go back to where we were before? To say this problem has cropped many time since the redirect is maintaining a circular argument. --Aspro (talk) 16:05, 10 May 2015 (UTC)

"characterized by long term fatigue and other symptoms" does not mean that "long term fatigue" must always be present. It is just a common symptom. Both are two such a degree that functioning is affected. So the text we have is correct for both terms and thus I see no reason to separate. We can discuss the finer details in the body of the article. The lead is for generalities. Doc James (talk · contribs · email) 16:19, 10 May 2015 (UTC)

Many a malady has over-lapping signs & symptoms. Are you suggesting, that using your logic, I can do a blitz on WP and redirect multiple article with over lapping symptoms? As to “We can discuss the finer details in the body of the article.” Chronic_fatigue_syndrome#Comorbidity just takes up 4 sentences! I see where you coming from, yet the problem (in part) lays with the word 'Syndrome'. CFS is not a pacific disease. Denying finer taxonomies their own article is taking a step backwards and sitting on it. The article CFS would make more 'rational' sense if included See also to the other codexes and definitions. If we were only to stop bitching amongst ourselves, an epidemiologists (or two or three) may be willing to contribute. But professionals steer clear of articles where they find, that as anybody can contribute to WP, their own contributions get deleted as fringe because other editors were only exposed to the superficial, simplistic explanation in med skool. I agree with Doc James that we should discuss this in finer detail – yet, for that to be productive, we need to have those discussions in the right article talk pages. Otherwise we might as well say to all the WP editors they can forget nomenclature & taxonomy, and just edit in a way that makes them feel warm inside. The reason that “This suggestion has been brought up many times in the past” is because some people 'care' and are willing to question past dogma and bring their learning up-to date. Split the article back again and then see if anyone can come up with a justifiable reason to bring about a consensus to redirect. --Aspro (talk) 20:11, 10 May 2015 (UTC)

Actually, I never said anything about the previous redirect, I said that the suggestion had been brought up in the past. I'm aware that there was redirect some time ago, and I'm aware that, both currently and in the past, there have been people editing the wiki that have both pro-physiological and pro-psychological viewpoints. I believe, in fact, that most of us currently monitoring the article believe in a physiological basis for the disease (i.e., we're not of the Wessely school). None of that has anything to do with what the medical literature says, however. If you want to suggest a split, you need to find reliable medical literature that says they're two clear and distinct diseases. It's really that simple. The ICC states that those with ME should be excluded from CFS, which is an excellent starting point, but one diagnostic criteria out of some twenty or more is not sufficient to justify the split. So, what other significant medical literature or bodies suggest that ME and CFS are separate? If you can find a couple of things like that that comply with Wikipedia's requirements, the split can happen anytime. In the absence of such evidence, however, Wikipedia's own rules say that the split can't happen. – Robin Hood  ^(talk) 06:13, 11 May 2015 (UTC)

Aspro, you brought up the same topic here in February and the same arguments are being rehashed. Right now there seems to be more reliable sources equating cfs and me than separating them. If you can prove otherwise than great, produce the sources.

There is a chance this topic will heat up in the medical literature in October of this year when ICD-10-CM is implemented, and USA doctors will have to choose between diagnosing one or the other because the two diagnosis codes are mutually exclusive. Note it lumps and Chronic fatigue, unspecified and Chronic fatigue syndrome NOS together which is bound to cause issues:

"G93.3Postviral fatigue syndrome

Benign myalgic encephalomyelitis

Excludes1:chronic fatigue syndrome NOS (R53.82)"

"R53.82Chronic fatigue, unspecified

Chronic fatigue syndrome NOS"

I would advise either presenting reliable sources to back up your suggestion now, or waiting until After October to see if more reliable sources back your suggestion then. Ward20 (talk) 09:12, 11 May 2015 (UTC)

Thanks to Doc James for explanation of strategy which makes full sense of the changes. @Aspro - we've been through this at length previously. Let's be absolutely clear - there never has been a WP article based on ICD-9-CM that was separate from an article based on ICD-10 or any previous ICD iteration. There were, some years ago seperate CFS and ME articles but both referenced ICD-10 and ICD-9-CM, and neither article would now meet current WP standards. Without any MEDRS to base a split on this is a dead issue unless perhaps, as Ward20 suggests something arises from conflicts within the operation of ICD-10-CM. Given that ICD-11 is in preparation, that it will be a more complex iteration than ICD-10, and that there is a potential for SEID to enter classification in both ICD-11 as well as in ICD-10-CM annual updates, setting out to create separate CFS and ME articles at this point would seem foolish given the level of effort involved, and that major re-evaluation may be required on a continuing basis over the next one to two years. --In Vitro Infidelium (talk) 17:28, 12 May 2015 (UTC)

Aspro is right, ME/PVFS/Iceland disease/Akureyri disease should not redirect to the CFS article. WHO ICD G93.3 should have its own article. The former mentioned disease names/descriptions/ICD entries existed long before CFS did and it makes no sense to subsume them under what is clearly an ICD-9-CM CFS based article. It leads to ridiculous confusion, like the box on the top of the page listing classification. It lists the ICD-9-CM code for CFS but then the WHO ICD-10 code for PVFS. As mentioned above, this should be changed soon to reflect the upcoming ICD-10-CM classifications (to be clear, it should say ICD-9-CM 780.71 and ICD-10-CM R53.82), and clearly I think the fact that the ICD-10-CM lists them as separate, exclusionary diagnoses supports the creation of a separate PVFS/ME article. Don't hold your breath for ICD-11, it's a long ways off and ICD-10-CM will likely be in use for a long time to come. Anal0gue (talk) 19:19, 17 June 2015 (UTC)

Again, where is the evidence? I know it's the in thing in the ME/CFS activist community to try to separate ME and CFS, but there's really no broad agreement on whether they're one disease, two, or a hundred. The fact that the ICD and International Consensus Criteria suggest a split is certainly a step in that direction, but we're not at the point yet where we can justify a split based on Wikipedia's guidelines. In order to do that, there needs to be broad agreement that ME and CFS are clearly separate things, and there needs to be supporting evidence. Otherwise, we end up creating a POV fork, and simply duplicating most of what's here on both pages. When there's solid evidence that they're two separate conditions, that's when we split them on Wikipedia. – Robin Hood  ^(talk) 21:46, 17 June 2015 (UTC)

It's also the "in thing" in research to try and separate them because it's an important question that needs to be answered. Leonard A. Jason has been doing work in this area and reports that ME criteria select out a different patient group than CFS criteria. That's pretty compelling evidence for a difference. Without a biomarker we'll never be able to definitely say they're different. It's also a bit of a double standard. While I don't have any solid evidence that they are different to support a split, you don't have any solid evidence that they are the same to maintain a single article. With the way this article is now, it's too narrow of a POV, only focusing on US Fukuda CFS. I imagine it would rustle everyone's jimmies if people started adding ME specific information in this article and it would be rolled back, much like if someone tried to populate the ME article with ME specific information. In this way, all information about ME is unfairly suppressed. It has nothing to do with activism. Anal0gue (talk) 19:53, 19 June 2015 (UTC)

Yes, you're right, it is a very important question, and I firmly believe that different conditions will be split off in the future as evidence becomes available. Various pilot studies that I've seen over the years I've had this have suggested that what currently gets grouped under the term "CFS" may be as many as seven or eight different conditions, while others suggest that it's just one, with a very broad array of symptoms. Anyone looking at forums will see some fairly substantial variations between patients, which is why I personally believe it's more than just one thing, but I can't prove that, and so far, neither has anyone else. Even those who are proponents of separating ME have yet to prove that the encephalomyelitis occurs in all cases of CCC/ICC-defined ME. Last I heard, there were only one or two very preliminary studies that suggested that that was the case, not anything resembling proof. As for selection criteria, that's a no-brainer, though certainly Leonard's work is going a long way to formalizing the results. The simple fact is that if the criteria always selected the same groups, the debates over what criteria to use wouldn't be happening and a lot more progress would've been made on this/these condition(s) by now.

As for a double-standard, it's not at all. Most of the literature currently still treats them as a single entity. Can they prove it? No, of course they can't, because we don't have any kind of known etiology at this point. But since the literature mostly treats ME/CFS as a single thing, so must we. If the majority of the literature starts treating them as clearly separate things, or better yet, clear proof comes out that they're separate things, then Wikipedia will absolutely follow suit and I'll be the first to propose/support such a split. Given that they're mostly being treated as a single thing right now, by all means, go ahead and add whatever ME-specific stuff you can find. Just be aware of the restrictions set out by WP:MEDRS, which require that studies by reliable, secondary sources, for the most part.

Finally, as for Fukuda-defined ME/CFS, I'm curious where you see that. If the scope of the article is in any way too narrow, then by all means, we should expand it to ensure that we're presenting a clear, accurate picture of things. Unfortunately, most of the times people have brought forward that suggestion, it's based on whatever preliminary research or unproven assertions (even if those assertions are by experts in the field) are currently popular in the forums and/or the activist community. Wikipedia doesn't work that way, one of its major precepts being verifiability, not truth. – Robin Hood  ^(talk) 20:34, 19 June 2015 (UTC)

Also, can you point me to which Wikipedia guideline would be against a split of the two? As far as I can tell, this is a pretty unique scenario, there don't seem to be many diseases with more than one (or in the case of ME, 7+ names). I actually spent almost an hour going through the ICD-10-CM and WHO ICD-10 looking for another example disease so I could see how it was handled on WP but couldn't find one. It's also a little weird to me that SEID redirects to the CFS article. It's going to have its own, likely separate ICD code. It has it's own history and diagnostic criteria. The whole point of the creation of SEID was to move away from the inaccurate, stigmatic CFS name. And here we are redirecting SEID to CFS. Anal0gue (talk) 00:29, 20 June 2015 (UTC)

(edit conflict) Let me come at this from another angle: let's say a split happens. Without question, on both the ME and CFS pages, we would want to define how the two are different from one another. Provide the text for that distinction, with reliable references from sites such as PubMed. (Sorry, looks like we just cross-posted, I'll respond to the above message in a sec.) – Robin Hood  ^(talk) 00:33, 20 June 2015 (UTC)

Why does it have to be a medical literature based distinction, can't it be a historical distinction? Wikipedia is an encyclopedia, not a medical text book. There is a history and information about ME that existed for decades before CFS was even invented. Shouldn't that information exist in an encyclopedia, underneath the appropriate heading? Anal0gue (talk) 00:54, 20 June 2015 (UTC)

Here is the text for the distinction, right out of the ME ICC paper, indexed on Pubmed:

″The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).″

Yes, a lot of the literature uses the terms interchangeably, but that doesn't make it right. Strictly speaking, if a paper uses one of the CDC criteria, it should say CFS. If it uses the CCC, it should say ME/CFS. If it uses the ICC, it should say ME. If it uses the IOM criteria, it should say SEID. Anal0gue (talk) 01:12, 20 June 2015 (UTC)

(←) I pointed you to the relevant guideline above: POV fork. You're certainly correct that this is a fairly unusual situation. The only similar situations I can think of went in the opposite direction, merging two diagnoses into one. The first is sociopathy vs. psychopathy. Currently, those are the same article because the popular belief in psychology is that they are. Twenty or so years ago, they would likely have been two separate articles. Another one is the debate about high-functioning autism vs. Asperger syndrome. Amusingly, despite the DSM-5 doing away with the diagnosis of Asperger's, we still have two separate articles. I haven't looked, but I wouldn't be surprised if those pages have had a lot of similar split/merge debates because I believe they're both still considered contentious issues.

As far as SEID goes, that's definitely going to be another one to keep our eyes on. At the moment, it redirects here because even though the different diagnostic criteria come up with different results, they're all trying to evaluate the grouping known broadly as CFS, of which ME and/or SEID may or may not be a part. If the term SEID becomes accepted and widely used, and even more so if it defines a clear disease process that can be distinguished from other things currently grouped under the CFS umbrella, then I think we could entertain renaming or splitting the article. Right now, though, SEID is only a proposed name from an American institution and the criteria for it still need to be evaluated for how effective they are at identifying patients.

Responding to your next post, we do have some of the historical definitions under the History section, plus of course that links to an entire article about the history. If we ever do split this article, some of that would definitely go into the new one and quite possibly end up being removed from here, depending what is seen as being included/excluded in CFS at that point.

And for your most recent post, I'll let others comment, as I'm less neutral on that issue than someone else might be (amusingly, I'm both for and against a split, simultaneously, which is a very confusing position to have). Even with the ICC bit that you quoted, though, that would support a renaming, but not necessarily a split. – Robin Hood  ^(talk) 01:19, 20 June 2015 (UTC)

Another reason not to split at this time is the 2015 study Distinct plasma immune signatures in ME/CFS are present early in the course of illness. Some definitions may not be describing different illnesses, but may instead be selecting different phases of the same illness. In any event the material that is now being discussed can be used in the article Clinical descriptions of chronic fatigue syndrome with secondary sources showing how the people described vary with the definitions used. That article is in need of an overhaul anyway. Then if secondary sources start to split off subgroups per various definitions, new articles could be developed from there.Ward20 (talk) 08:02, 20 June 2015 (UTC)

The Lipkin/Hornig study is not a very compelling argument for ME and CFS being the same thing. The inclusion criteria for patients in that study was Fukuda *and* CCC, plus they had to have developed the disease following a viral illness. The last part is key and probably heavily selected out the real ME (aka post-viral fatigue syndrome) patients. There is a new paper out by Twisk that concludes that ME and CFS criteria define two overlapping but distinct clinical entities. He states plainly that ME is not equivalent to CFS. Anal0gue (talk) 01:13, 24 June 2015 (UTC)

That's still one person's opinion. Until it becomes broadly accepted, Wikipedia cannot take the stance that the two diseases are distinct. As Ward says, we don't fully understand yet whether we're looking at one disease or many. Any splitting of the article needs to wait until the science is more certain. – Robin Hood  ^(talk) 14:57, 24 June 2015 (UTC)

Anal0gue please read WP:MEDRS. It really is pointless reference trading when the references simply don't meet WP's basic requirements. For a major change to the article structure such as splitting into two new (and largely mirror) articles, we would need some very strong WP:MEDRS recognised material - at least two separate publications would likely be required to underwrite a sustainable split. It may be frustraing but WP is rules based (mostly) and innovations tend to stand only when the rules (in this case WP:MEDRS) are fulfilled. --In Vitro Infidelium (talk) 16:08, 24 June 2015 (UTC)

I understand the requirements, but please show me two separate secondary sources that confirm ME and CFS are the same thing supporting a merged article. This article is full of primary source references. If it wasn't, the entire article would probably be about 3 paragraphs long. There are very few secondary sources for this disease because there is so little known and so little research. The most recent secondary source, the AHRQ report, should barely get away with using ME in the title. Yes they included research using the CCC ME/CFS criteria, but they also purposefully cut off the literature search at 1988 because this is when the first CFS definition came about. They ignored decades of ME only research on purpose for reasons I can't begin to understand.

I don't believe the articles would mirror each other if they were split which is why I advocated for splitting them in the first place. The ME article could be based on secondary sources from 1934 to 1988 covering ME, and any other sources after that based on research using Ramsay/London, CCC, and ICC criteria. The CFS article could remain based on any secondary sources using Reeves/empirical/Fukuda criteria. Anal0gue (talk) 22:24, 24 June 2015 (UTC)

@Anal0gue: The NICE guideline, for instance, lumps CFS and ME together. Many others do too. There is loads of research but a lot of it is of dubious quality and just confuses matters. As for "ignoring ME research", that's a question you need to ask the authors of the criteria.

I think you're going to find it difficult to find consensus for your proposal to fork the ME article. It's been discussed before and things remain the way they are currently. JFW | T@lk 22:54, 24 June 2015 (UTC)

Yes, the NICE guidelines refer to CFS/ME, but as far as I know there's no evidence reviewed there that prove ME and CFS are the same or different. Anyone can write "ME/CFS" when they're writing up a research paper, but that's different than actually doing a study where you compare patient groups diagnosed with the different criteria and proving they are the same or different. As I mentioned above, there is some work in this area with some preliminary findings showing they are different but it needs way more study.

I see there is little support for splitting the articles but I remain unconvinced that it would be against WP policy if done correctly. Has it ever been proposed to rename the article to myalgic encephalomyelitis and redirect CFS to it instead? The ME name has been around far longer and is also less US-centric. As shown above, the ICC (a secondary source) recommends use of the term ME over CFS and was penned by the worldwide experts in the disease. Additionally this 2007 review by Hooper recommends the same. Anal0gue (talk) 04:52, 25 June 2015 (UTC)

It would be against policy if there's a consensus not to fork and then you fork anyway. The arguments for splitting have been debated in extenso before.

Old names for diseases are often abandoned or subsumed (e.g. the name "consumption" for "tuberculosis" or "Wegener's disease" for "granulomatosis with polyangiitis"). The ICC criteria are extremely inclusive and Hooper's review is rather controversial. The new IOM report, probably one of the most authoritative voices one will ever hear on the subject, explicitly includes ME.

Incidentally, have you come to Wikipedia only to have a discussion on this subject, or are you planning to make some other contributions? JFW | T@lk 07:36, 25 June 2015 (UTC)

I'm not talking about other diseases, I'm talking about ME, and as I pointed out the world experts on the disease reached a consensus in 2011 and recommended calling the disease ME. That's pretty far from abandonment. Yes, I came wanting to make contributions on ME because there seemed to be a dearth of information about it on WP, and now I see why. Anal0gue (talk) 08:13, 25 June 2015 (UTC)

There is a dearth of the kind of information that you would like to see. As it happens, the content on Wikipedia develops by consensus, and that's why it looks the way it looks. Over the years there has been lively discussion on this talk page, with representatives from all schools of thought in this area.

Short of forking the content about ME, what improvements to the article do you propose? JFW | T@lk 12:18, 25 June 2015 (UTC)

JWF, could you perhaps explain why you think it would be a fork? At first glance, I see nothing in this article that would reappear in an article on ME. Cheers, The Jolly Bard (talk) 22:06, 26 June 2015 (UTC)

It would not be a fork but returning to the situation before ME and CFS was erroneously combined. The original medical proponents have now distanced themselves from their hypothesis – so their argument is now moot...i.e. Irrelevant. Why should WP not be able to correct itself for the sake of some editors that cling to out of date dogma?--Aspro (talk) 23:44, 26 June 2015 (UTC)

The names "chronic fatigue syndrome" and "myalgic encephalomyelitis" have, at least for the last 20 years or so, generally been used synonymously. There's still no consensus in the broader medical community as to whether they're one disease or several. Splitting the article at this point would only lead to a huge overlap in content because of that issue, and the parts that don't overlap would be based on an emerging belief that lacks solid scientific evidence. There's certainly very suggestive evidence, but I don't think it's strong enough at this point that anyone can say with certainty what it is that differentiates them. Some have suggested that post-exertional malaise is a distinguishing factor, and personally, I believe that may be true, but I can't ignore the possibility that it could be like hyperactivity in ADHD...there are a group of ADHD patients where there is clearly little or no hyperactivity. – Robin Hood  ^(talk) 22:39, 26 June 2015 (UTC)

Like I said, I don't see the overlap that you suggest. ME has a different definition from CFS altogether, so there is no need or incentive to find evidence that they are different. I would not copy anything from this CFS article. The Jolly Bard (talk) 23:11, 26 June 2015 (UTC)

The signs might be identical but the symptoms are very much different. A cohort of children may all show the same reddish rash but other signs and symptoms may indicate that some need antibiotics P.D.Q ('pretty damn quick'). ME might be slower but people can and do die from the complications. It doesn't mater what one dies from -the end result is the same. Do I need to emphasize that.. rigour mortice sets in and YOU are no more. Medial science progressed by creating a nomenclature whereby patients started getting the right treatment for the right malady. Please don't try to turn the clock back with argument from out of date authority. One doesn't need evidence that disconnected conditions are not related – rather the revers.--Aspro (talk) 00:28, 27 June 2015 (UTC)

Edit Break 1

ME has a different definition than CFS and the symptoms are different? Really? Where do you guys see that? Provide good, solid, widely accepted evidence and we can split this article tomorrow. So far, nobody has done so. – Robin Hood  ^(talk) 06:09, 27 June 2015 (UTC)

Just to further the point, by evidence, I mean things like the following:

• "In some countries the disease is referred to as ME and in others as CFS and has now become known as ME/CFS until research indicates whether a more suitable name applies." (ME/FM Action)
• "'Myalgic Encephalomyelitis' and 'Chronic Fatigue Syndrome' are used interchangeably and this illness is referred to as 'ME/CFS'." (Canadian Consensus Criteria)
• "Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS, is a disease..." (IOM Report, bolding mine)
• "...chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME)..." (Better Health Channel, government of Australia)

These are just a few that I picked at random, trying to go for a wide variety of sources. If we're going to entertain a split, you have to find sources that clearly state that ME and CFS are different, and that the sources above are simply out of date. – Robin Hood  ^(talk) 07:17, 27 June 2015 (UTC)

You are correct that many sources say that ME and CFS are often used interchangeably - that is, by these same sources and the governments that pay them. That by itself is a phenonemon worthy of an article. However, none of the references above represent any kind of authority on the matter, as they are entirely self-serving. You're looking at the issue from the wrong angle. The question is, is there any evidence in your sources that supports the idea that ME and CFS are synonymous. There is not. Therefore, a conclusion of synonymity is original research, and carries no weight here.

Now, I've looked through the references currently used in this CFS article, and of the 148, there is only one that would be found in an article on ME (Carruthers 2011). Cheers, The Jolly Bard (talk) 12:32, 27 June 2015 (UTC)

The IOM, by the way, begin their report by stating that ME and CFS are different diagnoses. However, their contract says they should write about 'ME/CFS', so that's what they do. Then, at the very end, they conclude that CFS is obsolete, to be replaced with SEID. Just CFS, not ME. The Jolly Bard (talk) 13:00, 27 June 2015 (UTC)

Unfortunately, on Wikipedia, we go with what the majority of sources state. If there are a minority of sources that say something else, then we present that, with appropriate notation that it is a minority view. We don't do conspiracy theories, not unless they're proven. I remember during the XMRV debacle, numerous patients turned on the very scientists trying to help them, and accused them of conspiracies and scheming against us, all because they said "we can't find proof of XMRV". Turned out, they weren't plotting against us, they were right. That was a big lesson for many of us, and one I took to heart and it's for those same reasons that everyone here is demanding strong evidence that ME and CFS are two different things before we do anything.

Just arguing a viewpoint without citing evidence is not sufficient. Cite specific quotes from specific medically-reliable sources, preferably with links, and you'll get the split you want. The ICC is a start, but on its own, it's not enough, because it's just one suggestion from one small group of people (i.e., also an argument from authority), and the ICC have never been validated as diagnostic criteria that I know of. The IOM Report is in much the same boat, though if it says what you say it does, then that would add support as well. Can you provide a link to the part you're talking about, where it separates SEID from ME, please, as all I saw were dozens of references to "ME/CFS (SEID)"—I never saw ME treated as a separate entity. Having said that, as mentioned earlier in this thread, when the ICD-11 comes out, that may be a much stronger support for the idea of splitting. It's not officially out yet, though, so we can't even begin to examine what it tells us at this point. – Robin Hood  ^(talk) 15:26, 27 June 2015 (UTC)

The ICD-10-CM hasn't been implemented yet, but it was published in 2011. As for Wikipedia: no, we don't blindly go with what the majority of sources state. We follow the mainstream of reliable, authoritive and high-quality sources. Sources that merely state 'these terms are used interchangeably', without having investigated this, are not reliable, and certainly not with regard to the question: are they in fact synonymous. The Jolly Bard (talk) 17:20, 27 June 2015 (UTC)

The IOM report does not separate ME from SEID. It doesn't need to, since ME was never connected to SEID. What it does, is connect CFS to SEID, to the extent that they advise to replace CFS with SEID. Note: CFS and SEID are not synomymous either, regardless of how many sources will now claim that they are used interchangeably. The Jolly Bard (talk) 17:27, 27 June 2015 (UTC)

Studies into the pathological relationship (or lack thereof) between ME and CFS have not been done AFAIK, and will likely never happen. This is only logical, because there is no such relationship by definition, and why would anyone study something that doesn't exist. There do exist a few studies that look into which patients, ME or otherwise, would satisfy CFS criteria, if they weren't excluded. Often, ME patients have not been excluded from CFS research, even while all CFS criteria say they should be, and the same goes for patients with e.g. Lyme, fibromyalgia, Hashimoto, Ehlers-Danlos, and a whole bunch of others. The Jolly Bard (talk) 17:41, 27 June 2015 (UTC)

The literature that ís available on the issue at hand, is literature that discusses definitions or criteria in depth. There is not much, but what there is all points into the same direction: ME does not resemble CFS.

• Hooper M (2010), “Magical Medicine: how to make a disease disappear”, University of Sunderland
• Hyde BM (2007, updated in 2011), “The Nightingale Myalgic Encephalomyelitis (M.E.) Definition”, The Nightingale Research Foundation, Ottawa, Canada
• Morris G, Maes M (2013), “Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome: from clinical-consensus to evidence-based case definitions”, Neuro Endocrinol Lett 34(3):185-99, PMID: 23685416

Of course it all begins with the WHO. This article links CFS to G93.3 in the ICD-10, where ME is. But that is incorrect, CFS is not classified in the ICD-10. The ICD-10-CM has CFS in R53 (unexplained fatigue and malaise). The Jolly Bard (talk) 18:19, 27 June 2015 (UTC)

Okay, I'm done with this debate now. You're not even making sense anymore. To say that the IOM didn't separate ME from SEID because it was never connected to SEID when they use "ME/CFS (SEID)" throughout the report is just ridiculous. By Wikipedia's rules, the split won't happen until there's solid evidence that it should. End of story. Produce that evidence or stop wasting everyone's time. – Robin Hood  ^(talk) 22:29, 27 June 2015 (UTC)

@The Jolly Bard: You are incorrect, the History of chronic fatigue syndrome article is correct when it states about ICD-10, "The alphabetic index contains other terms, such as chronic fatigue syndrome, to which WHO assigned the same code"(G93.3). here. Ward20 (talk) 09:40, 28 June 2015 (UTC)

Your childish attempt at bullying doesn't impress me. You don't comprehend. It's not a split. Nothing will be taken from this CFS article. The Jolly Bard (talk) 23:44, 27 June 2015 (UTC)

I comprehend fully. I have this disease myself and I follow various blogs and the medical research. I know what the level of evidence is for ME being a distinct illness from CFS, and it just isn't there yet. If you feel you have enough for an article on ME in its own right that doesn't duplicate what's here, and pulls from high-quality sources, then why don't you it in a sandbox and post a link to it for us all to read. Perhaps then, you'll convince people rather than relying on the bizarre they say it's ME but they mean it's not ME logic you did with the IOM report. – Robin Hood  ^(talk) 01:13, 28 June 2015 (UTC)

It seems then that you have a conflict of interest with this topic, and are promoting your POV. Taking into account your point of view, I gather that you claim to suffer from CFS, rather than ME. Your lack of personal experience with ME is then likely to cloud your judgement here. The Jolly Bard (talk) 00:05, 2 July 2015 (UTC)

What I claim is to suffer from some disease of unknown etiology with little or no solid diagnostic criteria. I choose to call it CFS, others choose to call it ME, ME/CFS, or SEID. I fit every diagnostic criteria for any of those names that I have ever read, including CCC, ICC, and the proposed new SEID criteria. Your attempt to manufacture a conflict of interest by enforcing your point of view upon me is inappropriate and unappreciated. We're supposed to be patients fighting for our cause, for a solid understanding of what this disease or these diseases are—not patients pulling the rug out from under one another in an attempt to foist our own beliefs on everyone around us. I would appreciate it if you didn't make this kind of unsupported assertion again. The fact that I don't subscribe to your beliefs has no bearing on my diagnosis. – Robin Hood  ^(talk) 01:50, 2 July 2015 (UTC)

Then you are at the wrong venue, because Wikipedia is not a place to fight for a cause. We're supposed - required - to be neutral (also, not all of us are CFS patients). Your belief that the terms are all equivalent is just that, a belief, based on your personal medical complaints and your personal interpretation of the criteria. In contrast, I base my call on the avialable literature. The Jolly Bard (talk) 02:15, 2 July 2015 (UTC)

Discussion moved to user's talk page as it violates WP:NPA and personal beliefs on either of our parts have no medical relevance. – Robin Hood  ^(talk) 02:55, 2 July 2015 (UTC)

Again I will point out that it's odd to say the articles can't be split without evidence, yet there aren't any MEDRS sources that I'm aware of that provide evidence that they are the same to support a merged article. This then falls back on convention, but not universally applied convention. In the UK, the most official document on the subject, the NICE guidelines, uses the moniker 'CFS/ME'. However, there is this big fat caveat right in the beginning: "The CMO working group called for a consensus to be reached on terminology and definition, and while awaiting this, suggested that the composite term 'CFS/ME' is used and that it is considered as one condition or a spectrum of disease for the purpose of the report. This is the approach also adopted in this guideline." Their use of this term has no scientific backing. In absence of a scientific consensus, they unilaterally decided to combine them and thus 'CFS/ME' was born. The previous Oxford criteria makes exactly one mention of ME, only pointing out again this lack of consensus about the diseases being the same: "The principal lack of agreement concerns definition of the clinical syndrome to be studied. A number of clinical syndromes have been described, all apparently referring to similar groups of patients, but differing sufficiently to preclude comparison of published studies. The various names used include epidemic neuromyasthenial, idiopathic chronic fatigue and myalgia syndrome2, benign myalgic encephalomyelitis3, chronic infectious mononucleosis4, Royal Free disease5, postviral fatigue syndrome6, fibrositis-fibromyalgia7,8, and chronic fatigue syndrome9."

If we use the CDC as the official US source of information on this disease, which I think is fair, it's quite interesting to note that the term ME does not appear in any of the three clinical CFS definitions produced by them, nor does their website on the disease make any mention of it. While the IOM report was paid for by the US government and uses the ME/CFS moniker, the IOM is not a government organization and they likely just cribbed the term from the NIH. I'm unclear on the history of the NIH use of the ME/CFS moniker, but I imagine it probably was influenced by the Canadian consensus document as well as US patient advocates using the term, for better or for worse. Again, no scientific backing or consensus was provided for the combined use of the terms as one disease. Anal0gue (talk) 02:18, 28 June 2015 (UTC)

We don't disagree on that. There's no solid evidence that ME/CFS is a single disease and there's no solid evidence that ME and CFS are two (or more) different diseases. We don't know this because we have no firm etiology for the disease and the various biomarker studies over the years have come up with different numbers of subgroups within the population they studied (not to mention that, to my knowledge, nobody's ever attempted to replicate those studies). Similarly, the various diagnostic criteria produce different patient groups...but we don't know if those patient groups are broader/narrower groups with the same underlying illness or if they're different groups with overlapping, highly similar underlying illnesses. So no, nobody can prove that it's a single disease and should therefore be one page, but at the same time, given the vast number of sources that treat them as one and the same, I don't see how we can argue that they're different with any credibility. Despite appearances, it's not me you're arguing against, it's the person who comes along and proposes Myalgic encephalomyelitis for deletion. We need to be able to point at high-quality studies and say "yes, these are distinct, we have good reason to believe it, and here's the evidence that at least a significant minority of the medical community believes this".

We also need to be able to distinguish them clearly to resolve any debates that come up in terms of what material belongs on which page. In that vein, we need to define what it is that distinguishes "chronic fatigue" from "chronic fatigue syndrome" from "myalgic encephalomyelitis" and any other patient subgroups. Given the preponderance of studies that treat at least ME and CFS as one and the same (and a small few that even lump generalized chronic fatigue in there as well, just to confuse things), and given that nothing I'm aware defines any widely agreed on distinction between ME and CFS, I really don't see how we would be able to do that. If we can, then great, let's go for it. That's why I and others in this discussion are demanding evidence. If we can't provide that evidence, then we'll be right back to one page after a lot of wasted effort, because it will be only too easy to argue that everything treats them the same (or can't agree on the differences) and therefore they belong on the same page.

And I apologize if I lost my cool earlier, but on a personal level, I find accusations of conspiracies and claims that come from activist forums but have little or no backing evidence to be completely detrimental to our cause. The psychological proponents already think we're head-cases...let's not give them ammunition, shall we? – Robin Hood  ^(talk) 03:05, 28 June 2015 (UTC)

I understand, and I agree the split needs to be supportable by approved evidence. I will continue to peruse the literature looking for this but as far as I've seen very few people other than Lenny Jason seem to give a shit about the distinction and the accuracy of the various clinical criteria. I have no accusations of conspiracies, I just can clearly see what impact it has by pushing everything to a CFS article. If this article is truly about ME/CFS, why are only CFS symptoms listed for example? Why not list ME symptoms here as well? Again, this is where I feel that people would start reverting edits made to add ME centric information which then makes it an article on CFS, not ME/CFS, and if the ME article can't be populated, then ME information just gets suppressed.

On a more productive note, I still don't think it's been addressed how the ICD-10-CM changes are going to be incorporated into this article. I'd love to hear what's proposed for that. What is the info box at the top going to say? Anal0gue (talk) 04:17, 28 June 2015 (UTC)

Wikipedia:MEDRS states how it should be done. A secondary source from a medical WP:RS will at some point describe how the ICD-10-CM changes the way doctors diagnose ME verses CFS. Then editors on Wikipedia form a consensus on how to incorporate the information (or not) from the secondary source into this article or any other article that is appropriate. It really is quite formulaic and will save a lot of talk page angst.

I suggested this before, but I will again. Find the WP:MEDRS secondary sources (and I know there are a few) that describe how different definitions describe different groups of patients. First put that information in the Clinical descriptions of chronic fatigue syndrome article. Once that is sorted out it will be much easier to determine what should go next in order of split, not split, rework this article, make new article, or whatever needs to be done. Believe me when I say that for a controversial article like this one, work together, compromise to form consensus, and stick to the guidelines that editors have deemed relevant over the years. If an editor tries to shortcut that to force their WP:POV onto an article it will not work here. If you don't believe me, read the talk page archives and see all the strife, endless arguing, and finally removal of editing privileges from the article that occurs when editors with any WP:POV try to force their truth into any article without consensus. Ward20 (talk) 09:24, 28 June 2015 (UTC)

@Anal0gue Your question regarding the info box was addressed back in March: https://en.wikipedia.org/wiki/Template_talk:Infobox_medical_condition#Confusion_of_ICD_with_ICD-CM It is inevitable that the same info box would appear on both 'split' articles if the split were to go ahead, because there is no separate ICD or ICD-CM(US) or any other iteration of any other national subsidiary to the ICD that could provide any other infobox data. This lack of separate info box is something else that millitates against separate ME and CFS articles. I strongly suggest that in addition to the wholly sensible direction suggested by Ward20 above, that any editor who wants to see separate WP articles for ME and CFS actually drafts these on their personal sandbox so that other editors can judge if such a move is even feasible, let alone within WP good practice. Personally I fail to see how applying MEDRS to separate ME and CFS articles would produce anything other than very close mirrors. Anyway, Analogue and Aspro the challenge is with you, if you want split articles -then set them up on your sandbox so the rest of us can judge whether there's any merit in carrying on with what looks like an increasingly sterile discussion. --In Vitro Infidelium (talk) 16:15, 28 June 2015 (UTC)

I'm having trouble extracting an answer to my question out of your link. Is the infobox supposed to be based on WHO ICD or US ICD clinical modification (CM), or both? Clearly, at present for the CFS article it seems to be based on both. That being the case, assuming this CFS article is truly a ME/CFS article, why isn't the ICD-9-CM code (323.9) for ME present? Why isn't the ICD-10-CM code (R53.82) for CFS present?

Can the CDC really not be used directly as a reliable source of information for an article? Clearly, based on their clinical modification of both ICD-9 and 10, the CDC has always maintained ME and CFS as separate diseases. They've made it even more clear now in the ICD-10-CM by making them explicitly exclusionary diagnoses. Anal0gue (talk) 18:54, 28 June 2015 (UTC)

You've been asked to provide a secondary source for these claims. I am not aware of a single other medical condition that is defined by the way it is classified in ICD. The arguments over ICD-10 on this talkpage alone have spanned kilobytes. Let's try again (and this goes for Anal0gue, The Jolly Bard and all others): provide a secondary source that states unequivocally that there are two separate conditions with different names. Even Carruthers et al argue that CFS is another name for ME. JFW | T@lk 20:31, 28 June 2015 (UTC)

I have provided two secondary (Hooper, Hyde) and one primary source (Maes) above. The CDC have, on more than one occasion, confirmed that they have always viewed ME and CFS as two different conditions. WHO representatives (particularly, dr. Jacob) have been quite clear on this as well. The Jolly Bard (talk) 20:37, 28 June 2015 (UTC)

@JFW If you're talking about the ICC then no, they don't argue that CFS is another name for ME. They state that that ME is also referred to as CFS in the literature. This doesn't mean they agree with this nor does it mean they reviewed evidence that they are the same thing.

I'd still like an answer about the ICD codes and the info box re: G93.3, 780.71, 323.9, and R53.82. Anal0gue (talk) 21:46, 28 June 2015 (UTC)

@Jolly; Hooper, Hyde[4][5] clearly do not meet WP:MEDRS standards. Maes[6] is actually a secondary source review article from a low impact medical journal. Please provide links to the CDC and Dr. Jacob assertions. Ward20 (talk) 22:23, 28 June 2015 (UTC)

@Analogue: The ICD-10 authority is not CDC it is the WHO. As far as I can tell the ICD-9 designation in the article should be ICD-9-CM which is established by The National Center for Health Statistics as a section of CDC. Yes there is conflicting information presented in the info box, that is just the way things are presently coded in the real world. It doesn't mean the article should be renamed because information on naming comes from a variety of sources, not only CDC codes. The ICD-9-CM codes should probably specify 780.71 and 323.9. IMO the ICD-10-CM code (R53.82) for CFS is not present because it will not be implemented until October 1st. Ward20 (talk) 22:23, 28 June 2015 (UTC)

Yes I'm aware that the WHO is in charge of the ICD-10, but the CDC is in charge of the ICD-9 and 10 CMs, and the ICD-9-CM code is listed in the infobox as ICD-9 which I believe is incorrect, CFS didn't even exist when the WHO ICD-9 came out. Again, is the info box supposed to contain WHO or US CM based codes? Anal0gue (talk) 22:40, 28 June 2015 (UTC)

I believe I agreed with you, "As far as I can tell the ICD-9 designation in the article should be ICD-9-CM" and "The ICD-9-CM codes should probably specify 780.71 and 323.9." As to your last question most disease articles I have seen have both current WHO and US CM based codes in the infobox. Ward20 (talk) 22:50, 28 June 2015 (UTC)

Yes, that's the ICD-9-CM.

The CFS infobox should read 'not classified' for the ICD-10. The ME infobox would currently read G93.3 (ICD-10) and 323.9 (ICD-9-CM), hence there is no overlap in codes. The ICD-10-CM, a publication of the NCHS, has ME in G93.3 and CFS as R53.82. Cheers, The Jolly Bard (talk) 22:54, 28 June 2015 (UTC)

That's not correct, CFS is in the WHO ICD-10, indexed to G93.3. This is where things are all screwed up. In the past someone convinced the WHO that ME and CFS are the same, yet the US CDC CMs have never reflected this aspect of the WHO ICD. Anal0gue (talk) 23:03, 28 June 2015 (UTC)

It's in the alphabetic list, but that doesn't classify it. The WHO does not consider ME and CFS the same at all (see below). The Jolly Bard (talk) 23:10, 28 June 2015 (UTC)

It's not in the tabular list, it's in the index along with Iceland disease etc., which all point to G93.3. Anal0gue (talk) 23:19, 28 June 2015 (UTC)

The alphabetic list is not a classification, nor a list of synonyms. It merely points the reader to a place to look. The Jolly Bard (talk) 23:32, 28 June 2015 (UTC)

@The Jolly Bard That's a good point. Do you have any official WHO statements regarding this aspect of the index? If you do then that means that the WHO does not officially consider CFS the same as ME, which would jive with the CDC ICD-CM. Anal0gue (talk) 01:19, 29 June 2015 (UTC)

@Anal0gue, Jolly, The Who alphabetical index "includes all terms classifiable to categories A00-T98 and Z00-Z99"[7] page 27. So yes, it does classify chronic fatigue syndrome to G93.3.Ward20 (talk) 02:59, 29 June 2015 (UTC)

No, it does not. Classifiable is not the same as classified. If it was classified, it would be in the table. The Jolly Bard (talk) 20:03, 29 June 2015 (UTC)

@Ward20 OK, so can we form a consensus and get the info box updated? For now it's accurate to say "ICD-9: 780.81, 323.9" and after October when the ICD-10-CM goes live, it should be updated to say "ICD-10: G93.3, R53.82", yes? Anal0gue (talk) 23:07, 28 June 2015 (UTC)

@Ward20, I don't see anything in WP:MEDRS that disqualifies Hooper and Hyde. The best-known CDC quote is this one which can be found in many places (unfortunately the CDC took down their ME page a couple of years ago): "Various terms are incorrectly used interchangeably with CFS. CFS has an internationally accepted case definition that is used in research and clinical settings. ... The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease;however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS." Dr. Robert Jacob's quote is also quite insightful: "ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME." The Jolly Bard (talk) 23:10, 28 June 2015 (UTC)

Outdent:Anal0gue, I believe that should be the correct coding, but "ICD-9" should say "ICD-9-CM" to differentiate it from the WHO's "ICD-9". I am posting on the template talk page shortly so these changes may be implemented. Ward20 (talk) 23:20, 28 June 2015 (UTC)

@Jolly,WP:MEDRS[8] This includes the sources for Hooper, Hyde and Dr. Robert Jacob:

"Other sources

Reliable sources must be strong enough to support the claim. A lightweight source may sometimes be acceptable for a lightweight claim, but never for an extraordinary claim.

Press releases, newsletters, advocacy and self-help publications, blogs and other websites, and other sources contain a wide range of biomedical information ranging from factual to fraudulent, with a high percentage being of low quality. Conference abstracts present incomplete and unpublished data and undergo varying levels of review; they are often unreviewed and their initial conclusions may have changed dramatically if and when the data are finally ready for publication.[26] Consequently, they are usually poor sources and should always be used with caution, never used to support surprising claims, and carefully identified in the text as preliminary work. Peer-reviewed medical information resources such as WebMD, UpToDate, and eMedicine are usually acceptable sources for uncontroversial information; however, as much as possible Wikipedia articles should cite the more established literature directly."

If the CDC has taken the page down then It is no longer WP:verifiable they still stand behind the wording, as strong as it was. Please find secondary sources that meet WP:MEDRS as was previously asked by several editors.Ward20 (talk) 23:46, 28 June 2015 (UTC)

That's a long citation, with many considerations. What exactly do you refer to? Take into account that Hooper and Hyde are established experts in the field, which increases the weight of their non-pubmed publications. These aren't lightweights. The Jolly Bard (talk) 00:06, 29 June 2015 (UTC)

By the way, finding sources is not a task pinned to me personally. This is a project of co-operation. You can make an effort, too. The Jolly Bard (talk) 00:15, 29 June 2015 (UTC)

The CDC quote was part of a course so it remains verifiable, just not easily online (it's in their archives and everyone who followed the course can verify it, too). The Jolly Bard (talk) 00:57, 29 June 2015 (UTC)

Dr. Robert Jacob (WHO)

Here is a fuller quote from a published complaint to the Lancet, DOI:10.1016/S0140-6736(11)60096-2.

"On 4th February 2009, Dr Robert Jakob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO Headquarters, confirmed: “CFS is a broad umbrella. This needs to be clarified. It is not possible to make a deduction from CFS. Volume I is the relevant volume for ME. ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD Index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. In its Guideline, NICE has used an ambiguous term. The WHO does not recognise the term ‘CFS/ME’ and refers to it as ‘unfortunate’ ”. "

Cheers, The Jolly Bard (talk) 00:51, 29 June 2015 (UTC)

Letters to the editor are not WP:MEDRS compliant either (not peer reviewed). Also, I don't believe the Lancet published this, a support group did. Ward20 (talk) 03:14, 29 June 2015 (UTC)

There are no peers to the WHO. But it doesn't need to be 'compliant'. It's a statement, and referenced on this talk page only in that capacity. The Jolly Bard (talk) 11:37, 29 June 2015 (UTC)

Research

The research section of the article is a bit anemic and awkward. The subsection on funding is fine, but could probably use some additional information regarding the research funding situation in the United States and/or other countries to provide some further perspective.

I'd like to delete the following as it doesn't add anything to the research section:

"The Oxford criteria (1991)[142] include CFS of unknown etiology and a subtype called post-infectious fatigue syndrome (PIFS). The presence of mental fatigue is necessary to fulfill the criteria and symptoms are accepted that may suggest a psychiatric disorder.[7]"

In its place, I think information regarding the ongoing large research efforts (Stanford, Columbia CII, OMF) should be added. Is anyone opposed to changes of this nature? Anal0gue (talk) 21:25, 29 June 2015 (UTC)

The problem with deleting the Oxford criteria is that is then eliminated from the article. The article should explain the Oxford criteria as it has a major role in a huge proportion of the studies. Ward20 (talk) 21:46, 29 June 2015 (UTC)

But it's a section on research, not research criteria. The same sentence above appears in the Clinical_descriptions_of_chronic_fatigue_syndrome article, where it belongs. If you talk about Oxford in this section then you need to talk about all other research criteria as well which doesn't make sense to do in this section of the article. Anal0gue (talk) 22:06, 29 June 2015 (UTC)

I agree that it's a section on research, not research criteria, and I objected when it was put there from the Notable definitions area. First post But consensus was to move it to research. I still believe it should be on the main page but not in research, unless all notable definitions are moved to Clinical_descriptions_of_chronic_fatigue_syndrome with a paragraph on the main page stating there are a number of definitions used, go to Clinical_descriptions_of_chronic_fatigue_syndrome for details. Ward20 (talk) 22:49, 29 June 2015 (UTC)

Sorry it just makes no sense in the context of the section it appears in. It says absolutely nothing about research and adds nothing to the section. It should either be moved back up to the definitions section, or deleted. I'm not sure it should even be considered notable at all still as the US NIH P2P process pointed out its problems and called for it to be retired. Again it's still prominently displayed in the clinical description article so it's not going anywhere. Anal0gue (talk) 23:42, 29 June 2015 (UTC)

Consensus can change. I agree that it doesn't belong in this section. Also, lately it's been called obsolete, and as such IMHO it needs no mention in the main article. The Jolly Bard (talk) 00:02, 30 June 2015 (UTC)

My opinion is to keep it somewhere on the main page because so many research papers use it, but to note that its use is being discouraged because it is inclusive of other conditions. Consensus groups and researchers should consider retiring the Oxford case definition because it differs from the other case definitions and is the least restrictive, probably including individuals with other overlapping conditions. I believe we should wait for other editors to give their opinions and ideas before making this change.Ward20 (talk) 00:55, 30 June 2015 (UTC)

It's unclear what reliable source has deemed the three (or four if the Oxford mention is moved back) listed definitions notable. Is there a secondary source somewhere that tallies how many papers use what criteria to determine which is notable or not? I think that the definition section should either a) remove the "notable" qualifier and include all well known criteria, or b) all should be removed from the main article as they are all listed in the Clinical_descriptions_of_chronic_fatigue_syndrome article. Anal0gue (talk) 01:18, 30 June 2015 (UTC)

I see reference 7 is provided for the "notable" part, but the abstract only mentions the CDC definition, not Oxford, CCC, or NICE guidelines. Anal0gue (talk) 01:35, 30 June 2015 (UTC)

Outdent: Yes reference 7 discusses the most used definitions right after the abstract. You may find the full text PDF by going to google scholar and searching for "The chronic fatigue syndrome--an update". There will be a PDF link on the right side of the page. I am not linking to it because I believe the material is behind a paywall and copyrighted. There are some abnormalities from the sourced material. The source includes the Australian definition too but that never got into the article by an oversight. Now days the the Australian definition is less used so I guess everyone said meh. The Nice guidelines are not mentioned in source 7, it has it's own primary source. The present version is not the same as when the article was edited with reference 7. Here is how the article was edited previously [9].

Thanks. I'm not sure that reference provides evidence for those being notable. It's just a list of some of the case definitions in use. It mentions that the CDC definition is the most widespread, but does not make similar claims about the Oxford, Canadian, or Australian criteria. If just being mentioned in a review makes them notable, I think we should update that section with the newest review, the IOM report. They analyzed Fukuda, NICE, CCC, and ICC. Those are probably the criteria that should appear as notable as of 2015. Anal0gue (talk) 19:42, 30 June 2015 (UTC)

Again, I think the Oxford bullet item should either be nuked or moved back up to a reworked definitions section. The sentence below it is good and can now be further expanded on using the IOM report as a source. There is some important discussion relating to this starting on the bottom of page 52 of the report and continuing to page 53. They note the problems with different studies operationalizing the criteria differently. More importantly, they note that a large percentage of healthy controls can meet the various criteria if not used in a certain way. This has serious implications for research. Anal0gue (talk) 19:57, 30 June 2015 (UTC)

Also I'd still like to hear if it would be appropriate for this section to note the large ongoing research efforts. Anal0gue (talk) 19:59, 30 June 2015 (UTC)

Yes to your last question, but it should be taken from a secondary source if at all possible, note that non medical info like this doesn't have to be WP:MEDRS but should be sourced from WP:RS (no blogs or support groups).

I agree the definitions should be reworked and agree with a lot of what has been said above, but would like to construct a table of definitions from the other reviews listed in section Review_articles_of_case_definitions along with the impact factor of the publication, and the number of cites by other articles. The IOM is a good review but it is very new and we should evaluate the quality and material of the other recent reviews also. I won't have enough time to work on this right now though. Ward20 (talk) 20:35, 30 June 2015 (UTC)

Re- Oxford, the current text is per edits https://en.wikipedia.org/enwiki/w/index.php?title=Chronic_fatigue_syndrome&diff=prev&oldid=652864584 et seq , I made back in March, which were discussed on the talk page. The reason for separating Oxford is that CDC, NICE and CCC all appear (approriately)under Diagnosis, while Oxford was only ever intended (and used ?) as a Research definition. My preference is that the current Research heading be changed to Research Funding and the first four lines of text be deleted. To date research has been nugatory and there appear few if any secondary sources that support the creation of a balanced text on the scope, range and outcome of what research there has been. Perhaps gleanings from P2P and IOM could be the basis of an updatable onging research section but balance of what is included and what is left out would be a paramount consideration.

Definitions -case and otherwise Caution needs to be taken over terminology. The WP article "Case Definition starts out with this A case definition defines a case by placing limits on time, person and place.[3] Time criteria may include all cases of a disease identified from, for example, January 1, 2008 to March 1, 2008. Person criteria may include age, gender, ethnicity, and clinical characteristics such as symptoms (e.g. cough and fever) and the results of clinical tests (e.g. pneumonia on chest X-ray)." In contrast there is a strict epidemiological usage [10] "A case definition is set of uniform criteria used to define a disease for public health surveillance. Case definitions enable public health to classify and count cases consistently across reporting jurisdictions, and should not be used by healthcare providers to determine how to meet an individual patient’s health needs." "Clinical definition" by further contrast is literal in meaning - a definition that has clinical validity - I would suggest that is what CDC, NICE and CCC all amount to given their respective applications. Other 'definitions' which lack established clinical use i.e use within a broad range of health care settings, not just one or two clinics, would need to be distinguished from CDC etc.--In Vitro Infidelium (talk) 15:26, 1 July 2015 (UTC)

All CFS criteria are case definitions. Fukudu especially is quite explicit about this. Cheers, The Jolly Bard (talk) 16:24, 1 July 2015 (UTC)

@The Jolly Bard which doesn't help if 'case definition' has more than one or otherwise nuanced meanings and we have no MEDRS to say which meaning is attached to which quoted source. It may be obvious to you but unless the source defines the given term explicitly then one is in danger of compound class errors when lumping all the unexplicit usages together. The CDC is clear about the use and limits of 'case definitions', while the NICE guidlines http://www.nice.org.uk/guidance/cg53/chapter/1-recommendations#/diagnosis make no reference to the term case definition which is not surprising given that the term rarely appears in UK clinical practice. For the purposes of this article the term case definition either requires adressing within the text or we avoid it - which to me makes the most sense. Diagnosis and Research are terms useful to the general reader, and that IMO is what we should use rather than introduce unnecessary ambiguity. --In Vitro Infidelium (talk) 17:12, 1 July 2015 (UTC)

You're right about Oxford being a research definition, so I understand why it was moved to the research section, there's just no context given around it being there. I think the sentence about different case definitions should actually remain and should be further expanded, again based on discussion in the IOM report (page 51) about heterogeneous groups created with different definitions which complicates research and the ability to compare findings across different studies.

I disagree that the section should be changed to being solely about research funding. Clearly there are several open areas of research that are of critical importance to the disease and should be noted. As Ward20 noted above, information about this does not strictly need to be MEDRS based. Anal0gue (talk) 19:19, 1 July 2015 (UTC)

The second sentence looks to me to be WP:SYNTH, in that I'm not sure all sources are actually saying the same thing, or least are not supporting the thing that is proposed in one of the sources - however maybe WP:NOTSYNTH applies. My inclination is still to go to a Funding section only, at least until such time a someone can put a functional Research section together. Some thought needs to be given to the structure of that section - if a 'current/recent research' heading is used - should there also be a concluded research heading ? And the question of balance has to be addressed. Yes we don't need MEDRS - but we still need RS, for example there is this: http://www.newscientist.com/article/mg22730283.000-chronic-fatigue-breakthrough-offers-hope-for-millions.html but there is also this - http://www.ukctg.nihr.ac.uk/search?query=keyword:Chronic+Fatigue+Syndrome&resultsfrom=1&resultsto=20000&pagesize=20000 does this count as a primary or secondary source ? (for the latter see drop down menu, right hand side below map, to bring up completed studies) ? And in a Research section is the intention just to list projects, or is there to be discussion for each one, how then to acheive a balance of attention given to each study and how to meet requirements of WP:NOT A Newspaper and WP:Not a List ? I suggested this [[11]]some yeas ago, but it was rejected then as it relied on primary (although MEDRS) sources. Someone really does need to take a lead if an expanded Research section is to happen - setting up a sandbox based model would be a start - it's not something I can commit to at this time and want to at least work through the P2P and IOM material before thinking about adding material. As I've stated previously my view is that the article as it is, warrants slimming in terms making it useful to the general reader. --In Vitro Infidelium (talk) 16:37, 2 July 2015 (UTC)

SEID vs. ME/CFS

Moved from my talk page

While the IOM also says something about renaming, from the second sentence (as quoted) it becomes clear that not all patients are included under SEID. Cheers, The Jolly Bard (talk) 20:16, 5 July 2015 (UTC)

Further reading

Assuming there are no objections, I'd like to add the following titles to the further reading section in order to balance it out a bit:

• Post-viral Fatigue Syndrome (Myalgic Encephalomyelitis). John Wiley & Sons. 1992. ISBN 978-0471938798. {{cite book}}: Unknown parameter |editors= ignored (|editor= suggested) (help)
• The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Nightingale Research Foundation. 1992. ISBN 978-0969566205. {{cite book}}: Unknown parameter |editors= ignored (|editor= suggested) (help)
• Ramsay, A. Melvin (1988). Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease. Gower Medical Publishing. ISBN 978-0906923993.

Anal0gue (talk) 06:55, 29 June 2015 (UTC)

I strongly object to the addition of ME reading material to an article on CFS. The Jolly Bard (talk) 14:41, 29 June 2015 (UTC)

I agree with you and I would object to any ME material being on the CFS article at all if it were possible to have a separate ME article, but as you can see this isn't going to be easy to accomplish any time soon. I do feel like I'd be further adding to the confusion and messed up situation by adding these, but at the same time I don't want to see ME information suppressed by this ridiculous situation. Anal0gue (talk) 19:21, 29 June 2015 (UTC)

The Jolly Bard given that we're faced with a combined ME/CFS article for the time being, can we agree that these are appropriate to add for now? I'll gladly remove them upon an article split. Anal0gue (talk) 07:13, 9 July 2015 (UTC)

These are high-quality sources, but I would prefer not to complicate the CFS page further. I'd rather start writing a draft ME page now, so it can be published in October. Cheers, The Jolly Bard (talk) 13:53, 9 July 2015 (UTC)

IRC support channel

We have created ##cfs on irc.freenode.net, meant as a live chat support channel to exchange latest information about CFS/ME. Could I post this information somewhere in the main page? Bananabas (talk) 12:57, 20 July 2015 (UTC)

Wikipedia doesn't allow social networking links at all. See point 10 of ELNO. – Robin Hood  ^(talk) 18:54, 20 July 2015 (UTC)

Info box

First, I wanted to break out the discussion about ICD codes and upcoming ICD-10-CM changes from above as they got buried a bit and this needs ongoing discussion.

Also, the info box was just edited to note that CFS is classified under the rheumatology specialty. I'd like to know what evidence there is to support this change. Anal0gue (talk) 23:28, 3 July 2015 (UTC)

It's not all that odd, but it may be better to leave the field open. The real problem in the infobox is the link to G93.3 in the ICD-10. That should really say unclassified, but I'd accept R53 in view of the classification of CFS as R53.82 in the ICD-10-CM. The Jolly Bard (talk) 23:49, 3 July 2015 (UTC)

Yes I've seen the association before but I wasn't aware there was any medical consensus about this. It's interesting to note that the most well known US specialists that see ME and CFS patients are either infectious disease (the majority), internal medicine, or immunologists, though there's nothing official about this.

I still don't know what to say about the ICD codes in light of the fact that there is no support for splitting off an ME article. That in effect makes this an ME and CFS article, and that being the case, the info box should contain G93.3, R53.82, 780.71, and 323.9, as absurd as that is. Anal0gue (talk) 00:37, 4 July 2015 (UTC)

Is it my imagination or are the descriptions for G93.3 and R53.82 identical to one another, apart from their name and the fact that they exclude one another. Have I missed something? – Robin Hood  ^(talk) 01:06, 4 July 2015 (UTC)

I believe that page that is an unofficial interpretation of icd-9-cm. The official files are on this page and I haven't seen descriptions for the illness attached to the classification numerals in those files. Ward20 (talk) 01:56, 4 July 2015 (UTC)

Ah, that would make sense. Thanks, Ward20! – Robin Hood  ^(talk) 06:40, 4 July 2015 (UTC)

Which then begs the question of why this Wikipedia template links to an unofficial ad supported site for ICD information. But I will leave that for someone else to investigate. Ward20 (talk) 18:00, 4 July 2015 (UTC)

Probably because the WHO doesn't appear to maintain ICD-9 data online as they do with the ICD-10 data (can't blame them for this, their version of ICD-9 is ancient) and the CDC doesn't provide any interactive lookup data online for ICD-9/10-CM, just downloadable files. Anal0gue (talk) 20:38, 4 July 2015 (UTC)

In my understanding, Infobox changes now complete as far as what was discussed. Ward20 (talk) 22:29, 4 July 2015 (UTC)

For now, yes, if you feel it's premature to add R53.82. I don't see any reason why it can't be added now. October 1 is the official DHHS compliance date to transition to the new code sets, but the codes as released will not change before now and October 1. In fact, the 2016 release of ICD-10-CM is available and notes no changes to the 2015 version. Anal0gue (talk) 23:25, 4 July 2015 (UTC)

Though adding it now brings up the weirdness again of the box as it stands. If you add R53.82, the template will create a link to the WHO ICD-10 which doesn't contain this code. The template would need to note and link to ICD-10 and ICD-10-CM codes separately. I'll leave a comment over on the template talk page about this. Anal0gue (talk) 00:55, 5 July 2015 (UTC)

It's my understanding that when implemented on Oct 1 of this year ICD-9-CM will have to be changed in the infobox to ICD-10-CM and its new codes.Ward20 (talk) 01:20, 5 July 2015 (UTC)

Given the newest literature in ME/CFS and the Rheumatology article:

• "Rheumatologists deal mainly with clinical problems involving joints, soft tissues, autoimmune diseases, vasculitis, and heritable connective tissue disorders.
• Many of these diseases are now known to be disorders of the immune system, and rheumatology is increasingly the study of immunology."

It is probably appropriate. Ward20 (talk) 22:36, 4 July 2015 (UTC)

Eh. I'll continue to disagree in absence of a reliable source showing this. Anal0gue (talk) 23:25, 4 July 2015 (UTC)

Anal0gue, I'm curious what specialty or specialties you think would typically diagnose or manage this. Here's a list of options. (I cut anything about surgery, children, specific body parts (like eyes), etc., that was obviously irrelevant.)

• Allergology
• Cardiology
• Endocrinology
• Gastroenterology
• General hematology
• Immunology
• Infectious diseases
• Internal medicine
• Neuro-psychiatry
• Neurology
• Occupational medicine
• Physical medicine and rehabilitation
• Psychiatry
• Public health and Preventive Medicine
• Radiology
• Respiratory medicine
• Rheumatology

I'm thinking that several specialties might be appropriate. What others would you explore? Guideline.gov says neurology and psychiatry[12] (plus all the primary care practitioners [family, internal, ob/gyn] and physical therapists for treatment), but the focus on neurology has been disputed (e.g., by immunologists). WhatamIdoing (talk) 19:16, 11 July 2015 (UTC)

Are you asking me my opinion or what I think has enough evidence to be placed in the article? I'm not aware of adequate evidence to classify it under any specific specialty for the purposes of this article. I was hoping someone could provide it and prove me wrong. As far as I know no specialty has claimed the disease as of right now. The WHO classifies the disease under the G section of their ICD, which would imply that neurology would be a likely candidate, but others have noted in other discussions here that ICD classification or information is not an adequate source for a WP medical article. It's a difficult question because the disease has distinctive symptoms that land in several of the specialties that you listed above. Without a scientifically proven etiology, we are just guessing here. Some MEDRS sources showing that the disease has been claimed by rheumatology would be nice to confirm that the infobox is accurate. As I mentioned, in the US, the top well known specialists are either infectious disease, internal medicine, or immunology doctors. Anal0gue (talk) 21:53, 11 July 2015 (UTC)

Lots of organizations classify it as such [13] and that is the speciality I would refer someone too if they presented with similar symptoms (if I was to refer them). Doc James (talk · contribs · email) 17:04, 8 August 2015 (UTC)

Rituximab

While the latest addition could still use a better source, does anyone have any issues besides that with listing it under research? I consider it to be on par with the XMRV study in terms of how much it's made news in the ME/CFS community. In a quick Google, the only secondary source I found was New Scientist, but that's not a peer-reviewed publication. The original study is here and the replication by the same people is here if anyone's interested. – Robin Hood  ^(talk) 14:41, 5 August 2015 (UTC)

Have moved this text here

A clinical trial of B-cell depletion has shown moderate to marked improvements in 10 of 15 patients treated with Rituximab and 2 of 15 patients receiving placebos. However the trial failed to meet its primary endpoint and the improvement occurred in a post-hoc analysis. Research on B-cell depletion continues in the United Kingdom and Norway.

A post hock analysis of 30 people for a common condition is the definition of a bad source. The summary is that B-cell depletion is being studied. This deserves no more than one sentence. Doc James (talk · contribs · email) 05:54, 8 August 2015 (UTC)

I'm not sure if you can really consider the original study to be post hoc, per se. Yes, the effect came after the defined study period, but they were still measuring the same thing, not looking for whole new patterns or results. In any event, the follow-up study was not a post hoc analysis in any way, since the observations mentioned were within the trial period, and it came up with comparable results. Nevertheless, despite those arguments, the fact that it's the same people in both cases, combined with the lack of decent secondary sources, would support your assertion that we should keep the paragraph relatively short. I do think the follow-up should be mentioned, though. – Robin Hood  ^(talk) 07:06, 8 August 2015 (UTC)

The reference in question says "This, however, was a post hoc analysis as the trial failed..." [14]

One only gets one primary endpoint if one wishes to use a p value of 0.05. If one uses more than one primary endpoint than a different p needs to be used. This is to prevent people from doing a trial with 20 primary endpoints and thus getting one by chance with a p of 0.05. Doc James (talk · contribs · email) 08:49, 8 August 2015 (UTC)

Okay, fair enough. Does the second study pose a similar concern? – Robin Hood  ^(talk) 16:37, 8 August 2015 (UTC)

It is not a randomized controlled trial [15]. Why they did not do one I do not know? Not sure what this trial shows.

Possibly injects of placebo would result in similar outcomes. We simply do not know. Doc James (talk · contribs · email) 16:59, 8 August 2015 (UTC)

The 2011 study expected responses within 12 weeks but the mean response time was higher than anticipated. For this reason the primary outcome was negative, even if later responses were impressive. The 2015 study (which did not have a placebo control group) was done to better understand the response pattern and determine the best dosing schedule in preparation for a large phase 3 trial, which started last year. There is more information about all this here [16]. Maybe we should mention the phase 3 trial. 93.34.9.232 (talk) 18:02, 8 August 2015 (UTC)

Thanks good to see a better trial being done. The evidence is all very tentative right now. Doc James (talk · contribs · email) 07:16, 9 August 2015 (UTC)

We don't normally comment on ongoing phase III trials. This should be no different. JFW | T@lk 21:16, 9 August 2015 (UTC)

While I think in some ways it's ludicrous, since pretty much everyone with ME/CFS has their eyes on the Rituximab trials right now, WP:MEDSECTIONS gives firm guidelines on this. There are no significant sources that I found that talk about the Rituximab trials (presumably they're hesitatant after the XMRV debacle), therefore, they shouldn't go on the page. Accordingly, I've removed that sentence. – Robin Hood  ^(talk) 02:33, 10 August 2015 (UTC)

Agree, wait for better sources. Ward20 (talk) 09:05, 10 August 2015 (UTC)

Research funding

Interesting report in Science News about patient advocates and researchers calling for greater research funding in The US.[17] Probably not enough WP:weight to add to article, but something to keep a eye out for more articles or increased funding that may tip the balance to add into the article. Ward20 (talk) 10:32, 18 August 2015 (UTC)

The CDC have reduced their already minimal CFS budget to zero come 2016. Since the new diagnosis SEID is not infectious, it is unlikely that they will create a budget for that instead. Rothly (talk) 17:44, 18 August 2015 (UTC)

Vandalism?

I recently made a change to a section in the article, and a person who goes by "sciencewatcher" has threatened me with blocking my entries due to "vandalism." Vandalizing a Wikipedia article is the furthest thing in my mind. For the education of sciencewatcher, a differing opinion is not "vandalism." For the record, I object to the word "Hispanic" being used in relation to race. Technically, that word should only indicate an ethnicity which originates in the Iberian peninsula. If you are discussing medical issues which may differ between Caucasians and Blacks, there is no room for implying that everyone who has a Spanish surname is somehow neither black nor white. If we have a biracial person who is half black and half English, how come he or she is not "Englishic?" Really, if the incidence of an illness differs between black and white persons, and also has a different value if the person in question is of mixed race, that is what we should say, and leave European countries of origin out of it. Thank you — Preceding unsigned comment added by 65.81.79.71 (talk) 17:02, 27 August 2015 (UTC)

The "vandalism" comment was because you kept making the same change multiple times from different ip addresses. Different people posted on your talk pages, and put the reasons for reverting in the edit logs. You never replied to *any* of those comments, and simply reverted again and again, putting info into the article that didn't match the source. Please don't do that! It's good that you are now discussing here.

As for the change itself, the reference says "Hispanic" so that's what we use in the article, even though it is a problematic term for the reasons you give. However "mixed race" isn't necessarily better, as that would generally imply European/African. — Preceding unsigned comment added by Sciencewatcher (talk • contribs) 18:30, 27 August 2015

(edit conflict) By my count, there were four different people who reverted that same edit, not just Sciencewatcher. We're citing what the CDC stated, so we have no option but to use similar wording to what they used. Since they use the term Hispanics, so must we. Certainly "mixed race" doesn't help clarify it, it only muddies the waters further, since one could be Asian and Native American, for instance, which would have no relation to "Hispanics" in any sense whatsoever. At least by using the term "Hispanics", readers can in some sense infer what is meant, and if they need clarification, they can go to the CDC's website (although I don't see any help there). At best, we can link to the Hispanic article, which explores what the term means more fully, or you can find another source that discusses the epidemiology with better racial accuracy. – Robin Hood  ^(talk) 18:36, 27 August 2015 (UTC)

Perhaps I can clarify the different IP addresses by explaining that I had done the edits from different computers (home, office, etc.). I apologize for any confusion from that standpoint. The word "Hispanic," though, does not "clarify" the race matter any more than "mixed-race." Many so-called Hispanics are purely of Indian descent, such as Aztec, or Inca, or other Native American groups. Those people have nothing to do with Europeans or Africans. Other so-called Hispanics are mixed race, composed of varying degrees of African, European, or Native American, or even, in some cases, Oriental heritage. So saying Hispanic only means that they have a Spanish surname. It says nothing about race. Unfortunately, in recent decades that word has been turned into a political label, and seems to mean "Spanish surname-mixed race." A very unfortunate turn of events. However, I fully understand that the Wikipedia article was quoting a scientific article which used the word Hispanic, and so the term has to be carried on. I'll desist from further edits on that score. Thank you — Preceding unsigned comment added by 65.81.79.71 (talk) 17:49, 28 August 2015 (UTC)

Not a Newspaper

The Jolly Bard made a deletion which was then reverted by Sciencewatcher https://en.wikipedia.org/enwiki/w/index.php?title=Chronic_fatigue_syndrome&type=revision&diff=669226253&oldid=669225267 and https://en.wikipedia.org/enwiki/w/index.php?title=Chronic_fatigue_syndrome&diff=next&oldid=669227719 I think the deletion of this text = Some members of the patient community, who had viewed the XMRV findings as a source of hope for a possible cure, initially reacted negatively when they were called into question. One UK researcher reported verbal abuse after publishing an early paper indicating that the XMRV studies were flawed has merit. If XMRV had proved to have a connection to CFS, if the Nature magazine article had not been retracted, if there had been criminal proceedings which had linked a CFS patient or advocate with harrassment - then perhaps there would be reason to keep this in an article about a disease, as it is I don't see how this in anything other than 'old news' which was laways of tenuous relevance.

In a similar vein I find this in the controversy section to be unfit for purpose - A major divide exists over whether funding for research and treatment should focus on physiological, or psychological/psychosocial aspects of CFS. This division is especially great in Great Britain.ref name="pmid17535450" In 2011, it was reported by the BBC that this conflict had involved personal vilification and allegations of professional misconduct to professional societies and universities of researchers who were investigating possible psychiatric connections.ref name=BBCToday My view is that the controversies section should be deleted and any RS supported points about controversy moved to the diagnosis and funding sections. Any retained text should be structured to ensure that no implication of the involvement of identifiable CFS patients or advocates having acted illegally or inappropriately is made. --In Vitro Infidelium (talk) 16:42, 1 July 2015 (UTC)

I agree, and any points about controversy can be placed in appropriate sections where the various points can be presented in a balanced manner. There's already an entire article devoted to the controversies. I think the inclusion of the verbal abuse story is against NPOV. It gives undue weight to a single isolated incident and should be deleted. Anal0gue (talk) 21:34, 1 July 2015 (UTC)

I think the discussion of the nutters extremists should remain, as it is a very important issue in CFS research and very notable. It might be worth moving that reference from the XMRV section to the controvery section though. See also the discussion on the Simon Wessely talk page. --sciencewatcher (talk) 22:32, 1 July 2015 (UTC)

Again, a single isolated incident involving a handful out of the millions and millions of patients with the disease worldwide is not notable nor is it an important issue in CFS research. That's an extremely bold claim to make with no evidence, and calling them nutters extremists is also not a very neutral stance and seems inappropriate, even on a talk page. Anal0gue (talk) 23:09, 1 July 2015 (UTC)

The point is (and the *reason* I support keeping them) is because there have been many instances of this, and it affects many CFS researchers, forcing some to give up on CFS research (to the detriment of patients). They clearly are nutters, as no normal person would be pulling this kind of crap, and that's supported by all the references ("extremists", etc.). --sciencewatcher (talk) 23:38, 1 July 2015 (UTC)

If there were many instances, there should be a better source. In reality, however, the same incident, not supported by any evidence of wrongdoing, keeps being reiterated for decades already. The Jolly Bard (talk) 23:50, 1 July 2015 (UTC)

Well more reliable sources that you can provide documenting instances of this will be good support for keeping it. Otherwise, again, I don't think one report from one isolated incident is enough to justify keeping it in the article, especially given the bias it produces. Anal0gue (talk) 23:51, 1 July 2015 (UTC)

I'm not sure why you are both just talking about "one report" and "one incident". Have a look at the Observer article, and the Hawkes article in the BMJ (see refs in the Wessely article). That's 3 news reports, and numerous threats against multiple researchers. I'm not sure if you're deliberately trolling or just very misinformed... --sciencewatcher (talk) 00:24, 2 July 2015 (UTC)

It's just not relevant information in a medical article. If it's going to be mentioned at all, it belongs in the controversies or history article. There is a similar occurrence of this in AIDS history, and further some AIDS activists were actually found guilty of making threatening phone calls to media and health officials. There is zero mention of this in the WP main AIDS article. It's not relevant to the main topic at all and only serves to fuel further controversy. Anal0gue (talk) 00:40, 2 July 2015 (UTC)

Also, these articles are not reliable. Of all the accusations over the years, only one incident has ever surfaced: a letter that mr. Wessely interpreted in a manner that wasn't intended. That is simply not notable. Meanwhile, I have witnessed patients being threatened by physicians that believed Wikipedia. Such is the impact of your preference. --The Jolly Bard (talk) 00:50, 2 July 2015 (UTC)

Yes, it should be in the history or controversies article. Right now it is mentioned in the summary of the history article, but not in the history article itself. It should be the other way round, with perhaps a short mention in the summary section of the main article. Jolly Bard: you are engaging in WP:OR by saying "only one incident has ever surfaced", and the articles are most definitely reliable (please read WP:RS). We don't need to verify every shred of information in a newspaper article -- we just assume they aren't making random shit up, as long as it's a reputable source. --sciencewatcher (talk) 01:24, 2 July 2015 (UTC)

No, we do not assume that. We check, per WP:CONTEXTMATTERS. If a source, any source, makes outrageous claims without backing them up, we reject that source. The Jolly Bard (talk) 01:45, 2 July 2015 (UTC)

• @sciencewatcher (talk) Would you please amend your contributions on this talk page to remove any material that could be seen to imply bigotry toward people who suffer from mental ill health. Your wording may have been unintended as harmful but it does imply a link between criminal behaviour and a class of people who are widely and derogatorally referred by that particualar 'n' word, something which which can hardly fit with WP policies. --In Vitro Infidelium (talk) 13:59, 2 July 2015 (UTC)

I don't find Sciencewatcher's arguments persuasive. Particularly the tests I indicated that neede to be met, have not been addressed, to make them clear

1. XMRV - only a current connection would warrant a controversy associated with XMRV being included in the article; following retraction of the Nature article, XMRV now has only an historical connection to ME/CFS, therefore the test to retain the material is not met.
2. Legal proceedings - allegations made in the media must in time be either verified, or in WP terms dismissed as lacking RS status. The sources used are now four years old, and despite the allegations being of a criminal nature no legal proceedings, criminal or civil have been reported. The lack of any such report renders the test to retain as not met.
3. Guilt by Association - references to "members of a patient community" etc could be considered to imply a collective resposibility, therefore verifiability of the statements becomes especially pertinent. No evidence of what such a community might be (is there a heart disease community, a lung cancer community ?) is available, and no source has come to light in four years, that certainly identifies the perpetrators of criminal acts as being either patients, carers or advocates with/of/for ME/CFS. Even were the allegations of harrassment to be correct there is no RS linking perpetrators to an ME/CFS community; this is significant since there are plenty anti research, anti academic and anti psychiatric perspectives in wider society. Without a sound RS to provide verifiability - the test to retain is not met. --In Vitro Infidelium (talk) 14:46, 2 July 2015 (UTC)

You seem to be inventing policies that don't exist. There is no policy that says we have to delete allegations if it hasn't gone to court, and no policy about "Guilt by Association". If you don't believe that the BBC, BMJ, Observer and Guardian are reliable sources for this info, we can put it on the reliable sources noticeboard. --sciencewatcher (talk) 16:01, 2 July 2015 (UTC)

I didn't say anything about policy, I have proposed three tests which need to be applied if WP:NotaNewspaper is not to come into play because all the current text would amount to is unverified news. It's irrelevant that the the BBC, BMJ, Observer and Guardian are RS if the in the normal course of events what has been reported has never been substantiated. All those publications might report that a flu epidemic is about to strike - however leaving that as a bald statement years after the epidemic failed to materialise would be absurd for an encyclopedia. Perhaps you could address the tests as I've set them out. --In Vitro Infidelium (talk) 16:56, 2 July 2015 (UTC)

I agree with sciencewatcher, if high quality news sources discusses a topic in depth, it is relevant for inclusion in this article. The material does not appear WP:UNDUE in tone or amount discussed, so I would oppose any removal. Yobol (talk) 17:54, 2 July 2015 (UTC)

Personally, I don't oppose mentioning either XMRV or the threats to researchers on some article, but I'm not sure they have a place on this one. XMRV has been disproven as a cause and is therefore not noteworthy except in a historical context. On this article, I think we should really be focussing on the current state of knowledge about the condition itself, not the controversy surrounding it. Simon Wessely's article should note the threats, the History article should mention XMRV, and the Controversies article is probably a good place for both. The Controversies article can also mention others who have faced abuse, like Myra McClure. The Controversy section, however, should only provide a very brief summary. To my mind, it should stop just after the "A major divide Controversies still exist" sentence. The fact that there is a divide is something you're going to come across in almost any examination of ME/CFS; the fact that that divide is more prominent in Great Britain or that there were threats made in a few instances is not, and is therefore not really relevant to a short summary. – Robin Hood  ^(talk) 19:54, 2 July 2015 (UTC)

I'll again agree that the controversy/history articles are a more appropriate place for items like this. The main article should read like a medical article, not a tabloid. Anal0gue (talk) 20:34, 2 July 2015 (UTC)

@Yobol WP:BALASPS would seem to apply: An article should not give undue weight to any aspects of the subject but should strive to treat each aspect with a weight appropriate to the weight of that aspect in the body of reliable sources on the subject. For example, discussion of isolated events, criticisms, or news reports about a subject may be verifiable and impartial, but still disproportionate to their overall significance to the article topic. This is a concern especially in relation to recent events that may be in the news.

The issue becomes more significant when 'recent' has become 'out of date'. How long in an article about an illness does a news report relating to unsubstantiated claims of criminal activity levelled at unnamed persons continue to have relevance ? Further one might expect that WP:BALANCE would require comment from the 'community' whose members are accused of perpertrating the criminal acts. Imagine if 'patient community' were replaced by 'LGBT community' or 'Afro-caribbean community'. --In Vitro Infidelium (talk) 12:10, 4 July 2015 (UTC)

Presumably Charles Shepherd's comment would be considered "from the community". I don't think we have his comment in the article, so it might be worth adding it. Also, the criminal element is just the small, extreme end of the spectrum of criticism/"fury" from the CFS community who dislike certain aspects of CFS research. This isn't really in dispute (go on any patient forum and you'll instantly see it). The threats are widely reported against multiple researchers, and there has been discussion of threats to Wessely since at least 2002 (I can't find any reliable sources, but there is discussion in newsgroups). --sciencewatcher (talk) 04:44, 5 July 2015 (UTC)

My own experience at ME/CFS forums certainly backs up what Sciencewatcher says—anyone not spouting forth the current orthodoxy on ME/CFS is often attacked and vilified. It would be ideal if we can find something that's not self-reported, though. If we can't, it should be framed appropriately (i.e. "there are reports from Wessely and McClure..."). As I said earlier, though, I still don't really see this as relevant to the medical article, only the controversy one. – Robin Hood  ^(talk) 05:28, 5 July 2015 (UTC)

It should not be framed at all. Firstly, there is a complete lack of objective evidence, and secondly, any mention gives it undue weight. Similiar accusations are not referenced in other medical articles, and it unjustly puts the CFS community - whatever that is - in a bad light, which violates various policies. CFS patients get threatened far more often themselves. The Jolly Bard (talk) 13:00, 5 July 2015 (UTC)

First, the newspaper/BMJ reports are all the "evidence" we need for wikipedia. Second, "CFS patients get threatened far more often themselves" is WP:OR. Third, I would take your comments with a pinch of salt, given your behaviour on the Netherlands wikipedia and the fact that you have been permanently banned from here. --sciencewatcher (talk) 15:15, 5 July 2015 (UTC)

Would you stop the personal attacks please? I am (obviously) not banned here, and the mistakes some people made elsewhere don't have to be repeated here. The Jolly Bard (talk) 15:29, 5 July 2015 (UTC)

It's not a personal attack. You are the same user as (User:Roadcreature), and (redacted) has been permanently banned here. How exactly is stating facts a personal attack? --sciencewatcher (talk) 15:36, 5 July 2015 (UTC)

That's a serious privacy violation by you, to which I can't and won't comment. This is the CFS talk page. The Jolly Bard (talk) 15:44, 5 July 2015 (UTC)

I'll leave it for people to decide for themselves. --sciencewatcher (talk) 16:04, 5 July 2015 (UTC)

I think the reaction to the XMRV issue is an important part of the discussion. I do not think a single sentence in this article is at all WP:UNDUE, and while I understand where you are coming from, I think from a historical perspective, the reaction to the XMRV issue is an important part of the story, and why I support keeping this single sentence here (in the history section). Yobol (talk) 19:15, 5 July 2015 (UTC)

However, the XMRV story is not an important part of this topic. Also, there are concerns regarding the reliability of the source. The Jolly Bard (talk) 19:26, 5 July 2015 (UTC)

Disagree on both counts. XMRV is historically important (it no longer is, but that's why it's in the history section). There was a lot of controversy surrounding it, so a single sentence is not undue. I see no issue with the reliability of the source. Yobol (talk) 19:31, 5 July 2015 (UTC)

There is quite a bit more than a single sentence on XMRV. With regard to defaming patients, it is insufficient that you don't see the issue. Other editors do. There should be an overwhelming consensus to keep something like that in the article. The Jolly Bard (talk) 19:44, 5 July 2015 (UTC)

You don't get to make up rules here on Wikipedia to suit your editorial wishes. Yobol (talk) 19:45, 5 July 2015 (UTC)

Wikipedia already has policies in place for every occasion, e.g. WP:BLP. The Jolly Bard (talk) 19:59, 5 July 2015 (UTC)

The refs say that the attacks have been going on for "years", and also mention the PACE trial, so saying this is just about XMRV is a bit of a red herring. I agree with Rob that it would make more sense to expand this and put it into the controversies article. --sciencewatcher (talk) 22:09, 5 July 2015 (UTC)

No matter how many times you repeat this, your references don't supply any evidence. Over all the years, I only know of one documented case where a patient threatened a ME or CFS expert. And that's simply insignificant. The Jolly Bard (talk) 22:21, 5 July 2015 (UTC)

Please stop with your tendentious editing. You have been around wikipedia long enough to know that we don't need to verify facts that appear in reliable sources. If the reliable source says it's true, then that's good enough for wikipedia. --sciencewatcher (talk) 22:55, 5 July 2015 (UTC)

Once again I refer you to WP:CONTEXTMATTERS and WP:BLP. Also, your continued incivility will not remain unnoticed. The Jolly Bard (talk) 23:22, 5 July 2015 (UTC)

This page is not a biography, and the sources do not break the CONTEXTMATTERS policy. It's not uncivil to point out that you're breaking wikipedia policies, and that you're a known banned sockpuppet. Like Ward20 I'd prefer to give you a second chance and not get you permanently banned again, as you could make some useful contributions to this page. However if you continue with your tendentious editing and breaking of policies I will initiate a CHECKUSER. --sciencewatcher (talk) 00:29, 6 July 2015 (UTC)

(←) While BLP applies to any living person, even in non-biography articles, it only applies to a named person or, possibly, to an identifiable group. In this case, "extremist" is not an identifiable group, so BLP doesn't apply. As for context, The Guardian is generally considered a reliable source and I think we have to assume that the newspaper did their fact-checking unless you can find something equally reliable that clearly states that Wessely and McClure were making things up. – Robin Hood  ^(talk) 02:57, 6 July 2015 (UTC)

I started this section by supporting a TBJ edit, and even I find TBJ's approach to the discussion less than helpful. I don’t want to expend everyone’s time arguing about something where consensus can’t be achieved, I’ll make a couple of more points and offer a summary of where we seem to be:

1. The concept of ‘patient community’ is highly problematic. Like race and gender, being a patient isn’t a matter of choice and globally it’s estimated there are 17 million people with ME/CFS/SEID. News reports that group people by some notion of commonality when referencing criminal activity without a) actually identifying individuals who identifiably share the commonality and b) offering a right of reply/refutation/rejection of offending members to the (by association) impugned community is not fair or balanced reporting. The question is not whether harassment occurred but whether the perpetrators are identifiable as members of ‘a community’ and whether such a community exists in meaningful terms. Just because a source is RS doesn't mean everything it publishes is sound.
2. Wikipedia policy is lacking and certainly BLP doesn’t apply for the reasons RH makes clear, however this becomes somewhat weaselish where people are collectivised on the basis of a non choice characteristic. In this case 17 million people plus their carers are classed on the basis of their health status, they are then linked to a very small number of unnamed persons who have targetted certain researchers. A comparison might be made with relationship of Animal Welfare groups to extremists like ALF – but to be a member of the RSPCA or PETA involves choice – being a patient doesn’t and both BLP and Wikimedia’s equality policies should fairly have a bearing in this circumstance.
3. Community spokespersons – Charles Shepherd is a good example of who is not a “community spokesperson” . Charles is the Medical Advisor of the MEA and a Trustee, as such he can certainly speak on behalf of the MEA on medical and related matters, as well as a member of the various bodies where he represents the MEA, and of course as a patient Charles can speak for himself. But the MEA isn’t 17 million people – it isn’t even the 240,000 UK patients. The harassment meted out to Charles over the years has been grotesque – interestingly one of those harassers who self identified as a the parent of a child with ME, subsequently confirmed that the child had received a wholly different diagnosis – to what community did this person belong ?

Summary of Discussion so far:

• There seem to be four options - 1. No change. 2. Deletion. 3. Transfer to Controversies and History Articles. 4.Expansion (here ?) and on Controversies and History Articles.

• Questions: Is it appropriate/helpful to vote on these options? Would it be useful to have third party comment ?--In Vitro Infidelium (talk) 11:45, 6 July 2015 (UTC)

To address your main point: I don't think we're tying criminal activity to the "patient community". The refs tie the patient community to being upset with CFS research and writing letters. It's only a small minority of extremists/nutters (I'm using that word in the "asshat" sense, not the mental illness sense) who are perpetrating criminal activity. Those nutters may or may not be part of the patient community, the same as the anti-AIDS nutters may or may not actually have HIV. Charles Shepherd's harassment seems quite notable given that he is actually representing a patient group, and makes it more important to mention it here. --sciencewatcher (talk) 14:42, 6 July 2015 (UTC)

• Courtesy Note- I've referenced this discussion in a Village Pump post https://en.wikipedia.org/wiki/Wikipedia:Village_pump_(policy)#Protected_Class_and_non_choice_characteristic_defined_groups --In Vitro Infidelium (talk) 11:42, 8 July 2015 (UTC)

  This should be irrelevant. The "CFS community" consists of those who identify as having CFS, whether or not diagnosed. That is neither a "protected class" nor a "non choice characteristic defined group". So, even if Sciencewatcher were wrong, and we were reporting reliable sources talking about the "CFS community" as a whole and criminal acts, it still wouldn't fit In Vitro Infidelium's characteristics. — Arthur Rubin (talk) 09:12, 9 July 2015 (UTC)

What is the supporting evidence for the definition that "The CFS community consists of those who identify as having CFS, whether or not diagnosed." ? We are being asked to accept its de facto existence without any credible description of what it is other than it's anyone who wants to claim (including anonyomously claim) they have CFS. By that standard anyone who wished to anonymously claim membership of a community and then take responsibilty for any kind of heinous act would by definition be tying the community to the act. This is by definition a discriminatory approach as where the community is defined on a non choice characteristic - gender, race, disability, chronic illness etc any member is linked by dint of 'community' with the offenders simply on the basis of the gender, race disability or health status. Were the text under contention here, to actually identify individuals who were linked to ME/CFS organisations, or have an identified diagnosis of ME/CFS or be a carer of such then issue would be rather different but all we have is a weasel usage of the term community in terms that are discriminatory. --In Vitro Infidelium (talk) 13:27, 9 July 2015 (UTC)

There's nothing about having a disease that makes you join a community, and joining those communities requires only desire, not an actual disability or diagnosis. WhatamIdoing (talk) 02:54, 11 July 2015 (UTC)

I saw the discussion at the Village Pump, and looking through this reminded me of an incident in a different field. In that case, we had academic journal articles saying that high-profile harassment of a few scientists by a few affected people was directly causing new researchers to avoid the field and making it hard for established researchers to get funding allocated for research in that field. It seems to me that this effect is more important than the narrative of "a couple of desperate people briefly behaved badly when their favorite hope for a cure was unceremoniously ripped away from them". IMO, if an effect on the field as a whole can be sourced, that would be a more encyclopedic thing to talk about.

Also, Sciencewatcher, WP:SPI is thattaway, and an e-mail message to a CU is a much better way to make allegations about banned users than posting here. WhatamIdoing (talk) 02:58, 11 July 2015 (UTC)

WhatamIdoing: I'm well aware of SPI, but as I mentioned above I don't want to go that route as it would get the user banned again. I simply wanted to make the editors here aware of the fact, the the banned user caused a lot of trouble on this page. Back on topic: yes, the sources do talk about scientists leaving CFS research due to the harassment and the effect on research as a whole, and I agree that we should be concentrating on that. --sciencewatcher (talk) 16:44, 11 July 2015 (UTC)

Just to clarify, ArbCom had already been notified before anybody mentioned anything publicly here on the page. At that point, I suspect going to SPI would've been redundant. In any event, the point is now moot, as The Jolly Bard has been banned by an ArbCom clerk. – Robin Hood  ^(talk) 18:59, 11 July 2015 (UTC)

Right, so what we want then is something less like "at one point, some researchers got death threats for being right" and more like "fewer researchers are choosing to work on CFS because of some high-profile attacks on researchers in 2011" (or whatever). I think it ought to go in ==Research==. What do you think? WhatamIdoing (talk) 19:21, 11 July 2015 (UTC)

The controversies section also seems a good place. --sciencewatcher (talk) 20:29, 11 July 2015 (UTC)

Again, this is based on a newspaper(s) basing their report(s) on what one person in one country said happened. It's heresay at best. "fewer researchers are choosing to work on CFS because of some high-profile attacks on researchers in 2011" there is just no reliable basis to say something like this in a medical article. There is no discrete evidence of this. This implies that this is the case all over the world, but the source for this is based on an isolated incident that (supposedly) happened in one single country. Again I'll assert that this is not appropriate information for a top level medical article. Other disease articles (AIDS) where something similar happened make no mention of it. Anal0gue (talk) 22:06, 11 July 2015 (UTC)

We're not talking about "one incident". It's mostly about a huge number of letters written to many researchers. The abuse and harassment is just a small part. It's not just newspapers either -- the BBC and BMJ as well. Read the refs. --sciencewatcher (talk) 00:25, 12 July 2015 (UTC)

HIV research doesn't seem to be having any trouble attracting new talent into the field, so it would be WP:UNDUE to say that it did. Also, this isn't "a medical article". It's "an encyclopedia article". That means that it can and should cover more than purely medicine. WhatamIdoing (talk) 15:42, 12 July 2015 (UTC)

(←)Points made by WhatamIdoing:

• “There's nothing about having a disease that makes you join a community, and joining those communities requires only desire, not an actual disability or diagnosis.” That’s a sound exposition, but leaves us with an ambiguity where an RS uses a disease to name a community, and where there is no balancing material to show that there are patients with the disease who are ‘not part of that community’ and further why not being part of the community is not a negative connotation. I can’t see how ‘community’ is anything other than a weasel term albeit one used widely by RS publications.

• Right, so what we want then is something less like "at one point, some researchers got death threats for being right" and more like "fewer researchers are choosing to work on CFS because of some high-profile attacks on researchers in 2011" In principle that must be right, however we have no source that demonstrates any linkage between fewer people becoming involved in CFS research and any claimed harrassment. This becomes very pertinent (and very telling of validity) if the suggestion to move to ==Research== is followed. We have a large section on the very limited funding of ME/CFS research, against that background it is impossible to ascribe movement into or out of research as anything other than a product of a lack of finance, or of a product of competition between medical specialisms. Psychiatrists telling the media that researchers are going elsewhere, when the funding is going elsewhere (viz MRC), and ascribing the change to harassment, is something that deserves scepticism whatever the media choose to report. It is plainly WP:UNDUE because we have no balancing statements from other interested specialisms who have been the beneficiary of redirected funding. If for example Julia Newton’s team at Newcastle were saying – “we’ve got this funding but can’t attract the staff because of all the harassment”, then there’d be a balanced basis to include the issue. As it I we have nothing like that. The best that could be said is: “in 2011 researchers studying psychological interventions for CFS reported harassment from individuals claiming to be part of a CFS community; it was also stated that this harassment had resulted in a reduction in those seeking to continue such research”

• ……………….. It's "an encyclopedia article". That means that it can and should cover more than purely medicine. That may be correct but without good sources there is a strong tendency for this to produce WP:SYNTH and along with NOTANEWSPAPER and TABLOID. History of a disease demands something more than media reports or single author opinions and chronologically disparate changes in perspective. Controversy seems particularly suspect when it depends on a very ambiguous reading of what is differently controversial over the course of decades. --In Vitro Infidelium (talk) 14:12, 17 July 2015 (UTC)

Um, there are actually quotes from multiple scientists saying they *have* left research due to harrassment. Again, I think you need to read the sources (bbc/bmj/observer/guardian -- I don't think we include them all in the article right now). Anyway, all this discussion seems like a bit of a waste of time. I think people are discussing different things. Someone should just go ahead and rewrite this bit of the article and then we can see if there are any actual objections to the content. --sciencewatcher (talk) 03:07, 18 July 2015 (UTC)

It is notable that sources currently used only refer to Myra McClure as definitively giving up CFS research – this is somewhat empty as XMRV was the only time McClure had anything to do with CFS and with the XMRV retraction, relevance of retrovirology (McClure’s specialism) to CFS was largely diminished. Wessely is quoted as saying he still (at that time) treats CFS but ceased CFS research years previously, not related to harassment.

I’ve followed Robin Hood’s proposal and taken out the last two sentences of the controversies section. If there are no suggestions for alternative sources I will also remove what is now the last sentence which is based on a source that is 16 years old and can’t realistically support the statement that: “Controversies still exist over funding …..”

Separately I’ve reworked the XMRV element of the History section. Personally I think that even in History XMRV is a mere aside to CFS, particularly when there are so few other sources to give a balance of actual science effort committed to CFS research. But I take from the discussion that others want it to remain in some part of the main article. --In Vitro Infidelium (talk) 13:40, 24 July 2015 (UTC)

Not sure why you're saying just McClure. Hamilton, Wessely, Crawley all explicitly say they either gave up research due to harassment, or were thinking about it. Did you read the sources as I suggested earlier (particular Hawkes)? See the "research threatened" section in that ref. To be honest this campaign of yours to censor this important info by (apparently) not reading the sources is getting a little tiring. --sciencewatcher (talk) 15:07, 24 July 2015 (UTC)

• @Sciencewatcher. I’ve had an illness enforced absence from WP – I hope that this gap has served to reduce your dyspeptic attitude; your accusation of my editing WP articles to achieve censorship, hardly demonstrates the ideal of editor behaviouron your part. I have reset my previous edits as the objections you offered are not merited by the sources your argument relies upon. I had indeed previously read these thoroughly but in the light of what borders on tendentiousness on your part I’ll enumerate what the sources actually present:

Persons identified as being harassed - across all three sources (it is of note that the sources of those articles are substantially the same):

Esther Crawley

William Hamilton

Myra McClure

Michael Sharpe

Peter White

Simon Wesseley

Plus two unnamed persons are referred to in anonymous in hearsay.

Of those who are identifiable, only Crawley says she considered giving up CFS research. McClure did not have further involvement after XMRV was shown to be bust – but there is no logical base for her continued involvement in the field. Wesseley makes no direct statement about harassment being a factor in his choice to follow alternative research. These individuals are far from being representative of the full field of ME/CFS research and the reasons why each was (as claimed) targetted for harassment is very particular to them. In the case of Crawley it was the Smile Project – not any other research carried out by her. For Hamilton it was his published views combined with his NICE position and for McClure it was solely related to XMRV. In the case of Sharpe and White it was PACE – where the only named harasser is identified as an emeritus academic, someone who is most certainly not a patient or carer; whatever their thoughts about moving on from ME/CFS Sharp and White have continued to publish at length. Sharp does refer to an unnamed person detained carrying a knife, but no actual connection to ME/CFS is identified, nor is any other illness they may have been suffering, discounted. Only Wesseley appears to have attracted a more general level of harassment yet he reports he continued to treat CFS but that his research interests moved elsewhere without any clear linkage being made to ME/CFS patient sourced harassment.

No reasonable person would find any of the reported harassment acceptable but Wikipedia isn’t a venue for berating harassers of academics. The 2011 UK media coverage which is the only source for the claims of harassment has the common thread of the involvement of the Science Media Centre. WP editors ought to be able to identify a PR manufactured confection and treat it accordingly – robotically repeating RS, RS, RS isn’t adequate when the sources are patently partial and/or are failing to achieve balance in their writing. In the subsequent four years there has been no independent verification of the claims made and there is now more research interest in ME/CFS than at perhaps any time since Acheson published in 1959. Further there is no evidence of any available grants not being taken up, yet plenty of evidence that the existing funds aren’t available to meet researcher demand. The claim that researchers were being inhibited was either empty or is now of historical relevance only.

If historic harassment of six UK academics ( a psychologist, 3 psychiatrists, an academic GP and an incidentally involved retrovirologist) is deemed appropriate to this article then the text needs to reflect the historicity, the geographical limitation, the limited specialisms and the lack of subsequent corroboration of claims. The current text does not reflect these issue and as such breaches multiple WP standards.--In Vitro Infidelium (talk) 11:22, 24 August 2015 (UTC)

Your accusation of PR by the "Science Media Centre" isn't exactly helpful. The Wessely harrassment stories go back to 2002, and as you point out the other instances of harrassment include at least 3 separate different areas of research. I'll wait to see what other editors think. --sciencewatcher (talk) 15:36, 24 August 2015 (UTC)

I’ve made some text changes to add some neutrality including a tense change. After 4 years we would need some more recent sources to support a continuing tense. Re: the SMC – in an age of churnalism WP editors can’t be oblivious to PR operations that seek to shape the news across multiple outlets; the role of the SMC is hardly without problems - http://www.scidev.net/global/journalism/feature/uk-s-science-media-centre-lambasted-for-pushing-corporate-science.html --In Vitro Infidelium (talk) 13:01, 8 September 2015 (UTC)

Rintatolimod

Ref says "Trials of rintatolimod, counseling therapies, and graded exercise therapy suggest benefit for some patients meeting case definitions for CFS". This is from Ann Interm Med and is a 2015 review [18] Doc James (talk · contribs · email) 19:36, 23 September 2015 (UTC)

The reason I removed it is because the FDA says that the RCTs "did not provide credible evidence of efficacy". --sciencewatcher (talk) 23:32, 23 September 2015 (UTC)

Is there an RS for "did not provide credible evidence of efficacy" ? Is it the 2013 FDA Complete Response (CR) letter ? If we have an RS then I certainly think the FDA position should be included alongside the Ann Interm Med referenced material. Hemispherx is hardly a non controversial body and the NIH pathways report wasn't an in depth analysis of drug performance, so a balancing sentence is probably desirable. I can't find an online source so can't do the edit myself. --In Vitro Infidelium (talk) 11:46, 25 September 2015 (UTC)

That's just what we say in the treatment article, so if there isn't an RS it will need to be fixed too. I haven't really looked into it. --sciencewatcher (talk) 15:00, 25 September 2015 (UTC)

Thanks and added FDA statement to balance the 2015 review. Doc James (talk · contribs · email) 19:12, 25 September 2015 (UTC)

Ref

Was their a ref that supported "Between 2009 and 2013, the majority of funded research into CFS focused on psychologically-oriented models of the disease and behavioral treatments" Doc James (talk · contribs · email) 01:36, 18 October 2015 (UTC)

I don't believe so and in any case such a claim would need to be qualified by country/funder. Further it seems very unlikely to be accurate as a simple review of http://report.nih.gov/categorical_spending.aspx shows, NIH being globally the largest funder of CFS research and psychology getting barely a look in during those years (That's my OR but a decent ref would have to have addressed the NIH data.) The NHS National Institute of Health Research in the UK (primarily England focus) has had an exclusive bias toward psychology research for CFS, but funding is a fraction of the US figure, and different funding priorities although of much smaller budgets again, apply in Scotland and Wales. The UK MRC began transitioning to a more biophysical focus several years ago although the budget size is small compared to the US. Various other European countries fund CFS research, although it's difficult to get accurate data, there's clearly a bias toward psychlogical approaches but the amounts allocated are again small compared to the US. I'm not aware of anything that would qualify as RS that deals with global research allocations for CFS, there maybe something relavant in the IOM that is specific to the US but I only recall general statements not any definitive figures. --In Vitro Infidelium (talk) 11:15, 20 October 2015 (UTC)

That was originally my edit, but you both have a fair point; what I added was very UK oriented, and probably not true interationally. I'm happy with its removal. --124.197.40.26 (talk) 03:47, 21 October 2015 (UTC) --Wilshica (talk) 03:47, 21 October 2015 (UTC)--Wilshica (talk) 03:47, 21 October 2015 (UTC)

Images of CFS

A recent edit has added two images to the CFS article, one is a group of protesting patients which seems uncontroversial although I'm not convinced of it's relavance. The second however is a piece of art https://en.wikipedia.org/wiki/File:Cfs_woman_sketch.jpg which without any balancing material offers a view of cfs that seems bound to support confirmation bias. My guess is that most CFS patients will look at that in an encyclopedia article and groan. I was inclined to simply revert it - however perhaps it would be useful to have a discussion about relevant graphic content of the page. My preference however would be to do without pictures if floppy sub art deco/Pre Raphalite female figures have to be included.

--In Vitro Infidelium (talk) 11:28, 20 October 2015 (UTC)

I added the images not because I was looking for those images but because I saw that the page didn't have any and I looked to see what potential images existed. There wasn't much but those 2 seemed like they might fit in in the Society & Culture section and look reasonable at thumbnail size.

• So for the petitioners – the issues regarding politics / levels of support etc are definitely noteworthy in CFS. It is obviously difficult to come up with images that summarize the totality of this but I think that a photo of some political action is appropriate for the article.

• For the sketch – I agree some people might groan but equally some others might like it. I assume that the person that drew it regards it as having some merit. The topic of depictions of CFS in art and art by people with CFS seem like appropriate things to cover in this section. a paper from Brunel from a very quick search

What is the confirmation bias that you are assuming? That people who may not have CFS who are fatigued will see that image, identify with it and assume that they have CFS? JMiall₰ 12:37, 20 October 2015 (UTC)

I have no problem with either of these two images. I don't think there is one image that can illustrate the variety of patient conditions, and IMO any confirmation bias about the illness with any image will be shaped by the reader's preconceived attitudes. There are some very illustrative images on the web of the very sickest patents that plainly convey the terrible shape they are in, but as far as I know their epidemiology within the patent population is hardly mentioned in research. This is a good topic for discussion though. Perhaps there Is a pertinent wiki topic board that may be notified of an WP:RFC? Ward20 (talk) 20:54, 20 October 2015 (UTC)

These type of conditions are exceedingly hard to illustrate. Usually illustrations are controversial just as the subject matter is controversial. Thus I thank you for your efforts. Doc James (talk · contribs · email) 04:02, 21 October 2015 (UTC)

I agree with Ward20 that an RfC would be useful, though I’m unclear whether this should be targetted to WP Project: Medicine or to some page related to WP:MoS. To answer JMiall’s question re: confirmation bias:

• Bias 1. Affected persons are female, young, waiflike, nullipara, caucasian.

• Bias 2. Affected persons are conversant with/exist within a cultural frame of 20thC Western Art.

• Bias 3. The defining symptomolgy experienced by patients is fatigue and/or emotional distress.

The problem is that we have a single image that appears representative of some kind of existential suffering that by its context appears to imply it is generally descriptive of the effects of CFS, yet CFS is a heterogenous illness(or group of illnesses) where a wide range of cultural, ethnic and social representation is widely acknowledge to exist in the patient population. CFS is not (only) a disease of waif like young women who feel exhausted all the time, it’s an illness or indeed spectrum of illnesses that has/have multiple impacts on females and males across wide age, ethnic, social and cultural ranges. Adding graphics to the article to give it visual oomph when the graphics available are not illustrative of the complexity of the subject seems to me to be unbalanced and at risk of running foul of [|PERTINENCE ]– notably “If the article is about a general subject for which a large number of good quality images are available, (e.g., Running), editors are encouraged to seek a reasonable level of variety in the age, gender, and race of any people depicted.” If the pictures aren't available to allow presentation of both illness and patient population heterogenaity, then we should be extremly cautious as to what images are used in isolation.

--In Vitro Infidelium (talk) 13:30, 21 October 2015 (UTC)

This is rather contrary to the approach used in FAs on difficult to illustrate articles such as Major depressive disorder and Schizophrenia. JMiall₰ 13:57, 22 October 2015 (UTC)

JMiall please tell us what is the "approach used in FAs on difficult to illustrate articles". Roger (Dodger67) (talk) 19:32, 26 October 2015 (UTC)

I don't know, it's not an area I've got involved in before. I assume that as FAs whatever standard was applied though was something close to best practice. Both contain images of artwork in much more prominent places in the articles and much the same style of complaint could have been levelled at these specific images as has been written above. Therefore I conclude that this style of image is fine. JMiall₰ 19:32, 27 October 2015 (UTC)

WP:MEDMOS has some relevant and useful guidance about images. -- Roger (Dodger67) (talk) 19:42, 26 October 2015 (UTC)

I've posted a discussion here [19] to see if there are any suggestions about structuring a formal RfC. --In Vitro Infidelium (talk) 17:49, 26 October 2015 (UTC)

Thanks for the notification, unfortunately you posted it to one of the most obscure pages of WikiProject Disability, so I've taken the liberty of moving it to WT:WikiProject Disability#Disability Images so that more editors would notice it. (BTW, please don't "hide" wikilinks in your posts by formatting them as bare URLs, it makes your posts unneccessarily hard to read. Roger (Dodger67) (talk) 18:59, 26 October 2015 (UTC)

CBT Section

the first sentence is another overstatement, furthermore the sources cited for it are at least a decade old. I want to rework this section throroughly explaining the various stances held, with discussion of the controversies better woven into the rest of the topic instead of added as an afterthought. as it reads now it seems to almost contradict itself. I think all the info is there but needs to be rewritten. Dailyshampoo48 (talk) 08:49, 12 November 2015 (UTC)

As regards the age of sources unless there's better/equal more recent sources, then either a sell by date needs to be established as a basis for removal or the source stays, it's not unusual for treatments, even ineffective ones, to stay in use for many years without being challenged by new research. I'm happy to see a rewrite of the CBT section although my preference would be for something far more parsimonious than a 'discussion of controversies; given the potential difficuties with a rewrite I'd suggest running drafts on this page or on a sandbox first, rather than risk serial reversions which are difficult for some of us to follow.--In Vitro Infidelium (talk) 12:44, 12 November 2015 (UTC)

that's fine, I'm hoping that getting this hammered out properly can help us solve our problems re: the lede Dailyshampoo48 (talk) 22:55, 12 November 2015 (UTC)

Potential Source

This is a recent publication: http://www.jacobspublishers.com/images/Physiology/J_J_Physiology_1_2_007.pdf this review study seems to fit MEDRS and may offer some useful additional sources for the CFS article, the co-author seeming appropriately qualified and the journal of appropriate quality. A review by Twisk and Maes is already a source. --In Vitro Infidelium (talk) 13:23, 12 November 2015 (UTC)

The problem with that source is that it's in a lesser known journal that's on a list of predatory publishers. If there's any truth to the claim that the journals on that list don't always provide the services they claim to, then it may well not be a peer-reviewed journal as it claims. I'm not a researcher or anything like that, though, so I don't know whether Beall's list is something that's well-regarded or that nobody's ever even heard of that just happened to appear at the top of the Google results. – Robin Hood  ^(talk) 18:51, 12 November 2015 (UTC)

maybe a worthwhile source for its respective section in the body of the text. I think we should focus our attention there for a while and then return to lede. I'll reiterate that as it stands now the article reads that all treatments are controversial and we need to say just that until we properly do our research. Dailyshampoo48 (talk) 23:07, 12 November 2015 (UTC)

I hadn't previously come across Beall's list. There appears to be some controversy over claimed bias of the list against open access publishing per se, nevertheless Beall's list probably should serve as at least a moderator when considering MEDRS. This article from Beall certainly brings into question the validity of Jacobspublishers and on the strength of that I would say we have to exclude the Twisk & Geraghty paper, which is a shame because there's interesting stuff in there. --In Vitro Infidelium (talk) 18:20, 13 November 2015 (UTC)

Reverted edition

@In Vitro Infidelium: about this reverted edition (Undid revision 690274328 by BallenaBlanca (talk) Doesn't seem to relate to CFS) Perhaps the problem is that the source is not free access and you have not been able to read it. No problem, I have the article:

PMID 25583468 Fasano A, [Sapone A, Zevallos V, Schuppan D (May 2015). "Nonceliac gluten sensitivity". Gastroenterology 148 (6): 1195–204] NCGS most frequently produces a combination of intestinal and extraintestinal symptoms. IBS-like symptoms, such as abdominal pain, gas, distension, and irregular bowel movements, frequently are reported and therefore make it difficult to distinguish NCGS from IBS induced by other causes. The differential diagnosis is facilitated for patients who also experience extraintestinal symptoms, including headache or frank migraine, foggy mind, chronic fatigue, joint and muscle pain, tingling of the extremities, leg or arm numbness, eczema, anemia, depression,6,8 or for patients who report a reduction in immune-mediated (including autoimmune) symptoms on a GFD. (…) Of particular interest is the relationship between NCGS and neurologic and neuropsychiatric disorders, including autism, schizophrenia, and peripheral neuropathy.

Another not free access article:

[PMID 26060112 Volta U, Caio G, De Giorgio R, Henriksen C, Skodje G, Lundin KE (Jun 2015). "Non-celiac gluten sensitivity: a work-in-progress entity in the spectrum of wheat-related disorders". Best Pract Res Clin Gastroenterol 29 (3): 477–91. doi:10.1016/j.bpg.2015.04.006.] The most frequent extra-intestinal features of NCGS include fatigue and lack of well-being together with neurological symptoms, i.e. headache, “foggy mind”, arm / leg numbness and anxiety / depression. Other systemic signs are joint / muscle pain resembling fibromyalgia, skin rash / dermatitis, weight loss, iron-deficiency and / or folic acid anemia and, although rarely, allergic manifestations such as asthma and rhinitis.

This article is open access:

PMID 24077239 Catassi C, Bai J, Bonaz B, Bouma G, Calabrò A, Carroccio A, Castillejo G, Ciacci C, Cristofori F, Dolinsek J, Francavilla R, Elli L, Green P, Holtmeier W, Koehler P, Koletzko S, Meinhold C, Sanders D, Schumann M, Schuppan D, Ullrich R, Vécsei A, Volta U, Zevallos V, Sapone A, Fasano A (2013). "Non-celiac gluten sensitivity: the new frontier of gluten related disorders". Nutrients (Review) 5 (10): 3839–3853. doi:10.3390/nu5103839. ISSN 2072-6643. NCGS is characterized by symptoms that usually occur soon after gluten ingestion, disappear with gluten withdrawal and relapse following gluten challenge, within hours or few days. The “classical” presentation of NCGS is a combination of IBS-like symptoms, including abdominal pain, bloating, bowel habit abnormalities (either diarrhea or constipation), and systemic manifestations such as “foggy mind”, headache, fatigue, joint and muscle pain, leg or arm numbness, dermatitis (eczema or skin rash), depression, and anemia [2,15].

Then, I will restore my text. And also, I will add more information. CD and NCGS are two of the main diseases that indisputably may cause chronic fatigue. Two specific sources for CD:

PMID 23062157. Chronic fatigue syndrome: diagnosis and treatment. Am Fam Physician. 2012 Oct 15;86(8):741-6. Yancey JR, Thomas SM The National Institute for Health and Clinical Excellence (NICE) guidelines (...) also recommends using immunoglobulin A endomysial antibodies to screen for celiac disease, and if indicated by the history or physical examination, urine drug screening, rheumatoid factor testing, and antinuclear antibody testing.8 Viral titers are not recommended unless the patient's history is suggestive of an infectious process, because they do not confirm or eliminate the diagnosis of CFS.

PMID: 11703165 Chronic fatigue syndrome: oxidative stress and dietary modifications. Altern Med Rev. 2001 Oct;6(5):450-9. Logan AC, Wong C. Celiac Disease May Mimic CFS Keeping in mind that CFS is a disorder of exclusion and that there have been reports of improvements with wheat elimination, all patients should be assessed for the presence of celiac disease (CD). Investigators have found CD to be an under-diagnosed condition in the general population and may present with only mild enteropathy or no GI symptoms at all. Neurological dysfunction is a known complication of CD and ataxia, and cognitive difficulties may be the first manifestations of clinically-silent celiac disease. (…)Finally, recent evidence suggests celiac disease can present with neurological symptoms in the absence of gastrointestinal symptoms; therefore, celiac disease should be included in the differential diagnosis of CFS.

Best regards. --BallenaBlanca (talk) 18:02, 12 November 2015 (UTC)

Coeliac Disease is identified in the NICE guidanceas one of several illnesses that should be excluded in diagnosis of CFS, it's imballanced to include this much detail on CD on the CFS page. The alternative is to have a paragraph on every illness that CFS might look like but isn't. I'm going to leave the page as is for 24 hours in case other editors wish to comment regarding retaining the CD material, but unless there's some support I'll revert if no one get's there first. --In Vitro Infidelium (talk) 15:36, 13 November 2015 (UTC)

Agree the NCGS stuff is inappropriate here. Alexbrn (talk) 15:48, 13 November 2015 (UTC)

Done (a part). [20] Best regards. --BallenaBlanca (talk) 18:02, 13 November 2015 (UTC)

I added the list of diseases. [21] Best regards. --BallenaBlanca (talk) 19:18, 13 November 2015 (UTC)

Interesting news article with comments by SW

Perhaps the beginning of a sea change in coordination between the competing theories. [22] Ward20 (talk) 02:46, 14 November 2015 (UTC)