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This is an old revision of this page, as edited by 65.81.79.71 (talk) at 17:49, 28 August 2015 (→‎Vandalism?). The present address (URL) is a permanent link to this revision, which may differ significantly from the current revision.


UK Situation in General

The material on the 'British situation' has undue weight in terms of it's presence on this page that does nothing to improve understanding of the illness, while the symptoms section is little more than a list and very hard to read. This should be moved into the Controversies page. Leaving it here creates a fork lacking balance and lacks a Neutral point of view WP:NPOV.

It also needs to be much more 'Journalistically sound' by properly drawing together the full impact of those targeted and the limited extent of that activity.

Not a Newspaper

The Jolly Bard made a deletion which was then reverted by Sciencewatcher https://en.wikipedia.org/w/index.php?title=Chronic_fatigue_syndrome&type=revision&diff=669226253&oldid=669225267 and https://en.wikipedia.org/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 If XMRV had proved to have a connection to CFS, if the Nature magazine article had not been retracted, if there had been criminal proceedings which had linked a CFS patient or advocate with harrassment - then perhaps there would be reason to keep this in an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)[reply]

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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
  • @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)[reply]

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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]

@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)[reply]

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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
I'll leave it for people to decide for themselves. --sciencewatcher (talk) 16:04, 5 July 2015 (UTC)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
You don't get to make up rules here on Wikipedia to suit your editorial wishes. Yobol (talk) 19:45, 5 July 2015 (UTC)[reply]
Wikipedia already has policies in place for every occasion, e.g. WP:BLP. The Jolly Bard (talk) 19:59, 5 July 2015 (UTC)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]
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)[reply]

(←) 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)[reply]

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

(←)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)[reply]
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)[reply]
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)[reply]
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)[reply]
  • @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)[reply]
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)[reply]

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)[reply]

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

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

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)[reply]
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)[reply]
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)[reply]

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)[reply]

Eh. I'll continue to disagree in absence of a reliable source showing this. Anal0gue (talk) 23:25, 4 July 2015 (UTC)[reply]
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[1] (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)[reply]
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)[reply]
Lots of organizations classify it as such [2] 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)[reply]

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)[reply]

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.[Rituximab 1]

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)[reply]
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)[reply]
The reference in question says "This, however, was a post hoc analysis as the trial failed..." [3]
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)[reply]
Okay, fair enough. Does the second study pose a similar concern? – Robin Hood  (talk) 16:37, 8 August 2015 (UTC)[reply]
It is not a randomized controlled trial [4]. 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)[reply]

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 [5]. Maybe we should mention the phase 3 trial. 93.34.9.232 (talk) 18:02, 8 August 2015 (UTC)[reply]

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)[reply]
We don't normally comment on ongoing phase III trials. This should be no different. JFW | T@lk 21:16, 9 August 2015 (UTC)[reply]
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)[reply]
Agree, wait for better sources. Ward20 (talk) 09:05, 10 August 2015 (UTC)[reply]
  1. ^ Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, The National Academies Press, 2015, p. 152

Research funding

Interesting report in Science News about patient advocates and researchers calling for greater research funding in The US.[6] 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)[reply]

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)[reply]

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)[reply]

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)[reply]

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

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