Improving Wikipedia's references to ME/CFS

looks like there's been a bit of heated discussion about it:
https://en.wikipedia.org/wiki/Talk:Chronic_fatigue_syndrome

 

It seems to me that they are going about it the long way. Why not reference the Journal of Health Psychology special edition. It has all the rebuttal to the PACE trial that is needed as verification of the problems in the PACE research.

 

should also be possible to reference the addendum to the AHRQ report
results summarized here, but they moved the addendum and the link from there is broken.
the link to the addendum which was finally added to the full report works.

It is 5 years old, but so are nearly all the studies being cited in Cochrane. Certainly they would have little to say without PACE, which is more than 5 years old.

Pretty sure AHRQ admitted that in the response to comments.

(Edit: page 8 of disposition of comments, also linked from the full report, in response to a statement by public commenter #38, they said they wouldn't [originally] exclude [bogus] definitions [like Oxford] because:

"First, there are very few trials; excluding some of these definitions would limit the evidence even further than is already outlined. Second, the intent was that this could at least provide a foundation to determine what interventions may be effective." [and one could do sensitivity analysis and subgrouping in the "more research needed" bit later])

 

Back in 2007 ME had it's own Wikipedia article: https://en.wikipedia.org/w/index.php?title=Myalgic_encephalomyelitis&oldid=164834190 - but the skeptics managed to get it removed.

I'm in the UK, skeptics conflating our illness with chronic fatigue isn't surprising at all.

 

I haven't read thru all of this thread, but just wanted to share the CFS is mentioned on the https://en.wikipedia.org/wiki/Medically_unexplained_physical_symptoms page as well.

 

https://twitter.com/user/status/1108423238533763077


Maybe this guy @WikiDocJames would be someone to get in touch with on this.

 

DocJames is reported as being one of the Wiki editors who blocks any deviation from the BPS hymn sheet unfortunately.

 

Of course he is. Bah.

 

Related posts:

https://www.s4me.info/threads/me-charities-response-to-the-reuters-article.8673/#post-152944

https://www.s4me.info/threads/me-charities-response-to-the-reuters-article.8673/page-4#post-153336

 

not on wikipedia but Wikihow:
https://www.wikihow.com/Recognize-Chronic-Fatigue-Syndrome-Symptoms

under treatment:
"You may be prescribed an antidepressant, such as Elavil or Wellbutrin, or sleeping pill, like Ambien, to help alleviate your symptoms. These can help you cope with feelings of stress, anxiety, and depression and help you get more restful sleep.[15]"
"Cognitive behavior therapy"
"A physical therapist may have you do graded aerobic exercise, such as walking, stair-climbing, and cycling, which may help alleviate CFS symptoms. Daily, incremental activity under the supervision of a physical therapist may help improve your endurance and strength over time.[19]"

you can vote on the article without any kind of registration (top rh corner under the authors pic)

 

I did and it said "thanks for voting", yet my vote was not counted...

 

Doesn't necessarily mean it wasn't. Not showing that a vote counted immediately is one way systems that allow anonymous voting to ward off bots. It's not perfect but it's commonly used.

 

I voted on the stars at the top right, as suggested.

I also clicked the 'Unhelpful' button at the bottom. Then selected 'instructions didn't work' which brought up a comment field where I explained that the treatment section was all wrong.

 

Was just reading about the Brexit wikipedia page battles, it all sounds somewhat familiar.
https://www.wired.co.uk/article/brexit-wikipedia-page-battles

a lot of editing and time goes into “patrolling” the page,” says Snoogans. “This means that I check all new changes, and if they’re bad, I revert them.” But what may appear like diligence to some editors, can look like bloody-mindedness to others..

Wikipedia editors are anonymous, and the community is almost entirely self-regulated. Although the english Wikipedia has almost six million articles, 77 per cent of them were written by just one per cent of editors. One editor, Emass100 says that the rules around editing are arcane and difficult for newcomers to penetrate, a fact that puts off new people from contributing to articles that are already dominated by big-name editors.

 

https://twitter.com/user/status/1143872041344479235

 

Wikipedia is indeed broken and its Admins operate like a cult.

I am lifetime banned (since 2007) from holding an active username on Wikipedia by Jimbo Wales following a kangaroo court on the Wiki Admin Talk pages and all the content on my own Talk page was deleted. One of the then notorious Wiki admins (JzG) (Guy Chapman, no relation) had pleaded in favour of my not being banned. But I received a lengthy email from Wales saying, inter alia, that he really didn't care whether I was guilty or not of whatever it was I was being accused of - he just wanted rid of me; followed by an apology from JzG that he had failed to prevent my banning.

Ironically, since then, from time to time, Wikipedia editors have linked to documents on my Dx Revision Watch and ME Agenda websites in article references.

 

This is very ... enlightening, I guess. I tend to use Wikipedia in my work for technical references, which are generally far less controversial, so I hadn't realised quite how bad it would be for contentious issues (did consider looking at the B----t coverage, but couldn't face it )

 

Adding evidence of the effects of treatments into relevant Wikipedia pages: a randomised trial

https://bmjopen.bmj.com/content/10/2/e033655

 

Some background info about this:
https://www.authorea.com/users/1634...mmit=08cf38b5217d31cd79a96dc7fdcc6615623e852c

 

Improving the article has happened in fits and starts since Trial By Error got the PACE ball rolling, so to speak, in late 2015. Aggressive edits are often reverted, but it seems like every once in awhile someone takes a look at the differences between the article and the 'reliable medical sources' and sees a way to insert relevant info & delete harmful info that for whatever reason just didn't happen previously. There's been a lot of movement on the page over the past few days, with an absolute ton of edits that have not been reverted. On the Talk page one of the usual suspects/Wikipedia Med/Skeptic Honcho is not taking it well, but as yet nobody has found a way to credibly revert what's been changed, for the most part. Of course, we're still in a holding pattern that keeps the article from being credible pending whatever happens with NICE/Cochrane and hopefully PACE. It's already been odd that the differences exist between IOM/CDC/AHRQ and NICE/UpToDate/Mayo/Cochrane, but it's just not important enough for medical science to care about. (I'm not offering kind words towards IOM or CDC, just pointing out that the official guidance is better than it was in this context)

The lords of Wikipedia will hang onto the credibility of Cochrane until the end of time, and the Lancet, too. Five years ago I was afraid that for purposes like this Cochrane's then-recently republished exercise review would trump the IOM, and I was right. Now that the CDC took the recommendations and changed their criteria, in spite of their dismissal of any complaints about Cochrane, the positive aspects of the IOM are more prominent vs them and PACE and seemingly winning out. That said, there's a certain editor who very loudly trumpets psychosomatic etiology for CFS on Twitter and all but promotes it and the Lightning Process on Wikipedia, who hasn't yet weighed in. He likely will, but in the meantime, the current state of the article has certainly improved over the past week.