Improving Wikipedia's references to ME/CFS

For instance?

Who talks about conspiracy?
I think it's questionable to discredit things people don't agree with as "conspiracy", where often for all sides the information is lacking in order to certainly establish there's a conspiracy (or not).

 

Sorry I have to ask, @Joh, where's the discussion page?

 

My question.

Spooky.

Interesting @lycaena

?

 

Not sure if this has been suggested but is it worth adding a mepedia page on Wikipedia problems and describing the issue with editing and list the all the inaccuracies. The only problem is keeping uptodate with changes, but I guess you can get alerted if Wikipedia article changes.

 

Could do pages for the worst editors there?

 

I did notice that the Wikipedia "Orthostatic intolerance" page does clearly state that exercise can worsen Chronic Fatigue Syndrome. This would seem to be at odds with their Chronic Fatigue Syndrome page.

 

Yep, that can happen because other Wikipedia pages that are not controversial have other editors who are very cooperative and friendly. I was able to add something about ME on the German page of Ron Davis without problems. That's a good way to spread info on ME to find other Wikipedia pages it might fit in.

 

Because the German Wikipedia page was discussed here: You can find the story in the archive and on various pages of Wikipedia. A great person worked on the article for nearly 10 years. Then two new editors came along with firm PBS-views. The extremely knowledgable editor of ten years was bullied and left. She wrote a goodbye-statement with the link to the final discussion. I thought about writing her and begging her to come back and that she wouldn't be alone anymore (because it was her against everybody else at that time), but I've had enough of Wikipedia for the moment (it would be different if there were more of us), the editors are aggressive and it's quite upsetting. Maybe someone else would like to try their luck.

Sorry, I don't get some alerts. It's at the top left corner - next to "Artikel", you can click on "Diskussion". Then there are also the discussion archives.

 

This word cloud was created from the current english entry for ME/CFS on the Wikipedia.

 

This website called Science Daily is incredibly out of date with its info on ME/CFS and starts with the Wikipedia reference..............there seems to be a number of ways to contact the site if anyone fancies having a go.

their most recent article:
"
Chronic Fatigue Patients More Likely to Suppress Emotions
May 17, 2016 — Chronic fatigue syndrome patients report they are more anxious and distressed than people who don’t have the condition, and they are also more likely to suppress those emotions. "


https://www.sciencedaily.com/terms/chronic_fatigue_syndrome.htm

 

I tried making some edits a while back. They were complimentary about them, even as they deleted everything. It's a shame, really. They don't even have the current CDC criteria on there as the main description of the symptoms--it's Fukuda, I think.

 

Someone made changes to the Swedish Wikipedia page on CFS yesterday

He deleted the info about the biomedical ME-centers Stora Sköndal and Gottfries, substantially weakened the statement that it's a neurological disease, made a number a changes along the lines of "suffering from > claim to suffer from", removed a sentence clarifying that PEM is not the same as exercise intolerance, added text like for example this paragraph (rough translation):

"The symptoms that are experienced are genuine, but the explanation model is not scientifically substantiated. Strong patient associations exist that propagate for the disease to be acknowledged, and these usually deny all psychological and psychiatric explanation models."

Removed the reference to WHO ICD-10 and G93.3, adding the note "rubbish, no source", "false", "that's a fucking lie".

Deleted the whole paragraph (2 226 characters) about the IOM report.

Deleted nearly the whole paragraph about scientific studies/biomedical evidence (4 317 characters).

Deleted everything about pacing.

Deleted links to the IACFS/ME primer, VISS's clinical guidelines and to RME (the Swedish ME Association).

Changed "ME" to "chronic fatigue" in a number of places.

The person who made the changes is "on his fifth year of medical school", and "a part-time Wikipedian in Residence for the Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU)"(!)...

 

I doubt it... As I see it, it's not about having access to facts or evidence, it's clearly about belief and ideology... The main problem, as I see it, is that he's apparently employed by the SBU which could be described as the Swedish equivalent to the US Agency for Healthcare Research and Quality (AHRQ). For him to completely dismiss the National Board of Health and Welfare, WHO and IOM/NAM etc as credible sources, that's just...

 

I know a wikipedia editor who is not connected to M.E.
If he were to agree to do some work on it, I'd need some kind person to send me some plug and play edits and references, because I cannot ask or expect him to do those things from zero.

 

The question which appears to arise is whether he is stating the views of the SBU, and, if not, if the views expressed are contrary to those of the SBU is there any breach of the employer's standards of conduct. If it is the case that he is an employee of an organisation but is publishing misleading information contrary to the views of that organisation he would appear at risk of bringing them into disrepute.

 

A member of the research council in RME and I complained about the changes of the Swedish Wikipedia text. It seems that they now have reverted to the previous version of the text.

 

Brilliant job, as always! Many many thanks, much appreciated!

 

That's a great idea. Could something be pulled together from the S4ME PACE briefing and this: https://m.box.com/shared_item/https://app.box.com/s/9s4coexxtys5bnz33i6gvqqygu67ex5o

 

I sent an email to donate @ wikimedia.org about their "chronic fatigue syndrome" page, letting them know that as long as they have obsolete, nonevidenced, potentially harmful medical information no longer recommended by any US government health agency, I refuse to donate.

Wikipedia's medical information and treatment recommendations strongly contradict the US Centers for Disease Control (CDC), Agency for Healthcare Research and Quality (AHRQ), and the National Institutes of Health (NIH), National Academy of Medicine (NAM) and the New York State Department of Health.

In conflict with Wikipedia's rules, this page is NOT open to correction by informed public, experienced clinicians, patient organizations, or biomedical researchers. The page is squatted by someone who as policy rejects quality peer reviewed medical literature that conflicts with their completely disproven world view.

Email contacts for various countries: https://wikimediafoundation.org/wiki/Contact_us

I encourage everyone to email Wikimedia/Wikipedia how they feel and how it may influence donations. Speak up. Your voice does make a difference.