Improving Wikipedia's references to ME/CFS

It does sound as though Wiki are trying to show that, within the group of those suffering from ME, those formerly suffering from ME, or those others with an unhealthy interest in ME, there remains a role for psychiatrists.

The obvious alternative of girlfriends is clearly out of the question.

 

Indeed, the ME wiki should already about fill that, but yeah i'm not an expert in Search engine optimization

 

I was just looking over the Graded Exercise Therapy page on Wikipedia. It still cites the CDC website as evidence. Can this be fixed?

So, their reference for GET in "CFS/ME" is the CDC. But the CDC no longer recommends GET!

To those with Wikipedia expertise, is it possible to remove references to the CDC, as the CDC no longer recommends GET? Further, is it possible to remove the entire top section of the page, as it only references the CDC as evidence?

 

Wikipedia is critisized by some German newspapers as being non-neutral. It seems there are certain interests in certain areas. If you follow the actions in the article - as you did, @Dr Carrot - it is suggestive that these aren't just "users". You are lucky to having been able to identify one of the editors. My guess is, after what I have read about Wikipedia - it is very difficult, probably impossible, to change it at this point of time.

 

Believe it or not - the Wikipedia article convinced my GP that ME is a serious biomedical illness. At that time, there was not much about the BPS ideology in it, though. Haven't checked since. It sounds like that changed?

 

Probably other sites will jump on that, like "Psiram". There are connections between Wikipedia and Psiram. So even if Wikipedia will allow a Ramsay article, probably Psiram will write about that it's pseudoscience. But to verify one would have to try.

 

I imagine the best approach is to find someone who is already a Wikipedia editor (or two) and ask them to make factual edits (like the CDC recommendation change, a short statement about PACE being criticised/controversial by other researchers and patient groups with links to the actual published criticism etc - all the most rigorous stuff).

The ideal person would be not much related to this subject usually but perhaps some past in editing on medical points.

[NB The information I personally think most important to be on Wikipedia would be that the cause is not known (but there are many potential mechanisms being actively pursued in research) and that no treatment is currently proven but that this is an ongoing investigation with a number of leads.

As there is resistance, I would try for getting statements about GET and CBT to be moderated with phrases like: not shown to be significantly more effective (in ME/CFS than any other conditions or healthy controls) than placebo effect. (Someone else could write this better).

Those are the sorts of things I needed to know when I was first looking.]

 

Du you still have a copy of that version, @Inara?

 

No. I should have taken one, shit! Does anyone know for sure if the version from 2017 really changed?

 

@Inara there were big changes in 2016, if I remember correctly (German Wikipedia)

 

Then my GP saw the "new" one because he read it in 2017.

 

Any hints and ideas who, why these changes (were) made? Why in 2016?

 

There is a timeline in Wikipedia. You can access it via a button looking like a watch going back in time. It is positioned at the end of the article, left side.

Wow, there is a lot going on, like Unrest added, Unrest kicked out, Unrest added,...

 

5. Nov. 2016:

Is that one of the changes in 2016?
I looked at some of the edits, and it doesn't look good.
Oh, I see there were a lot changes through "Saidmann". The reasons sound pretty weird in part... (Can a reference be too old?! Huh? A publication is a publication...seems odd to me.) There were made changes in favor of Henningsen et al, i.e. the BPS model.

Does someone know what happened that led to these changes? Did Henningsen contact Wikipedia probably?

Oct. 24th 2016:

By Henningsen

It's seems like Saidmann acted like God. He changed whatever he wanted.

Oct. 6th 2016
Old:

to new:

And much more...there was definitely a change in favor of the psychiatrists. Reason: evidence-based. Or: "no encyclopedic representation; Chaotization of article formatting", therefore change to psycho stuff.

I can now picture how the English site must look like...

 

German Wikipedia: If I remember correctly, in 2016 a person not related to ME/CFS (I guess) made a lot of good edits, than this same person made some weird edits, then the medical wikipedia team got involved ...

 

How do you know that person was not related to ME? And maybe it was that person's job to start havoc in order to get changes in the psychological direction?

It really sounds strange that - it seems - for years the content was ok, and instead of changing weird changes back, completely new content is created - psycho content. For this, new researches of publications is needed which costs a lot of time. Why should that be dond if there's not an interest behind that?

By the way, didn't know Wikipedia has teams with special expertise...are they paid employees? I thought it's open.

Ahhh, I think I don't know Wikipedia, and I start to think I don't want to.

 

@Inara You can search till summer 2016 and make your own mind. This first 2016- edit-person put a lot of work in the article. Most of her/his stuff is now gone. She/he had good ideas about ME/CFS and some strange ones which don't fit any ME or CFS advocacy direction. She/he seemed to be involved in a lot of other non related wikipedia articles.
I don't think there is a conspiracy.

 

It's interesting to also check the discussion page. You can read all the discussions about the changes and get to know the people who made them in the archive for the last years (I went through it all when I started editing, it's doable) - but you have to click on the the discussion and not the CFS-page.