Improving Wikipedia's references to ME/CFS

Someone once said whether you believe you can or you cannot (accomplish something) you are correct.
You are totally proving this true

 

You could point out that one of them has a private website selling/advocating for BPS treatments, which makes them biased and counts as a COI.

 

I suspect that when the new CDC "Resources for Healthcare Providers" comes out this summer, a lot of these current brick walls will start falling like dominoes.

Then again, I'm a hopeless optimist at heart.

 

@Webdog, so great! I borrowed heavily from your post and just sent off my own email to them. I wish I had seen your post first, though, @adambeyoncelowe, because that is a very good point to include. Maybe you can send that tidbit?

 

Inbox me the contact details of your editor friend, and I'll make that point.

 

More generally, does anyone know how it was figured out the guy with the mind-body-soul website was one of the editors?

 

I think it's possible that the SBU has received some complaints recently, because his Wikipedia profile page was updated yesterday. It now says that he no longer works for the SBU, that he last worked for them in the autumn of 2017. And there's bold text added that says "Edits made outside of these time periods are not at all connected to the SBU." Also, some (many?) of his edits on the CFS page have been rolled back.

 

Good!

 

In the meantime, you can also contribute to MEpedia

http://me-pedia.org
https://www.facebook.com/groups/218347055598647/

Got questions? @JaimeS got answers

 

I received a template reply that made it clear they had not even read my email.
They ignored my alert that the editor was refusing updated reference material,
which includes CDC, NIH, etc. The person who replied made zero effort to look into it,
so when I'm more cogent, I will write again to someone else at Wikipedia.

 

Brilliant effort Allele! Thank you so much for trying!

(The person who made the rubbish edits on the Swedish CFS page has been making some updates on the English page too.)

 

I asked David Tuller ln a comment to try. I was thinking maybe a well stablihsed writer would have better luck. This is so important for the ME community to take ownership of that page.
Let me know if I can help in any way.

 

Wikipedia is really important, but its rules seem to be actively designed to make it difficult to make claims on the basis of evidence and accuracy rather than 'respected sources' (or whatever their term is). Whenever I look at the disputes there it looks like there's a real problem with some misguided established editors, and having people who are willing to play their tedious games might be more useful than having someone with Tuller's skills.

 

So can we like do a signed letter from organizations to update? hire A hacker???? An act of Congress.
WhAt does it take to upadate?

 

The main thing: get Cochrane to withdraw their reviews or issue corrections. Their response to the comments Robert Courntey submitted did not inspire a lot of faith: https://sites.google.com/site/mecfs...exercise-therapy-for-chronic-fatigue-syndrome

@Jonathan Edwards implied that there might be some movement from them since then, but who knows?

 

Sometimes, going to Wikipedia's content partners, rather than Wikipedia itself, can get a response. Particularly, companies based on a strong code of ethics, such as the search engine DuckDuckGo.

 

Very impressive, we may have Dax the Duck on our side now

 

Anyone notice how much better the Wikipedia "Chronic fatigue syndrome" page has become recently? Less pushing of GET and CBT. Kudos to whoever accomplished it.

 

I suspect it had something to do with @Webdog

Though the trick is to see if we can keep improving it, this line near the beginning is not encouraging (though it is less bad then before)

 

Honest it wasn't me. I leave Wikipedia to the experts.

Still some major issues (still calls the disease CFS, still recommends psychiatry), but the changes in the text are quite impressive.