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Terrible Wikipedia article on MECFS! (CBT, etc)

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
@gabriella17 @Mary
That is that the CDC has changed their CBT and GET recommendations, but the Mayo clinic hasn't. Wikipedia has refused changes that contradict the Mayo clinic's information, and the Mayo clinic denied @Mary's request to update their webpage until they are scheduled to update.

Ok. Surely the NIM supercedes Mayo as an authority? Their publication isn't even mentioned in the article.

I would love to take another stab at this, even if it has been attempted before. I'm willing to make the actual changes on the wiki page, although my wiki editing is very rudimentary.

My real skill, however, is in presenting information in such a way that it's difficult to be refuted. I've gotten all of the plumbing entirely replaced in my house for FREE because one of the plumbers left a couple of small, random parts in my bathroom, and broke a light bulb without cleaning it up. I got pissed off. I wrote up a 3 page letter along with attached photos, etc. basically stating that if the plumber was that careless, then how could I be sure that he didn't screw something up on one of the pipes? I was pretty amazed I managed to get it for free (I'd only asked for a discount), but when I met with the owner, I didn't back down. I missed my calling as a lawyer, lol.

Anyway, I'm willing to do the actual wording and editing, but what I'm not good at is 1) Academic/research terminology, citations, etc. and 2) My knowledge of various studies and sources is pretty limited because I'm so new to ME, there's so much biology on this site that it makes my head spin. I would need to know which things are best to include - i.e. the most compelling, and from the most respected sources.

Anyone willing to work on this with me? Or else, do you know of anyone on this forum who would be able and interested, who may not have read this post?
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
Also, as far whichever users are changing things back - another strategy could be to add information rather than change what's there. Because, if what we add is factual and is from legit source, then they have no basis for removing it, and I'm willing to argue it on the change page.

A few ideas about additions:
  • The QOL graph
  • The link to the IOM text, along with quotes from the text
  • Suicide being a leading cause of death, and why
  • OMF, list of researchers around the world, with credentials
  • Quotes from researchers
  • List of books, documentaries,
  • Advocacy efforts, why it's considered a social justice issue, ME organizations, copies of letters, youtube video of congressional hearings, etc.
  • The 2 annual demonstrations
  • Sites related to ME
Hell, let's overload the page with information! I'd also be willing to keep track of what items they attempt to change, and there's more of us than there are of "them" - not to mention we have a personal stake in this.

The thing is, all the efforts to undo misconceptions as a result of the PACE trial are of little use if the general public gets most of its information from Wikipedia and is led to believe this is a psychological issue.
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ

I'll look through these. And I don't at all intend to do a wholesale rewrite. I can't even keep my kitchen clean, LOL. I just intend to expand it, and include more evidence.
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
So, I did start reading earlier threads, and I want to address something.

I know that a lot of people don't really understand how Wikipedia works, including teachers.

Wikipedia is different from other knowledge sources because it's completely non-hierarchical: everyone and anyone can equally add and change information. There are no "powers that be" or "authorities" or higher-ups. It is absolutely and purely democratic and equal-opportunity. It doesn't matter if you're a 7 year old from Podunk USA or the head of the Mayo clinic - everyone is equal. There's no one "in charge" of an article or any information on it. It's entirely user-based. It's not about the "who", it's about the "what". Information itself is considered the authority - information that is well backed-up, accurately presented, and from respected and reputable sources.
 

Murph

:)
Messages
1,799
I know that a lot of people don't really understand how Wikipedia works, including teachers.

Wikipedia is different from other knowledge sources because it's completely non-hierarchical: everyone and anyone can equally add and change information.

This is true. No person has authority. But the people who know the rules have all the authority, and the rules for editing are far sterner than I realised when I first set out to edit the me/cfs page. Here's what I wish I'd realised:

wikipedia said:
For this reason, all biomedical information must be based on reliable, third-party published secondary sources, and must accurately reflect current knowledge.

Secondary sources are review articles, etc. So you can't use recent studies. A phase II trial certainly doesn't cut the mustard. Only meta-analyses and review articles. Unfortunately, the cochrane review is the biggest such example. Fane Mensah's recent review on the role of the immune system in me/cfs might count though, although it makes few unequivocal claims.

Hell, let's overload the page with information!

That is not going to be a winning strategy.
1. Guidelines demand concision. If you stuff it full of junk you make it easy for them to revert your edits.
2.The effort to delete another person's edit is a single click. You'll be worn down if you attempt to win by volume. Wikipedia is policed by a self-appointed set of guardians who are exceedingly rule oriented. Your passion is no match for their autism. You need to win by playing the game on Wikipedia's terms. Get extremely familiar with the rules.
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
Was inspired by this thread to try my luck with the German version today. Invested a lot of time and edited just some details backed with evidence and numbers... Every little detail was rejected. Wasn't even allowed to include Unrest in the section "films"! Or to mention Millions Missing in the section "campaigns" or that the WHO classified ME/CFS in 1969 or the economic burden or cite from the IOM report. Pure craziness, two people are guarding the article with their psychosocial view.
 

E.man

Senior Member
Messages
196
Location
Bega Valley , Australia
Was inspired by this thread to try my luck with the German version today. Invested a lot of time and edited just some details backed with evidence and numbers... Every little detail was rejected. Wasn't even allowed to include Unrest in the section "films"! Or to mention Millions Missing in the section "campaigns" or that the WHO classified ME/CFS in 1969 or the economic burden or cite from the IOM report. Pure craziness, two people are guarding the article with their psychosocial view.
Well that really sux.
 

Hajnalka

Senior Member
Messages
910
Location
Germany
It's completely ridiculous, it's not about facts or evidence. Checked the archive back to 2005 and everything not psychosocial gets rejected. The people guarding the article choose what they like, not what is backed by the best evidence.

E.g. the German article cites the IOM's report criticism of the term ME. I added one citation that the report also criticizes the term CFS - rejected. They really choose and distort reality. One section about militant patients has only one link that is from 1982. They also use a non-factual and very biased language, that clearly shows contempt.

When I asked why I wasn't allowed to include Unrest in the section films, I was told it's "irrelevant" and "not important enough". Millions Missing in the section public campaigns was rejected because "we are not your advertising company".
 

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
When I asked why I wasn't allowed to include Unrest in the section films, I was told it's "irrelevant" and "not important enough". Millions Missing in the section public campaigns was rejected because "we are not your advertising company".

That's interesting, @Nielk blogged on this issue.
https://relatingtome.net/2017/11/01/resisting-attempts-to-silence-pwme/

Here's a video from her article. Wikipedia is mentioned at 3:57.
In 2012, famed author Philip Roth tried to correct a major fact error about the inspiration behind one of his book characters cited on a Wikipedia page. But no matter how hard he tried Wikipedia's editors wouldn't allow it. They kept reverting the edits back to the false information.
When Roth finally reached a person at Wikipedia which was no easy task, and tried to find out what was going wrong, they told him he simply was not considered a credible source on himself.

 
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IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
It is worth reading the associated Talk page ( and it's archives) for the CFS page to gain an understanding of the situation regarding editing the page.

https://en.wikipedia.org/wiki/Talk:Chronic_fatigue_syndrome

At the end of that page,
Are There Any Editors Paid by the Disability Insurance Industry to Work on This ME/CFS Article?
As is well known in the ME/CFS world, it is greatly in the interests of the disability insurance industry to make ME/CFS look as if it were an "all in the mind" disorder caused by psychogenic or biopsychosocial factors, rather than a disease with organic biological causes. This is because disability insurance rules generally stipulate that disability due to biological disease is covered for lifelong disability support payments where necessary, but disability due to mental health disorders are not covered for lifelong support. Thus the insurance industry can save billions in disability payouts if they make it appear that ME/CFS is an "all in the mind" mental disorder, rather than the organic biologically-caused disease that most scientific biomedical researchers view it to be. Indeed, the psychiatrists who have most promoted the idea that ME/CFS is an "all in the mind" biopsychosocial condition — people like Simon Wessely, and Prof Peter White — have been paid by disability insurance companies for their work, in spite of the obvious conflict of interest.

Thus the fact that this article has a strong bias towards presenting ME/CFS as an biopsychosocial condition (a bias which is not supported by any science) suggests that some of the main editors here who are promoting the biopsychosocial view may be paid stooges for the disability insurance industry. So can people like Doc James, sciencewatcher and others here who have a pro-biopsychosocial stance categorically state that they are not being paid by the disability insurance industry, and are not receiving any form of benefit from this or any other industry or outside interests? There are several people who are persistent editors on this ME/CFS page, who work hard and tirelessly to make ME/CFS look as if it were a biopsychosocial illness.

Wikipedia does have many editors who are paid by corporate interests to manipulate articles; see here for example: Some People Get Paid a Lot of Money to Edit Wikipedia Pages. Wikipedia rules state that paid editors who receive compensation for their contributions to Wikipedia, either directly or indirectly, MUST disclose who is paying them to edit. So that is why I am asking the editors of this page who have a pro-biopsychosocial view of ME/CFS and a major interest in this article to declare whether or not they receive any form of payment, benefit or compensation for their work on this article. — Preceding unsigned comment added by 46.208.234.40 (talk) 01:49, 17 November 2017 (UTC)
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Wow, I had no idea... very informative article. This quote says it all...
“The encyclopedia that anyone who understands the norms, socializes him or herself, dodges the impersonal wall of semi-automated rejection and still wants to voluntarily contribute his or her time and energy can edit.”
Wonder how one take a something to the ARBCOM, mentioned in the article?
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
If you're referring to the Denmark study, you can't use this as it's primary research. I would review the wikipedia MEDRS guidelines before you get too deep into this.

Cool, thanks! This is the kind of thing that's not my forte. I welcome any other suggestions.

Also, I think a slow process is probably best, now that I think of it. Adding a little at a time so as not to potentially freak out any user
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
Was inspired by this thread to try my luck with the German version today. Invested a lot of time and edited just some details backed with evidence and numbers... Every little detail was rejected. Wasn't even allowed to include Unrest in the section "films"! Or to mention Millions Missing in the section "campaigns" or that the WHO classified ME/CFS in 1969 or the economic burden or cite from the IOM report. Pure craziness, two people are guarding the article with their psychosocial view.

!!! Was there any explanation on the change page?
 

gabriella17

Senior Member
Messages
165
Location
Phoenix, AZ
Wow. This is all pretty depressing, not to mention alarming. I actually got a pop-up when I tried to access W from my phone this morning, asking for donations. And I have donated multiple times in the past, because democratic dissemination of information is a cause I truly care about. I'm so disappointed.

So, before I go and make any changes, I'm going to do the research the issues you all have brought up. I'll read and watch the suggested sources.

Earlier this week, I was on a conference call with AZ's MEAction, regarding proposed areas to focus on. I just started getting involved with them, so I don't even have an email list yet, but I'm going to bring it up with them. I think this is an area that MEAction should be aware of, if not already.

I will also investigate ways to bring even more attention to this truly vile practice. This is the kind of shit I live for, lol.
 

Seven7

Seven
Messages
3,444
Location
USA
Nobody finds this kind of watchfulness bizarre? who is paying this people for this watchfulness.
I am with @gabriella17 We need control of the wikepedia page. Need to send some academics after the people behind the edit and expose them.