Terrible Wikipedia article on MECFS! (CBT, etc)

[gabriella17]

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.

Yes! Wouldn't it be cool if some of the Anonymous community were to get involved, to expose who is getting paid?
If enough people and organizations got involved, calling this stuff out on social media?

 

[Murph]

Yes! Wouldn't it be cool if some of the Anonymous community were to get involved, to expose who is getting paid?
If enough people and organizations got involved, calling this stuff out on social media?

Nobody who is getting paid would be so diligent. Employees are slack!

People driven by passion act like this. Most Wkipedia pages are the same - they have defenders with personal and mental problems who feel a profound sense of ownership and delete other people's edits.

 

[gabriella17]

Excellent article about a terrific online community falling into dispute and bickering about policy decisions. (Felt, somehow, as if I'd seen the episode before.... )

One ray of hope I'm finding so far, in reading this article:

"The main source of those problems is not mysterious. The loose collective running the site today, estimated to be 90 percent male, operates a crushing bureaucracy with an often abrasive atmosphere that deters newcomers who might increase participation in Wikipedia and broaden its coverage."

"She (Sue Gardner) and Wikipedia’s founder, Jimmy Wales, say the project needs to attract a new crowd to make progress. “The biggest issue is editor diversity,” says Wales. He hopes to “grow the number of editors in topics that need work.”
​

Earlier today, I also came across this from their Teahouse page:

"Although the project will welcome all good faith new users, women are a particular target population. By creating a social-learning experience that helps integrate women into the community and support them in getting past barriers to participation, we hope to impact the gender gap."
​

I'm going to find ways to contact established editors who are working on this project, and let them know that there is a whole slew of new potential editors, the majority of whom are women, who have tried and failed and given up on creating quality content for an important issue, and whose efforts have been thwarted by those very same types of males they reference. My apologies to males reading this, I'm not dissing, just finding ways for us to have the most leverage and support for our efforts.

Of course, in order to do this, we'll need to put together a list of specific instances we've had problems with.

Blah, I'm starting to lose steam... I'm going to stop for now and get back to this.

P.S. I think I didn't correctly quote from the users who posted the article, will correct later, thanks for your patience!

​

 

[gabriella17]

Nobody who is getting paid would be so diligent. Employees are slack!

People driven by passion act like this. Most Wkipedia pages are the same - they have defenders with personal and mental problems who feel a profound sense of ownership and delete other people's edits.

Yeah, I didn't mean people getting paid as in employees. I meant that Anonymous, who are unpaid, would be great at sniffing out which Wikipedia editors are paid by insurance companies to control the information on the pages.

So, calling all Anonymous members with ME (and other hackers, investigators, detectives, etc)... get on this thing!

 

[Seven7]

Yes! Wouldn't it be cool if some of the Anonymous community were to get involved, to expose who is getting paid?
If enough people and organizations got involved, calling this stuff out on social media?

I asked David Tuller let’s hope he will dig into it.

 

[Hajnalka]

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

Nope! Just non-sensical non-answers, I imagine it's like trying to discuss evidence with the PACE authors.

Absolutely every tiny details gets reverted back (within minutes!) by one click without comment. Entered the discussion page to ask for reasons and talk about evidence but the questions and facts are ignored.

Note that I didn't try to challenge the sections on the big stuff like PACE, CBT, GET etc. I only wanted to add tiny details.

There is so much craziness on the Wiki page that I could write for hours, so I'll just stop. It's definitely not possible to discuss facts or evidence or anything with the "guard".

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.

I think this was the original idea, but that it has changed. There are people with more powers, a list of the official positions is on the Wikipedia help pages. It doesn't matter how accurate and well-backed up your information is, there's a person with admin-powers and a psycho-social view that guards the article and is not willing to answer questions or acknowledge evidence. There are also people who seem to live on the site and say they've been there daily for over a decade who back each other decisions. My impression is that the "who" definitely matters.

At least on the controversial pages (heard the same from Wiki pages about politics). In contrast I was able to add two sentences about ME on Ron David's German page without problems.

 

[IThinkImTurningJapanese]

And the beat goes on,

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

The reason we've suddenly got this rash of lunatic fringe conspiracy theorists is due to a round of canvassing on Phoenix Rising. --sciencewatcher (talk) 22:59, 18 November 2017 (UTC)


sciencewatcher, you have not yet answered the question of whether you receive money or any other form of benefit for your work on this article. And neither so far has Doc James; he says on his user page that he does not receive money for his work on Wikipedia, but there are other non-pecuniary ways to receive benefit. So a clear statement would be appreciated.
And by the way, if you are that naive to think that biopsychosocial notions of disease are all pure and genuine science, and have been oblivious to the fact that biopsychosocial departments in universities have been funded and paid for by the disability insurance industry (details of which I can provide on request) in order to try to make expensive-to-support organic diseases look as if they are partially psychogenic (which as explained earlier saves insurance companies billions), then one wonders whether you should be engaging in such responsible work as Wikipedia Medical editing. Of course the Internet is abound with innumerable crackpot conspiracy theories, and the innumerable halfwits who subscribe to them. However, that's no excuse for naivety about the way corporate agendas can and do manipulate science, as well as influence government policy.
But it's not clear whether you are just a little naive, or whether you know full well how the disability insurance industry are promoting biopsychosocial ideas of disease, because you are receiving payment for such promotion. That's why a clear statement from you and others here regarding whether you receive compensation or other forms of benefit for your work on this article would help clear things up. — Preceding unsigned comment added by 46.208.234.40 (talk) 02:03, 19 November 2017 (UTC)

 

[Art Vandelay]

sciencewatcher, you have not yet answered the question of whether you receive money or any other form of benefit for your work on this article.

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

It appears 'sciencewatcher' has a conflict of interest as he apparently has a book outlining his pseudo-scientific view on CFS to sell:

https://www.amazon.com/Mind-Body-Health-Stress-Tolerance-Jameson/dp/0595295908

More here.

 

[Hajnalka]

I'm not even allowed to add PEM. Was told it's the same as fatigue and that the symptom doesn't exist in the CCC! 4 days of work, a lot of explaining and listing facts and sources on the talk page - 0 edits were accepted. One person decides everything and is not interested in facts, reverts without comment and doesn't even respond on the talk page most of the time.

I don't get how this person can hold an article hostage and ignore facts (like PEM in CCC), is there one main editor for every article who's allowed to decide everything? Is there a hidden hierarchy? Searched the help sites but couldn't find answers.

Edit: This guy even invented a new term: CFS is now CES (acronym for chronic tiredness syndrome). This term doesn't exist in German or anywhere in the literature, it's an invention. I pointed out the Wikipedia rules that introducing of new terms isn't allowed and listet sources that the term isn't known on Google, Wikipedia, Google Scholar, pubmed - doesn't help. One example of many, I have to step back, this is driving me crazy.

 

[IThinkImTurningJapanese]

I'm not even allowed to add PEM. Was told it's the same as fatigue and that the symptom doesn't exist in the CCC! 4 days of work, a lot of explaining and listing facts and sources on the talk page - 0 edits were accepted. One person decides everything and is not interested in facts, reverts without comment and doesn't even respond on the talk page most of the time.

If someone wants to believe in GET, PEM would be much more than just a simple annoyance.

One example of many, I have to step back, this is driving me crazy.

Please, do take care of yourself. This issue may take some time to resolve, but make no mistake about it, it will be resolved.

 

[andyguitar]

I have 2 points to make: 1) The Wiki page is never going to be much good as it presents CFS and ME as being the same illness. There should be separate pages for each. 2) If these illnesses are, in many cases, the result of an adverse reaction to prescribed and over the counter medicines who would benefit from running a disinformation campaign?

 

[Hajnalka]

I was able add 2 sentences about ME, the End ME/CFS Project. the Stanford CFS Research Center and the OMF on the German Wikipedia page of Ron Davis. I had a look and e.g. the US-site of Ian Lipkin doesn't mention ME: https://en.wikipedia.org/wiki/W._Ian_Lipkin
This might be another idea to spread a tiny bit awareness about ME on Wikipedia - to add ME to pages with famous biomedical researchers, the winners of the NIH grants etc. I can't do it, we don't have pages on them on the German Wikipedia (apart from Ron Davis) and my English is not good enough to edit English sites. These pages do not seem to be guarded by people with a strong ideology, like the Wikipedia CFS site, so it's a one-minute-effort.

 

[halcyon]

1) The Wiki page is never going to be much good as it presents CFS and ME as being the same illness. There should be separate pages for each.

The attempts to do this have been vehemently opposed and shut down by the usual antagonist editors. If I recall, the last patient that fought hard against this was banned.

 

[mission impossible]

I am so glad this thread started and gabriella I am with you.

I don't care if there are other watchers who keep changing it, we as a team are more motivated and stronger than anyone else out there will ever be, if we don't give up, then sooner or later they will, we will always win in the end.

I read the Wikipedia ME/CFS article only couple weeks ago and I have to say it has been on my mind alot since, and I thought I was going to have to try and edit it alone.... so I welcome this thread.
My first impression of the article, becuase when I read it a couple of years back and I was at that time actually not too bad, with mentions of CPet 1 and 2 in the pathophysiology section back then, but now it feels like the everthing any good has been twisted and skewed and I thought, Oh oh, the British Pscyhiatrist brigade have been tampering here was my first impresion, it is all tainted now with a pscyh bias at every section.

For example the last paragraph of CAUSES section reads: "People with CFS and their relatives tend to attribute their illness to physical causes (such as a virus or pollution) rather than to psychological causes.[7][52] Such attributions are associated with increased symptoms and impairment, and worse outcomes over time.[7]" by wessley et al.

But none of this is based on any scientific fact, it is just a theory a couple of pscychiatrists conjered up out of thin air and have tried to prove this theory by the PACE trial, and they have completely failed. ( now that the there had been a re-analysis the data.) Therer is no way they can get away with saying that on Wikipedia as if it is scientific fact. when it plainly is not.

So lets change that!

I think it is important Wikipedia, because friends, families, even health "professionals".... will read this when they google ME/CFS. I had physio over the last month and the ongoing battle to educate her after she has read the Wiki article is too much to bear much energy to do, and it does the treatment you get too. Nope no good at all, I'm not putting up with this.

Lets form a team, I can't do much as am severe, but I can do a little, and in any case it was getting to the point where ai was going to have to do it alone, so this is far better!

 

[c31]

Looking at the edits of one of the editors is very interesting - his edits consist of reverting and undoing edits on CFS, Fibro and Gulf war syndrome. Does not appear to have made any actual contributions.
https://xtools.wmflabs.org/ec/en.wikipedia.org/Sciencewatcher#top-edited-pages

 

[andyguitar]

Good on you all for trying to get Wiki sorted. One thing in your favour is that Wiki is no longer seen by everyone as the holy gail of information. Lots of errors and dodgy info on it. I'm sorry to say that the phenomeneon of fake news is spreading everywhere.

 

[HowToEscape?]

And this explains why scholars in all fields prohibit the use of Wikipedia as a source. You can’t even use it for an undergraduate paper, at least not unless you have a politically correct professor who considers any source that agrees with their views to be correct.

Wikipedia is simply whatever a crowd happens to say about something, mediated by what those in control of Wikipedia permit the crowd to say. People who have some personal axe to grind on the topic are motivated to contribute while people who are interested in pure scholarship are not. By its structure it can never be a reliable substitute for an encyclopedia, but it can be free and entertaining.
In that way it’s like pretty much everything on the current Internet.

 

[andyguitar]

Well Said

 

[halcyon]

It appears 'sciencewatcher' has a conflict of interest as he apparently has a book outlining his pseudo-scientific view on CFS to sell:

https://www.amazon.com/Mind-Body-Health-Stress-Tolerance-Jameson/dp/0595295908

More here.

Kudos to whoever tried bringing this to the attention of wikipedia, unfortunately it was unfairly shutdown as is to be expected. Relevant reading here and here. Here we see now a third (british) Wikipedia admin, JzG, who clearly has a bias against ME and ME patients:

Insistence on the term "myalgic encephalomyelitis" automatically marks you out as one of the warring parties. Chronic Fatigue Syndrome is a 100% medically accurate and value-neutral term, unless you are entirely devoted to the belief that it is encepathomyelitis and cannot possibly be anything else, in which case you are not basing your belief on the evidence. I am not aware of any evidence that this is objectively proven to be a form of encephalomyelitis (feel free to fill a gap in my knowledge there). The use of pejoratives like "all in the mind" and "psychogenic" is profoundly unhelpful. I don't know anyone who believes that. All we know is that (a) nobody actually knows what the actual aetiology is and (b) some CBT techniques appear to help. That's not a surprise: self-reinforcing cycles are a problem in any disorder that either causes or is caused or is exacerbated by mental state. I've had PTSD, I have experienced this first hand. Oh, we know one more thing: there are some people, a minority, for whom the mere suggestion that the condition has any psychological component whatsoever is utterly unacceptable, to the point that they will attack anybody who even thinks about trying CBT as part of palliative treatment. I trust you are not one of those people. Fellow admins can look at the deleted history of Simon Wessely (edit | talk | history | links | watch | logs | views) to see what I mean. Guy(Help!) 22:14, 21 November 2017 (UTC)