Improving Wikipedia's references to ME/CFS

This is a topic I've been thinking about and discussing with friends for a little while, and I'd discarded it to the "pretty much a lost hope" pile of potential projects in my head, but today reexamined the idea based on an experience a friend had.

She was talking about how someone she knew watched Unrest, was very affected by it, googled the illness and obviously was confronted with the wikipedia page, which contains several heavy references to psychological treatment. This then caused a fairly stressful conversation between my friend and the person she knew.

For those who aren't aware of the politics of this - there are two users (docjames, science watcher) who retain a grip over the Wikipedia entry for this illness, removing any edits that add more focus to biomedical research and treatment, or are overly critical of the PACE trial.

The latter user is the owner of: https://www.mind-body-health.net and has also created several pseudonyms on Reddit and Phoenix Rising where he continues to peddle these kind of things and is laughably bad at concealing this fact.

Is there anything whatsoever that can be done here? The way that wikipedia editing works is that one has to build up a consistent bank of meaningful edits, so it's not enough to just wade into the page and start editing willy nilly. In fact, if you read this post, do not under any circumstances do this, as it'll make it much harder for quality edits to be made in future.

My hunch is that it's potentially too much stress for people to fight over this page - but I just thought I'd post here to see what people thought and also whether they'd had similar experiences when attempting to edit the page.

It's a shame, as due to SEO it's going to be most people's first contact with the illness upon googling, but I'm not really sure there's a feasible way forward here.

 

Is there no process for dealing with (potentially) biased editors?

 

This article is now a few years old and does not address the specific problem raised by this thread, but it is an interesting general background to some of the inherent biases in the way Wikipedia currently functions:

https://www.technologyreview.com/s/520446/the-decline-of-wikipedia/


The Decline of Wikipedia
The community that built the largest encyclopedia in history is shrinking, even as more people and Internet services depend on it than ever. Can it be revived, or is this the end of the Web’s idealistic era?

• by Tom Simonite
  
• October 22, 2013

 

I'm not sure actually - it seems like quite a grey area

 

Another background article from 2014 on the editorial problems with Wikipedia:

http://www.slate.com/articles/techn...rced_encyclopedia_has_become_a_rancorous.html


Encyclopedia Frown
Wikipedia is amazing. But it’s become a rancorous, sexist, elitist, stupidly bureaucratic mess.
By David Auerbach

 

On a related note, there is a moderately long thread from 2016 about this topic on the "other" forum in the members only section.

Just search message titles for "Wikipedia".

ETA: There is also another thread in the public section of the "other" forum that is more current. Unsure if links are allowed here, but they should be easy to find.

 

Wikipedia itself has the following article, that covers this problem, but does not give a clear idea about how to actually deal with it:

https://en.m.wikipedia.org/wiki/Criticism_of_Wikipedia

 

@Dr Carrot Your comment above leads into something I've wondered about. I usually Google "myalgic encephalomyelitis" every morning. In the past, most often the top two "hits" under the "All" category were the the following:

https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/
http://www.name-us.org/

Neither is perfect, of course. I question the "rare diseases" designation for the first website, and find the second website more sensational than I'd prefer. Nevertheless, I haven't been particularly concerned should those searching about the illness read the information found on these sites. In fact, I have forwarded the link to Lenny Jason's website to friends and family. I consider it an easy and understandable read for those who know little about the illness, and who are disinclined to spend much time on the subject.

More recently, though, Wikipedia and other questionable websites have appeared at the top of my search lists. At times, it seemed to me this happened in accordance with accurate and supportive articles and research being published. My "spidey senses" have tingled with thoughts of conspiracy to discredit the truth.

I am aware that some websites pay Google to appear at the top of search lists. Otherwise, I believe that user interest influences where (how near the top) particular articles and websites appear. In that regard, I have wondered if patients regularly "clicking on" preferred websites (eg. a daily routine) would help the most accurate information remain at, or near, the top of Google search lists.

Is this something we could consider?

 

This is somewhat covered on this thread, including my reply
https://www.s4me.info/threads/curious-about-reddit.1910/

 

Hi @Dr Carrot,

I just came out of the Wikipedia rabbit hole. I was really sucked into it with daily discussions and fights and after several weeks decided that it's not an efficient use of my energy and just too upsetting. It was me alone (one other person later joined me) against a gang of BPS-people.

The amount I've written in the discussions - I could have published several articles or organized an Unrest screening or done a lot of other constructive stuff with that time and energy. I'm torn because the Wikipedia article is the most important article and everybody who hears about ME or CFS for the first time will check it out, but on the other hand I can do so much more in other areas with the same amount of energy (and am not well enough for the daily BPS-bullying and insults and it's enraging that it doesn't matter how much proof you have). I heard every kind of insult, I was even suspected to be a sock puppet and all I did was present facts and reputable sources.

The frustrating thing is, that it's not about facts. I'm good at researching and I know what is an appropriate source and what isn't and presented all the facts and engaged in discussions. But facts don't count. And it's not a democracy. It's about who's been there the longest time and who has the most friends like on a schoolyard and different people have different rights and it's totally untransparent. It's a strange little subculture and its own world. There are people who have been there daily for a decade and the old-timers all know each other and stick together.

My plan was to do one tiny little edit after the other so that they barely notice that I'm rewriting their article. But no chance, even if you change one word, every single edit gets reverted. I believe I made really sensible recommendations - I didn't try to delete CBT and GET, I just added tiny unproblematic stuff (or what I naively believed to be unproblematic) as a start. It's not about what is written it's purely about who writes it. I even took the time to read into all the rules and abbreviations and slang and tried to work with the system and normally can be quite convincing. But there are BPS-people guarding the article and reverting routinely any edit. They don't care about your proof or your sources. We worked with the system and requested a "second opinion" - that worked one time but not the second time.

I'm talking about the German Wikipedia article by the way. But I think the problems are universal. I was so sucked into the Wikipedia ME-world, I even read the English/American ME Wikipedia archive. The problems seem to be the same. I'd even say that there are better chances to edit the English version. I've seen Doc James sometimes say ok, if you have the proof. It's just important that with the English Wikipedia only secondary sources are allowed (reviews like IOM or Cochrane) and not primary sources like a study. If you're interested I'd recommend to check out the discussion archives to get an impression.

To change something it would be a longterm project.
1. You need to have a history of edits in other topics and articles (that was most suspicious about me - and they definitely check your editing history out)
2. You need to be a longterm member (several years)
3. You need to learn all the Wikipedia-specific rules and abbreviations

It would also help to have other people who back you up. I was alone against a gang of BPSers so they were always in the majority (it's not a majority vote, but it might still help, if you know someone else with a long editing history etc. who's on your side).

I invested weeks of daily intense work and got out three tiny edits I was allowed in the end. I reached my limit when I was allowed to do a tiny edit and was so happy and proud but someone else was so annoyed that he insulted me and deleted a whole section as revenge - and that was ok, because he was a longtime editor and no one even commented on it.

Good luck!

 

Probably a daft suggestion, but is it possible to start a new page under a different name, like Ramsey's Disease for instance? So the ME/CFS page would become the BPS nonsense page, but the Ramsey's Disease page is entirely based on good quality science.

 

Everything is controlled on Wikipedia. I've seen editors deleting whole new articles with one click if they think the new topic is not relevant enough for Wikipedia (what can be very subjective). You would need the "permission" to start a new article and then it would be controlled again by long-time editors.

 

It sounds like Wikipedia is a lost cause. It's a good job it's renowned for being unreliable.
Do we have a mention there yet? A sign post to S4ME from the page would be better than nothing and new patients are going to be looking for online support further than a wiki page can give.

 

Worth a try, although the "editors" of the CFS page might try to get it removed as "redundant," or something like that.

Something that occurred to me would be to create a page that lists and provides links to various ME/CFS organizations and charities. This is something that Wikipedia's CFS page does not do, so it would be hard for them to make the case that it was duplicative.

SolveCFS has its own Wikipedia page, but I'm not sure how many other organizations and charities do.

The object would be to create a Wikipedia page that provides a list of links to better information than Wikipedia's own CFS page has, under the guise that it is simply a listing of ME/CFS related organizations.

 

That sounds workable and would actually be helpful to new patients and their families.

 

I've tried to include several links in the German Wikipedia page and was informed that "Wikipedia is not a self-help-group". To include a link to s4ME would be very difficult if not impossible I guess. Can't remember if there are links to organizations in the English version (it's not allowed to link to organizations or forums in the German version). It's not even possible to edit a comma without permission - a link is a huge issue in the world of Wikipedia. It took me weeks of daily fighting until I was allowed to include one single link (Unrest) and someone else deleted a section as revenge. I wasn't allowed to link to Millions missing in the campaign section for example or to update links.

 

is there at least a reference to me-pedia, (not necessarily a link) or is that not allowed either?

(similarly please see also my thread here https://www.s4me.info/threads/psychology-wiki-needs-updating.2145/)

 

Dear god, i'm glad we know this but i wish you didn't have to suffer for this knowledge
Perhaps a change in tactics, do we know anyone who would be willing to write an article on a well trafficked website exposing this to the public consciousness?
Or target SEO so that another page comes in above wikipedia in search results?