Improving Wikipedia's references to ME/CFS

I meant as in the changes not being immediately reverted

I can also confidently say it was not @Alvin, due to cognitive dysfunction i can no longer think that complicated to read whats there now, change it in a coherent and flowing way and add references (or even figure out how to do all these things)

 

don't know if anyone has mentioned this but, when the wikipedia 'snippet' comes up on Google there is a feedback button.

"What do you think?
This is helpful
I don't like this
This is hateful, racist or offensive
This is vulgar or sexually explicit
This is harmful, dangerous or violent
This is misleading or inaccurate
Comments or suggestions?

The data you provide helps improve Google Search. Learn more
For a legal issue, make a legal removal request."

so I've just ticked the misleading or inaccurate and in comments put me-pedia.

just a thought

 

I've never noticed that @Slysaint. I have just checked duckduckgo and they also a feedback option.

 

I've sent many messages to Google, DuckDuckGo, Bing, and the worst of all, StartPage.



All I can say is I've been ignored. Perhaps if a ME/CFS organization wrote a letter, it would get noticed. Or a lawyer.

Edit: By the way, DuckDuckGo's feedback page is here: https://duckduckgo.com/feedback

 

Anybody made any attempt to update the page with the recent news about the Cochrane GET analysis having been, temporarily but hopefully permanently, withdrawn?

 

The Cochrane review doesn't actually seem to be offline yet.

 

Wiki sent me an email in Dec asking for a donation.


I replied with:

I'll donate $1,000 when Wiki stops perpetuating medical harm against ME patients.


Today Wiki replied:

Hi Scott,

Thank you for your email. I apologize for the delay in responding - it's a busy time for our small fundraising team.

Wikipedia is open, so anyone who wants to improve Wikipedia can contribute. Volunteer editors collaborate to write high quality articles without bias, and from this collaboration, neutrality arises from their many voices. Today, Wikipedia is maintained by a community of volunteer editors from around the world, more than 80,000 of whom contribute every month. There is no central editorial board on Wikipedia; all edits are made by individual volunteer editors who come from virtually all walks of life, backgrounds, and experiences.

Over the years, the Wikipedia community of volunteer editors have created policies and guidelines to ensure content on the site meets high editorial standards. For content to remain on Wikipedia it must be neutral, verifiable, and attributed to a reputable source. Wikipedia’s policies are overseen and upheld by volunteer editors and administrators-- a group of more senior, trusted editors, who are selected by the broader Wikipedia community and granted with certain oversight tools on the site.

There are a number of policies in place to prevent editors from “controlling” certain articles on Wikipedia or skewing information on behalf of special interests.

For example, the “ownership of articles” policy states: “No one, no matter how skilled, or of how high standing in the community, has the right to act as though they are the owner of a particular page.” Neutrality is also a key pillar of Wikipedia-- meaning that every article should retain a balanced version of the facts without taking any particular side. Editing pages on behalf of special interests, or with which you have a close affiliation with the subject of the article, is strongly discouraged. In fact, the Wikimedia Foundation’s Terms of Use prohibit undisclosed paid advocacy of any kind.

Also, all information added to Wikipedia must meet verifiability standards, meaning that all content added to Wikipedia is founded upon reliable, independent, secondary sources. Primary sources are generally deemed unacceptable to verify material on Wikipedia (as they would be in any other encyclopedia), as they often constitute original research which is prohibited by policy. On Wikipedia, verifiability is usually addressed through the use of citations in articles so that anyone is able to evaluate where information comes from Wikipedia.

Wikipedia volunteer editors have a variety of tools, policies, and bots at their disposal to enforce these policies and keep Wikipedia a neutral, reliable free knowledge resource for all. All edits made on Wikipedia are consistently reviewed by other editors. Wikipedia administrators are also granted oversight tools on the site to enforce policies and ensure that all content is consistent with Wikipedia policies and guidelines.

If an administrator has reason to believe someone is violating Wikipedia policy, they may issue blocks, delete articles, launch internal investigations, and otherwise work with other editors in a variety of ways to amend the issue. An example of such an internal inquiry is described on our blog here. This volunteer-led investigation led to the suspension of hundreds of Wikipedia accounts linked to undisclosed paid advocacy.

For more information on what keeps Wikipedia accurate, you can visit the Wikimedia blog, to read posts about this issue: this article and this one, for examples.

For further information, please see: https://en.wikipedia.org/wiki/Reliability_of_Wikipedia and http://blog.wikimedia.org/2012/08/0...ly-to-other-encyclopedias-in-three-languages/

Of course, Wikipedia is never finished. Not all articles are complete, and many still require more contributions. While it will always be a work in progress, Wikipedia’s open model is part of what makes it so great. It is through this open editorial process that Wikipedia is constantly growing and improving.

Please don't hesitate to get in touch should you require any further information.

Sincerely,

Seilo Inaba
Donor Services
The Wikimedia Foundation


I then replied with:

Hi Seilo,

Thank you for your response.

In spite of the process Wiki has in place, it has failed to prevent harmful information about Myalgic Encephalomyelitis (ME) from continuing to be disseminated in spite of many attempts by ME patients to correct the entry.

I encourage you to see this thread by ME patients about their futile efforts to deal with Wiki about ME: https://www.s4me.info/threads/is-th...-of-improving-the-me-cfs-wikipedia-page.2170/

Perhaps you would like to comment to the ME community on this thread?

Thank you,
Scott


I ain't holding my breath I'll get another response or that Wiki will actually come to this thread or they'll stop propagating medical harm against ME patients.

My $1,000 is safe.

 

That was great @ScottTriGuy, brilliant!

 

@ScottTriGuy Perhaps you need to explain to Seilo that is an administrator (Doc James) that is controlling the article in a biased way and has made controversial POV edits himself, with only some of them being challenged after heated debate in the talk page.

 

Thanks to anyone trying to improve things at wikipedia. It does look like a really broken system. I'd occasionally look at the talk pages, and see some really bright patients who clearly knew what they were talking about being ground down by idiots. The whole process looks pretty appalling to me.

 

Considering how bad it still is, I fear what it used to be.

It has a few good parts... kind of. But it definitely could be much worse.

 

If you Google wiki and Chronic Fatigue Syndrome the 8th in the list (after the MEA) is this thread. And it's on the first page. Well it is today anyway.

So this will raise awareness, even if the Wiki entry itself is dire.

I must admit I didn't know anything about how wiki was edited before I read this thread, so you are also educating readers about the inherent problems in Wiki.

 

The Rational Wiki entry is even worse. Lots of uncited claims, obvious partisan bias (and insults), and sources that wouldn't be accepted on Wikipedia (such as personal blogs/websites that aren't backed up elsewhere).

 

Yeah it is really terrible. Read it when I was having a bad day and it actually made me quite upset.

My limited interaction with the skeptic movement crossed over with CFS has not been good at all - bizarre that groups of so-called skeptics would seem to take information about CFS at face-value, that is, the BPS lines.

 

Yes, but most rationally minded people will note that it's total crap.

 

Not sure if this deserves it's own thread but the Wikipedia article for SEID is redirecting to CFS. I thought the whole point of SEID was to distance ourselves from the conflation with chronic fatigue and all the poor/fraudulent research that surrounds it. It's as if someone doesn't want ME or SEID to exist.

 

Not sure if it makes any difference but it's been like that since 2015, https://en.wikipedia.org/w/index.php?title=Systemic_exertion_intolerance_disease&action=history