War at Wikipedia

[Dolphin]

While I applaud your desire to give charitably, Tom, and the comment that you made to Wiki re their CFS coverage, personally I absolutely will not use Wikipedia anymore. Prior to the CFS issues, I found a few errors on other Wiki pages, but had continued to use the site, just keeping in mind that it is not always entirely accurate. However, after I saw waht they were writing re CFS and heard about the attempts made by patients and doctors to correct the info (and the subsequent results), I decided to boycott the site. Too many people take Wikipedia as absolute fact and I will not support anything that is helping to spread bad info about us to so many people.....esp when they remain unrepentant.

Thanks.
I can certainly understand where you are coming from also and in most occasions in my life, if GET and CBT based on GET (or other psychobabble) is promoted for ME/CFS in an inaccurate manner, the person/institution/whatever gets a major black mark for in my eyes (as Wiki does to an extent in this case)

 

[Knackered]

Wikipedia.

I've noticed there's a lot of misinformation on Wikipedia, anyone can edit articles so I wonder whether we should change articles that represent us incorrectly.

For example the XMRV article states:

Researchers in the United Kingdom reported that no XMRV was detected in a follow-up study; they concluded, "we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of CFS, at least in the U.K."[8] No association between XMRV infection and CFS was observed in another UK study, either by PCR or by serology.[9]

And makes no reference to the WPI statement regarding different methods used to detect the virus. There are other articles like this too, maybe we could post links to the articles about our illness that aren't written as they should be so we can edit them so they represent us and our illness correctly.

 

[_Kim_]

Have you seen the War at Wikipedia thread?

 

[Carrigon]

Is this still going on? They refused to remove the bogus info on actress Maren Jensen. Someone had written that she had "recovered" from CFIDS/ME. She never did. The source I had said she may be dead now. But there was never one shred of proof she recovered. Like anyone can put anything they want in there and the people who are in charge at Wikipedia do as they please.

 

[Angela Kennedy]

People may or may not be aware, but this is what happened to me at wikipedia:

http://tech.groups.yahoo.com/group/APK-PAPERS/message/17

 

[Adam]

Hi Angela

I read your correspondence with Kings College. I think you are very brave and determined. I hope one day you get some redress. In the meantime I wish you and your daughter well.

Perhaps one day someone will write our story. If they do, your battle with Wikipedia and the issue with Simon Wessely over defamation with warrant more than just a mention.

kind regards

Adam