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They're just guided by their trustees. They're currently asking for applications from ME patients to replace some of their trustees: https://www.s4me.info/threads/action-for-me-looking-for-new-trustees-with-m-e.3817/#post-67828

The mention is only short, but I thought it might still be of interest. It's not an ideal summary imo, but still good to have more mentions of the PACE scandal around the place...

*bump* while things are slow over the weekend. Go S4ME geniuses, go!

I'd previously drawn attention to this section in a book from Jonh Bancroft, a researcher who'd promoted aversion therapy for 'deviant' sexuality. There are aspects of the mentality which remind me of certain biopsychosocial CFS researchers, and it mentions working with Gelder and Marks (Marks...

So QMUL were meant to be providing oversight for the research, but they don't know how much it cost or who paid for it?

It's the trustees that have the power, and they're currently looking for new ones, so it would be good to get people who are as well informed as possible in there, even if it might involve some frustrating meetings. https://www.actionforme.org.uk/about-us/working-and-volunteering-for-us/ "As...

From the job description:

Sounds like good news. Congratulations to all who worked to draw attention to this problem.

That the WHO classification of ME causes White and insurance companies problems by making it harder to turn down patients claims is the key things that they've done. From White's presentation to Swiss Re (now deleted from their website): I can see how Action for ME could be manipulated into...

Whenever I re-read the 'unscientific and personal attacks' stuff it makes my blood boil. Shameful stuff from Lloyd, Van der Meer and the journal. So unfair you'd have to even consider that. It just shows how effectively we've been stigmatised. IMO so long as what's been posted is completely...

Still the most read article in the journal it seems, just ahead of the Wilshire reanalysis of PACE recovery outcomes: https://www.tandfonline.com/doi/full/10.1080/21641846.2016.1160598

That is outrageous.

That's weird. It has been taken off-line. It's been archived here: https://web.archive.org/web/20180423154806/http://www.bath.ac.uk/campaigns/volunteer-for-research-investigating-chronic-fatigue-syndrome/

It's fine for them. It's only if you're an ME patient criticising Chalder's work that every possible opportunity will be taken to try to portray you as stigmatising mental health problems.

Generally, it's not the person whose behaviour is being judged that gets to decide whether they're a part of a scandal or not. It's like Wessely's “OK folks, nothing to see here, move along please.” Who do they think they're fooling?

With good news, like New York State’s Revamped Website, I feel like I can really under-appreciate it until I see it in one of Tuller's blogs.

Tuller looks at some of the annoying and unjustified claims Andrew Lloyd has made about the PACE trial, and those pointing out problems with it. http://www.virology.ws/2018/04/24/trial-by-error-andrew-lloyds-past-endorsement-of-pace/ Warning: probably not ideal reading before bed. It's got me...

Sounds good. Thanks for the link and the summary.

Edward Shorter used to talk about how CFS was again going out of 'fashion' at the end of the 90s, as it became viewed as 'psychological'. Instead, we just ended up with twenty years of patients being stigmatised and mistreated. These Norwegians are twenty years late to a bad idea, but still...

Excellent news. Thanks to all who donated.