Search results

I've never been enthused by Watson's involvement with OMF tbh, and I suspected... edit: thought I'd remove unfounded speculations.

I wonder if the hype and media push around this research could relate to the REF2021 process, and KCL's desire to be able to present their CFS research as more than just CBT/GET?

Sure - ideally we'd be able to find out enough about the individuals to let us do that. But it really does seem like UK medicine has been unusually terrible with ME/CFS for a long time, that a lot of prejudices have seeped into UK medical culture, and that the people in positions of authority...

Thanks for that @Peter Trewhitt - I really should have started doing that myself. I had a very vague memory of reading stuff I didn't think was good from Christopher Eccleston. A quick google showed him promoting Wessely, Knoop & PACE in a chapter on CFS...

Doesn't anyone else get a pang of fear that it has been announced Wessely has been appointed to the House of Lords every time this thread is bumped?

Probably what matters most to us is the caliber of the individuals with power over the group. If the people in charge had a history of standing up to powerful figures and challenging poor quality work that served the interests of researchers, that would be good news regardless of the label...

That sounds terrible. Hazel O'Dowd and SEE ME... ffs.

I didn't know Phil was on their board (or maybe I did, and just forgot) - no offense Phil!

In addition to the other problems people have noted to them, and related, is that I just don't think the people at Action for ME are competent. I'd assume that they're well meaning, but easily manipulated by those who have other priorities than improving life for PwME. Even their priorities that...

I wonder if the unusual patients turning up at KCL has had a wider impact on research from Wessely/Chalder over the years?

Don't most people respond to painful stimuli more when they're exhausted? I thought that it used to before falling ill, eg: stubbing my toe when run-down would seem to hurt more than at other times.

Dump for me. I think that I could be using childhood slang that's thirty years out of date though. In the UK 'dumb' still has some associations with people who are unable to talk, although the US use of it is becoming more widespread.

Sadly, there are still too many dump ME/CFS papers from Crawley & co to be able to keep up with.

The references for that were [7,44–46], which didn't look to be promoting CBT/GET... I'm not sure about the coenzyme Q10 stuff either though: 7) Scott JT, Semple MG. Ebola virus disease sequelae: a challenge that is not going away [Internet]. The Lancet Infectious Diseases. 2017. pp. 470–471...

I had been wondering if researchers looking at the ebola aftermath might turn up things that might relate to to ME/CFS. I didn't see a reference to CBT/GET. Maybe there's a growing awareness of the problems with these approaches?

Wasn't Lloyd on some TV program where he was basically calling for this process to avoid re-doing the guidelines, and instead call for more widespread training? I think I can be more pessimistic than Tuller in my reading of documents like these (maybe I spend too much time comparing them to...

A Tuller post on Christmas day? We must have been really good this year for Santa to work such wonders! I think I'll save this for when I open the rest of my presents.

Yes, but it often seems to get misinterpreted.

The 'not relieved by rest' thing is on the current CDC CFS page says: https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html Is it from a part of the Fukuda criteria that keeps being misunderstood?: "is not substantially alleviated by rest" https://me-pedia.org/wiki/Fukuda_criteria

Thanks for the summary. Interesting. It would be interesting to know how he she justified that claim.