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North Bristol trust are BACME. That's the problem with AFME, at every turn PACE collaboration, choice of medical advisor alistair miller previous, sister of ayme close with Crawley, working with hazel o dowd, this ... they're teaming up with the establishment, BPS lot. They re in Geneva so get...

One comfort is those poor shell shocked traumatised soldiers never had to have Wessely as their expert at the time. I wonder what GWS veterans feel, do we have any connections with them in the uk?

***** *** ******. Shell shock doesn't relate to GWS or FND or CFS which no doubt will be implied somewhere. Weasel still manipulating. I'd love to see these

First page for me contains possibly questionable content. The actual part patients can fill in might however be very helpful. As it's available as pdf and word document the first page can be discarded if you wish. I'd be interested in any ideas that could substitute it. I personally would have...

This study was funded 2012, started 2013 but I don't remember seeing a final paper published within th results, does anyone? Thank you. https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/sws-and-daytime-functioning-in-chronic-fatigue-syndrome-saffe/

Just to point out Sonya chowdhury started attending WHO stuff at Geneva 2-3 -4 (poor memory) years ago. I can't understand the long post above to know when fresh concerns over WHO started. AFME might have problems by not really recognising any difference between CFS and ME.

Merged thread

Thanks @Trish

Just is it metabolic? That might not even be the right terminology, metabolomic might be. Other explanations of weakness to me could be being impaired neuro signalling, other causes of cell sickness, the brain getting inappropriate signals or over loaded or wrongly reacting with excessive...

Hi all I've always struggled relating our fatigue and slowness or inability to recover to healthy people because our issues isn't their tiredness nor do we recover as they do with rest. However watching (as us bedridden people do in boredom with mush brains) those "stranded on island survival"...

Action for ME are also doing this ME awareness week https://www.actionforme.org.uk/news/invite-your-msp-to-scottish-parliament-event/ "Gail Ross MSP is hosting an event in the Scottish Parliament during M.E. Awareness Week, celebrating the patients and professionals working to improve the...

Sure, I'd forgotten those two ongoing studies too. I just meant the issue is as much what isn't being done as what is.

I suspect the Bristol shopping study is low cost and funded by the uni psychological department along with many other useless studies across different things, something their academics do in their research capacity. That to me isn't our problem in the way MRC NIHR pumping huge funds into...

The radio interview was Good but I personally don't see the point of awareness raising (again ) if the people who make a difference in our lives, the NHS, the royal college and medical schools and the funding bodies are unaffected and not put upon to change. John actually said at the end it's...

Where is that funding figure from. ? What is the #MM campaign Bristol, or anywhere in uk asking for this year? In America there were clear demands everyone was making across the board. In uk it seems to have been more awareness raising but I don't think it's actually achieved anything to day...

It is just bullshit. The model is wrong, it's dangerous to assume anything, how does it haveany place in the science world why is this not seem as the baloney it is. I hadn't read this paper but have read many others on illness CBT claims to treat where medicine can't, ugh. At least they...

I personally can't understand why anyone would think that CBT should help with fatigue caused by cancer or aggressive treatment. Is this The assumption the fatigue can be behavioured away or is caused by psychological factors? If it is I think it's wrong. It seems a rotten platform for...

So true. Thanks for the "scientific" CSS stuff. Here's the peter white etc article where they talk about retraining the brain to accept activity, I think css is part of the idea https://www.theguardian.com/society/2016/feb/15/it-was-like-being-buried-alive-victim-of-chronic-fatigue-syndrome...

Yes I think Dr Chaudhuri gave a talk saying that Also the dorsal root ganglionitis found- outside the SC - could be causing an amplification of sensation and signals causing the brain to respond with feeling of fatigue. That all sounds plausible but we have not had enough research. The CSS...