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@dave30th There's probably a few donors like me, who are holding out just to see if any matching campaigns get announced near the end like last year. I think I managed to either double or triple my donation last time :thumbup: Rest assured it'll be coming in before the end of the campaign.

Similar to the point Jonathan Edwards made, PACE receives focus for two reasons, its effect on government health policy and its share of research funding. It never ceases to baffle me how you could spend that much money trialling a treatment when a) we still need a ton of research on the cause...

Thanks for all the replies, I think Boom & Bust is interesting to think about. Based on what I've read, the entire psychiatric CFS causation model pretty much hinges on it. I'd be interested to see some academic skepticism directed at it, I can't see it holding up.

Yeah my carer who is 25 years older than me is much fitter. I've measured their HR for fun when I've had my equipment out and it's always better than mine.

Graded Exercise Therapy, at least in the UK, comes with the advice that 'Boom & Bust' cycles of activity are an obstacle to the rehabilitation of the MECFS patient. After a week of Vøgt retweets in my twitter feed, I thought it would be productive to explore an idea from psychiatry that might...

Speculatively, if an AFME advisor acted outside of their remit/authority to speak on behalf of the charity, that could be enough to justify the PACE author's claims of charity support. AFME can of course retroactively remove that support as improperly given (in the event that was the case) it's...

Thanks Clare. I think the question that follows would be, which Doctors/Researchers held AFME advisory positions at the time and would agreement from any singular person in such a position have been construed (Or quite possibly, misconstrued) as 'support from the charity'?

From the BPS perspective, the patient has adopted a maladaptive sickness role following the remission of a viral or similar temporarily disabling condition. Based on that belief, I guess they would assume that patients have an interest in evidence that 'legitimises the sickness role'. Of course...

Anyone can take that data set and run exactly the same calculations. There's nothing misleading about it. It's in an XLS sheet. You run the numbers against the original protocol, and they come out like that. The whole point of the reanalysis is presenting the argument that the PACE Trial...

I totally get that. I find sitting up straight both exhausting and painful. The majority of my time is spent in bed, lying back propped up on a few pillows. Otherwise it's gotta be the kind of chair/sofa I can do some quality slouching on. That concerns me too, I certainly can't see me being a...

Thanks Trish, that's a really comprehensive reply. I did actually get an OT assessment a few years back, I have everything else around the home, grab rails, perching stool, shower seat. Also I have a walking stick seat (though need a new one, it's a bit of a death trap) It's possible I could of...

After a recent bad relapse, I've come to the decision that I would like to try and apply for a wheelchair. I could of used one for a long time really, but pride gets in the way. There are probably 100s or even 1000s things I've missed over the years I could of gone to if I'd had the courage to...

Hi all, I'm writing this account of my recent crash, as I would like to compare notes with others. It started during the bad weather, something was falling down in my garden, so I pushed myself to try and fix it (which included lots of arms raised stuff). Like a fool, I had been unwell already...

I think Jonathan Edwards is right here to focus on what we do not know. To demonstrate the harm of GET beyond patient reports would require carefully put together long term data. I also think some of the harm is psychological and not objectively measurable. According to Geraghty's data, the...