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Interesting info!

Thick, brushed-cotton pyjama trousers plus a long-sleeved cotton t-shirt. My problem is starting out at the right temperature, falling asleep, then waking up cold, so I think if I piled more clothes on, I'd have to chuck more bedding off to begin with - and then I'd fall asleep and wake up too...

I quite often wake up at night after a few hours' sleep because I'm too cold (especially at the moment). The solution doesn't seem to be to pile on more blankets because I'd be too hot to start with. I'd rather go to sleep and stay a comfortable temperature all night and not wake up at all...

Thanks! I wish the NIH would be clearer about it, if only to send a message that they're actually paying attention to and acting on feedback, which would make them look good and show that they welcome high-quality submissions from patients.

I'm having trouble reading at the mo and can't tell whether the NIH have now dropped the Chalder scale (they've just given an update on what they're doing but I can't read it).

This is great, Gary. Patients' inability to get a platform where they (and the clinicians and scientists who are PACE experts, such as David Tuller) can criticise PACE and press the PACE investigators on the hard questions has really hurt us. There's a huge imbalance in power. I'm so pleased...

Update here (22 Feb 2018): https://solvecfs.org/2016-ramsay-research-team-1-update/ Includes this (broken up for readability]:

I easily look ten years younger than my age but I've spent most of the past thirty bedbound or housebound so I assume it's lack of sun exposure.

Good for them! :thumbup:

Thank you for being understanding, Gary. :) Yes, let's let that new day dawn...

I don't think anyone posted this link to Gary's five-minute post-radio YouTube message: https://twitter.com/GaryBurgessITV/status/968897850561220608

Welcome, @Gary Burgess! Terrific job in getting that big slot on R5L. One of the big problems that we've had is that the UK media has seemed to be in the grip of a psychiatric cabal that wants to promote CBT/GET on the basis of bad science, and that it's hard to break through their grip on the...

It's a huge problem that the people who might want to speak out, daren't speak out, for fear, presumably, of losing their funding. I'd like to see other retired UK medical scientists like yourself, Jonathan, writing open letters and articles about PACE, and the use of open-label methods with...

David is on the forum as @dave30th.

That's great, because lugging a load of shoes about is beyond most PWME, I'd imagine.

@Robert 1973 or @Andy, could this be added to the calendar, please?

Unless we put the fire out in Pudding Lane, we'll be dead and won't be able to help fight the fire in the rest of London... But maybe I just broke the elastic on that analogy. :) In my view, this is a war and PACE is a battle within that that war. You do right to point out the war. Some of us...

PACE is the engine that drives the perception of ME/CFS as psychogenic and makes us easy to shove in the MUS binbag. I think the attention on PACE is more than justified and that if PACE falls, it might be the start of bringing down the whole MUS edifice.

I agree. A 'safe space' is what the BPS crowd have managed to create for themselves in the media, which they can access far more easily than patients. The frustrating thing for people knowledgeable about PACE has been the impossibility of forcing the PACE crew to engage in debate, rather than...