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Sounds a good idea. However I think a shorter hashtag would be good. #pwme4science Actually best would be #Science4ME LOL

Gregor Purdie and Julian Newton however don't seem of the BPS bent, so surely AfME must be getting better advice now?

Also isn't there something that says with ME our HR doesn't reach our max properly? So do they test lactic acid accumulation or something to test for inefficient aerobic respiration? I might not be quite "getting" this whole calculation here.

Interesting too that Resting HR affects the score. I notice that now I've got ME I have a higher resting HR than I used to have. Also if I go somewhere (eg going for a test like this) my HR stays higher again just from being out and about. So, I wonder, how they ensure they have a sound...

I suspect that AfME hedge their bets because they can't or won't deviate from whatever current NICE guidelines say. The furthest they seem to be able to go, is to express concern about PACE, but not to follow through with the obvious logic and say NICE is now wrong. It seems to me to be a...

Right enough @unicorn7 - When training the horses for endurance we certainly didn't aim for the same amount every day. Used by the psychiatrists the boom & bust idea is certainly not helpful.

Agree @Woolie - they have turned what could be a useful concept for long-term management of a fluctuating condition into something totally different. Used as an accusation it becomes a perfect Catch 22 of blaming the patient for whatever they do. There is NO right answer. I wrote a piece...

Yet in a way they are right. Trying to spread activities out (at whatever level you operate) helps to avoid unhelpful bodily reactions (PEM or whatever we want to call it) that could cause further relapse. In that sense the concept of "Avoiding Boom and Bust" is not entirely a bad idea. Yet...

I agree that we shouldn't expect every avenue explored to lead to a result. Certainly, I don't expect any psycho-social avenue to lead to anything more useful than the "counselling to cope" type of help. That, in part, is due to my lived experience of having ME - the idea doesn't fit with my...

Well this rings true to the flu type feelings I get. A good line of research to follow up methinks. Now where’s the substantial funding required?

Probably something like those dated 25th but sent by snailmail were still counted?

I have to admit that when the call went out, I imagined 60 letters or so would be a fantastic response. To have 210 different individuals putting their names on record, and writing to the MRC to complain about the PACE trial authors is simply mind-blowing, and must surely put Dr Myhill's...

I'd love to see some-one from @action4me pipe up and defend their charity on this matter. Were they colluding, being bowled over by force of the characters involved, or in some other way being coerced into agreeing to dropping the actimeters? Or perhaps they didn't really agree at all, but...

Yes @Sbag I was thinking since writing that post that we should take it beyond GET/CBT. Thanks.

Reply in about the YELLOW CARD system. Hmmmmm.... okay so where next? It would seem to me that all interventions funded by NHS and approved by NICE should be covered by a Yellow Card system of some sort. I'm going to talk to my MP Jim Shannon about this again. What sort of question do...

You might need to look at the other tab: "Tweets and Replies". It might be only 2 tweets are tweets not linked under another one as a reply. ;)

I wrote a little about "Cargo Cult Cures" once on my blog. It's really a post about how difficult it is to tease out what factor helped any improvement, when stories are personally told. Anyway, it's a short post from almost 3 years ago...

Another one on PRS https://pdfs.semanticscholar.org/e237/b036a6a78ff573b9a0dcdc1870547d96ca44.pdf

And an abstract about a boy who developed PRS from CFS/ME http://journals.sagepub.com/doi/abs/10.1177/1359104511403680

I found this: Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2762526/ "Treatment should be multidisciplinary and characterized by patience, gentle...