There's the title for your next blogpost, @dave30th.
@Action for M.E. - even a half-day pass would be a step forward, and possibly easier for you to administer - but please bear in mind that even...
Thanks for your reply. I don't recall seeing this for academic conferences but I have seen it for other events where it's possible to buy a ticket...
What about people who are only well enough to come for an hour or so?
Glad to have this exposed, @dave30th. What a pile of crap. Makes it all very clear why Michael Sharpe and his colleagues strenuously avoid live,...
A quick google shows that various aspects of blinking have been examined in relation to fatigue (and sleepiness) but I didn't find an up-to-date...
Good to know! Just stepping back and taking a wider view for a minute - what, as a science-oriented forum of patients, would we most want to say...
Come to think of it, that might be best as two separate papers but I think that both are important points that deserve a standalone paper.
That's a good idea. There's the S4ME submission to the NIH (?) common data elements thing and it would be easy to add something on subjective...
Why wait to be invited? Don't people just submit papers?
Very pleased to hear that! Are you intending to go?
Sorry if I'm taking any of your points out of context, @Jonathan Edwards - I'm not able to read much at the moment (heat + dysautonomia).
I agree with your overall point but again, wouldn't want to concede that "Subjective measures as listed are important to the patient" because the...
@Barry - I think your post is an excellent primer for anyone wondering whether to try to set up a meeting with their MP.
So am I, but my concern is that by diluting the NICE guidelines to apply to 'chronic fatigue' (the Oxford definition), we might dilute the...
But I wonder if it matters in terms of preventing harms. I wonder if people with chronic fatigue who don't have PEM are at such serious risk of...
But that in itself would be interesting, after the huge volume of soundly based criticism that Michael Sharpe must have read by now. If he's still...
I'd be very careful of being charitable on this point. I think it was Trudie Chalder who essentially said that ME consists of feeling tired...
Yet another thing that needs changing in medicine. Is anyone campaigning for it? If not, maybe this is a campaign that our community could...
To be nitpicking, although patients' ratings of their health status improved, there's no evidence that their ratings reflected their beliefs. The...
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