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Does any version of 'First, do no harm' apply in this context? (I don't mean this as a bit of point-scoring rhetoric - I'm asking whether there's a set of clinical principles that apply as some kind of basic rules when research is useless or impractical.)

Can this really be an unsolvable problem? A perverse therapy, equivalent to trying to cure diabetes with sugar, worsens the condition and yet harm can't be ascribed to it? The provision of GET by the NHS really worries me. There are plenty of people on this forum who say that they've been made...

What sort of evidence? Flagging @Tom Kindlon.

@Tom Kindlon points out that in PACE, fitness didn't improve in any group so activity probably didn't either and so there wasn't really an adequate test of safety. All the evidence of harms comes from patient surveys, which of course aren't 'gold standard' evidence - but it's our everyday...

Probably BACME members or people within their network whom they can call on to review a paper that's outside their collective area of expertise. They probably naturally only received submissions (if it's by submission) from within their network of people who think like themselves, and probably...

BTW, one of the great things about this forum is the number of patients with long memories and real expertise in the detailed history of PACE and lots of BPS-related stuff. If you're ever struggling for a reference or some background, starting a new thread with a specific question would give you...

I did a search on 'Blakemore' on PR (an excellent depository of all sorts of stuff) and found these posts, which might be helpful: http://forums.phoenixrising.me/index.php?threads/disease-of-the-brain-not-the-mind-has-no-stigma-times-uk-needs-responses.11624/#post-200599...

Thanks so much for your work on this. This is what we've needed for decades - high profile input from heavy-duty medics - and it has been missing. Is there anything that patients can do to support you?

What do you think of this, @Jonathan Edwards, @Simon M?

Just posted (held in moderation): It's great that people are trying to raise awareness of ME but worrying to see the old idea repeated that 'studies suggest that cognitive behaviour therapy and exercise are the most effective treatments'. These studies have been discredited (see for example...

They might not, though. For most conferences, there's a call for papers and anyone can submit something. A committee peer-reviews the submissions and chooses which to accept. Also, certain people are chosen to speak in particular slots, such as the after-banquet speech, the keynote speech, the...

Not meant as a criticism of you, Barry! :)

What do you think about an S4ME submission, @Jonathan Edwards?

I wonder if those studies also show a similar problem of sampling. One of our big issues is that the epidemiology on ME/CFS is pretty bad, because no one has put the money in. People seem to have done a lot of convenience sampling in ME/CFS, often centred around groups where you'd expect there...

Does it, though? Wouldn't that require a large, random and therefore representative population sample of PWME to be taken, which doesn't seem to have been the case here? Ditto for the MS population (I don't know how the samples for the comparison sample were got)?

Very interesting! How could that be made to happen?

Do you mean it's invitation only? OTOH, it could be a golden opportunity to force them to be exposed to opposing opinions. It could hardly go more wrong than it's already gone, with BACME apparently stuffed with people who have swallowed the BPS model. The only way is up.

There doesn't appear to be a boss-like emoticon with which to respond to that! Except possibly this one. :devilish: