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No, EC and the rest of the BPS crowd have ruled the medical narrative for so long and so pervasively, that there is no research money for anything else. So mainly, only charity raised research funds can be used for research into the biomedical science relating to ME. One interesting exception...

Maybe, they've asked her along, so that she can learn something from the others. Anyone in the area who could attend? This would be a good way to find out how paediatric trials are usually designed etc. Presuming it's open access and they are not screening for vexatious militants or people...

Have just been googling "what do physios know about CFS?" or similar, and came across this: http://www.csp.org.uk/news/2018/01/30/nhs-expert-adviser-gives-approval-physios-issue-fit-notes I know that many physios, get a bad press on here - mainly due to inappropriate GET. I am also aware...

Maybe the opportunity to stand up to the BPS mob will be at NICE Guideline Committee sessions. Presumably the chair or 'facilitator' will not allow lay members, or others who know that Biomedical Science is more relevant than BPS mobspeak, to be silenced. The downside is, that these members...

Thanks @chrisb for your input, i will pass it on. It is not something I am v involved with and there were several useful posts on the FB site from Mums (mainly) who have encountered similar stuff themselves. The other two were vulnerable families, who I think were probably still struggling...

@Amw66, you are a star!

Those of us in the UK, who have been through the current ME clinics, particularly with youngsters in the last decade or so have been appalled at the pervasiveness of the psychogenic narrative. "Treatments" are GET and CBT mainly based on the PACE view. Some have been subject to "child...

Hi Annie, This is frightening, maybe she is in touch with AfME, who seemed to be trying to get more "services" in Scotland. They are supposed to have something like a mentor scheme. So hard to know how to reach her. Attempts to send info via MP, or even trying direct if we could locate address...

Charles probably could not apply as a lay member given his qualifications. This is just my take (not researched)! He did ask the question re whether 'private' (ie not NHS) doctors could be considered. NICE guy said they were looking into that. is Keith G well enough. NICE facilitator at our...

Yes, they are based at RCP, confirmed by NICE people on our table. I do not think all NICE staff have the entrenched BPS view yet. So much depends on who the chair will be and who is pulling her or his strings. (At least they are not in the same building as the psychs!) It is going to be a huge...

Like your logic there Graham. Unfortunately logic does not seem to feature in PIP decision process, so probably not work-related stuff either. The PIP Award decision letter to my friend seemed to consist mainly of repetition, deviation, irrelevance and nonsense, with a few accurate statements...

Maybe EC should offer her services: "Tips on making up acronyms that are easier to remember", even if they still don't make sense" Come to think of it, why limit it to acronyms, why not "How to make all sorts of things up/misrepresent the facts/ make false allegations of libel etc..."

Looks like they're not covering ME then, just CF, which I think we all know is a symptom. Some might even describe it as a consequence of everyday life..... I suppose it's useful to keep up with their latest nomenclature, FNSD was a new one for me. Functional Neurobiological Symptomatic...

What other delights will be revealed, are Per Fink and Phil Parker going. I know LP was banned in Norway, but now that its success has been "proved" and published in the medical literature....

Ensuring that the word reablement is not applicable to people with ME was a key point raised at our table at the NICE workshop. GOSH (Great Ormond St Hsp) were never able to explain directly to me why their services were referred to as "Rehabilitation" though I raised the question several...

Wow 90 ish is pretty low. I don't have ME, but do have asthma. I developed it about 10 years ago and it has always been pretty mild. Then 16 months ago I woke feeling fairly rough. I had had a very sore throat the night before but nothing else. When I went downstairs I still felt rotten. I do...

I don't really follow their meaning. If the conclusions are dodgy, something in the study process must have been dodgy.... Or are they saying "conclusions are the issue" meaning patients (and researchers and informed clinicians) just don't like what they found out... Apologies I should really...

Might be useful to the MP, tho' not till after the Wed debate as that relates to the PIP problem, not ESA, though this person should be getting PIP if they can only work for 12 mins/day. It was posted late August during Parliamentary recess, then come party conferences etc , so it might not...

In case others didn't realise this initially (no comments on speed of processing or Maths skills please), this could well be the 12 minute article. Although the person can work a maximum of 20 mins a day, the maximum over the week is an hour. Assuming they only work for 5 days, this equates to...

Did I say anything about recording? (of telephone call) eta:clarity