UK: Secretary of State for Health and Social Care met with ME/CFS researchers Nov 2021

My default response to anything said by the current UK government is likely to contravene community standards, however it is very positive that the right noises are being made from the very top.

This coming so soon after the publication of the new NICE guidelines will hopefully encourage the momentum to continue in the right direction.
 
I hope that the way the denialism will end is that suddenly people in important positions will realize that the denialism is actually hurting society as a whole, rather than protecting it, and that the best way to protect society is to acknowledge the existence of this problem and search for serious solutions so that ME/CFS can be prevented and cured, or at least treated well enough to allow people to function better.
 
When I saw the thread title my heart dropped into my stomach for a moment, as I was expecting to see the old BPS brigade worming their way back into favour. Thank goodness Javid at least seems to have the savvy to not make that mistake again. And boy, how those original BPS 'researchers' must be smarting at this slap in the face for them.
 
NelliePledge said:
I can’t see this as anything but positive, has there ever been an official meeting between the Health Secretary and researchers looking at the biology of ME. Or even a junior minister for that matter.

couldn’t even have envisaged this a couple of years ago
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You can be 100% certain it would not have happened without the new guideline coming to fruition. I wonder how this sits with Sir SW, given how his rise to power and influence has likely relied so much on his endorsements of the old CFS/ME religion-based 'science', and very likely his helping to push cost saving treatments.
 
Barry said:
You can be 100% certain it would not have happened without the new guideline coming to fruition. I wonder how this sits with Sir SW, given how his rise to power and influence has likely relied so much on his endorsements of the old CFS/ME religion-based 'science', and very likely his helping to push cost saving treatments.
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And it would have not happened at all without the years of behind the scenes efforts by our charities - I think that should be recognised as well.
 
Peter Trewhitt said:
My default response to anything said by the current UK government is likely to contravene community standards, however it is very positive that the right noises are being made from the very top.

This coming so soon after the publication of the new NICE guidelines will hopefully encourage the momentum to continue in the right direction.
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"There’s been a real lack of research over many years."
Hopefully he means research that is likely to tell us something not the stuff which has often been funded.
 
FMMM1 said:
"There’s been a real lack of research over many years."
Hopefully he means research that is likely to tell us something not the stuff which has often been funded.
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Well I hope, that following the publication of guidelines rejecting GET and curative CBT and following a meeting with supporters of biomedical researcher, the sentences “We need to do more on ME/Chronic Fatigue Syndrome. There’s been a real lack of research over many years.” are intended as an inditement of the flawed BPS research that has dominated the last couple of decades and the failure to support biomedical research.

Though as said, there is a large gap between words and action, but the right words are at least taking us a little forward.
 
Peter Trewhitt said:
Well I hope, that following the publication of guidelines rejecting GET and curative CBT and following a meeting with supporters of biomedical researcher, the sentences “We need to do more on ME/Chronic Fatigue Syndrome. There’s been a real lack of research over many years.” are intended as an inditement of the flawed BPS research that has dominated the last couple of decades and the failure to support biomedical research.

Though as said, there is a large gap between words and action, but the right words are at least taking us a little forward.
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I think that things like this can have indirect but equally important implications. It helps get the important message out that things have changed, and there is no going back. Hopefully the beneficial effects of the new guideline (this being just one) will cascade out.
 
Peter Trewhitt said:
Well I hope, that following the publication of guidelines rejecting GET and curative CBT and following a meeting with supporters of biomedical researcher, the sentences “We need to do more on ME/Chronic Fatigue Syndrome. There’s been a real lack of research over many years.” are intended as an inditement of the flawed BPS research that has dominated the last couple of decades and the failure to support biomedical research.

Though as said, there is a large gap between words and action, but the right words are at least taking us a little forward.
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One thought is that @Jonathan Edwards has pointed out that actimetry/activity studies could be useful in looking at "how to live with ME/CFS" (not sure if that's an accurate description - there's a thread somewhere).

I hadn't checked the names (other than Chris Ponting) and yes I was quite surprised to see none of the BPS folks ---- that's unlikely to be a random outcome i.e. since the civil servants would have done briefing --- looking at who could/should be given an invite --- it looks more like (political) distancing.
 
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