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

https://twitter.com/user/status/1461685112416919560

 

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.

 

They are quite good at making noises, less good at other things.

 

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.

 

I see that CGATist is Chris Ponting and his name comes first. That is how it should be.

 

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.

 

I’ll believe government support will be forthcoming when I see it. Having said that, securing a meeting with a minister is excellent, well done!

 

Proper length of wet haddock, isn't it!

 

Fishy tripe ... yep, that sounds about right.

 

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.

 

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.

 

Fully agree.

 

"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.

 

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.

 

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.

 

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.

 

Should be read as:

"There’s been a lack of real research over many years.”

 

That's how I read it as a dyslexic person - I can only read sentences in a way that make sense to me...