New NICE guideline on chronic fatigue syndrome: more ideology than science? 2022, Flottorp et al

Trial By Error: The Lancet Publishes Whine de Coeur from Impassioned GET/CBT Defenders

"The Lancet has just published an anguished whine de coeur from supporters of the graded exercise therapy/cognitive behavior therapy/ [GET/CBT] approach to ME/CFS. (Or CFS/ME, as these authors insist on calling the illness in what those familiar with the debate will recognize as a childish fit of pique.) These impassioned members of the GET/CBT ideological brigades, all from northern European countries, are metaphorically stomping their little feet over the new ME/CFS clinical guideline from the UK’s National Institute for Health and Care Excellence."

https://www.virology.ws/2022/02/14/...-de-coeur-from-impassioned-get-cbt-defenders/
 
Thought others too might find it interesting to revisit Kjetil Gundro Brurberg's text for "The Mental Elf" in 2017. He criticised the Journal of Health Psychology's edition on PACE (where he coauthored an article that got rejected) and an editorial by dr. Geraghty.

quote:

The take home message from PACE is that patients with CFS/ME are expected to benefit from CBT and GET. These results are consistent across several outcomes within PACE, and across several other independent trials as confirmed by systematic reviews (Larun et al, 2016; Price et al, 2008)

A PACE-gate or an editorial without perspective
 
Kalliope said:
Thought others too might find it interesting to revisit Kjetil Gundro Brurberg's text for "The Mental Elf" in 2017. He criticised the Journal of Health Psychology's edition on PACE (where he coauthored an article that got rejected) and an editorial by dr. Geraghty.

quote:

The take home message from PACE is that patients with CFS/ME are expected to benefit from CBT and GET. These results are consistent across several outcomes within PACE, and across several other independent trials as confirmed by systematic reviews (Larun et al, 2016; Price et al, 2008)

A PACE-gate or an editorial without perspective
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And he's involved with the NIPH long-covid team. I have low expectations that it will be taken seriously.
 
Jonathan Edwards said:
I thought perhaps I should add a post to reference 18 just in case someone looks it up!
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:thumbup:

TiredSam said:
I see I have ten posts on that thread, so now I can tell my mother that I have been cited in The Lancet!
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:laugh:

That thread had consisted of more than 800 posts even before Jonathan added some advice for the authors of the Lancet piece.

I couldn't find anything in the threads' first posts that could serve as evidence for what they claim the reference was, but didn't read through the thread to find out what the authors meant.

Perhaps they also need advice on how to reference to specific posts within a thread?
 
Flottorp manages to shine a light on the inequality between us as ill people and the BPS lot.

They can freely come here and as members snoop around looking for information listening in on what can sometimes be merely letting off steam. For many of us this is our only way of communicating with others and it is not completely private by it's nature.

However if they want to blow off steam, share information or just generally otherwise discuss us they can do so in perfect privacy except when it's more official and can be subject to an FoI. And even then it is difficult for us to gather any information and to place it in context.

Advantages stack up on their side. Pretty much anything we say is out there for their perusal -- not true in reverse.
 
Snowdrop said:
Advantages stack up on their side. Pretty much anything we say is out there for their perusal -- not true in reverse.
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One could argue that the lack of transparency protecting the CBT/GET people is one of the privileges that has corrupted them.

All this privilege and never any consequences for bad behaviour is how they ended up in this mess. They wanted to be our saviours but structural problems in academia and medicine created a power imbalance between them and patients that rewarded bad behaviour, and now they are villains.
 
strategist said:
One could argue that the lack of transparency protecting the CBT/GET people is one of the privileges that has corrupted them.

All this privilege and never any consequences for bad behaviour is how they ended up in this mess. They wanted to be our saviours but structural problems in academia and medicine created a power imbalance between them and patients that rewarded bad behaviour, and now they are villains.
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Yes, though my thinking on this has developed over time. Especially when thinking about why they keep getting funding. As an aside I just checked recently and Knoop and Bleijenberg and I expect if I go back and check Crawley have all been at this 'research' and writing more research is needed (why? for them to finally get good results?) -- they have all been at it for more than 15 years. Any sensible person would expect that more of these papers are not going to yield real world help for people to get back to their lives.

But they keep being funded by various institutions that give rise to, protect and nurture them. In Canada for example -- McMaster. In the US Columbia. In the UK Bristol. In Scandinavia I'm not clear perhaps Aarhus and U of Oslo? There are other centres of course too. But my point is the money comes in house and the funders, administration all seem to want to protect this academic exercise in futility. They have there supporters in gov't adjacent institutions where politics is thought of interchangeably as science. Call it the science of getting your way.

I'm not sure what it will take for the relevant institutions to distance themselves from their creation. We shall have to see.

I had always viewed tenure as a good thing. But it seems now more a Janus coin where there is a flip side. It all depends on just how many people reject reason for personal prestige and other gains. When that number shifts too high we are left with people in authority behaving not as responsible actors in the public interest with the publics trust but as authority with the right to do whatever they like. No transparency or accountabliity.

This, if left to rot will go badly in so many ways and do harm in larger context far beyond our own problems with BPS.
 
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In the UK the funding for all this crap BPS research comes, as far as I know, from the NIHR. There are lots of universities and clinics involved in employing the researchers, but they don't fund the research.

I think if we want this stuff stopped we need to educate the NIHR and ethics committees about not funding and approving such research projects on the dual grounds that they are already proven ineffective, so it's a waste of money doing more of the same, and that they can't produce usable results if they keep using unscientific methodology.
 
Possibly with a suggestion that in light of the unscientific methodology that they should really be entitled to a full refund from various people, and should consider instigating proceedings against them for fraudulently obtaining research funding, if this isn't immediately forthcoming?
 
Trish said:
In the UK the funding for all this crap BPS research comes, as far as I know, from the NIHR. There are lots of universities and clinics involved in employing the researchers, but they don't fund the research.

I think if we want this stuff stopped we need to educate the NIHR and ethics committees about not funding and approving such research projects on the dual grounds that they are already proven ineffective, so it's a waste of money doing more of the same, and that they can't produce usable results if they keep using unscientific methodology.
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I think you are right. My mistake. I had a brief look at a few studies and there was no inhouse funding. I don't know quite where I got the idea.
 
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