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UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion
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MSEsperanza
Senior Member (Voting Rights)
Thank you Paul Garner for making people aware of the criticism on the response you co-authored with some members of the GRADE Working Group and Signe Agnes Flottorp.[*]
Perhaps Paul Garner forgot about the criticism? And also that the following was added to their response? :
"This Rapid Response is not an official communication from the GRADE Working Group".
[*] "Signe Agnes Flottorp, Research director of the Norwegian Institute of Public Health. Flottorp recently was at the center of controversy when she defended research into the Lightning Process, a non-medical training program that combines concepts from Neuro-Linguistic Programming, Life Coaching, and Osteopathy. Critics have denounced the Lightning Process as pseudoscience or quackery."
from: ME/CFS Skeptic, The NICE guideline committee and GRADE methodology https://mecfsskeptic.com/nice-guideline-committee-and-grade-methodology/:
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MSEsperanza
Senior Member (Voting Rights)
This isn't the response by Busse and other GRADE people and co-authored by Garner and Signe Agnes Flottorp, though.
Garner's link just goes to all responses of the original article, and the latest is displayed first.
Barry
Senior Member (Voting Rights)
From somewhere the sun doesn't shine I think. Probably as clear an indication as any that they conflate chronic fatigue - any fatigue - with ME/CFS. Don't seem to know their @rse from their elbow.
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Sly Saint
Senior Member (Voting Rights)
So I take it the BMJ don't check the rapid responses? eg her twitter account doesn't exist and she says she got the 30% figure of pwME/CFS from the BMJ app.
(nothing against her personally, there is quite a lot of info about her and the loss of her son on the net) and it's clearly an attempt to raise awareness for the condition she believes he suffered from, but come on, at least try to get your facts right)
Some posts have been moved to new threads:
UK ME/CFS and Long Covid clinics not offering guideline compliant care accessible to all
UK Autism NICE guidelines
UK ME/CFS and Long Covid clinics not offering guideline compliant care accessible to all
UK Autism NICE guidelines
Also at the link is a terrific response about the application of GRADE by NICE in the ME/CFS Guideline by @Michiel Tack (dated March 2021). If I'd read it before, I'd forgotten it. Definitely worth a read.
hibiscuswahine
Senior Member (Voting Rights)
Sorry, some access problem. The quote is from Karl Tronstad, the biochemistry researcher, he links to the recent Chest article on invasive CPET in ME/CFS and Lien’s research from 2019
https://forskersonen-no.translate.g...sl=auto&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=nui
Kalliope
Senior Member (Voting Rights)
The debate in the newspaper Aftenposten continues with another round from the professors Rolf Rønning and Ola Didrik Saugstad with a great reply to the 24 health professionals who objected against the NICE guideline.
ME-debatten: Vi må slutte med det som ikke virker
The ME debate: We have to stop with what's not working
quotes:
In Aftenposten on 10 November, «24 professionals» has a response to our article on ME on 4 November. In their response, they claim that the debate about treating patients with graded exercise therapy and cognitive behavioral therapy is far from over.
This is despite the fact that the English expert body Nice, after a thorough assessment, advises against this as an offer to ME sufferers. The proviso is that cognitive behavioral therapy is not recommended as the main treatment, but can be used as support for patients who want this.
The 24 continue to state that "large parts of both Norwegian and British academic medicine reject the scientific basis for the advice".
This statement is completely undocumented, and it turns the matter upside down. What Nice does is to state that there is no professional basis for claiming that the mentioned forms of action work.
...
We understand that "24 professionals" who have invested heavily in psychosocial treatment, want to fight for their treatment plan and livelihood. However, it is an absurd situation that a small group of loud-mouthed therapists will overtake the vast majority of ME patients and treat them against their will and desire.
ETA: Added a bit more to one of the quotes
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Kalliope
Senior Member (Voting Rights)
Two new opinion pieces rebutting the one from the 24 health professionals who defended GET/CBT.
The first is from board leader of the Norwegian ME Association, Linda Bringedal. She writes:
quotes:
Nice shows that they largely take patients seriously, by removing treatments that the patient experience shows do harm, and that lack a scientific basis. The Nice guidelines constitute a paradigm shift in the view of ME.
...
No one denies that a biopsychosocial perspective is important. The surrounding environment and the person's mind affect illness, but neither more nor less in ME than other chronic illness. Cognitive therapy can be a good support in dealing with grief and loss associated with loss of function, but it is no cure.
Retningslinjene fra Storbritannia utgjør et paradigmeskifte i synet på ME
google translation: The guideline from UK constitute a paradigm shift in the view of ME
The other is from ME patient Jørn Tore Haugen. It is the second of three short opinion pieces.
Et foreldet syn på ME
google translation: An outdated view of ME
Quote:
.. these 24 professionals and Landmark represent a very small group of people who are fighting for an outdated view. Serious professionals have long realized that ME is a somatic disease.
PG doesn't realise that there is another, bigger story that's about to break.
His tweets are really not going to age well.
Not totally up-to-date, what's that bigger story?
That's in reference to the micro-clot finding as a biological model for long Covid. Once that paper is published, there won't be any space left for psychological explanations of onset or treatments in LC. The BPS god-of-the-gaps will then find their celestial throne controlling the ME/CFS world similarly upturned.
I imagine there is much still to analyse and the Pretorius paper likely won't come out until next year, so "about to break" is doing a little too much heavy lifting in my comment above. Perhaps in the meantime this tweet will suffice to keep everyone feeling optimistic that this could well be the inflexion point we've wanted. (Personally, I would interpret any of these relatively rare Twitter comments from the Prof. as a circumspect understatement).
I imagine there is much still to analyse and the Pretorius paper likely won't come out until next year, so "about to break" is doing a little too much heavy lifting in my comment above. Perhaps in the meantime this tweet will suffice to keep everyone feeling optimistic that this could well be the inflexion point we've wanted. (Personally, I would interpret any of these relatively rare Twitter comments from the Prof. as a circumspect understatement).
You underestimate the BPS proponents.
A biological mechanism is no hindrance to a psychological explanation of cause, or for psychological treatments. They are busy carving out niches in MS, and many more diseases. I've been told CBT works by reducing inflammation.
Wonko
Senior Member (Voting Rights)
More, or less, than a diet containing, say, carrots, pomegranates, or some OTC NSAID ?You underestimate the BPS proponents.
Don't forget kale!
hibiscuswahine
Senior Member (Voting Rights)
Supposition. Would enjoy reading their proof of this. Was it a psychologist/therapist? A lot of people throwing around unproven biological theories out there and then being picked up by public and wellness industry e.g. intergenerational trauma, it’s in your DNA. Not proven.
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I hope you're right, but as far as I know there's no evidence that microclots are a factor in ME/CFS. They seem to me quite likely to be specific to Covid. Any biological finding about long covid will just be taken by the BPS people as evidence that long covid isn't ME/CFS, not as evidence that ME/CFS has a biological basis, other than the stress or dysregulation stuff they think CBT can cure.
Jonathan Edwards
Senior Member (Voting Rights)
Yes, they love a bit of B to go with the P and S. The odd cytokine or bendy neck or blood clot.
I don't see blood clots altering the landscape any time soon. If this was a real story there would be grants funded all over the shop by now. All university hospitals know about blood clots yet all we hear is from one group in South Africa and a German machine for high there are no trials it seems.
Barry
Senior Member (Voting Rights)
Yes, the only thing that will finally shut (most of) them up is when a truly unarguable biological cause is found why ME/CFS leads to an abnormal response to exertion. One that cannot be influenced by magical thinking. Of course there will always some who insist anything can be fixed by magical thinking.