good point about the journal. I meant the most recent authoritative UK one, but also a good point.
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Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White
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good point about the journal. I meant the most recent authoritative UK one, but also a good point.
JemPD
Senior Member (Voting Rights)
i agree"threatments":great! This word should be adopted....
Woolie
Senior Member
I agree with your main point, @Esther12, that you can't measure the value of a piece of work by the impact factor of the journal its published in. There is no substitute at all for actually examining the paper - and the recent spate of retractions from high impact journals is a reminder of that.
However, it is still interesting to me to see where authors decide to submit their work, and to speculate on the reasons why. Were these authors aiming to influence that audience, or did they pick that readership/editorial board because they'd be least likely to quibble over methodological detail? Were they hoping for somewhere better and got turned down, so this was maybe a second or third choice? Is the review process at the journal known to be gentle overall, or perhaps particularly well oiled for "big names"? Do the authors know people on the the editorial board? etc, etc.
Woolie
Senior Member
Disorders where the patient imagines to have an illness are real too.
Being cured of such a disorder doesn't mean the patient didn't have it.
They've set up a belief system where patients telling them the illness is actually real is considered confirmatory evidence that the patients are imagining the illness.
One could say they are stuck in a vicious circle of false illness beliefs...
What a ridiculous Russian doll type situation..."Being cured of a disorder in which you believed you had a real disease but didn't does not mean you didn't ever have a disorder in which you were convinced you had a real disease but actually didn't... that disorder of being totally convinced of something that was in fact not the case was still totally real at the time, its just that you were cured of it. "
I'm glad they cleared that up.
Yes, what I was really wondering was why they weren't making their first auhoritative statement in The Lancet or BMJ--that would have seemed the most impactful if they actually had anything to say. Had I been specific about those two, it wouldn't have raised the same questions. I agreed with @Esther12's point and removed the sentence.
We are placed in an intolerable bind where we cannot give an answer that is both honest and safe. We have to choose. And even the 'safe' answers are still risky, because we had to lie, and one way or another that usually doesn't end well.
Barry
Senior Member (Voting Rights)
I can't help wondering how the SMC is going to spin this on publication day. Will they ignore it completely? Home in on the CBT angle and try to spin it that little has changed, even though it has? And who will give the expert reactions, and what will they say? Sour grapes? NICE doesn't do (pseudo-)science properly? We've been misunderstood all along? Will be interesting I think, possibly hilarious.
They have all gone very quiet recently, even MS. Maybe their lawyers are finally getting them to see the writing on the wall.
Struck me that a change to the title would improve the accuracy of this piece
Care for people with CFS/ME - based on evidence which is low/very low quality
Care for people with CFS/ME - based on evidence which is low/very low quality
Perhaps a function of the size of the integrated hospital system in the UK - https://www.jrcptb.org.uk/specialties/general-internal-medicine-gim
Barry
Senior Member (Voting Rights)
"Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White"
Sharpe has said before - cannot remember where, on Twitter? - that PACE primarily studied CFS, not ME, and that the PACE-instigated treatments like GET were essentially target to towards CFS, not ME. This claim of MS's has never held up anyway, but interesting to see that this 2021 paper, with Sharpe as the lead author, is clearly going to be extolling the virtues of those same treatments for CFS and ME, as per the title and abstract - the latter acknowledging they are often deemed to be the same thing, as did much of the original PACE documentation anyway.
e.g.
Edit: Found an example.
Sharpe has said before - cannot remember where, on Twitter? - that PACE primarily studied CFS, not ME, and that the PACE-instigated treatments like GET were essentially target to towards CFS, not ME. This claim of MS's has never held up anyway, but interesting to see that this 2021 paper, with Sharpe as the lead author, is clearly going to be extolling the virtues of those same treatments for CFS and ME, as per the title and abstract - the latter acknowledging they are often deemed to be the same thing, as did much of the original PACE documentation anyway.
e.g.
Edit: Found an example.
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Arvo
Senior Member (Voting Rights)
That is undoubtedly part of it (next to a suspected absolute inability to deal with unwelcome reality). But it just occurred to me: didn't they also recently start with selling rights/patents to their CBT? (Would that be a reason for this recent CBT-F stuff?) I vaguely remember something like that. For Chalder research grants and direct income from applying treatment, lectures and whatnot are in the balance, but revenue from rights and patents from their Product would continue after retirement. (It would give Sharpe and White still a financial incentive to keep it up too, next to a reputational and ideological one.)
Edited to add: CBT-LC(TM)?
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Arvo
Senior Member (Voting Rights)
This was one of the things that made me really angry, because I read it as them suddenly advocating "thorough" physical investigation before starting CBT, while they have advised the exact opposite to physicians for decades.
Did I misunderstand?
Btw, Sharpe and Chalder (and White most probably) knew about POTS from the earliest time on (late 80s). And Edwards, who they closely worked with, probably explained how easily it can be detected with a simple lying/standing test in the office at the ME symposium of 1990. (It's in the '92 published account.) They set it aside as just another sign of deconditioning, which is bad, but then still: it never was something to take into account for the patient while applying CBT.... (so they knowingly pushed through people who they knew could very well be having POTS, while omitting it in the manual.)
rvallee
Senior Member (Voting Rights)
Yup I mentioned that a while ago, there are many large contracts signed off on this evidence base, from apps to training to provisioning services. Those create major legal problems not just for them, but for administrative and legal offices who will have to do damage control. Legal offices don't like contracts that can be cancelled because the stated reasons turned out to have been fraudulent and that makes administrators also unhappy.
You are probably thinking of the licensing of a CBT app by KCL for IBS, based on the ACTIB trial, which failed. There are others, but this one seemed pretty big. I guess for this they can probably ignore it since IBS is not mentioned in the NICE guidelines, a mistake but whatever, but there are other contracts out there that depend on the fiction of this evidence not being challenged.
I don't think they make any money out of this, but their academic institutions must be quite happy about this, not so much about losing this money tree.
I can really only guess from previous info that they would not advocate thorough clinical assessments, in that they would not cover more in-depth testing such as brain scans, MRIs, immune system tests etc. It's my understanding they advised no in-depth testing for patients suspected of "cfs".
And, as you say OI, which in my own limited knowledge could be connected somehow to reduced brain diffusion, is in the BPS case, just viewed as deconditioning.
They are still advocating CBT and GET as treatments for ME. If they did investigate more thoroughly, they might come to the realization that "a chat and a walk in the park", won't fix ME.
I too thought they had changed their advice in advocating "thorough clinical assessments", but with further consideration, don't think anything has changed.
ETA: this seems such a circular situation. If GET/CBT advised for ME, then no in-depth biomedical investigations. If in-depth biomedical investigations, then no GET/CBT for ME (hopefully!).
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Thank you @CRG for this explanation.
Interesting, the topic of size of divided health care systems vs. national health care has come up for discussion in my household. We have ahem, "universal health care" in Canada. This is run separately by each Province and Territory. Which means it's semi-consistent across borders.
Arvo
Senior Member (Voting Rights)
I might have been unclear, sorry. I'm not a native english speaker, and I meant to ask if I was mistaken in thinking that they are suddenly advocating thorough physical investigation, as I feared I might have misunderstood the meaning of "thorough clinical assessment". (Of course the detail will be in the article itself.)
I already spent my Friday afternoon going through some of my my sources and collecting instances where it was advised to NOT do thorough investigations. Like saying physicians should perform minimum investigations and stating GP's should act as "gatekeeper" to secondary care services.
It leads indeed to a circular situation: We think there's nothing wrong with you -->we advise doing only the most basic test and sticking on a MUS or CFS label as fast as possible -->there are no abnormalities found, therefore.....arrow back to the start. (Now there's a nice arrow diagram that actually represents reality. Talk about Vicious Circles....)
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Jonathan Edwards
Senior Member (Voting Rights)
Charles Shepherd sent this for interest!
Mail on Sunday – letters page October 24
Fatigue treatment is safe and effective
Ethan Ennals asked last week in Health whether doctors or patients are right about the lack of effectiveness and safety of graded exercise therapy (GET) for chronic fatigue syndrome (CFS).
While some patients have been harmed by exercise programmes that were neither graded nor therapeutic, ten scientific trials of GET show it is effective and safe when properly prescribed and delivered. Physiotherapists help patients with many chronic medical conditions using forms of exercise therapy. Surely it would be odd if CFS was the only illness not helped in this way.
Why ban a treatment that has helped so many and provides patients with a way to improve their own health?
Prof Emeritus Peter White – Queen Mary university of London
Dr Alastair Miller – Consultant Physician in Infectious Diseases and General Medicine
Prof Trudie Chalder – Kings College London
Mail on Sunday – letters page October 24
Fatigue treatment is safe and effective
Ethan Ennals asked last week in Health whether doctors or patients are right about the lack of effectiveness and safety of graded exercise therapy (GET) for chronic fatigue syndrome (CFS).
While some patients have been harmed by exercise programmes that were neither graded nor therapeutic, ten scientific trials of GET show it is effective and safe when properly prescribed and delivered. Physiotherapists help patients with many chronic medical conditions using forms of exercise therapy. Surely it would be odd if CFS was the only illness not helped in this way.
Why ban a treatment that has helped so many and provides patients with a way to improve their own health?
Prof Emeritus Peter White – Queen Mary university of London
Dr Alastair Miller – Consultant Physician in Infectious Diseases and General Medicine
Prof Trudie Chalder – Kings College London
Barry
Senior Member (Voting Rights)
Hmmm ... strange then that so many of the reported harms are from GET administered at NHS clinics.
Jonathan Edwards
Senior Member (Voting Rights)
This statement is frankly mendacious:
While some patients have been harmed by exercise programmes that were neither graded nor therapeutic, ten scientific trials of GET show it is effective and safe when properly prescribed and delivered.
This statement is unsubstantiated.
This statement is frankly nuts:
What about:
Myeloma
Basal cell carcinoma
Aortic stenosis
Crohn's disease
Scleroderma
Motor Neuron Disease
Asthma
Carpal Tunnel Syndrome
Fractured femur
Cirrhosis of the liver
Pyelonephritis
Septicaemia
Schizophrenia
erm
While some patients have been harmed by exercise programmes that were neither graded nor therapeutic, ten scientific trials of GET show it is effective and safe when properly prescribed and delivered.
This statement is unsubstantiated.
This statement is frankly nuts:
What about:
Myeloma
Basal cell carcinoma
Aortic stenosis
Crohn's disease
Scleroderma
Motor Neuron Disease
Asthma
Carpal Tunnel Syndrome
Fractured femur
Cirrhosis of the liver
Pyelonephritis
Septicaemia
Schizophrenia
erm