Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Hilda Bastian said:
Thanks! A point of clarification: I'm not employed by Cochrane and it wasn't out of concern for Cochrane. Nor are there constraints from Cochrane on my communication, other than obviously not claiming that I speak for the organization. I would not have accepted this role if it wasn't clear that there wouldn't be. I've been criticizing the Cochrane Collaboration even when it was being developed: after some 3 decades worth of public criticism from me, people know what to expect.
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I don't think your clarification can be said often enough. It was important to have it stated on this recent part of the thread explicitly :)

Jonathan Edwards said:
I rather suspect that like Garner he thinks n=1 is low quality evidence but
n=me is top whack incontrovertible stuff.
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The funniest thing I have read today:

n=me
 
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Jonathan Edwards said:
I guess his vignette biography in the Lancet gives us some answers. I think we saw this before:

A general practitioner for many years, Glasziou is especially interested in non-drug research (and is helping to create the Handbook of Non-Drug Interventions), which, due to its lack of commercial interest (sic), is poorly represented in biomedical research. One of his pet subjects is exercise and physical activity. ... “But the evidence is still modest here, so we would definitely benefit from more trials in this area”. He is also sanguine enough to acknowledge that a pure evidence base for clinical practice or for informing public health is not always possible.

Glasziou, who is approaching his 60th birthday, is not looking ahead to retirement. “There is so much to fix, I won't be able to stop working”, he says. And there are surfing ambitions too. “It's my personal favourite non-drug treatment.”
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Forum thread about Glasziou and the Handi working group's work on GET and 'CFS':

https://www.s4me.info/threads/“graded-exercise-therapy-chronic-fatigue-syndrome”-by-the-handi-working-group-2019.10469/

(Still not able to catch up with the thread, just only very superficially skimming so apologies if that was already posted here.)
 
FMMM1 said:
Excuse me for not keeping up here but if there is a "review of Cochrane" and it's carried out by the faithful/buddies ---- then what is the risk? Surely a body like NICE should have people capable of evaluating a clinical trial and e.g. if it is unblinded, and uses subjective outcomes, then label it as poor quality evidence --- tells us nothing.

I'm wondering if the target shouldn't be Cochrane but the users - of course the members here have indeed challenged NICE --- maybe that is an alternative strategy i.e. challenge the review and challenge anyone (acting on behalf of the public) who uses flawed assessments.
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This is the latest I got from the NICE Clinical Summaries people. (https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/). I challenged them for referencing the 2008 CBT review (which even Cochrane now says should not be used) and the Exercise review, both of which the NICE ME/CFS guideline reviewers said could not be used. But they are maintaining the draft ME/CFS guidelines could change before publication which is of course true. However, I fail to see how the NICE evidence review could be changed and decide to use the Cochrane reviews after all, and report that the quality of the trial evidence is now better than low or very low.

Dear Caroline

Thank you for your email.

The CKS service contract manager is Ian Saunders, his email address is: ian.saunders@nice.org.uk.

I asked Ian to review our correspondence to date, he has provided the following comment:

“There is no expectation that CKS content will be updated prior to the final publication of a relevant NICE guideline. We wait for final approval of the guideline by the NICE guidance executive and for publication of the final guideline on the NICE website. The main reason for this is that changes can be made to the draft version of the guideline as a result of the consultation process and waiting for the final publication avoids basing CKS content on draft recommendations that may change. We view this as the most efficient use of our resources. This is the approach taken for all NICE guidelines. CKS topics are updated as soon as possible after the publication of new or updated underpinning NICE guidance, as part of an update schedule that seeks to review and update all 370 CKS topics as often as is practical within the available resources.”

Kind regards
Janet

Communications Executive
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Tel: 0300 323 0141 | Fax: 0300 323 0149
Web: http://nice.org.uk
 
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It does seem strange that ME is being discussed in these terms when what might have been the germinal paper on the subject, published in 1986, from a paper delivered at a conference in 1985, contained this

Contraindications; "hurt" versus "harm". One of the most frequent, serious, and major causes of unnecessary invalidism, disability and other illness behaviour is the inadequate transfer of relevant information and understanding about the various issues for which the term "contraindicated" is used in medicine. The misunderstanding and confusion which can arise from the the seemingly simple use of this term can have profound and long range effects on a patient's life and livelihood.

These potential problems can be avoided through use of a simple distinction between "hurt" (discomfort) and "harm" (threat of physical damage). Physicians often fail to communicate such distinctions when recommending or indicating "contraindicated" activities to patients and other relevant parties such as employers.

The distinction between "hurt" and "harm" is the distinction between the the discomfort and pain associated with organic conditions and behaviours which are non threatening physically (i.e. "hurt"), from that associated with diseases and activities which are physically threatening and can lead to to further or more rapid physical deterioration, progression or additional damage (i.e "harm").

These seem like serious matters which should have been settled long ago. It is strange that the paper seems to have been virtually expunged from the record.
 
Caroline Struthers said:
This is the latest I got from the NICE Clinical Summaries people. (https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/). I challenged them for referencing the 2008 CBT review (which even Cochrane now says should not be used) and the Exercise review, both of which the NICE ME/CFS guideline reviewers said could not be used. But they are maintaining the draft ME/CFS guidelines could change before publication which is of course true. However, I fail to see how the NICE evidence review could be changed and decide to use the Cochrane reviews after all, and report that the quality of the trial evidence is now better than low or very low.

Dear Caroline

Thank you for your email.

The CKS service contract manager is Ian Saunders, his email address is: ian.saunders@nice.org.uk.

I asked Ian to review our correspondence to date, he has provided the following comment:

“There is no expectation that CKS content will be updated prior to the final publication of a relevant NICE guideline. We wait for final approval of the guideline by the NICE guidance executive and for publication of the final guideline on the NICE website. The main reason for this is that changes can be made to the draft version of the guideline as a result of the consultation process and waiting for the final publication avoids basing CKS content on draft recommendations that may change. We view this as the most efficient use of our resources. This is the approach taken for all NICE guidelines. CKS topics are updated as soon as possible after the publication of new or updated underpinning NICE guidance, as part of an update schedule that seeks to review and update all 370 CKS topics as often as is practical within the available resources.”

Kind regards
Janet

Communications Executive
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Tel: 0300 323 0141 | Fax: 0300 323 0149
Web: http://nice.org.uk
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Thanks @Caroline Struthers for doing this - I feel that I should be contacting my MP etc. --- talking to those who can influence.

Again, I'm really not following all of this but if studies have been reviewed, and downgraded, then that should be reflected in the NICE Guidelines - or at least a comment added that that the "evidence has been reviewed --- revision currently ongoing" or whatever.

If I used a reference document which was flawed, and persisted in using it, then I'd expect consequences - how come NICE doesn't have to meet that standard?
 
Caroline Struthers said:
no they don't
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Check this out

I did a search to see if Larun had done any other Cochrane reviews and there's one on an extremely important topic which hasn't been updated since 2006. It is still used in five guidelines - one published in 2019 https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD004691.pub2/full

On the guideline page it proudly says that "Cochrane UK continually checks guideline developers' websites to identify guidelines informed by Cochrane Reviews. Links to guidelines are provided if available, although access will depend on the provider" https://www.cochranelibrary.com/cds...CD004691.pub2/related-content#guidelines_data

So Cochrane identifies where its reviews are being used, and boasts about it. But don't bother to contact the same guideline producers when the reviews are seriously out of date, or even when they have slapped a "do not use" note on a review as they did with the CBT for CFS review. Not that NICE seem to particularly care about it either.
 
Caroline Struthers said:
This is the latest I got from the NICE Clinical Summaries people. (https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/). I challenged them for referencing the 2008 CBT review (which even Cochrane now says should not be used) and the Exercise review, both of which the NICE ME/CFS guideline reviewers said could not be used. But they are maintaining the draft ME/CFS guidelines could change before publication which is of course true. However, I fail to see how the NICE evidence review could be changed and decide to use the Cochrane reviews after all, and report that the quality of the trial evidence is now better than low or very low.

Dear Caroline

Thank you for your email.

The CKS service contract manager is Ian Saunders, his email address is: ian.saunders@nice.org.uk.

I asked Ian to review our correspondence to date, he has provided the following comment:

“There is no expectation that CKS content will be updated prior to the final publication of a relevant NICE guideline. We wait for final approval of the guideline by the NICE guidance executive and for publication of the final guideline on the NICE website. The main reason for this is that changes can be made to the draft version of the guideline as a result of the consultation process and waiting for the final publication avoids basing CKS content on draft recommendations that may change. We view this as the most efficient use of our resources. This is the approach taken for all NICE guidelines. CKS topics are updated as soon as possible after the publication of new or updated underpinning NICE guidance, as part of an update schedule that seeks to review and update all 370 CKS topics as often as is practical within the available resources.”

Kind regards
Janet

Communications Executive
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Tel: 0300 323 0141 | Fax: 0300 323 0149
Web: http://nice.org.uk
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Have replied

Dear Ian (cc Janet)

Thank you for your comments passed to me via Janet.

I have tried to make it clear that I am not asking you to revise your guidance content, I am asking you to remove the reference to Price, J.R., Mitchell, E., Tidy, E. et al. (2008) Cognitive behaviour therapy for chronic fatigue syndrome in adults (Cochrane Review). Issue 3. John Wiley & Sons, Ltd. http://www.cochranelibrary.com

This review appears the reference list (https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/references/) for the Clinical Knowledge Summary when you have not used it to support the management recommendation. You have used the current 2007 NICE guideline to support your recommendations.

Cochrane itself has recently put a “do not use” notice on this review. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/full

Ideally you should also remove the reference to the other Cochrane review (Larun, L., Brurberg, K.G., Odgaard-Jensen, J. et al. (2019) Exercise therapy for chronic fatigue syndrome (Cochrane Review). Issue 10. John Wiley & Sons, Ltd) which is currently being updated and also could also not be used in the recent evidence review supporting the forthcoming ME/CFS guidelines.

With best wishes

Caroline
 
Jonathan Edwards said:
I wonder what exercise therapy is doing in 'psych advances'?
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Graded Exercise Therapy is technically still a Cognitive-Behavioural Therapy, albeit one that focuses primarily on behaviour.

A pure exercise therapy focusing on reversing deconditioning would focus on intensity, rather than merely duration and would explicitly factor in rest days, rather than expecting the individual to do the same exercise every day.
 
Snow Leopard said:
Graded Exercise Therapy is technically still a Cognitive-Behavioural Therapy, albeit one that focuses primarily on behaviour.

A pure exercise therapy focusing on reversing deconditioning would focus on intensity, rather than merely duration and would explicitly factor in rest days, rather than expecting the individual to do the same exercise every day.
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Also I think GET (according to PACE) has quite an 'educate patients to think differently' angle to it which helps encourage response bias
 
Jonathan Edwards said:
Oh but now it is all individualized and nothing to with GET. Need to keep up with the trend!
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If a treatment, such as exercise, is individualised it therefore implies (to me) that there is no protocol being followed. So if therapists are making stuff up as they go along doesn't that mean they can be blamed for harming people with GET and/or CBT of their own devising?
 
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