NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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adambeyoncelowe said:
My guess is that the print version needed to be shortened to fit the space, so someone other than Sean edited the paragraph without context.
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Sean said he was furious about it and ensured that it was put right for the e-version.

Yes, I wonder why the other commentators were anonymous? Like me they were commenting on something already 'known'?
 
An interesting question is exactly which physicians might come out of the woodwork and criticise NICE on this. So far few if any physicians have expressed concern - perhaps with the exceptions of Turner-Stokes and Garner. Perhaps it is high time the College did take a position. Maybe some physicians with some sense will get to hear about the PACE fiasco.
 
Jonathan Edwards said:
Yes, I wonder why the other commentators were anonymous? Like me they were commenting on something already 'known'?
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adambeyoncelowe said:
Not everyone has the principles to stand behind what they say, I guess?
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Or some public relations network included the quoted persons in their brief embargoed until late tonight?

Edit: On reflection: Weren't there similar quotes from anonymous sources in some of the coverage before? Was that in the BMJ?
 
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Ariel said:
The quote was clearly taken out of context and makes little sense as presented; imagine it's too late to change print editions but they should print a clarification online as it's pretty misleading on my reading anyway
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Indeed. I would not call this "opaque". Jonathan Edwards is presented as an expert in clinical trials, and then by (weirdly) placing the word NICE instead of e.g. "those" in his remark it refers (or seems to refer) directly to the NICE review being "deeply flawed". Even more so because the whole clear point that the article is trying to make is that the NICE review is no good and the whole medical profession is opposing this en masse. @Jonathan Edwards , if I didn't know who you were I would have thought you were deeming the NICE review deeply flawed as someone with extensive knowledge in these things; you are portrayed as one of the experts opposing the guidelines, and your expertise explicitly used to give weight to that. I know you can't run after everything, but given that this is a big paper and your expert opinion carries weight, it might be a good idea to insist on a clarification or rectification.

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Jonathan Edwards said:
Sean said he was furious about it and ensured that it was put right for the e-version.
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Good.
 
Jonathan Edwards said:
That looks like a screenshot of the reply from Sharpe on the Times e-version.

If anyone wants to tweet response to Sharpe's: Someone should tell Professor Jonathan...

I would love to say:
If it was well known that there is no other measure why did PACE set up actometry and abandon it when a Dutch study failed to show a positive? Methods differ between specialities but reliability of evidence is not negotiable (see my NICE testimony).
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I didn't know there was a "Dutch study failed to show a positive" - could someone send m a link?

Also, is someone responding to the Times article?

@Michiel Tack @Jonathan Edwards - I guess you guys are busy, hope you don't mind the tag.
 
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It's likely there's going to be a lot of opinions from people that haven't even read the evidence documentation NICE has provided or even understand the methods by which NICE has evaluated the evidence.

Maybe I missed one, but when the draft guideline came out I'm not sure I saw even one substantive critique of the methods that NICE used to come to its conclusion. It was just a lot of implying that NICE is capitulating to the views of patients, anecdotes about patients being helped, and opinions from people that either didn't understand the methods used or hadn't bothered to read through the documentation NICE provided.
 
August 16, 2021
Positive Development in ME/CFS Coming Soon

Just after midnight on Wednesday in London (Tuesday afternoon CDT), the British National Institute for Health and Care Excellence (NICE) will release the final version of its new guideline for ME/CFS treatment. Based on the draft circulated earlier this year, it appears that NICE is finally going to rescind its 2007 recommendation for Graded Exercise Therapy and Cognitive Behavior Therapy, having found all of the studies supporting those treatments to be of either "low" or "very low" quality. This is a very big deal, as it repudiates the idea, long pushed by a school of British psychiatry, that ME/CFS is caused by dysfunctional illness beliefs and irrational exercise avoidance, in favor of the biomedical model already adopted in the U.S. by the NIH, CDC, and other research and medical centers.

My friend and coauthor Brian Hughes, of the National University of Ireland, Galway, explains the significance of the new NICE guideline -- including its relevance to research on Long COVID -- in a ten-part post on his blog The Science Bit, which he has graciously allowed me to copy below. I will be publishing my own observations later this week, in a column with David Tuller, once we have seen the final report.
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rest of post here
https://www.thefacultylounge.org/2021/08/positive-development-in-mecfs-coming-soon.html
 
Just posted this* on the Times site. It may look familiar to you @Jonathan Edwards @Michiel Tack

Must remember to cancel the subscription before they charge me!

*"If it was well known that there is no other measure why did PACE set up actometry and abandon it when a Dutch study failed to show a positive? Methods differ between specialities but reliability of evidence is not negotiable (see Jonathan Edward's NICE testimony).



We're all familiar with claims that "this" and "that" were effective treatments for coronavirus, many of those proposed treatments were subject to clinical trials and shown to be ineffective. Why should we have a different standard for CBT, and exercise treatments? After all these treatments can be objectively assessed using actometry (electronic activity monitoring). OK objective outcome criteria show CBT, and exercise treatments, don't work.



As for unprecedented resignations; I think you'll find that Hans Knoop, a researcher who is a proponent of the use of CBT in ME/CFS, resigned just before the Dutch guidelines were published.



This NICE review represents a positive step i.e. NICE is evaluating the evidence rather than looking to the gallery - those who financially benefit from these "low/very low" quality trials and the suppose treatments based on them."
 
Sharpe said:
Whereas it is easy to ensure a patient in a pharma trials does not know which pill they are being given, it is impossible to hide the fact that you are giving someone graded exercise or CBT.
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Does MS not realise he is once again illustrating - to perfection - these people's inability to comprehend what @Jonathan Edwards and others have pointed out - that if the only way you can think of to do a clinical trial will result in evidence of very low quality, with all the attendant risks thereof, that does not make it excusable to pass such trial results off as it they are of acceptable quality. If a car fails its MOT because there is no way to make it pass, that does not mean there is no other alternative but to give the car an MOT pass ... the car has to be scrapped.
 
FMMM1 said:
I didn't know there was a "Dutch study failed to show a positive" - could someone send m a link?
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Wiborg (2010)

https://pubmed.ncbi.nlm.nih.gov/20047707/

1. Summary: CBT does not increase physical activity in CFS patients, as measured by actigraphy. In particular, the self-report fatigue and actigraphy results did not correlate, so there is simply no possibility of CBT having a causal effect on activity levels.

2. It came out before PACE (Feb 2011).

3. @Tom Kindlon asked the PACE authors why they dropped actigraphy for the outcome (after collecting a full set of baseline data). Their answer (on the public record, in a formal journal), was that the patient organisation involved in the trial (Action for ME) had agreed/advised (?) that the actimeters themselves were "too much of a burden on patients".

Actimeters are deliberately designed to be as unobtrusive as possible, and weigh less than 50gm (1.75 oz). I have a light short-sleeved summer cotton shirt that weighs 151gm. Wearing that is no burden.

4. Subsequently, information that came out of an FOI by @JohnTheJack revealed that the reason PACE gave to the Trial Steering Committee (?) for dropping the actigraphy was that results of the Wiborg study were negative, they did not support an effect from CBT. PACE argued that they should only be required to use measures that gave positive results.

Let that sink in. They are claiming to be exempt from falsifiability. To be allowed to use a methodology that can never prove they are wrong.

And so here we are...
 
If any of the Royal Societies do explicitly reject the new guidelines would it be worth pointing out the links of prominent GET/CBT proponents to these organisations? However my memory is terrible and I am struggling to draw up the list:

  • Prof Sir Simon Wessely - Former President of the Royal College of Psychiatrists and the Royal Society of Medicine.
  • Prof Michael Sharpe - Previous Royal College of Psychiatrists’ Psychiatric Academic of the Year
  • Prof Peter White - ?
  • [Dr Dame Clare Gerada - Former Chair, longest serving committee member and incoming President of the Royal College General Practioners (wife of Simon Wessely)]
[Edited to alter Dr Dame Gerada’s details in response to @Dx Revision Watch ’s post below.]
 
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