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

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'?

 

Not everyone has the principles to stand behind what they say, I guess?

 

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.

 

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?

 

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.

Edited to add:

Good.

 

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.

 

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.

 

ME Association:

https://meassociation.org.uk/2021/0...ic-encephalomyelitis-abandoned-times-article/

Disputed therapies for myalgic encephalomyelitis abandoned – Times Article
August 17, 2021

 

August 16, 2021
Positive Development in ME/CFS Coming Soon

rest of post here
https://www.thefacultylounge.org/2021/08/positive-development-in-mecfs-coming-soon.html

 

Twitter thread by prof. Brian Hughes

 

Continues:

 

Who could the enigmatic michael s be?!

also, quite remarkable in research of behavioural treatment that it's somehow impossible to objectively measure changes in behaviour. although it's much easier if one just stopped measuring such things i guess

 

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."

 

What a brilliant Twitter thread from Brian Hughes!

 

Does anyone have the full Times article to read?

 

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.

 

Twitter thread by a Norwegian psychology professor

 

It does strike me as annoying that presumably there are some stakeholders who have been bending over backwards to keep their mouths shut* about this all week and the times have just blurted it out a day early because why not?

*this is a good mixed metaphor

 

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.]