Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

paper also now featured here


https://www.tropicalmedicine.ox.ac.uk/publications/1493955

 

One of the co-authors, Brian Angus, is there
https://www.tropicalmedicine.ox.ac.uk/team

 

Isn't this just the home webpage of an author claiming this as a publication from that institution?
Just as UCL might stick up one of mine (but doesn't quite like this.)

 

I’d say they probably sent this to the BMJ first and got fobbed off so they ended up in JNNP. It’s a good journal but it doesn’t have the same wide readership or impact.

 

There's always Spiked for them

 

Yes it's in the long list of affiliated researcher publications: https://www.tropicalmedicine.ox.ac.uk/publications

 

Exactly. The Centre is not a journal--it's a collection of affiliated academics who each will have whatever they publish in a journal highlighted on the Centre's site as a publication from an affiliated academic. Nothing unusual here--just standard academic process.

 

Anger over exercise advice in chronic fatigue syndrome

Controversial guidelines have dropped support for graded exercise therapy and CBT, and some experts worry patients will miss out.

Agroup of Australian and international clinicians have been met with backlash after they critiqued the latest NICE advice against exercise and cognitive-behavioural therapy for patients with chronic fatigue syndrome.

Professor Paul Glasziou, GP and director of the Institute for Evidence Based Healthcare at Bond University, co-authored a review highlighting concerns with the development of the guideline and the harms it may have on patients.

http://www.medicalrepublic.com.au/a...-of-chronic-fatigue-syndrome-guidelines/96284

 

Frustrating he can make himself out to be a victim. This has happened before with people like Garner, Sharpe, etc. I think we should try to avoid giving them easy wins though it is hard to control the whole ME community on Twitter/X and in this case there may not have been the personal attacks there have been on occasion.

There is an option to comment under the article though I’m not sure how easy it is to register on the site.

 

Of all the arguments, this is the most ridiculous one. No one is missing out on anything, no patient would ever be advised to avoid exercise entirely, it literally never happens and even the guideline makes it explicitly symptom-contingent. This is completely clownish and they know that plenty of patients are still being advised this anyway, there is zero evidence that such programs do any better than the usual "just exercise" that most patients get, and they're still getting it.

It doesn't even advise against it anyway, it simply says that it isn't curative and may cause harm when PEM is present. It's very clear about it. What ridiculous nonsense in what is supposed to be a serious profession.

It's actually similar to Thalidomide. Remember thalidomide? It treats other stuff. I don't remember what. Do not use while pregnant, ever, but if not it can be useful. This is similar and these people are completely unserious pretending otherwise, even worse with their fake victimization over sick people telling them explicitly that it has already harmed millions.

 

I have just sent this response to the website: If Professor Paul Glasziou had been listening to his patients with ME/CFS he would know that in addition to the very poor level of evidence from clinical trials to support the use of CBT and GET as treatments for ME/CFS there was also a great deal of patient and clinician evidence to indicate that people with ME/CFS found CBT to be ineffective and many more reported that GET had made their condition much worse - with some ending up in wheelchairs as a result of inappropriate activity management advice.

All the specialist referral services for people with ME/CFS here in the UK are now following the recommendations in the new NICE guideline which downgrades the use of CBT and the complete removal of GET.
I find it surprising and very disappointing that there are still objections from doctors in Australia to changes in the way that ME/CFS should be managed that would be of considerable benefit to people who have this disease in Australia.

Dr Charles Shepherd
Hon Medical Adviser - ME Association
Member of the NICE guideline committee on ME/CFS

 

I think it is a pity that NICE produced this comment:

“In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.”

The committee may have listened to people with ME but the guideline is based entirely on the evidence from the trials. It has no business to be "balanced". It is evidence-based.

 

And the biopsychosocial ideologues make this very claim for themselves. Even though they only ever use their own perception of it. So I don't know what that makes of it, I guess they don't think much of that lived experience and testimony except when they cherry-pick what looks good for them. But we knew that, it's just massively hypocritical of them yet again.

 

Association Chairperson, Vera Kindlon, was one of 55 co-authors of this letter "Global ME community is unified in firm support for the NICE 2021 ME/CFS guideline" organised by the @WorldMEAlliance in response to a recent commentary by CBT & GET proponents

https://worldmealliance.org/2023/08...ied-in-support-of-nice-2021-me-cfs-guideline/

 

Thanks for sharing @Tom Kindlon. Glad they have now published.