NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

[FMMM1]

A profound thank you for that intervention --- I needn't say it was coherent - you know that.

The sooner we get away from defending crap science the better - we can then focus on trialling things that might help to improve the quality of peoples lives; i.e. trialling them in a way that demonstrates whether they work or not.

 

[Barry]

I also think an apology might be due for implying that somehow as an expert for the NICE committee I was prejudiced in my opinion.

Fully agree. I think an apology to NICE is also due, for suggesting them to be so incompetent and naive as to be duped by any such prejudice. The point is that NICE have shown the ability and bottle to recognise any prejudice, from whatever quarter, and to not be bamboozled by it. The purveyors of such prejudice are finding that a bitter pill to swallow.

 

[Adam pwme]

I forgot to post my tweet with @Jonathan Edwards letter

 

[Robert 1973]

Yes, I had formulated a view on the evidence before being asked. My view was formed after hearing Peter White making a presentation on PACE and then reading the papers.

For any newcomers, particularly those who have come to this thread from the Lancet, this is what Jonathan previously wrote about Peter White’s presentation:

“The way I look at this stems from arriving at the 2014 CMRC meeting in Bristol and listening to Peter White give a 15 minute tirade on abusive patients attacking science. I was blown away by the sheer nastiness of the whole thing. The sneering and the disingenuous presentation of rotten data was something I had never seen before. I had seen something a bit like only once before at a rheumatology conference where a medic from the Hammersmith Hospital joked about patients dying. On that occasion uneasiness in the audience was palpable. In Bristol delegates either lapped up White's story or knew how to keep their cool because this was nothing new to them.”

(https://www.s4me.info/threads/paul-...les-and-other-media.15629/page-38#post-328847)

 

[daftasabrush]

IN case anyone is looking up reference 18 from:
https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)00183-0/fulltext

I would urge Dr Flottorp and colleagues to stop making complete fools of themselves by indicating a complete lack of understanding of how to judge the quality of clinical trial evidence. I also think an apology might be due for implying that somehow as an expert for the NICE committee I was prejudiced in my opinion. Readers of this thread will see that my approach has been purely to look at evidence quality with no bias towards one thing or another.

The irony is that the charge of competing interest rests entirely on those writing the Lancet comment. I have no competing interest at all.

My opinion of the PACE trial was not influenced by patients. It was created by listening to Dr Peter White presenting his view of patients being anti-science, to an audience including a lot of patients. (Tact was not a strong point.) Starting off by flashing up a single data slide with a truncated Y axis and a minuscule difference in subjective scores between test and control told me all I needed to know.

Simon Wessely designed the PACE trial, I believe there is evidence that his name was not used for ethics approval and White was used instead because with Wessely at the helm the protests would have been extremely loud. Despite being omitted from the list of authors, the original PACE study credits SW as a centre manager for one centre, with designing the trial, digging into details despite being a psychiatrist entirely invested in disbelieving patients or physical evidence Wessely also provided the Specialist medical treatment of the failed SSMC (sp?) branch, I think he was on the trial management group too? I could not find anything on ethics about standards for who should be included on the author list but omitting SW defies logic giving his substantial contribution to the disastrous trial. Let's not pretend White, Chalder and Sharpe as principal investigators were the only ones steering the ship to its foregone conclusion (as Wessely put it). Similarly, it also used Chalder Fatigue Scale which Chalder credits Wessely with proving the initial data for.

 

[Sean]

PACE has Wessely's fingerprints all over it. I have no doubt he was a major and active influence on it from day one.

 

[Trish]

Some off topic posts have been moved to a new thread:
Children, disability, CBT and exercise.