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

They do have a history of hyperbole. They framed a few inoffensive comments on twitter as "harassment" in the Reuters hit piece, then later admitted that it doesn't even bother then, that what they don't like is simply that we counter their BS officially and that they have no argument against it because we use proper methods and channels. They are still merely propped up by the raw application of power that is willing to crush us endlessly.

Basically, their complaints pretty much amount to us saying anything is lèse-majesté. They reject the very notion that we should ever criticize anything they do.

 

For what it's worth, I submitted a response yesterday. I focused on the roundtable, other institutions agreeing with the low quality and unfitness of evidence, and the fact that NICE rejects all the accusations.

Maybe we should have a thread with multiple responses if they don't get published. Maybe even try to get them published elsewhere? It's possible that they simply censor all the responses. It's not as if there's anything we could do about it. Like, what, write more rapid responses?

 

Sounds good. Thanks for doing it.

 

Have they said they will do this?

 

Can’t help but feel that all the World ME Alliance members and others who have written, should publish now too.

From what @Trish shared, the BMJ has rules that seem to give them wiggle room to use whatever timescales they like to publish, so, one would hope that those writing would be taking a decision on whether they believe there is a realistic prospect of the journal publishing their responses (is 14 days, working days or calendar days, what contact/acknowledgment have they had from the journal re their submissions?).

Publishing on their website didn’t seem to stop the ME Action letter getting published in the first place by the journal if my recollection of the timeline is correct (happy to stand corrected on this if am wrong), but, maybe there is presumably a calculation that mass publication outside of the journal could jeopardise a rapid response publication. Who knows..

 

All credit to @Trish for giving me the motivation to do it. There's something about seeing other people here try that makes it easier, makes it seem more valuable.

 

Hi Tom, I submitted on the 19th, then again on the 20th. So, I'll give them until Friday before I chase and/or resubmit a new one.

 

Speaking of this, I received no email confirmation that mine was under consideration. I think there should be one?

 

Is there any further information on his departure from Recovery Norway?

 

Nope you get a screen confirmation at time of submission. Then, if they decide to publish you get an email.

I submitted my rapid response twice and still no email, so I emailed the editorial office to confirm. They received two rapid responses so I know they got them.

 

re your eta: yes, I've just sussed that out!

 

Trial By Error: That Whine De Coeur about NICE’s Rejection of GET/CBT Regimen, and ME Action UK’s Disappearing Rebuttal

"On July 10th, the Journal of Neurology, Neurosurgery, and Psychiatry (JNNP) published what can only be called a whine de coeur from a bunch of academics and investigators on the wrong side of a dispute with Britain’s National Institute for Health and Care Excellence (NICE). Their article was called “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis.”

The lead author was Professor Peter White, one of the three co-principal investigators of the PACE trial. The corresponding author was another of the PACE triumverate, Professor Trudie Chalder, and the third, Professor Michael Sharpe, signed on as a co-author—along with four dozen of their colleagues. (Perhaps they should be referred to as co-signatories rather than co-authors; it is hard to believe they all had much of a hand in crafting the piece.)

The article was the latest effort of members of this cabal to push back against the 2021 decision by NICE to reject the psycho-behavioral treatments for ME/CFS (or CFS/ME, as the article calls it) that they have championed for three decades–specifically, graded exercise therapy (GET) and a specific form of cognitive behavior therapy (CBT). Given the extensive list of co-authors and the breadth of their argument, it is surprising that this declaration appeared in a specialized neurology journal rather than a more prominent and widely read general medical journal. (JNNP is published by the BMJ group but is far less well-known than The BMJ, the group’s flagship title.)"

https://virology.ws/2023/08/03/tria...imen-and-me-action-uks-disappearing-rebuttal/

 

OK good to know, I would have re-submitted otherwise.

 

I assume that's a good thing???