NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence, 2024, Barry et al.

Fake scandal on page A1. Relentless prime-time TV coverage for weeks.

Retraction on page A28 of the week's least-read day months later.

They know they'll always get promoted for their lies, and countering of their lies never get any air. That's why they don't care.

I seem to remember the rant being paywalled? Right? And now it's free access. But NICE's response is paywalled? And there is no link or mention that NICE responded, so it's basically hidden from view. If so, wow, these people are just brazenly corrupt, since it's their own damn journal.

 

I imagine so, but their business is to rake in lots of money for publishing stuff on their website. As long as institutions are prepared to pay it, they'll keep charging it.

And NICE knows perfectly well that someone will post it on Twitter anyway, for people who can't access it via institutions.

 

Does anyone really think the authors of the original paper paid £4k to make it open access?

Totally unrelated, but was it one or was it two of the authors that are on the editorial board of the journal?

 

https://jnnp.bmj.com/pages/editorial-board

Alan Carson, University of Edinburgh, UK is an Associated Editor.

Jon Stone, Western General Hospital Edinburgh, UK is on the Editorial Board.

 

Their institutions probably did one way or another. It is standard now.

Almost everyone senior in a field is on the editorial board of lots of journals. I forget how many editorial boards I was on. It isn't a big deal. You even get key papers rejected.

 

Not sure if everyone knows this, but here is Jon Stone's weird website:

https://neurosymptoms.org/en/

 

They do have capacity to be flexible. I had a response I had published to an article freely available when it was initially paywalled. I pointed out to the editor that the original article was open access and they made my work available. Probably a case of asking.

 

Oh my god thats the website I got referred to by the neurologist who told me I was “doing this to myself” to “ditch the wheelchair” and that my ME/CFS is caused by a FND and I need to do “lots of sports” and get “lots of therapy” to get better because I clearly have some trauma deep down causing all of this.

Mind you he came to this conclusion while only asking me about a single symptom and ignoring all others and only took 5 mins to make a physical in which me made me exert to prove to me that “I can do it”.

Thats when I stopped going to the specialists I constantly got referred to

 

It's the go-to website for neurologists when confronted with patients whose symptoms they can't explain. Lots of reports on social media of being given a scribbled note with Stone's website written on it and told to go away and never come back.

 

Somehow, I very much doubt that the authors of the rant had to pay that amount. Somehow.

 

Gremlins.

 

Offer of PDF on 1st page of this thread.

 

Dave Tuller on Twitter,

"Earlier today I spoke with @adambeyoncelowe about the very robust response from @NICEComms to the charge from GET/CBT ideologues that the 2021 ME/CFS guidelines process was marred by 8 purported "anomalies"

 

Paywall has been removed, https://jnnp.bmj.com/content/early/2024/02/28/jnnp-2023-332731

 

Should think so, too. Anything concerning a NICE guideline should be public domain where patients can access it freely.

 

Hooray, excellent to see this important response now freely accessible for all to see.

 

ME Research UK:

“Criticisms of the guideline discussed in this paper are misplaced” sums up pithily NICE’s rebuttal of 8 criticisms levelled against the organisation over charges of a ‘controversial U-turn’ concerning changes to GET and CBT contained in the 2021 ME/CFS guideline. For an organisation which prides itself on following best practice and international standards the comments could not go unanswered by NICE – https://tinyurl.com/mrxss73w

 

I'd have preferred "criticisms of the guideline discussed in this paper are balderdash", but it's still good to read!