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Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]
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Charles B.
Senior Member (Voting Rights)
The novel interventions for those who don’t respond to GET or CBT will be drivel like ACT.
Also, there is a terrific team of clinicians and researchers from Mass General Hospital working in this space. If the David Perez who signed on to White’s defensive manifesto is the Perez who runs the FND clinic at MGH, then I am flummoxed. I’ve never once heard his name in conjunction with ME during the years I’ve been ill and received treatment there. It’s clear the FND crowd see the downgrading of methodologically dubious research as a threat to their little cottage industry. I hope someone from our MGH camp rebuts this and presses him to defend his position.
Also, there is a terrific team of clinicians and researchers from Mass General Hospital working in this space. If the David Perez who signed on to White’s defensive manifesto is the Perez who runs the FND clinic at MGH, then I am flummoxed. I’ve never once heard his name in conjunction with ME during the years I’ve been ill and received treatment there. It’s clear the FND crowd see the downgrading of methodologically dubious research as a threat to their little cottage industry. I hope someone from our MGH camp rebuts this and presses him to defend his position.
So according to White et al PEM shouldn't be required despite WHO, IOM (now NAM), NICE.
Question - Can we compile a list of government bodies and national medical associations/bodies that clinically require PEM in ME?
(To use as evidence from various countries (to White and supporting evidence for NICE) about PEM as clinically significant in ME.)
Question - Can we compile a list of government bodies and national medical associations/bodies that clinically require PEM in ME?
(To use as evidence from various countries (to White and supporting evidence for NICE) about PEM as clinically significant in ME.)
Mithriel
Senior Member (Voting Rights)
This is a tactic they have used before and the FND people have used to legitimise their theories.
There is now a paper with this title and backed by this number of scientists which will never be read but can be quoted forever.
If the journals were not corrupt this would not happen as such rubbish would not be published.
It is making me feel sick. My reaction to this news makes me realise I actually have PTSD as the only result of the past 35 years of their involvement. A new horror that destroyed my wellbeing became as much a part of Christmas as jingle bells.
There is now a paper with this title and backed by this number of scientists which will never be read but can be quoted forever.
If the journals were not corrupt this would not happen as such rubbish would not be published.
It is making me feel sick. My reaction to this news makes me realise I actually have PTSD as the only result of the past 35 years of their involvement. A new horror that destroyed my wellbeing became as much a part of Christmas as jingle bells.
Esther12
Senior Member (Voting Rights)
I was expecting them to have drawn in people like Guyatt. But it seems likely that there are going to be multiple prongs to this.
rvallee
Senior Member (Voting Rights)
Pretty much as expected, that this is basically the people who did this "research". Couldn't possibly be more biased and conflicted, especially how much emphasis they place on PACE, which was run by the very people who invented this treatment model and had been marketing it for years. Zero effort on pretending to be independent.
The weird name is Paul Glasziou, who I guess is only interested because he thinks EBM with random interventions is the future of medicine.
But literally everyone involved is as heavily conflicted as positive "customer reviews" from employees of the company. It's hard to put in proper context how corrupt and incestuous their thought bubble is. Strong parallels to the frauds of Theranos, and recently the FTX debacle. When people are free to do as they want in secret without oversight, failure occurs.
rvallee
Senior Member (Voting Rights)
The possibility that this nightmare could go one past our lives is terrifying. And it's very real, given how little Long Covid has changed. No need to bring PTSD to it, it's like seeing people line up to sharpen their knives knowing what they intend to do with it. It's a threat to our survival, the only reaction to this is disgust and wanting to get the hell out of there.
It's also telling that they seem to make no mention of Long Covid, or any relation to this. Unless it's tucked somewhere in there. They can't even make it about the newest victims to their scam, all they can think of is themselves.
This is important.
There is IACFSME - I can't see them organising an international response, but can anyone in that organisation say what approach they will take to respond to this? Lily Chu @hope123, Keith Geraghty?
There is the IAfME or whatever acronym they are using. There was a brief flurry of activity and a consensus statement signed by lots of patient organisations a few years ago, but then nothing. Can Sonya Chowdhury of AfME or AfMe in general give us an update on what is happening with this international organisation that I believe AfME established and supported?
I guess there are European organisations that might be of use.
Esther12
Senior Member (Voting Rights)
Weren't Wessley, PACE etc involved in some PR media push over a past Christmas? I guess it's a time where there are predictably less news stories around and journalists can be grateful for stories they can have pre-prepared. It can also make it more difficult for people to respond in a timely manner. Maybe the same will happen this year.
Dolphin
Senior Member (Voting Rights)
Just to clarify - According to this page, the individual patient data meta-analysis review being done by Cochrane was withdrawn, I think around 2018.
Did Cochrane reinstate that review? Or has another group initiated this review?
Jonathan Edwards
Senior Member (Voting Rights)
I agree, it seems a standard and fairly full line up of both those who have in the past managed to pass muster as respectable academics and those who one might have thought the former might want to distance themselves from.
The lack of distancing shows that this is just a club of charlatans with common vested interest. Plus of course the sort of friendly sealion Garner, a bit like a fifteen-going on seventy-year-old William Hague at a party conference.
I don't see NICE giving in to this. NICE actually took a stand and won out, at huge cost.
But it might be an opportunity to raise another response from sensible people.
The current situation in the UK is that everything is going down the plughole. That most likely will mean that nobody notices either White or any response but there might just be room for persuading some people who matter what a waste of money all this stuff is.
Institutes that require PEM as the core issue for ME; I haven't verified all of these, but it is quite probable that all of these are on board, certainly the CDC and NIH:
The CDC, and NIH. Also possibly written up in the Canadian Institutes of Health Research, (CIHR) an arm of Health Canada. As well, probably all ten Health Ministries for the 10 Canadian Provinces and the Territories.
I think the Mayo Clinic revised its case definition with assistance from MEAction; presumably it would include PEM.
ETA: The Cleveland Clinic is part way there in saying, an increase in fatigue after mental and physical exertion.
ETA#2: Just checked the CIHR website. It has PEM as the hallmark issue. I added "CIHR" in the 2nd paragraph.
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Reading the brilliant comments above - I'm reminded of a crude analogy --- shit or get off the potty---
NICE reconvened to give them a further opportunity to set out their case --- not a peep!
"And remember that the Presidents of the Royal Colleges of Physicians, Psychiatrists, Paediatricians and GPs sat around a round table with the committee officers to give them a chance to present their criticisms and they didn't make a peep. When the chips are down there is nothing to say - the evidence was not there and even if you labelled on the benefit of the doubt it was not cost effective.
NICE reconvened to give them a further opportunity to set out their case --- not a peep!
"And remember that the Presidents of the Royal Colleges of Physicians, Psychiatrists, Paediatricians and GPs sat around a round table with the committee officers to give them a chance to present their criticisms and they didn't make a peep. When the chips are down there is nothing to say - the evidence was not there and even if you labelled on the benefit of the doubt it was not cost effective.
rvallee
Senior Member (Voting Rights)
I noticed that as well. Given the usual patterns, there's a good chance something like this is happening, and I would bet everything on Cochrane being as awful as they can. Not the first time they've hinted at something weird behind the scenes that ended up happening.
Esther12
Senior Member (Voting Rights)
This was in the COI section of the Lancet commentary on NICE's ME/CFS guidelines - there was a discussion of this at the time: