New NICE guideline on chronic fatigue syndrome: more ideology than science? 2022, Flottorp et al

Hutan said:
We see, again and again, the characterisation of biased trials using only subjective outcomes as 'patient-centred', as being concerned with the patient's experience of their illness in a way that a trial with objective outcomes is not.
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Barry said:
Trials must utilise methods which minimise bias the very best that is scientifically viable, else they are worthless. Trials have the major advantage over diagnosis, that trial conditions can be prescribed to best minimise bias; something likely not possible at the diagnosis stage.
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If anything, trials assessing subjective factors need to use the most robust of possible methodologies, precisely because they are so open to bias.
 
Sean said:
The new guideline presents strengthened evidence, but a major shift in interpretation. How could this happen?

Gee, that's a tough one. I mean, it's not like they could have got it so wrong in the previous guideline. Nope, definitely couldn't be that. :bucktooth:
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The whole point of doing a review is to see if anything needs changing, including re-interpretation of existing data.
 
Notice that the authors concentrate entirely on criticising NICE, and don't mention, let alone rebut or refute, IOM, CDC, or any other authoritative reports, reviews, or institutions who have also independently reached similar conclusions to NICE (and at least some of which also require PEM in the diagnostic criteria).

Cochrane, however, gets a full paragraph, and one of the cited references is a statement against NICE from the UK Royal College of Physicians.

Then, in the final paragraph, they accuse NICE of being inappropriately selective and ideological in its handling of evidence and argument.
 
I think it is quite useful to have this document to cite. It goes further than ever before in indicating just how little the authors understand about clinical evidence quality. The arguments should look stupid even to a student.

The bit about subjective diagnostic criteria is plain rubbish. If you want to diagnose a Mercedes Benz you look for the logo on the bonnet. If you want to know if the garage fixed it you see if it starts. People working on clinical evidence should have a rather better understanding of how information is used to make decisions.
 
Andy said:
So the NICE guidelines changing wasn't progress? The funding of DecodeME wasn't progress? I won't deny that Long Covid is likely to speed things along, or at least I hope it will, but I think that it is incorrect to suggest that we weren't making any progress at all, and to do so demeans the efforts of many.
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And most of the NICE GL was drafted before LC was a thing.
 
Jonathan Edwards said:
I think it is quite useful to have this document to cite. It goes further than ever before in indicating just how little the authors understand about clinical evidence quality. The arguments should look stupid even to a student.
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It's a common behaviour pattern amongst those trying to prove the worth of the worthless. The more their duplicitous ways become exposed and out of the shadows, they typically have nothing more to respond with except more of the same, but in plainer sight. This behaviour pattern is also very evident in the UK at the moment ... but :muted:.
 
Kalliope said:
How could this happen [2021 guideline]?
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Someone's probably covered this but surely the question is how could the 2007 guideline have happened? If anything, that should be the subject of inquiry.

Kalliope said:
Since then, more randomised trials and systematic reviews have provided additional evidence supporting these recommendations.
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Yip in the age of the FitBit researchers continue to rely on questionnaires - unblinded studies with subjective outcome criteria. So 10 years on (from PACE?) there still hasn't been any assessment of these supposed interventions. There's actually a thread here which provides some ideas about how to assess these types of intervention [https://www.s4me.info/threads/if-and-how-to-research-pacing-discussion-thread.22860/]

So the Lancet is just some coffee table publication - look here to reinforce your prejudices!

Thinking is challenging - but with the Lancet you skip the challenge.
 
strategist said:
Reference 18 is a forum thread here: https://www.s4me.info/threads/nice-...deline-committee-has-now-been-published.6197/
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The context for reference 18:

"We know from social media that some of the committee members and two of the three expert witnesses had negative opinions regarding the interventions considered.17,18"

They also seemed concerned that "prior beliefs" of the guideline committee weren't declared in the NICE interests register (ref 16).

What about their own "prior beliefs"?

The final paragraph is sad, because they seem to be describing precisely what they have been doing themselves for the past 30 years.

If anyone is thinking of countering this, they will need to insist that it appears in the same format - as a Comment - and not as Correspondence - and ideally that it is open access. Flottorp et al. have been given much more space than would normally be allowed for a comment (usually <750 words and 10 references) - at ~1200 words and 29 refs.
 
You know I'm thinking here but there's a good way to judo this against them with the silly argument that PEM can be discarded because one can't rely one a single subjective symptom, something we have been insisting for decades and here they are attempting to argue, but only for PEM while allowing them to continue obsessing with what they call fatigue.

Not that it matters but them insisting that a single subjective symptom is not good enough, a fact that is reflected in the better definitions of ME that do not restrict to their own preferred definition of chronic fatigue, then they should comply with the same, after all it is their currently fashionable argument.

Here they are arguing this because they're not relying on the single symptom of fatigue for this junk study, using instead a mish-mash of vague "complaints", but most of their work does just that, and not just on fatigue. If they go about having to accept that it's not a valid way to do things, according to themselves, then they obviously can't go around doing exactly this.

So it would kind of force them to choose between the bulk of their work, and their current obsession. At least if this were a serious process involving serious people working in an accountable framework.

It would of course leave out all MUS and FND, they are fully generic, but would at least affect all the work done strictly on the one symptom of chronic fatigue, as well as a few others like IBS, or anything built out of a "primary symptom of" anyway.
 
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Lucibee said:
They also seemed concerned that "prior beliefs" of the guideline committee weren't declared in the NICE interests register (ref 16).

What about their own "prior beliefs"?
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One fundamental feature of reactionaries is an attitude in which they must be protected by rules and the laws, while their opponents, and we are clearly hostile opponents in their belief system, are fully bound by them. They can abuse the rules and process on us but fairly applying the rules and process on them is unfair. They can insult and disrespect us, from a position of authority, while we can't even speak for ourselves, it may make other people sick, or whatever. They must have unlimited platforms to speak out, while we don't even have the right to speak. They must promote a handful of testimonies from people with conflicts of interest and "hear the patients", while working their hardest to silence us and dismiss millions of testimonies as mere anecdotes.

There's a famous quote, I think from Napoleon, on this: "for my enemies, the law, for my friends, everything". Exact same thing in politics. I hate how not just similar but absolutely identical this all is.
 
rvallee said:
You know I'm thinking here but there's a good way to judo this against them with the silly argument that PEM can be discarded because one can't rely one a single subjective symptom, something we have been insisting for decades and here they are attempting to argue, but only for PEM while allowing them to continue obsessing with what they call fatigue.
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This.

If they reject PEM, then they cannot invoke fatigue.
 
IIRC correctly, they trotted out the 'cancer has PEM' thing during the consultation, but the reference they gave was for malaise in cancer. It wasn't post-exertional. There are a lot of familiar borrowings from various RC and clinic responses, so I would check the references--as a lot of the RCPsych ones were misused or fabricated (the references said the opposite of their points).
 
I noticed that at the end of the article it says (my bolding):

KGB reports that he is one of the authors of the Cochrane review about CFS/ME and exercise therapy and he is currently involved in the work with a review based on individual patient data that is about CFS/ME and exercise therapy.

HK receives royalties for a treatment manual of CBT for CFS/ME and is currently preparing a review based on individual patient data of the outcomes of CBT for CFS/ME. ​

KGB is Kjetil G Brurberg and HK is Hans Knoop.
 
Betteridge's law of headlines is an adage that states: "Any headline that ends in a question mark can be answered by the word no." It is named after Ian Betteridge, a British technology journalist who wrote about it in 2009, although the principle is much older. It is based on the assumption that if the publishers were confident that the answer was yes, they would have presented it as an assertion; by presenting it as a question, they are not accountable for whether it is correct or not.

https://en.wikipedia.org/wiki/Betteridge's_law_of_headlines
 
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