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

We have the "forthcoming individual patient data meta-analysis of exercise therapy trials for CFS/ ME" to look forward to. I can hardly wait.

 

I think the Sonya Chowdhury/Action for ME letter is well pitched for a Newspaper context. I hope it gets published/posted. I look forward to the various more considered responses to the journal article too.

I was wondering if the timing of the paper and the KCL press release was deliberate or just a chance consequence of the Journal’s review process. Didn’t the BPSers previously launch an ME related PR campaign in the lead up to the news reporting silly season, when the lead science and health editors may be on holiday but the papers are also on the look out for page fillers?

 

All of which, in most cases, is entirely irrelevant since the vast majority of patients will never actually go through a GET program and instead be simply told to exercise, a bit more each time. It is completely cynical and asinine to pretend that how it works in reality is irrelevant. It's how it's used in real life that counts, not bubble experiments that bear little relation to reality.

And of course most patients will already have tried that before they even see a GP. This is widely reported and extremely cynical to pretend it isn't. It's even common in some papers, the latest Knoop one even says so, that patients' activity levels are actually not an issue, even as they make it the target they mean to fix.

 

I’m looking forward to reading NICE’s “detailed response” to the JNNP analysis, referred to in the Guardian article. I hope it doesn’t disappoint.

When I complained to BBC and Ofcom about that dreadful The Life Scientific interview with SW in 2017, one of the reasons my complaint was rejected was because SW’s views on treatment were supported by NICE and the CDC. It is both ironic and a mark of the progress [we’ve made] that NICE is now being attacked by the BPS enthusiasts.

I can’t remember, was the round table meeting minuted or recorded?

Unfortunately this doesn’t seem to apply in a room full [of] eminent people.

The frustrating thing for me is how many supposedly intelligent people appear to have been oblivious to the muddled thinking of PDW and colleagues. In some cases that may be because they aren’t very intelligent but more often I think it’s because they don’t care or have personal or professional conflicts of interest. Intelligence should not be assumed to correlate with integrity or decency.

Also, I think it was James Randi who said that in his experience scientists could be the easiest people for illusionists to trick. I think he suggested that they tended to be more credulous.

What I don’t know is whether PDW and co genuinely believe in what they say anymore. Perhaps some do and some don’t but don’t have the courage or incentives to defect.

Having NICE on our side is significant progress. If former BPS proponents were to start to defect, that would surely be the beginning of the end.

 

And if, as the Dutch have informed us, physical activity has nothing to do with fatigue, what is the point of GET in the first place? Why increase physical activity if it is irrelevant to how people feel???

 

Why are patients even in treatment if the fatigue is not related to activity levels? They could just do whatever they wanted regardless of how fatigued they felt.

 

Never forget the first rule of cognitive behavioural therapy for post-infectious diseases i.e. their treatment is always affective, no matter the outcome of their study. And then the rationale is changed accordingly.

 

I think the claim that fatigue is independent of activity levels is based on the observation that fatigue questionnaires show improvement with CBT but activity does not increase. One interpretation is that fatigue is independent of activity levels. The other interpretation is that CBT is training people to rate their fatigue as improved while nothing has changed in reality.

But if fatigue is independent of activity levels, then patients could just be doing whatever they wanted even with maximum fatigue scores. It's obviously complete nonsense.

 

I fear not. These days decision makers in Royal Colleges are almost entirely airheads. They will not realise how silly they look because they do not actually get the arguments.

As has been pointed out a room full of intelligent people is not the same as a roomful of eminent people. Intelligent people are relatively hard to come by outside S4ME.

I sometimes wonder if an outgoing officer at NICE set this all up to get his own back on a load of up themselves idiots who had been giving him grief for a very long time. Somewhere along the line some of those rare intelligent people were put into key roles.

 

As has been said, how can it be that some of these people have treated people with ME, but understand so little about the condition?

It must take an exceptional ego and an exceptional lack of intellectual curiosity to miss so much, both in terms of the academic debate and the lived experience of a patient group that you have worked with over decades.

 

MEAction UK's submitted response to the Journal of Neurology, Neurosurgery & Psychiatry.

https://www.meaction.net/2023/07/12...apid-response-to-the-jnnp-in-support-of-nice/

 

very good i thought

 

In the second paragraph they probably mean Leonard Jason rather than Jason Leonard?

 

Good point about silly season approaching and whether any who might be able to provide friendlier articles might be able to bear that in mind and provide a few alternative spoon-feeds

 

No, the press release is written when an article is published (usually if it's deemed as high impact and might be reported on in the media) by someone in the department/at the university. Most universities do this. Nothing stange about it.

 

Cognitive dissonance seems to be a pre requisite