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

Wow great spot

 

Staggering is the right word.

I don’t even know where to start as someone who has had (and has ongoing) dealings with an insurer, no doubt influenced by some of these individuals..

I won and they are paying, but not before I was subjected to what my wife described as the worst day of her life, seeing me breaking down multiple times in an assessment that took several weeks to recover from. I try to be rational, but put simply, I loathe these people.

ETA; it’s apparent that so many people with ME have horror stories to tell, whether it be at the hands of insurers, DWP, doctors/GPs, OTs, OHPs or a range of HCPs. It shouldn’t be this way, but so many HCPs have been influenced by these people, who continue to try to put us down and their views/approaches to pwME are wrong as a result of the power they exert. It has to end.

 

or that he and Chalder came up with the whole CBT/GET 'therapy' based on the theory of ME/CFS being deconditioning from fear of exercise and false beliefs of an underlying biological illness, making 'ideopathic fatigue' the primary symptom.
This underpins nearly all their subsequent research for other conditions that always cites their previous research on cfs, being their prime example of 'fatigue'.
The Chalder Fatigue questionnaire is another questionable piece of research that has mainstream implications if any doubt of its accuracy is raised.

 

a question maybe journalists might like to ask.........when was the last time any of these experts attended a conference on ME or CFS? (ones on PPS/ MUS or presentations to insurance companies don't count).

 

I've seen that Hans Knoop will be at a German conference on Long Covid that otherwise has legit experts. Not sure what he is doing there but it's very exceptional for any of them to step out of their bubble.

 

Peer-reviewer?

 

Moss-Morris also missing from the list, but a paper of hers referenced as evidence for the "negotiating" bit:

Supplementary Table 3: Other trials of graded exercise therapy


And Vogt fromm Recovery Norway -- I think hasn't shown up recently in any MUS/ LC/ ME related context?

 

It may be inflammatory to them, but only because they are incapable of coming up with any cogent rebuttals. So they just airbrush away what they are incapable of countering. Do they really not see how pathetic they show themselves to be.

 

Very disappointing that 14 days have now passed & this hasn’t been posted by the @JNNP_BMJ

Unlike another comment that was removed, this shouldn’t fall foul of any inflammatory rule (I have read it)

Readers deserve to see another opinion from the one in the commentary
#mecfs #pwme

 

Well, the other one shouldn’t have fallen foul either.

 

There was only one published, I believe. I suspect there was something going on behind the scenes RE MEAction response, possibly involving the paper's authors, and they curbed publishing responses. But the other responses should now be published.

 

I assume someone from the Alliance will email the JNNP editorial office.

Depending on response, I wonder if it might be worth submitting to the BMJ main site in response to its report on the JNNP article. BMJ main site has always been good at posting responses which are critical of BPS views and research, and I assume it has different editors. Charles’s response was on the BMJ main site, not the the JNNP site, and that seems to be the only response to have been published so far – albeit only partially.

[edit: link to Charles’s letter: https://www.bmj.com/content/382/bmj.p1621/rapid-responses]

 

This response has also not appeared so far on the @JNNP_BMJ site along with one @Joan Crawford submitted

 

££££

 

https://www.theguardian.com/society...scouraging-exercise-is-flawed-say-researchers

In the above Guardian article (11th July) NICE said:

“We will provide a detailed response to this analysis and in the meantime we are confident that system partners and the ME/CFS community will continue to work together to make sure the important recommendations in our guideline are implemented.”


Did NICE mean a rapid response or something else?