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

Trish said:
Thanks to those who wrote this response and to those who signed it, including, I see, 3 of the S4ME committee. Good to see us represented.
It's disgraceful that the journal has chosen not to publish this and other responses.
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The S4ME committee only had a very short time to respond regarding signing the letter; I don't think any of us were involved in drafting it. There wasn't enough time to consult with members to see if there was support for the 'Science for ME' name to be added as a signatory in its own right, and the committee felt that we could not sign on behalf of members without that consultation. I think there was some degree of confidentiality prior to the response being submitted that also would have made public consultation difficult.

Has anyone heard anything from NICE regarding the timing of their response? I have a small concern that the sort of back room conversations we saw evidence of prior to the publication of the guideline, when influential BPS people applied pressure to senior NICE staff, might be happening now, and might affect how NICE responds.
 
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Excellent response. Thank you to the authors. If only one of the responses we've seen so far is to be published, I think this one is the most effective because it focuses, with evidence, on specific failings in the White et al article. I wonder whether they will respond or ignore it.
 
Tom Kindlon said:
Well done to Dom Salisbury, Robert H Saunders & Jonathan CW Edwards on their e-letter, "Shortcomings in the commentary by White et al." which has just been published
https://jnnp.bmj.com/content/early/...shortcomings-in-the-commentary-by-white-et-al
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Published on: 27 July 2023
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:confused:

Solid reply. I think that between the various responses, even with most of them not trying to address every single of their points, we will cover most, if not all, of them.

Only question is whether truth and professional duty actually matter. But all this press over such petty whining is making a lot of medical academia look terrible and horribly biased, almost hostile to the lived experience of patients. Which the ideologues constantly emphasize, always cherry-picking the small % that suits them.
 
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Tom Kindlon said:
Well done to Dom Salisbury, Robert H Saunders & Jonathan CW Edwards on their e-letter, "Shortcomings in the commentary by White et al." which has just been published
https://jnnp.bmj.com/content/early/...shortcomings-in-the-commentary-by-white-et-al
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This has been reported for several decades, in multiple countries, and with little indication that harms are due to improper implementation of GET. (7)
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I think a good paper to cite on this point is:
PACE investigators' response is misleading regarding patient survey results
Karen D Kirke. J Health Psychol. 2017 Aug.
https://journals.sagepub.com/doi/10.1177/1359105317703787

It is very frustrating that Action for ME under Chris Clark allowed Peter White to influence them to suggest their data showed the problems with GET were due to proper implementation. I had held on to the original files and gave them to Karen to help her challenge Peter White’s spin on this.

Edited to add: Peter White was even thanked in one or more of the Action for ME documents by name.
 
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Paul Glasziou, one of the 51 signatories of the White et al paper posted a link to it on Twitter and insisted anyone replying should link references to support any criticisms. There were lots of replies, all those I've seen polite and many with evidence links.

He has now tweeted on that thread saying he is taking a week away from the thread for his mental health and blocked all replies except by his selected few who he says made constructive comments. I am one of the many now blocked from replying, yet all I did was provide some links to relevant evidence and ask him to reply with evidence.

I wish him well with his mental health, but really, if you post something as full of holes as a sieve, surely you shouldn't be surprised when people shine a light on the holes.
 
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