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

I don’t think they’ll make the mistake of leaving a text trail again. I imagine a few people coukd have been invited out for a beer.

 

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

 

Well done and thank you.

 

I was beginning to think the ranks had closed completely but not quite. I can say that I think it is an excellent letter because it was composed by others. Nevertheless, it also expressed my own views better than I could.

 

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.

 

ha. good spot.

 

Yes, I remember it was similar with the ME Action UK response where it hadn't been published online on that date but a later date.
It may be the date it was submitted?

 

It was. Perhaps it normally doesn't take them this long to consult their lawyers.

 

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.

 

Magisterial. Thank you, authors.

 

@Caroline Struthers has posted the response on Twitter - thanks for running the gauntlet.
[https://twitter.com/Healthy_Control]
Caroline Struthers
@Healthy_Control
·
4h

This response by
@domsalisbury
@RobertHMcMullen
and Professor Jonathan Edwards to the commentary about anomalies in the NICE review process for the ME/CFS guideline provides links to the evidence behind its claims https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463.responses

 

Someone should write a response called "Anomalies in "Anomalies in the review process and interpretation of the evidence of the NICE guidelines for chronic fatigue syndrome and myalgic encephalomyelitis""

 

Nailed it.