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

@Three Chord Monty

That's actually closer to the real figure in my opinion, the 2014 London criteria by Charles Shepherd gives a prevalence figure of 1 per 1000 (0.1%) so that makes 67,330 ME patients in the UK (Google tells me the UK population is 67.33 million).

 

Absolutely!

 

This isn’t in the BMJ as most people would understand it.

 

Thanks. Hopefully there will be a number of responses.
I’ve shared the guidelines you highlighted on Twitter along with a link to the web archive.

 

would be useful to have a transcript of this video; is there one?

 

this isn't a transcript of the video, but a blog he wrote when the pre-print came out

https://thesciencebit.net/2023/01/1...-bemoaning-the-new-nice-guideline-for-me-cfs/

 

This one probably from the website of King's College?

Researchers produce systematic critique of 2021 NICE guideline on CFS and ME

 

Unsurprisingly from KCL
Researchers produce systematic critique of 2021 NICE guideline on CFS and ME

Researchers produce systematic critique of 2021 NICE guideline on CFS and ME - King's College London (kcl.ac.uk)

 

I think there may be a small weakness in NICE’s description of GET in that the ignoring symptoms aspect of GET is more in not decreasing when symptoms occur rather than increasing. I’d need to check exact wordings to see how exactly NICE defined GET.

Related point: Wallman’s exercise program for CFS was also characterised as a pacing programme by her*. White et al are being a bit mischievous by including it alongside other descriptions of GET: it is an outlier in terms of being symptom dependent.

*Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document
Ellen M. Goudsmit, Jo Nijs, Leonard A. Jason &
Karen E. Wallman
https://www.tandfonline.com/doi/abs/10.3109/09638288.2011.635746

 

They aren’t 50 international specialists in the area, unless you believe that ME is FND is functional somatic syndrome is … The contempt is so palpable

 

The Guardian has thrown the ME community under the bus, using bias and misinformation

ME/CFS: Guardian's latest hit job riddled with errors and bias (thecanary.co)

 

changed? not sure what you mean, it feels like yet more of the same to me. This is what we've been dealing with consistently for the last 20yrs isnt it?Especially since 2011 when PACE first was let loose.

I mean sure the odd better piece, notably from Sean O'Neill in the Times, but from where i'm standing they were very much the minority.

 

Perhaps worth tweeting to Frances Ryan ?

 

Press release keeps calling it a study rather than a paper. I’m not sure it would be most people’s understanding of a study e.g. what are the methods? A “commentary” would be better.

 

A ridiculous claim from the press release:

4. In their assessment NICE downgraded all outcomes related to fatigue, considering it to be too subjective to measure. But how else than asking patients how they are can one assess whether a treatment has worked?

 

That's what I meant. The UK newspaper reading public are reading the same dross about ME they read 10/20/30 years ago, more or less. Journalists still calling it Chronic Fatigue/Syndrome, still misrepresenting the patients, our views, our reasons for criticising exercise as treatment, BPS researchers hogging the headlines .... what's changed? Nothing much.

 

Did anyone save the ME Association statement? It was here:
https://meassociation.org.uk/a107
It has been removed from the website and nothing seems to have replaced it (looking at the news section).

Did it contain anything more than the (in my opinion, useful) comments from Dr Shepherd that appeared in some media articles?

 

Yes, I kept seeing the word ‘study’ and thinking what have I missed. The paper is if anything an activist manifesto, rather than a reasoned scientific critique.

A political tactic, to accuse those that disagree with them for doing exactly what they have done themselves.