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

CRG said:
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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.
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Unsurprisingly from KCL
Researchers produce systematic critique of 2021 NICE guideline on CFS and ME
A new analysis of the 2021 revision of NICE guideline for chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME) has outlined eight shortcomings in the review process and its interpretation of evidence.

Authored by over 50 international specialists in this area, the study questions the NICE review process for this guideline and its use of scientific standards in considering the evidence. Researchers suggest that the consequence is a guideline that deviates from the scientific evidence and will result in patients being unable to access treatments that may help them.

Co-led by researchers from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN), King’s College London, the study highlights that implementing the recommendations from the 2021 review could result in patients missing out on helpful treatments which could potentially increase the risk of persistent ill health amongst those with CFS and ME.
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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
 
The Guardian has thrown the ME community under the bus, using bias and misinformation
The Guardian has published a new article on the disease myalgic encephalomyelitis (ME). However, the original copy was littered with errors. Moreover, it landed on the side of discredited medical professionals and their supposed treatments – yet failed to mention their own conflicts of interest. Overall, the Guardian‘s article was yet another hit piece on a community whom the medical establishment, state, and society have abused for decades.
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ME/CFS: Guardian's latest hit job riddled with errors and bias (thecanary.co)
 
Lou B Lou said:
What the hell has changed.
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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.
 
JemPD said:
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.
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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.
 
Dolphin said:
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.
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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.
 
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