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

rvallee said:
Probably irrelevant, I assumed it would just be brushed aside, but with the admission that the commentary was written in full by White and the rest merely provided a few comments, isn't it a strict norm in academia that only people who worked on a paper, if it qualifies as that, should be named authors?

Otherwise it's just people endorsing the commentary but being named authors anyway. But it's just a rant written by one dude with a few signatories. And a few of them already basically published the same rant already in another journal. Seems not to fall under academic standards and more in op-ed ones.
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In a big trial or study, I think it could be justified if lots of people who worked on the trial or study itself could be listed as co-authors. But that’s not the case here: many of these people probably had zero input or at most a few words.
 
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Dolphin said:
In a big trial or study, I think it could be justified if lots of people who worked on the trial or study could be listed as co-authors. But that’s not the case here: many of these people probably had zero input or at most a few words.
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The long list of ‘after the fact authors’ illustrates that this is not a study or critique of an academic issue rather an assertion of a group’s opinion or beliefs.
 
Nice hits back at claim of ‘shortcomings’ in chronic fatigue advice
  • Edinburgh Evening News
  • 12 Jul 2023


Health guidance which discouraged exercise among most people with chronic fatigue syndrome is flawed and could mean that patients are missing out on helpful treatments, academics have said.

The NHS describes myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as a long-term illness with a range of symptoms, the most common of which is extreme tiredness. It can affect anyone,but is more common in women, and tends to develop when people are between their mid-20s and mid-40s.

Until the new guideline was published in 2021, treatments included cognitive behavioural therapy (CBT), graded exercise therapy and medication to control pain, nausea and sleeping problems. The latest guideline says ME/CFS is a complex condition where there is no “one size fits all” approach to managing symptoms, and says any therapy will depend on the patient’s preferences.

Now 51 international specialists have “systematically critiqued” the document, suggesting that the “dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the Nice process”. They added: “The consequences of this are that patients may be denied helpful treatments.”

A Nice spokesperson said: “We reject entirely the conclusions drawn by the authors of this analysis. In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS.”

Dr Charles Shepherd, medical adviser for the ME Association, said: “The guideline’s recommendations have been widely welcomed by the ME/CFS patient community.”
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telegraph
Ruling out sport to treat fatigue ‘wrong’
  • The Daily Telegraph
  • 12 Jul 2023
  • By Henry Bodkin


NHS watchdogs were wrong to discourage chronic fatigue syndrome sufferers from being prescribed exercise, researchers have said.

A review has found that guidelines from the National Institute...
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Ruling out sport to treat fatigue ‘wrong’
  • The Daily Telegraph
  • 12 Jul 2023
  • By Henry Bodkin
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Sport!

I vaguely recall reading that some drugs aren’t passed by regulators because although they might be safe if used exactly as recommended, they are dangerous if used in other ways.

Similarly even if something like GET was safe if done correctly (which I don’t believe), it isn’t always going to be applied like that.
 
Can't see the Telegraph piece anywhere in the online Telegraph. Henry Bodkin has written a previous Telegraph nonsense piece on ME.

Edit - The Telegraph has a bad history of removing all the reader Comments on articles on ME. Dr Michael Fitzpatrick (a GP) wrote 2 atrocious articles after NICE was published, one positioning himself as the injured victim of demanding ME patients (a rehash of an article he wrote in 2002 trashing the CMOs WG Report) entitled:

'How I became a target for the ME militants'

the other called

'New guidelines for chronic fatigue treatment are a fudge
ME activists are delighted that ‘graded exercise therapy’ has been rejected, but I fear patients will be forced to live with their symptoms'

Readers had made about 30 Comments to one article and nearly 50 to the other. ALL of the Comments were removed from the Telegraph site some days (maybe a week) after the articles were published. I had read all the Comments, none were untoward, many were informed and critical of Dr Michael Fitzpatrick's articles.
 
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Dolphin said:
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?
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There was this new post today. In terms of ME Association comment, it just contains the Dr Shepherd comment that appeared in some media articles:
The ME Association and NICE robustly defend the clinical recommendations for managing ME/CFS - The ME Association
https://meassociation.org.uk/2023/07/mea-nice-defend-clinical-recommendations/
 
Apart from the fact that the evidence for CBT and GET simply wasn't good enough to reach rock bottom to start with the thing that really put the lid on all these 'anomalies' for me was the response from healthcare professionals both on the NICE committee and at Round Table that:

'Nobody uses the treatments as described in PACE now anyway.'
To which a well known patient advocate and subsequently a well known NICE officer replied something in the line of - 'well then current CBT and GET practice has no evidence base at all.' only better phrased.

What Peter White does not seem to realise is that if anyone tries to raise his 8 arguments in a room full of intelligent people it rapidly becomes clear how hopelessly muddled, irrelevant and contradictory they are.
 
Jonathan Edwards said:
What Peter White does not seem to realise is that if anyone tries to raise his 8 arguments in a room full of intelligent people it rapidly becomes clear how hopelessly muddled, irrelevant and contradictory they are.
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Yes, and surely this has to be the final bleat of the expiring sheep.

The story's only just relevant enough to warrant small items run online for a few hours, and not only is it full of holes, it's the only one he's got. It's unlikely he'll get it up on legs again.
 
Jonathan Edwards said:
'Nobody uses the treatments as described in PACE now anyway.'
To which a well known patient advocate and subsequently a well known NICE officer replied something in the line of - 'well then current CBT and GET practice has no evidence base at all.' only better phrased.
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Damn o_O

I can't participate in the discussion atm., so I'm trying to do my bit by snailing away at my writing. But I'm reading this thread with interest on my phone. Thanks everyone for your contributions! :)
 
Statement from Action for ME on fb

Action for M.E.
·

As a World ME Alliance member (our CEO Sonya Chowdhury is co-chair) we have joined global colleagues in writing to The Guardian to refute the outrageous claims from a small group of researchers that the 2021 NICE guideline for #MyalgicEncephalomyelitis is flawed.
The arguments presented by these researchers have repeatedly found to be lacking, and clear conflicts of interest are not being reported in the press. The Alliance is coordinating a global response to the journal r…
See more
 
Statement signed by Sonia Chowdhury, as referred to in above post

" Nice Guideline is robust and globally supported"

https://worldmealliance.org/2023/07...jd_weGqUqwwg2glm5C9tpekQBHduZSeYCkfPX9ePuy9rc

edit:

Dear Editor,

We were disappointed by the absence of quotes or input from individuals with ME in your recent article titled “ME/CFS guidance that discourages exercise is flawed, say researchers.” As advocates for the broader disability community, we firmly uphold the principle of “nothing about us without us.”

The NICE guideline review process included input from thousands of individuals, organisations, researchers and clinicians. The researchers whose views were presented in your article were granted additional space through an extraordinary roundtable, which consequently delayed the publication of the guideline. It is essential to acknowledge that their arguments have been thoroughly examined and repeatedly found to be lacking.

Moreover, it is crucial for readers to be aware that previous studies conducted by these researchers were rated as low or very low quality by Nice. This information adds an important context to their perspectives.

The World ME Alliance—a collaborative effort encompassing 24 national and international ME organisations across 17 countries—stands by NICE in their rebuttal of this paper.

The patient community is ready to move on, and is eager to see resources, funding and energy put towards research projects such as DecodeME and the You&ME Registry. These initiatives have been developed with extensive patient and public involvement and offer genuine hope to individuals living with this devastating disease.

Yours sincerely,

Sonya Chowdhury CEO Action for M.E. and Co-Chair World ME Alliance,
on behalf of the World ME Alliance and its 24 member organisations.
 
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Kitty said:
Yes, and surely this has to be the final bleat of the expiring sheep.

The story's only just relevant enough to warrant small items run online for a few hours, and not only is it full of holes, it's the only one he's got. It's unlikely he'll get it up on legs again.
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I wish I had your optimism. They may have no more to say in research journals about NICE, but they, and particularly Wessely, have so much power in the NHS, and BACME is still all over the place, they will go on with their 'rehabilitation' and 'individualised treatment' just as before.

I had hoped that, with retirement reached by several key players, they would go away quietly to cultivate pumpkins or knit cardigans, but it seems to give them more time to defend their reputations at the expense of patients.

I wouldn't be surprised to see a big push in a year or two to get NICE overturned on the basis of a few more trials being published giving 'new evidence' for CBT/GET.
 
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