Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

It's an editorial, not a paper. It's a bunch of opinions, I doubt there is peer review for those. More likely trying to time it with some other PR effort and coordinate in a campaign.

 

BPS should really just stop trying to take over actual scientific medicine.

From Hemodialysis fatigue: just “simple” fatigue or a syndrome on its own right? (2012)

From Patient Perspectives on the Meaning and Impact of Fatigue in Hemodialysis: A Systematic Review and Thematic Analysis of Qualitative Studies (2019)

See also New insights into how fatigue affects the lives of people on dialysis (2019) which gives a plain-English summary of the above paper.

You may remember this post from Maureen Hanson's recent Urine Metabolomics Exposes Anomalous Recovery after Maximal Exertion in Female ME/CFS Patients (2023), regarding reduced SDMA and ADMA excretion.

From Serum Asymmetric and Symmetric Dimethylarginine and Morbidity and Mortality in Hemodialysis Patients (2017, Am J Kidney Diseases) —

 

Some recent posts in another thread reminded me of this paper. I'm suprised this has not been published yet. A tweet in the thread from the journalist who originally shared these snippets says "due to be published soon in the Journal of Neurology, Neurosurgery, and Psychiatry."

https://twitter.com/user/status/1602584835125567488


That appears to suggest the paper had been accepted at that stage, but still no paper 5 months later.....

 

Five months used to be not so unusual for a delay in publication but for an opinion-style piece in the current electronic context it seems odd.

When an entire tribe gets cold feet, is it a sign that winter really is coming?

 

Haven't looked, but well -- it would get around the difficulty they have --- no objective evidence to support their views!

 

Prebuttal worked?

 

Is that an actual word? I like it.

Edited to add: it is. My new word of the day.

 

The heart of the matter.

 

See Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis (2023)

 

The PACE trial GET manuals make it very clear the PACE authors presume CFS/ME (as they call it) to be deconditioning by another name. The whole concept of GET is based on this deeply flawed assumption, so no matter what the flowery denials by the PACE authors, GET is a treatment targeting a totally different medical condition from ME/CFS.

So when the GET manuals talk about "use it or lose it", "the role of exercise in general health", "an increase in intensity will help further strengthen the body", and so forth, it shows the authors' total blindness to any other possible illness cause. The mindset instilled into PACE therapists was that they were simply treating deconditioned patients, albeit patients possibly resistant to the idea their only issue was deconditioning.

So no matter the PACE authors might argue that GET is symptom contingent, that is meaningless when the incremental interventions are based on a totally different illness to that which the patient is suffering from. Like giving ibuprofen to someone for back pain, when they actually suffer from kidney disease and might be harmed by it.

And as for there being collaborative treatment agreement between therapist and patient, that is also meaningless when the "expert" in the room is totally wrong about the patient's illness, yet totally convinced of their own infallibility. A patient can only ever agree on a course of treatment based on the knowledge and advice of the expert therapist; that is how patient/therapist treatment agreements work! So if the therapist gives deeply flawed information and advice to a patient, then the patient is highly vulnerable to entering into a deeply flawed agreement. The fault is wholly on the side of the therapy regime and the therapist, the patient typically has no way to know any better.

The PACE authors' claim of "understanding" totally disproven by ... themselves:

 

Can anyone update this with a breakdown of the authors in the final published paper.

Also which someone else could do if they didn’t want to do the first job, a list of the people who are no longer listed and another list of new authors would be good.

 

@Dolphin - I compared the two lists and assuming I didn't make a mistake, all the originally listed authors above are in the published paper. But weirdly, Trudi Chalder wasn't in the above list but is on the published paper.

I didn't check to see if they were still at the same institutions

 

That’s great. I thought someone said there was 48 or 49 originally? Chalder was an original author (not surprising given she is the corresponding author):

 

Update to @cassava7 ’s post with Chalder added:

Breakdown of authors by specialty and area of research. Only academic affiliations are given, except for clinicians who do not have one.

11 countries are represented. Below is the tally by country.

1. UK: 29
2. USA: 7
3. AU: 3
4. CA, DE*, NL, NO: 2
5. CZ, DK, FR, IT: 1

*Germany (Deutschland)

Psychiatrists & psychologists specializing in psychosomatic medicine and/or MUS

Susan Abbey (University of Toronto, CA)
Trudie Chalder (King’s College London, UK)
Daniel J Clauw (University of Michigan, USA)
Anthony David (University College London, UK)
Per Fink (Aarhus University, DK)
Peter Henningsen (Technical University of Munich, DE)
Hans Knoop (University of Amsterdam, NL)
Kurt Kroenke (Indiana University, USA)
Mujtaba Husain (South London and Maudsley NHS Foundation Trust, UK)
James L Levenson (University of Virginia, USA)
Winfried Rief (University of Marburg, DE)
Alastair Santhouse (South London and Maudsley NHS Foundation Trust, UK)
Michael Sharpe (University of Oxford, UK)
Simon Wessely (King’s College London, UK)
Peter White (Queen Mary University of London, UK)
Donna E Stewart (University of Toronto & McGill University, CA)
Vegard Wyller (University of Oslo, NO)

Neurologists / neuropsychiatrists specializing in FND

Harriet A Ball (University of Bristol, UK)
Christine Burness (The Walton Centre NHS Foundation Trust, UK)
Alan Carson (University of Edinburgh, UK)
Jan A Coebergh (St George’s University Hospitals NHS Foundation Trust, UK)
Barbara A Dworetzky (Brigham and Women’s Hospital, USA)
Mark J Edwards (King’s College London, UK)
Alberto J Espay (University of Cincinnati, USA)
Béatrice Garcin (Avicenne AP-HP Hospital, FR)
Ingrid Hoeritzauer (University of Edinburgh, UK)
Anne Catherine ML Huys (formerly University College London, UK; current affiliation unknown)
Alexander Lehn (Brisbane Clinical Neuroscience Centre, AU)
David L Perez (Massachusetts General Hospital, USA)
Wendy Phillips (Cambridge University Hospitals & Princess Alexandra Hospital NHS Foundation Trust, UK)
Markus Reuber (University of Sheffield, UK)
Tereza Serranova (Charles University in Prague, CZ)
Biba Stanton (King’s College Hospital NHS Foundation Trust, UK)
Jon Stone (University of Edinburgh, UK)
Michele Tinazzi (University of Verona, IT)
Adam Zeman (University of Exeter, UK)

Other

Epidemiology & public health

Dedra Buchwald (Washington State University, USA)
Signe Flottorp (Norwegian Institute of Public Health & University of Oslo, NO)
Paul Garner (University of Liverpool, UK)
Paul Glasziou (Bond University, AU)

Infectious diseases

Brian Angus (University of Oxford, UK)
Andrew Lloyd (University of New South Wales, AU)
Alastair Miller (North Cumbria Integrated Care NHS Foundation Trust, UK)
Maurice Murphy (formerly Oxford University Hospitals NHS Foundation Trust; current affiliation unknown)

Internal medicine: Jos WM van der Meer(Radboud University, NL)

Occupational medicine: Ira Madan (King’s College London, UK)

Primary care

William Hamilton (University of Exeter, UK)
Paul Little (University of Southampton, UK)
Irwin Nazareth (University College London, UK)

Rehabilitation medicine

John Etherington (Pure Sports Medicine, UK)
Derick T Wade (Oxford Brookes University, UK)

 

Really brings home the vested interest in this.