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]

[rvallee]

I suspect it's still in peer review.

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.

 

[SNT Gatchaman]

I ask because [Dedra] Buchwald, one of the authors of this letter, is presenting "Lessons Learned from Chronic Fatigue Syndrome (CFS)" at an NIH sponsored scientific workshop on post-dialysis fatigue.

Yes, agree she is more than a bit BPS

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)

What We Can Learn from Chronic Fatigue
A disorder called “CFS” is generally defined by persistent mental and physical fatigue accompanied by other specific symptoms (Arnett et al., 2011). While its causes are undefined, it is managed as a syndrome (given some accepted “operational” diagnostic criteria; Wessely, 2001) and sufferers are offered multidisciplinary care.

Patients on maintenance HD therapy share many similarities to those suffering by CFS since they experience generalized weakness (Johansen et al., 2003), exercise in tolerance (Koufaki et al., 2002), and disturbed sleep (Sakkas et al., 2008a) all leading to a sense of generalized fatigue and “lack of energy” (McCann and Boore, 2000; Kovacs et al., 2011). This chronic state of “HD Fatigue” among HD patients satisfies one major requirement for the diagnosis of CFS which is persistent fatigue present at least during 50% of the time over a period of at least 6 months (Jason et al., 2003). However, as renal failure is present, the second requirement for the diagnosis of CFS, which is the absence of disease, is contradicted. So far the single symptom approach of fatigue in HD patients did not succeed to ameliorate patients’ sense of fatigue (Letchmi et al., 2011) and therefore, by viewing signs and symptoms of fatigue in a holistic approach would at least allow practitioners and scientists to address the problem as efficiently as in CFS patients. Such an approach will be challenging, given the variety in intensity and the causes of these symptoms, but not impossible, and can hold large benefits to the patients’ quality of life as the CFS treatments have shown so far in other populations.

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

For patients undergoing hemodialysis who experience fatigue, fatigue is a profound and relentless exhaustion that pervades the entire body and encompasses weakness. The fatigue drains vitality in patients and constrains their ability to do usual activities and fulfill their roles and meet personal aspirations. Explicit recognition of the impact of fatigue and establishing additional effective interventions to improve fatigue are needed.

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.

• Patients experience debilitating and relentless exhaustion because of haemodialysis-related fatigue, which encompasses their whole body and can persist beyond the immediate treatment period.
• Haemodialysis-related fatigue restricts patients’ ability to engage in usual activities, because of the time needed to get to clinics and complete treatment about three times a week, needing to rest between treatments, and managing energy reserves.
• Patients’ ability to fulfil relationship roles is hampered by haemodialysis-related fatigue. For example, impacts are felt on parenting, lack of stamina for sexual intimacy, or reduced ability to work and provide for their family.
• Haemodialysis-related fatigue can leave patients feeling vulnerable to criticisms of laziness when they need to rest.
• Patients feel that haemodialysis-related fatigue can lead to misunderstanding when they fail to meet the expectations of friends and family.

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.

They are uraemic toxins, so much of the literature seems to relate to chronic kidney disease and especially in patients having dialysis. In particular, they are being looked at in relation to the cardiovascular disease associated with renal failure. They have also been considered as markers of endothelial dysfunction

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

We measured ADMA and SDMA in samples from a large, national, multicenter study of prevalent hemodialysis patients in the United States and report an association between these solutes and the risk of death and cardiovascular events
...
Cardiovascular disease accounts for about half of all deaths in dialysis patients, but the mechanisms of accelerated cardiovascular disease remain elusive; retention of uremic toxins is a likely culprit.
...
It is likely that some of the residual illness in contemporary dialysis patients is due to uremic toxins that are not effectively lowered by conventional dialysis.
...
The present study suggests that the elevated concentrations of ADMA and, to a lesser extent, SDMA are cardiovascular risk factors in hemodialysis patients, and therefore, potential therapeutic targets for a randomized controlled trial.
...
In kidney failure ADMA accumulates and contributes to cardiovascular toxicity by inhibiting nitric oxide synthase (NOS) and reducing nitric oxide (NO) production. A central role is played by NO in vascular biology and health; it leads to vasodilation and reduces platelet aggregation, vascular smooth muscle proliferation, oxidation of low-density lipoprotein cholesterol and free oxygen species generation.
...
SDMA is generated from arginine-containing proteins by the action of PRMT. It is almost completely excreted in the urine and its concentrations increase to a greater degree than those of ADMA as kidney function declines. Once considered to be an “inert” isomer of ADMA, SDMA reduces NO availability by reducing availability of L-arginine to NOS and scavenging NO. Additionally, SDMA may have direct inflammatory and atherogenic effects.

 

[InitialConditions]

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."



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

 

[Jonathan Edwards]

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?

 

[FMMM1]

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.

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

 

[Solstice]

Prebuttal worked?

 

[Arvo]

Prebuttal worked?

Is that an actual word? I like it.

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

 

[Arvo]

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

The heart of the matter.

 

[SNT Gatchaman]

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

 

[Sean]

Brian Hughes says

In other words, special pleading is justified on the basis that the speaker “just knows” they are right and that everyone else must therefore be wrong.

Interestingly, this assumption — that one’s own standpoint is objective and definitive — is known in philosophy as the psychologist’s fallacy.

I kid you not.

Gets better. From the original definition by William James (bolding mine):

The great snare of the psychologist is the confusion of his own standpoint with that of the mental fact about which he is making his report. I shall hereafter call this the 'psychologist's fallacy' par excellence.​

 

[Barry]

Trial By Error: Usual Suspects Say NICE Made Eight Errors; Nonsense, Says Committee Member Adam Low

"The usual suspects—several dozen of them—are apparently about to publish a cri de coeur outlining their objections to the ME/CFS guidelines issued in October, 2021, by the UK’s National Institute for Health and Care Excellence (NICE). The upcoming article is expected to appear in the Journal of Neurology, Neurosurgery, and Psychiatry. Not surprisingly, the lead author is our old buddy, Professor Peter White, one of the three main investigators of the now-discredited PACE trial. His PACE co-leads, Professors Michael Sharpe and Trudie Chalder, are also signatories, along with a glittering array of other stars of the biopsychosocial firmament."

https://www.virology.ws/2022/12/29/...rors-nonsense-says-committee-member-adam-low/

I have pointed out on Dave's Facebook post that it should be Lowe , not Low.

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:

The rationale behind GET stems from both physical and behavioural understanding of CFS/ME. Physical deconditioning, exercise intolerance and avoidance caused by relative inactivity are reversed by gradually and carefully re-introducing regular physical exercise, aiming to return a patient to normal health and ability.

 

[Trish]

Well said, Barry.

 

[Dolphin]

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: 28
2. USA: 7
3. AU: 3
4. CA, DE, NL, NO: 2
5. CZ, DK, FR, IT: 1

Psychiatrists & psychologists specializing in psychosomatic medicine and/or MUS

Susan Abbey (University of Toronto, CA)
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)

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.

 

[Medfeb]

@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

 

[Dolphin]

@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):

 

[Dolphin]

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)

 

[Solstice]

Really brings home the vested interest in this.