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

The basic way to write a scientific piece for publication is that each sentence should be able to be backed up by a reference (or it should be so self evident or flow from logic as to not to require one). While the rules are maybe not as strict for an e-letter, I have adopted a similar method when writing more than 100 over the years that have been posted on different sites, nearly all of which got through.

I’d encourage people to try to back up at least most of your points with references. It then makes it hard for a journal not to post replies and tends to keep responses on track.

I have tended to avoid ad hominems but you can often still come down hard on points made.

If someone wanted to go down the ad hominem line, I would encourage them to write and submit two or more responses so as not to jeopardise the posting of points that were about the subject matter itself (as opposed to the writers) and not make it easy for a journal to turn down a post.

By the way, I have seen the World ME Alliance response and believe it should get posted. It isn’t nearly as inflammatory and has lots of references.
 
In general, if you want to make a point in a response but are unsure of a reference, you could ask on a thread and people might be quite willing to give a suggestion or alternatively say what you want to say may not be true or easy to justify.
 
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Apologies if anyone saw a post from me just now - I made a post regarding MEAction UK's response to the JNNP, but jumped the gun as we have not actually sent it yet!
As such I've deleted the post here and will post it again tomorrow morning.

Oh dear I guess I could work for a journal as a professional post deleter
 
MEAction UK initially sent a quick email to the JNNP straight after it was noticed that our rapid response was removed from publication to see if it was just an error.

Around the same time as the JNNP updated the online paper with their comment explaining the removal, we received an email response saying it had been removed for "inappropriate inflammatory language" following "further editorial consideration" and nothing else.

Rather than submitting a new rapid response, we're choosing to try and work with the JNNP to understand the specific cause for the change in heart and to get the rapid response reinstated to sit alongside the paper where we feel it rightfully belongs having already been published and thus part of the public record.

As such we have now emailed the BMJ Editor in Chief, the JNNP Editor in Chief the and the JNNP Editorial Office Team with text that can be found at the following link:
(Content also pasted below for those who want to stay on s4me !)

https://www.meaction.net/2023/07/27...-removal-of-rapid-response-from-jnnp-website/
 
We are disappointed that the JNNP decided to remove our Rapid Response to, “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis”.1

In the email from your editorial office ‘inappropriate inflammatory language’ is cited as the reason for removing our Rapid Response. However, our response was posted for several days and also edited without anyone in the editorial office considering it to be ‘inflammatory’. In your terms and conditions you say that, ‘If only a line or two of an otherwise OK response is defamatory or extremely abusive, we may delete the line and post the rest.’2 As the original response was considered suitable to be published we find it surprising that editing wasn’t considered before removal.


It is also intimated in the online notice that our response fell foul of the ‘hostile or hateful speech’ clause. This was not mentioned in the email to us and is a particularly egregious accusation in relation to a marginalised patient group who have repeatedly reported being gaslit by the medical establishment.

In a 2013 post, Sharon Davies, the rapid responses editor for the BMJ, said ‘we adhere strictly to our policy of not deleting rapid responses once we have posted them. The only exception is when we’re told to do so by lawyers.’3

Is it the case that you have been instructed to take this exceptional step by lawyers or under pressure from the authors of the paper and supporters, rather than ‘inflammatory language’? We would be very disappointed if the JNNP had given in to outside pressure and ask that you engage in a constructive dialogue with us to find a way to reinstate our response. We intend to publish this response and any further correspondence unless you request that we do not.

Finally, we would like to thank the editorial team who originally posted our Rapid Response and prioritised debate and openness.

Sincerely,

Denise Spreag
Janet Sylvester
Malcolm Bailey
– MEAction UK Trustees

https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463
https://www.bmj.com/company/journals-terms-and-conditions-for-rapid-responses/
https://blogs.bmj.com/bmj/2013/01/3...uctant-to-remove-rapid-responses-from-bmj-com
 
MBailey said:
Of particular interest to people would be this post from a previous BMJ rapid response editor.
https://blogs.bmj.com/bmj/2013/01/3...ctant-to-remove-rapid-responses-from-bmj-com/
Click to expand...
Well done to whoever found this.

Sharon Davies, BMJ Rapid Response editor writes [my bold]:

“We do not delete rapid responses once we have posted them, just as we did not and do not cut out pages people are not happy with when they see them in print. This is not the way of publishing. Very early on in the electronic world we realised that rapid responses were published entities, living in the public domain as soon as one of us had pressed the button. We imagined that someone somewhere might have seen the response we had posted as soon as it became live so what would it look like if we started messing about with it or, worse, deleted it after publication? People might reasonably doubt our public integrity and professionalism.”
 
just for info; conflict of interest part
Competing interests

PW was a coauthor of trials of both graded exercise therapy and cognitive behaviour therapy, including the PACE trial, is a trustee of the Voluntary Hospital of St Bartholomew’s Charity, was a previous member of Independent Medical Experts Group, which advises the UK MoD on its Armed Forces Compensation Scheme, and receives personal consultancy fees from Swiss Re reinsurance company.

BA was a centre leader in the PACE trial.

AJC reports grants from NIHR (Physio 4 FMD) and CSO (Long Covid Cognitive phenotyping).
AJC is a paid associate editor of JNNP and unpaid president elect of the Functional Neurological Disorders Society (FNDS), he gives expert testimony in court on a range of neuropsychiatric topics on a 50% claimant 50%: defender basis. He is the author of a self-help book based on CBT principles for treatment of FND (no royalties taken).

DJC declares grants from Pfizer and Aptinyx; consulting fees from AbbVie, Allergan Sales, Heron Therapeutics, Eli Lilly and Company, Aptinyx, H. Lundbeck A/S, Neumentum, Pfizer, Regeneron Pharmaceuticals, Samumed, Swing Therapeutics, Tonix Pharmaceuticals, Virios Therapeutics. Fees from Fasken Martineau DuMoulin, Kellogg, Hansen, Todd, Figel & Frederick, PLLC, Marks & Clerk Law, Nix Patterson, Pfizer, Zuber Lawler & Del Duca.

JC reports consulting fees from Bial, and honoraria from Janssen, Bial and Brittania.

BAD reports NIH R13 infrastructure grant for 2022 Functional Neurological Disorders Society meeting in Boston.

TC was co-investigator of several trials of behavioural interventions for CFS/ME, including the PACE trial, has received royalties for several books and book chapters on CFS/ME and received payments for workshops on CBT for CFS/ME.

BAD is on the board of directors of the FNDS and receives royalties from Oxford University Press for 'Psychogenic Nonepileptic Seizures: Towards the Integration of Care'. She does paid consultancy for Bioserenity (EEG interpretations) and Best Doctors (clinical consultations). She received support to attend the American Epilepsy Society Board of Directors meeting in 2021. She chairs the data safety monitoring board of the DSMB NIH-ESETT trial 2015–2019, and received travel expenses to attend the American Epilepsy Society Board of Directors FNDS meeting and Epilepsy Foundation of New England PAB.

MJE reports royalties from Oxford University Press for the book 'The Oxford Specialist Handbook of Movement Disorders', consulting fees from UCB (personal) and Merz Pharma (to his institution), honoraria from the International Parkinson’s Disease and Movement Disorder Society, medicolegal fees for personal injury and clinical negligence cases, support to attend meetings from the FNDS, leadership roles in International Parkinson’s Disease and Movement Disorder Society and Dystonia UK, and is a medical board member of FND Action and FND Hope, and board member of the FNDS.

JE was the President of the Faculty of Sport and Exercise Medicine at the time of the Royal College of Physicians’ review of this guideline and submitted comments on behalf of the Faculty. He is Medical Director of a company which occasionally manages patients with CFS/ME.

AJE has received grant support from the NIH and the Michael J Fox Foundation, personal compensation as a consultant/scientific advisory board member for Neuroderm, Neurocrine, Amneal, Acadia, Acorda, Bexion, Kyowa Kirin, Sunovion, Supernus (formerly, USWorldMeds), Avion Pharmaceuticals, and Herantis Pharma, and publishing royalties from Lippincott Williams & Wilkins, Cambridge University Press, and Springer. He received an honorarium from Avion. He cofounded REGAIN Therapeutics (a biotech start-up developing nonaggregating peptide analogues as replacement therapies for neurodegenerative diseases) and is co-owner of a patent that covers synthetic soluble nonaggregating peptide analogues as replacement treatments in proteinopathies.

PF declares consulting fees from FADL Forlag, Munksgaard, Ny Nordisk Forlag and Arnold Busk, an honorarium from Lundbeck Pharma,and medicolegal fees from Retslægerådet.

SF was a co-founding member of the GRADE working group and a member of the GRADE guidance group. She has been engaged in debates related to the evidence regarding CFS/ME for many years from a biopsychosocial perspective.

PGlasziou declares an NHMRC Investigator Award: 'Neglected Problems in Health Care' supporting his salary; grants from the National Heart Foundation, Commonwealth Department of Health and WHO for work unconnected to this paper, and is a board member (unpaid) for Therapeutic Guidelines.

IH has an NRS Fellowship from CSO, has been paid for medicolegal consultations, receives travel expenses for attending medical conferences and one honorarium from Bristol NHS Neurology Department, and is on the board of Fowler’s syndrome UK Charity.

WH was a member of the 2007 NICE Guideline Development Group, and is Chief Medical Officer of LV=, an insurance company.

PH was part of the steering committee of the German clinical practice guideline on functional somatic symptoms. MH reports fees for medicolegal expert court reports (none concern CFS/ME).

HK reports grants from ZonMw, Stichting NKCV, MS Research, and Dutch Cancer Society, was coauthor of trials of cognitive behaviour therapy, reports royalties for a published treatment manual for CBT for fatigue in CFS/ME, and an honorarium for a lecture from Intercept Pharma Deutschland.

A Lehn is an unpaid director of the FNDS.

AL reports grants for investigator initiated research grants from Gilead Sciences, AbbVie and Sequiris.

AM has been on a trial steering committee for a trial of graded exercise therapy, was formerly the Chair of the British Association for CFS and ME (BACME) and Principal Medical Adviser for Action for ME.

IM has been paid honoraria by The@WorkPartnership for lectures on the occupational health management approach to managing long-term conditions (including CFS/ME) in the workplace, is the Academic Dean of the Faculty of Occupational Medicine and commented on the NICE guidelines on the management of CFS/ME on behalf of the Faculty.

MM received an honorarium for a lecture in 2020 for ViiV, received financial support to attend the EACS 2021 conference (virtual) and ViiV EACS 2019 conference, and was a centre co-lead for the PACE trial.

IN reports research grants received from NIHR and MRC to conduct clinical trials on complex interventions, not specific to CFS/ME, has served on several Data Safety Committee as an independent member for trials on complex interventions, one of which related to CFS/ME, and is Co-Chair of Wellcome Trust/Indian Alliance DBT Team Science Grant and Clinical and Public Health Research Centers Grants Committee.

DLP reports grants from the National Institutes of Health and Sidney R. Baer Jr. Foundation for work unrelated to this paper, has received honoraria for continuing medical education lectures at Harvard Medical School and the American Academy of Neurology, royalties from Springer Nature for a textbook on Functional Movement Disorder, is a member of the Board of Directors of the FNDS, senior (paid) editor of Brain and Behavior and is an Editorial Board Member of Epilepsy & Behavior.

WP reports occasional paid lectures pertaining to FND (most payments donated to charity), has received fees for expert testimony in court on a range of neurological topics including FND, is a board member of FND Hope and FND Action, and is on the board of directors of the BNPA.

MR reports a grant from Elsevier, royalties from Oxford University Press, honoraria from UCB Pharma, LivaNova, Eisai, and Angellini and sits on a data safety monitoring board for IqVia Medtech.

WR reports grants from the German Research Foundation, royalties from books and fees for German legal opinions.

AS was a member of the 2007 NICE Guideline Development Group for CFS/ME (CG53)].

TS reports being a member of the Board of Directors and Membership and Liaisons Committee of the FNDS and being a member of the Functional Movement Disorders Study Group (Movement Disorders Society).

MS was a co-principal investigator for the PACE trial and has led a trial of CBT for CFS/ME. He is current President of the European Association of Psychosomatic Medicine Current (unpaid) and was the previous President of the Academy of Consultation Liaison Psychiatry (unpaid).

BS is a Council Member of the Association of British Neurologists and Medical Expert Committee member of FND Hope UK.

JS reports grants from Scottish Government and NIHR; royalties from UptoDate, the Donald Baxter Lecture Award, Montreal, titled 'Multiple Sclerosis at the limits', personal fees from expert witness work, Secretary FNDS, Medical Advisor FND Hope, Medical Advisor FND Action, running a self-help website for patients with FND.

DTW reports consulting fees for expert opinions on patients in a prolonged disorder of consciousness, fees for occasional medicolegal and personal injury cases, member of NIHR grant Programme Supervisory Committee of a trial of vocational rehabilitation after head injury, Deputy Secretary to British Society of Physical and Rehabilitation Medicine (unpaid) and is employed at a nursing home where he sees 2-3 patients with functional disorders.

SCW reports honoraria from two talks on psychological impacts of COVID to Swiss Re during the pandemic, but neither covered CFS nor Long Covid. He is on the Board of the ESRC and am also a member of the Judicial Appointments Commission for which he receives renumeration. None are relevant to this paper.

SCW is also on the Board of the South London and Maudsley Foundation NHS Trust for which he receives no renumeration. SCW reports receiving grants to research CFS and has published over 150 papers on this subject, including being an author on several RCTs relevant to this submission, but none within the last 36 months.

VW is Head of the Collaborative on Fatigue Following Infection (COFFI) (unpaid). AZ reports fees for expert witness medicolegal reports, but not in cases specifically focused on CFS/ME.

No other authors declared any relevant competing interests.
Click to expand...
https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463
 
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Well done @MBailey and #MEAction UK. Thank you for keeping fighting this on behalf of pwME. This is, as of course you know, about so much more than a small spat over wording in a rapid response, it's emblematic of what has been done to us all for 30 years.
 
doesn't mention that TC is head of PPS dept at KCL,

" received payments for workshops on CBT for CFS/ME."
psychwire Professor Trudie Chalder | ASK | Psychwire

Professor Chalder’s main research area is the effectiveness of Cognitive Behavioral Therapy for treating the symptoms of Chronic Fatigue Syndrome (CFS). She has published over 300 research papers with more than 14,000 citations and co-authored multiple books on managing CFS.
Click to expand...
and cbtreach
CBT for persistent physical symptoms
Professor Trudie Chalder
ABSTRACT
Cognitive behaviour therapy for persistent physical symptoms: what to do and how it works?

Professor Trudie Chalder
Overlapping, common, persistent physical symptoms, not associated with significant pathology, are associated with profound distress, sleep disturbance and disability. Patients with these symptoms attract a range of different labels including irritable bowel syndrome, , chronic fatigue, cough hypersensitivity, fibromyalgia, and dissociative seizures. Around 50% of patients in secondary care have symptoms such as these. Evidence has accumulated for the efficacy of cognitive behaviour therapy. Some studies focus on one syndrome such as irritable bowel syndrome while others take a transdiagnostic approach.


The aim of the workshop is to,

(1) describe specific and transdiagnostic models and treatment approaches for persistent physical symptoms, and

(2) describe evidence of efficacy and mechanisms of change.


This workshop will be useful for qualified cognitive behaviour therapists and clinical psychologists working in primary or secondary care, occupational therapists, psychiatrists, and primary care physicians.

In this workshop you will develop an understanding of why physical symptoms persist within a cognitive behavioural framework, the extent to which they can be changed and how they can be changed. Building on your existing skills you will expand your repertoire of skills and techniques that will translate into effective change for your clients and patients. A range of self-report scales will be described as well as self help materials for patients.
Click to expand...
Trudie Chalder | CBTReach

she was also on the medical advisory board for FND Action (2017)
https://www.fndaction.org.uk/introduction-fnd-actions-new-medical-advisory-board/
 
adambeyoncelowe said:
This is just a staggering list of COIs, and so many of them for cash involving legal claims and insurance. I feel icky after reading all that!
Click to expand...

I am utterly gobsmacked at the breadth and depth of the conflicts of interest. I knew they existed but the scale is beyond belief.

Is there a medical body that exists that can investigate this? I don't know the role of the GMC, other than the Dr Myhill events. Surely there must be some public body who is tasked with investigating such conflicts. I have a doctor's appointment next week. I feel inhibited from consulting someone from such a damaged profession.
 
BMJ said:
People might reasonably doubt our public integrity and professionalism.
Click to expand...
Oh, I do far more than merely doubt it. They have removed all reasonable, even possible, doubt with their behavior over the years.

However I'd note that this isn't about outside pressure, it is clearly inside pressure since some of their own are on the editorial team, and nearly everyone else fully agrees, has collaborated or worked directly with both of them. This is all very corrupt.
 
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Sly Saint said:
just for info; conflict of interest part

https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463
Click to expand...
I don't see mention of Wessely's conflict being part of PACE, despite his false claims otherwise.

Doesn't appear to note that Jon Stone and Alan Carson are on the editorial board of the journal that published their own letter. This very long list of conflicts is clearly incomplete. I assume there would be far more if anyone bothered looking into that. A full list would probably actually be longer than the whine/commentary itself.
 
Binkie4 said:
I am utterly gobsmacked at the breadth and depth of the conflicts of interest. I knew they existed but the scale is beyond belief.

Is there a medical body that exists that can investigate this? I don't know the role of the GMC, other than the Dr Myhill events. Surely there must be some public body who is tasked with investigating such conflicts. I have a doctor's appointment next week. I feel inhibited from consulting someone from such a damaged profession.
Click to expand...
Sadly, I doubt anyone would care. I definitely still want this list to be accurate, but I fully assume that no regulatory body, or even minor institution, thinks there's anything wrong with this. They think this is what we deserve.

For sure it will eventually look corrupt and awful, and I want this list to be accurate for this reason alone. But the systemic misbehavior is obvious here.
 
rvallee said:
Sadly, I doubt anyone would care. I definitely still want this list to be accurate, but I fully assume that no regulatory body, or even minor institution, thinks there's anything wrong with this. They think this is what we deserve.

For sure it will eventually look corrupt and awful, and I want this list to be accurate for this reason alone. But the systemic misbehavior is obvious here.
Click to expand...

I'm not sure that whether anybody ( in a regulatory body) would care is the only point at the moment. Bringing public awareness to what is happening is a valid aim in itself. If all corrupt behaviour stays unexamined, then change will never occur. We in the ME community know that better than most.
 
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