Unpublished
Here's what I submitted:
On power and paradigms, a response to "Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis"
The 51 signatories (White et al) of this critique of the 2021 NICE ME/CFS Guideline make eight points which they claim present 'anomalies' in the guideline and evidence review. (1)
Psychology professor Brian Hughes has published a detailed analysis of the problems with the White et al. article: "Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS". It should be compulsory reading alongside White et al.(2)
I don't intend to repeat what Professor Hughes has written. Rather I want to make a wider point about where power lies when there is a change of paradigm.
For over 30 years in the UK and some other countries decisions over what, if any, medical care and disability support has been provided to people with ME/CFS have been dictated by a particular approach to understanding and treating ME/CFS. This paradigm was developed in the early 1990s by a small group of clinicians, many of whom are signatories of this article.
There are two treatments prescibed under this paradigm. First, a directive form of CBT that endeavours to persuade patients that they should ignore their symptoms and address their "fearful thoughts such as “activity will make my problems worse”, which may lead to an avoidance or reduction of activities". (ref. 3, page 23).
Second, graded exercise therapy (GET) in which patients increase their activity in gradual increments. "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." (ref. 4, page 23)
The CBT/GET paradigm failed to live up to its early promises. Its claims were prematurely accepted and widely implemented in clinical practice and health policy, and flaws in the research overlooked. The problems became more apparent with every study that came out. All they could demonstrate was a small, transient uptick in how patients in the treatment arms of trials fill in questionnaires about subjective symptoms such as fatigue, results easily explained by therapist effect and hope rather than real change in illness and disability (5). Patients were no more able to return to work (6), they did not become fitter and the treatments were not cost effective, as NICE and the US CDC established in their very thorough evidence reviews.
ME/CFS has been defined for many years as characterised by the core feature post-exertional malaise (PEM), a severely disabling worsening of symptoms and reduction in function for days or sometimes much longer, following small increases in normal daily activity. Note that this is not the same as post exercise fatigue in someone who is deconditioned (7). This has been objectively demonstrated in multiple research studies using cardiopulmonary exercise tests on two consecutive days (8).
It should be unsurprising that persuading patients with PEM as a core symptom to be more active will make them sicker. And that is exactly what has happened to many thousands of patients. White et al's own research has shown that CBT and GET do not lead to any long term or objective improvement in health or ability to function. (9).
It is now established, though the signatories of this article are in the minority who disagree, that the paradigm has shifted. NICE, with its very thorough evidence review and conclusions that CBT and GET should no longer be offered as treatments for ME/CFS reflects this shift.
We are therefore faced with a mystery: The NICE guideline has been welcomed by many scientists, clinicians and national and international ME organisations. Patients greeted it with relief and gratitude that their suffering at the hands of ineffective and often harmful treatment has been acknowledged and they should be offered much more appropriate care. However, a small group of clinicians—many of them co-authors of the White et al. commentary—choose publicly and repeatedly to defend an outdated and disproven paradigm.
Why is this?
Why does the same small group of clinicians stlll have such a hold over the media, the Science Media Centre, and some scientific journals that their paradigm is still presented as evidence-based science, and those who disagree, particularly patients, continue to be misrepresented? (10)
Why did a person associated with the Royal College of Psychiatrists, perhaps one of the signatories of this article, see fit to attempt covertly to persuade NICE to withdraw the evidence review, as revealed through Freedom of Information? (11)
How do they wield such power over the Royal Colleges that the colleges collectively put out a statement following publication of the NICE guideline withholding support for it? (12)
I make no comment about the character or motivations of the clinicians involved in this ongoing defence of the old paradigm through the media and journal articles. Perhaps they really believe they are right and legions of patients, scientists doing biomedical research on ME/CFS, and clinicians are wrong.
We have only to read the very lengthy list of conflicts of interest attached to the article to find some clues about why these clinicians continue to support a paradigm some of them have based their work on since the 1990s. Some are now in very senior positions in health services and government advisory bodies, positions that bring both power and responsibility.
According to Max Planck, "A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it." (13)
So I ask myself, and I hope readers following my references and line of reasoning will ask yourselves, what are the consequences for patients, when guideline bodies, many clinicians and scientists have accepted the paradigm shift, but those who supported the old paradigm still wield considerable power over journals like this one, the media and patients' lives?
MEActionUK submitted a rapid response. I am not a member of MEActionUK and had no involvement in their response. It was published but then taken down by the JNNP editors who posted their explanation: "Notice Regarding Rapid Responses [...] Please note that a previously posted Rapid Response was taken down because of inappropriate inflammatory language. While we encourage scientific discourse, it should be polite and non-defamatory. [...]" (14)
There is a huge power imbalance here. The MEActionUK rapid response, which can be read on their website is, as far as I can see, accurate. The language is polite, the criticisms of the work valid, and the comments about the researchers, though forthright, are in my view truthful, not defamatory. (15)
The point I wish to make here is that, in making this ruling about a rapid response from MEActionUK, and possibly my own response, and others that may not see the light of day, the editors of this journal are not allowing their readers to decide for themselves the rights and wrongs of this terrible situation. They are choosing to silence patients. Added to the history of silencing over decades, this reinforces the historical power imbalance between this group of clinicians and patients.
This is not just about science, or even about resistance to changing paradigms, it is about power. I do not know what power and influence was used to get the MEAction piece taken down. The power over what happens next lies in the editors' hands. Critics and, most egregiously, patients have once again not been allowed to speak truth to power.
Indeed I do not know how an article from people with such a long list of conflicts of interest, and containing so many logical fallacies, as pointed out by Professor Hughes, came to be published in the first place in a scientific journal. I hope readers will follow the links below and make up their own minds.
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References
1. White et al., 2023, Anomalies in the review process and interpretation of the evidence in the NICE guideline for [CFS & ME]
https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463
2. Brian Hughes, 2023, "Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS"
https://thesciencebit.net/2023/01/1...-bemoaning-the-new-nice-guideline-for-me-cfs/
3.Burgess and Chalder, 2004, PACE trial CBT for CFS Manual for Therapists
https://www.qmul.ac.uk/wiph/media/t...lth-wiph/documents/3.cbt-therapist-manual.pdf
4. Bavinton, Darbishire, White, 2004, PACE trial GET for CFS Manual for Therapists
https://www.qmul.ac.uk/wiph/media/t...lth-wiph/documents/5.get-therapist-manual.pdf
5. Wilshire et al, 2018, Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3
6. Tuller and Vink, 2023, Graded exercise therapy and cognitive behavior therapy do not improve employment outcomes in ME/CFS
https://content.iospress.com/articles/work/wor220569
7. Ed Yong, The Atlantic, 2023, Fatigue Can Shatter a Person.
https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/
8. Keller et al, 2014, Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2peak indicates functional impairment
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004422/
9. Vink and Vink-Niese, 2022, The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS
https://www.mdpi.com/2227-9032/10/5/898
10. Adam Lowe, member of the 2021 NICE ME/CFS guideline committee, 2022,
Bad science, sloppy writing and a history of dodgy stories, a review of 'Beyond the Hype' by Fiona Fox, Science Media Centre.
https://www.amazon.co.uk/gp/custome...=cm_cr_getr_d_rvw_ttl?ie=UTF8&ASIN=1783966173
11. Dom Salisbury, 2021, Text-message lobbying of senior NICE staff by individuals at NHS England and the Royal College of Psychiatrists in days before ME/CFS guideline pause
https://domsalisbury.github.io/mecfs/nice-mecfs-guideline-pause/
12. Royal Colleges, 2021, Medical leaders sign joint statement in response to NICE guidance on ME/CFS
https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs
13. Max Planck, Scientific autobiography, 1950, p. 33,
https://en.m.wikipedia.org/wiki/Planck's_principle
14. JNNP Editorial Office, 2023, Notice Regarding Rapid Responses
https://jnnp.bmj.com/content/early/2023/07/09/jnnp-2022-330463.responses
15. MEActionUK, 2023, Below is the text of MEAction UK’s rapid response submitted to the JNNP article that was published 10th July 2023.
https://www.meaction.net/2023/07/12...apid-response-to-the-jnnp-in-support-of-nice/