(No discussion) E-letters submitted to JNNP replying to White et al. "Anomalies in the review process & interpretation of the evidence in the NICE..."

T

Tom Kindlon

Senior Member (Voting Rights)
Moderator note:
This thread is for collecting copies of letters submitted as rapid responses to the article discussed here:
Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al
To discuss these letters, please go to that thread. If you want to have your letter added here, but don't want to be identified as the writer, send a copy by private message to a mod and we wlll post it for you.

A thread for both published and unpublished letters.

I thought it would be good to collate them all in one place.
 
Last edited by a moderator:
Published:
https://jnnp.bmj.com/content/early/...shortcomings-in-the-commentary-by-white-et-al

Shortcomings in the commentary by White et al.
  • Dom Salisbury, Independent Patient Researcher None
  • Other Contributors:
    • Robert H Saunders, None
    • Jonathan CW Edwards, Emeritus Professor of Medicine
There are several shortcomings in the commentary by White et al. For brevity, this response focuses on four main points.

1. New case definition
In the past 20 years, multiple case definitions have been published that require post-exertional malaise (PEM) as a core feature of ME/CFS, such as the Canadian Consensus Criteria (CCC), International Consensus Criteria (ICC), and the Institute of Medicine (IOM) criteria. NICE’s definition is based on the latter.

These case definitions are the ones used in research and clinical practice today. White et al. refer to the 1994 criteria developed by the Centers for Disease Control and Prevention (CDC) but the CDC no longer seems to use this case definition. Instead, they advise healthcare providers to diagnose ME/CFS using the IOM criteria where PEM is a required symptom.

NICE evaluated scientific evidence for ME/CFS as it is currently defined and not for a case definition that was published nearly 30 years ago. Other reviews on ME/CFS, such as the recent one by IQWIG in Germany, have used a similar approach. (1)

It is incorrect to state that NICE “downgraded nearly thirty years of research.” The previous NICE guidance from 2007 on ME/CFS already highlighted PEM as a core feature of ME/CFS, and studies that used this description were not downgraded in the evidence review. Neither were studies that used the CCC, ICC, or IOM criteria mentioned above.

2. Blinding and subjective outcomes
White et al. write: “The NICE committee decided to downgrade all fatigue outcomes based on the premise that it is a subjective measure.” This is incorrect. Fatigue outcomes in studies with a low risk of bias such as the double-blind Rituximab trial were not downgraded.

NICE did downgrade quality of evidence when subjective outcomes (not just fatigue, but also pain, sleep, quality of life, etc.) were used in trials where participants and therapists were not blinded as this combination creates a high risk of bias. This grading is in accordance with the Cochrane Handbook which states that “the potential for bias cannot be ignored even if the outcome assessor cannot be blinded." (2) In the case of patient-reported outcome measures such as fatigue, the Cochrane Handbook considers patients to be the outcome assessor.

Moreover, trials of GET and CBT also included objective measurements such as fitness tests, actigraphy, and employment data and these indicated no clinically relevant improvements. (3)

3. Long-term follow-up
The largest studies on GET and CBT — the PACE (4) and GETSET (5) trials — failed to find significant benefits of these interventions at their longest follow-up. This suggests that initial improvements might be due to response bias or a placebo effect. It is questionable to recommend treatments if the long-term follow-up shows no benefit.

In both GETSET and PACE, a sensitivity analysis indicated that additional treatment received after randomization was unlikely to explain the null results. The authors of GETSET reported that “there is no evidence that the improvements observed in the SMC group were due to them having received more exposure to therapy than the GES group after trial completion.” (5) Similarly, in the PACE trial the control group caught up on the intervention group and “there was some evidence from an exploratory analysis that improvement after the 1-year trial final outcome was not associated with receipt of additional treatment with CBT or GET.” (4)

4. Harms
The Cochrane review on GET included only randomized trials but concluded: “We are uncertain about the risk of serious adverse reactions because the certainty of the evidence is very low.” (6) There was too little data on adverse effects to form a conclusion.

Surveys and qualitative studies, on the other hand, have consistently found a negative impact of GET on some ME/CFS patients. This has been reported for several decades, in multiple countries, and with little indication that harms are due to improper implementation of GET. (7) Considering the adage ‘primum non nocere’, it is sensible to use a lower threshold for evaluating evidence on the potential harms of a medical intervention compared with its potential benefits.

At the NICE Roundtable Discussion prior to Guideline release (8), health profession stakeholders had ample opportunity to raise concerns. Following clear, succinct responses from a representative of the committee, consistent with our comments above, no further objections were raised.

References
1. Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen (IQWiG). Current scientific knowledge on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). [N21-01]. 2023. Available from: https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_absc...

2. Higgins JPT, Thomas J, Chandler J, Cumpston M, Li T, Page MJ, et al. Cochrane Handbook for Systematic Reviews of Interventions. 2nd Edition. Chichester (UK): John Wiley & Sons; 2019.

3. Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Dec;5(2):2055102918805187.

4. Sharpe M, Goldsmith KA, Johnson AL, Chalder T, Walker J, White PD. Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial. Lancet Psychiatry. 2015 Dec 1;2(12):1067–74.

5. Clark LV, McCrone P, Pesola F, Vergara-Williamson M, White PD. Guided graded exercise self-help for chronic fatigue syndrome: Long term follow up and cost-effectiveness following the GETSET trial. J Psychosom Res. 2021 Jul 1;146:110484.

6. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. 2019 02;10:CD003200.

7. Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol. 2019 Sep;24(10):1318–33.

8. https://www.nice.org.uk/guidance/ng206/documents/minutes-31

Show Less
Conflict of Interest:
None declared.
 
Unpublished:

Published on their website under a short introductory article headed:
Standing Strong: Global ME Community unified in support of NICE 2021 ME/CFS Guideline

World ME Alliance

Global ME community is unified in firm support for the NICE 2021 ME/CFS guideline

The World ME Alliance, its 24 member organisations across 17 countries, and associated authors of this response firmly endorse NICE’s statement that they “reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that NICE has not followed international standards for guideline development which has led to guidance that could harm rather than help patients.”1

The authors identify eight arguments, all of which have been made and rebutted multiple times, including during an extraordinary roundtable that consequently delayed the publication of the ME/CFS guideline.2 It is essential to acknowledge that these arguments have been repeatedly found to be lacking.

[...]

We look forward to reading NICE’s detailed response when it becomes available, but wish to make clear the unity of the international ME community in its support of the 2021 NICE guideline “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management”.10

More at link.

58 signatories from ME organisations worldwide.
 
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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.
_____________________

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/
 
Charles Shepherd (medical adviser to the ME Association) had a letter published on the BMJ website in response to its report about the JNNP article: https://www.bmj.com/content/382/bmj.p1621/rr

Dr Shepherd posted the following on Facebook:

NB: The first part of my letter, which was concentrating on the conflicts of interest by some of the clinicians and researchers who authored this paper, has not been published.

People with ME/CFS welcome the recommendations in the NICE guideline

Dear Editor

The NICE guideline committee (of which I was a member) spent an enormous amount of time over three years reviewing all the evidence on CBT and GET from both clinical trials and from people with ME/CFS.

They concluded that the clinical trial evidence for the use of CBT and GET was of very poor quality and acknowledged that people with ME/CFS have consistently reported that CBT was ineffective and that GET made their condition worse - some ending up in wheelchairs as a result. off receiving harmful advice on activity mansagement.

The ME Association is therefore pleased to see that NICE is robustly defending the new recommendations regarding the use of CBT and the removal of GET and the way in which these recommendations were reached.

These recommendations have been widely welcomed by the ME/CFS patient community here and abroad, and by the vast majority of health professionals who are actively involved in managing people with ME/CFS in both primary and secondary care.

Competing interests: No competing interests
 
Well the delay has passed so here is mine.

____________________________________


I want to point out glaring omissions in the review by White and its 50 signatories. Following publication of the final draft of the guidelines for public consultation, the process was paused, the final publication delayed, so that a roundtable where those so-called "anomalies" could be voiced and heard. And they were.

After weeks of delay, the roundtable was held. Those so-called "anomalies" were presented. And it was concluded that there were no valid concerns warranting further delay or modification. Thus, the guidelines were published and NICE proceeded with their implementation.

There are few public references to this roundtable, as it was subject to privacy restrictions and its organization communicated in private. Snippets and a timeline have been documented on the Science4ME forum [1], and minutes have been published by NICE [2], alongside very extensive documentation of their process.

Since then, the German health body IQWIG has also concluded that much of the same evidence is unfit for purpose, excluding all but three trials for consideration [3], on the same evaluation that they are of low quality and subject to high levels of bias, with years of routine use in clinical practice having further made the case for their inadequacy. It is widely accepted that there are no effective treatments for ME/CFS. This remains the case, a failing that has been massively amplified by Long Covid, causing much the same illness in millions. The new guidelines merely reflect this fact.

The exclusion of the near totality of the evidence base by IQWIG, which many of the signatories, including two who are on the editorial board of JNNP, contributed to or frequently cite in their own work, is further evidence that the process NICE followed was adequate. It follows similar downgrades by the CDC in 2017 [4] and a thorough analysis by the National Academy of Medicine, then the Institute of Medicine, in 2015 [5].

It should also be noted that the much-publicized members of the committee who resigned in protest signed off on the guidelines before they left. This is documented in the aforementioned minutes. They may have had opinions about the substance of the guidelines, but they could not fault the process. And they did not. Their resignation may be over a difference of opinion, but it is immaterial to the process that NICE dutifully followed, as is alleged in the review by White.

And the most important detail in this sordid affair: NICE rejects all of those points [6]. NICE commented: "We reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that Nice has not followed international standards for guideline development which has led to guidance that could harm rather than help patients."

The evidence review was done by independent technical staff and followed NICE's standard procedure. Disagreeing with the outcome does not grant license to dismiss its process, especially from a position of long-held, and well-documented, biases and conflicts of interest.

[1] https://www.s4me.info/threads/nice-...rom-the-s4me-news-in-brief.27957/#post-421972

[2] https://www.nice.org.uk/guidance/ng206/documents/minutes-31

[3] https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_berichtsplan_v1-0.pdf?rev=209654

[4] https://virology.ws/2017/07/10/trial-by-error-the-cdc-drops-cbtget/

[5] https://pubmed.ncbi.nlm.nih.gov/25695122/

[6] https://www.theguardian.com/society...scouraging-exercise-is-flawed-say-researchers
 
I just found this one by Peter White (a different Peter White to the one who was lead author of the anomalies paper).

It starts:

The following points were submitted in a short Rapid Response but not published. The JNNP has stated that they took-down Rapid Reponses because of ‘inappropriate inflammatory language’. This reply includes more detail than the Rapid Response, but is similar in tone.

In Brief:
• White et al’s assertion that Post-Exertional Malaise is a new requirement in the 2021 NICE guideline is false. Post-Exertional Malaise was required in the previous 2007 NICE guideline.
• White et al’s assertion that, in trials, Graded Exercise Therapy was “only increased as the patient feels able, dependent on their symptomatic response”, is also false, see Moss-Morris (2005).
• There is a systemic under-reporting and dismissal of patient reports of harm across all medical fields. Dismissal of reports of harm repeats mistakes of other devastating medical scandals as evidenced by the UK Govt ‘Cumberledge Review’ published in 2020.

https://pubpeer.com/publications/95FD14B92656A4AD5498AD9928930C
Continues at:
https://pubpeer.com/publications/95FD14B92656A4AD5498AD9928930C
https://pubpeer.com/publications/95FD14B92656A4AD5498AD9928930C
 
And here is my rapid response submission:

Dear Editor,

Contrary to the claims made in the published review article, ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’ [1], NICE have rejected these in their entirety [2]. The article makes multiple allegations. This includes the opinion that the NICE process deviated from standard process and was, as a result, unexpected and/or unacceptable to the authors in its findings. The authors, whose extraordinarily long list of conflicts of interests, include being the developers, testers of their own clinical trials/therapies that have been deemed to be low quality by the NICE evidence review [3] dislike robust and thorough scrutiny. Sadly, the authors have failed to provide objective, robust evidence to back up their assertions. Neither did the authors demonstrate how they have counteracted their bias regarding their own theories, hypotheses, and resulting low quality evidence due to the use of well-known, flawed, poor-quality methods resulting in a high risk of expectation bias by relying largely on subjective outcome measures in clinical trials. [3] Due to the very nature of the phenomenon being assessed, such trials cannot be blinded. The complexity and severity of the condition required consideration by NICE to strengthen the scientific process, which is evidence of their determination to produce a robust guideline following the failure of the 2007 guideline.[4]

The article failed to inform the editor, reviewers, and readers about the pause in publication by NICE due to the challenge by a group of professionals, including some of the authors of this paper, prior to the proposed release of guidance in August 2021. During this pause, a round table was convened whereby evidence could have been presented to NICE which, if this passed a quality threshold, would have resulted in a reconsideration of findings. For the challenging group, who include co-authors of this paper, the outcome was that no evidence was presented, and this absence of evidence was agreed upon by attendees. There was nothing of substance on offer, as there is not in the article by White et al. now either. The NICE guideline was then published unaltered in October 2021, [5] after an unnecessary two-month delay.

The authors’ focus suggests that they believe NICE are exceptional in their assessment of the published evidence or are out-of-sync with other international institutions. This is troubling as the first reference that they use is the Institute of Medicine 2015 report [6]. After extensive review evaluating the evidence for the diagnostic criteria for ME/CFS, concluding that, “Patient reports and symptom surveys as well as scientific evidence consistently showed that impaired function, PEM (an exacerbation of some or all of an individual's ME/CFS symptoms after physical or cognitive exertion, or orthostatic stress that leads to a reduction in functional ability), and unrefreshing sleep are characteristic symptoms almost universally present in ME/CFS; thus, the committee considered them to be core symptoms.” Thus, it would be remiss of NICE to not incorporate this into their review process. Demonstrating that NICE did not arbitrarily redefine ME/CFS as suggested. It should be noted that PEM was also required in the 2007 NICE guidelines (CG53 2007, p14) for diagnosis, “characterised by post-exertional malaise and/or fatigue (typically delayed for example by at least 24 hours, with slow recovering over several days).” Also, p18, “The diagnosis of CFS/ME should, be reconsidered if none of the following key features are present: post exertional fatigue or malaise.” [5] The authors must have known this.

Word count 576 (excluding references).

References
1. White P, et al. J Neurol Neurosurg Psychiatry 2023;0:1–8. doi:10.1136/jnnp-2022-330463
2. ME/CFS guidance that discourages exercise is flawed, say researchers Available: https://www.theguardian.com/society...scouraging-exercise-is-flawed-say-researchers The Guardian newspaper.
3. Edwards, J. (2021). Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management. NICE guideline NG206. Appendix 3: Expert testimonies The difficulties of conducting intervention trials for the treatment of myalgic encephalomyelitis/chronic fatigue syndrome. Available: https://www.nice.org.uk/guidance/ng206/evidence/appendix-3-expert-testimonies-pdf-333546588760
4. National Institute for Health and Care Excellence. Myalgic Encephalomyelitis (or Encephalopathy)/Chronic fatigue syndrome: diagnosis and management. NICE guideline [NG206], 2021. Available: https://www.nice.org.uk/guidance/ng206
5. National Institute for Health and Care Excellence. Chronic fatigue syndrome/
myalgic encephalomyelitis (or encephalopathy) Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of CFS/ME in adults and children NICE guideline [CG 53], 2007. Available: https://sacfs.asn.au/download/CG53NICEGuideline.pdf
6. Institute of Medicine. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness. Washington, DC: The National Academies Press, 2015.
 
Ps., I know the journal office received my rapid response as I emailed them to check as I only received confirmation on the screen, not an email. This occurs if the rapid response is approved for publication on the website. So, mine like everyone else's rapid responses have fallen into a dark hole :(
 
Tom Kindlon said:
[This was initially posted on the JNNP then deleted with the following comment posted https://jnnp.bmj.com/content/early/...63.responses#notice-regarding-rapid-responses ]


The full text of MEAction UK’s rapid response submitted to the JNNP article can be read here:

https://www.meaction.net/2023/07/12...apid-response-to-the-jnnp-in-support-of-nice/
Click to expand...
A version of this has now been published:
https://jnnp.bmj.com/content/early/...atigue-syndrome-and-myalgic-encephalomyelitis
 
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