4 August 2023

Anger over exercise advice in chronic fatigue syndrome

Chronic Disease Disability Exercise

Controversial guidelines have dropped support for graded exercise therapy and CBT, and some experts worry patients will miss out.

A group of Australian and international clinicians have been met with backlash after they critiqued the latest NICE advice against exercise and cognitive-behavioural therapy for patients with chronic fatigue syndrome.

Professor Paul Glasziou, GP and director of the Institute for Evidence Based Healthcare at Bond University, co-authored a review highlighting concerns with the development of the guideline and the harms it may have on patients.

The latest 2021 NICE guidelines now say graded exercise therapy should not be provided to patients with mild to moderately severe chronic fatigue syndrome, also known as myalgic encephalomyelitis. It also says cognitive-behavioural therapy is only beneficial for managing symptoms rather than being “a treatment of the core illness”.

In contrast, the 2007 guidelines recommended both rehabilitation therapies, and a NICE evidence review commissioned around this time concluded they “appeared to reduce symptoms and improve function, based on evidence from randomised controlled trials”.

Professor Glasziou and colleagues said they were concerned the new advice would “effectively deny clinicians the ability to offer graded exercise therapy and evidence-based cognitive-behavioural therapy to those patients who want them, and risks perpetuating chronic ill health and disability”.

Professor Glasziou was met with resistance on X (formerly known as Twitter) when he posted about the paper, with one user arguing it put “millions of people’s lives in danger”.

“These discussions are so irritating for patients because the starting assumption is that patients are unreliable witnesses to their own condition and that it’s unclear whether exercise aggravates the illness. It’s crystal clear that it does,” another posted.  

Professor Glasziou and colleagues acknowledged there were some “uncontroversial conclusions” about in the new guideline, including:

  • Postextertional malaise was a common and important symptom
  • Patients may not have their illness taken seriously
  • Treatments for CFS/ME should be negotiated and delivered in a collaborative fashion

The team also recognised simply telling patients to exercise more may make them worse.

“Exercise-based therapies for CFS/ME, such as cognitive-behavioural therapy and graded exercise therapy, do not benefit all patients,” they wrote.

But there were eight “anomalies” in the updated NICE guideline that raised concern, including:  

  • The use of a new definition of CFS/ME downgraded the certainty of evidence from previous trials
  • Minimisation of the importance of fatigue as an outcome
  • Non-standard use of GRADE (Grading of Recommendations, Assessment, Development and Evaluations) to assess the trial evidence
  • Interpretation of graded exercise therapy as mandating fixed increments of change when trials defined it as collaborative, negotiated and symptom dependent
  • Inconsistency with NICE recommendations of rehabilitation for related conditions, such as chronic primary pain

A key question in the review was why the guidelines were updated in the first place, with authors citing an internal NICE review from 2017 that concluded “there was no new evidence to justify a revision of the previous guideline”.

“A substantial change to the previous recommendations would be understandable if the balance of the evidence had fundamentally changed,” Professor Glasziou and colleagues wrote.

“While some reviews [published since the release of the 2007 guidelines] mentioned limitations in the evidence, every review concluded cognitive-behavioural therapy and graded exercise therapy improved fatigue and other outcomes.”

Professor Glasziou told TMR that while there were a small number of legitimate and constructive responses on social media that used facts or data, many more were simply disagreements at face value. 

“A lot of the replies related to things we had explicitly supported in the paper, that [the commentators] just ignored. I assume it’s because people didn’t read the paper,” he said.

“For example, people were saying we had ignored the biological or biomarker evidence and research out there for CFS/ME. [But] if they read the paper, we acknowledge CFS/ME is a serious illness and there are pathophysiological changes, but there is not agreement on what diagnostic biomarkers should currently be used.”

Professor Glasziou has since taken a break from the social media platform. 

This latest pushback against the updated guidelines follows a string of controversies.

Three clinician members of the NICE guidelines committee resigned in protest before the revisions were published, while a fourth member was stood down by NICE due to “continuing conflicts of interest” involving “providing information and commenting on key issues of concern to the CFS/ME patient community” during their time on the committee.

A NICE spokesperson defended the updated guidelines in a report published by The Guardian.

“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 spokesperson said.

“In developing our guideline, as well as bringing together the best available scientific evidence, we also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart.”

Journal of Neurology, Neurosurgery and Psychiatry 2023, online 10 July

This was part one of a series on the latest CFS/ME guideline debate. Tune in for part two in coming weeks.

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9 Comments on "Anger over exercise advice in chronic fatigue syndrome"

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Simone E
Simone E
3 months 23 days ago
The eight “major flaws” in the NICE guidelines outlined in the review, along with Professor Glasziou’s comments presented here, are misleading and disingenuous. What are presented as flaws are actually logical fallacies, as outlined in the article linked below. Readers should be aware that ME/CFS has been undergoing a paradigm change in recent years. What was once seen as a largely behavioural condition to be remedied with behavioural treatments, is now understood to be a biomedical condition for which these behavioural treatments are certainly ineffective and likely to cause harm. Like climate denialists in the face of the overwhelming evidence… Read more »
ME Patient
ME Patient
3 months 26 days ago
Professor Brian Hughes explained the issues with this article when a draft was initially leaked online. 1. NICE did not create a new definition of ME/CFS; it worked with the established definition by the Institute of Medicine. 2. NICE prioritized long-term outcomes over short-term ones for ME/CFS treatment, which is logical for a long-term illness. 3. NICE withdrew GET because there was no evidence GET was effective. The guideline document explains that this is because reports of patient harms are not outweighed by empirical evidence of therapeutic benefit 4. NICE did not downplay the importance of fatigue as an outcome;… Read more »
ME Patient
ME Patient
3 months 26 days ago
NICE did not create a new definition. The NICE criteria was largely based on the 2015 IOM criteria with a few minor tweaks. 15 experts spent a year reviewing over 10,000 peer reviewed studies to produce a report which cost $1M, they concluded PEM should be mandatory and included it in their new criteria. https://me-pedia.org/wiki/Institute_of_Medicine_report The IOM criteria is currently in use by the CDC. https://www.cdc.gov/me-cfs/resources/patient-toolkit.html Paul’s argues that PEM shouldn’t be mandatory and uses the CDC definition to support this but doesn’t make it clear it references old CDC criteria from 1994 and not the current CDC criteria which… Read more »
Beth Gaffney
Beth Gaffney
3 months 26 days ago
There seems to be a lot of reporting missing some crucial information on all of the reasons why GET/CBT has become so controversial. For example, the specific CBT used in GET/CBT is a bespoke form of CBT based on the assumption that patients have developed faulty illness beliefs, and combined with deconditioning, is leading to the perpetuation of illness. There is no proof, whatsoever, that this is true. It seems both contradictory, as well as condescending towards patients, to then go on to claim ME/CFS is a “serious illness” with “pathophysiologal changes” if the actual treatment considers ME/CFS as form… Read more »
Beth Gaffney
Beth Gaffney
3 months 26 days ago
I really hope that the PACE Trial that informed the old NICE UK guidelines is not still being considered as a legitimate form of evidence in this matter. For an easy to understand explanation see: https://youtu.be/PRCQ-kIxQyY After the debacle of the PACE Trial it should not be surprising that so many patients have developed an anti-psychiatry bias. I’m not against the idea that the current, updated NICE guidelines may be flawed. I’m also not against the idea that gentle exercise with a high degree of caution could be considered for indivual patients. But to suggest that we should go back… Read more »