Health watchdog pauses publication of updated ME guidelines after disagreement on its contents

A health watchdog has paused publication of its updated guideline on diagnosing and managing ME because of disagreement on its contents.

The National Institute for Health and Care Excellence (Nice) said it had not been able to produce a guideline on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) “that is supported by all”.

The Times reported that the updated guideline was due to say graded exercise therapy should no longer be offered to people with ME and that cognitive behavioural therapy (CBT) should only be offered to support patients in dealing with the anxiety of being ill.

Nice said there had been “issues raised” around the final guideline that meant it would need to have conversations with both professional and patient stakeholder groups.

Campaign group ME Action UK accused Nice of “capitulating to the vested interests of those who support graded exercise therapy”.

But the Royal College of Paediatrics and Child Health welcomed the pause.

A spokesperson said: “We are very pleased that this process has been paused and we look forward to working with Nice to ensure that future guidance is of benefit to children, young people and those who manage their care.”

Nice said that unless the recommendations in the guideline are “supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need”.

Draft guidelines by Nice for consultation in November 2020 said programmes based on fixed incremental increases in physical activity or exercise, such as graded exercise therapy, should not be offered.

In that document, the organisation recognised that its guideline in 2007 had made recommendations on CBT and graded exercise therapy, but that both treatments are controversial for the condition, amid disagreements and uncertainty about their effectiveness among both people with ME/CFS and health providers.

In a statement on Tuesday, a day ahead of when its updated guideline was due to be published, the watchdog said: “Nice has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.

“We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently.

“However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.

“In order to have the desired impact, the recommendations must be supported by those who will implement them and Nice will now explore if this support can be achieved.”

Sian Leary, spokesperson for ME Action UK, said: “At a time when Nice needs to show strength, and to back their own independent processes, they have instead shown a depressing level of weakness.

“They are capitulating to the vested interests of those who support graded exercise therapy, instead of standing up for the thousands of people being harmed.”

Urging Nice to reconsider, she added that the organisation, which is made up of patients and carers working for more recognition and research for ME, is “shocked to hear that the actions of the medical establishment have led to the delay”.

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