Health watchdog accused of ‘capitulating to vested interests’ over chronic fatigue as it delays new advice

Regulator pauses guidelines just a day before they were due to be published

A health watchdog has been accused of “capitulating to vested interests” after it paused a planned change to guidelines on the diagnosis and treatment of chronic fatigue after outcry from some doctors.

The National Institute for Health and Care Excellence (Nice) was preparing to publish new advice on managing chronic fatigue, or myalgic encephalomyelitis (ME) which would have said exercise therapy and cognitive behavioural therapy should not be used with most patients.

The planned advice was criticised by some, with four members of the committee responsible for drawing up the guidance resigning in recent weeks.

On Tuesday, Nice said it was pausing the publication after issues had been raised.

The row centres on the approach to chronic fatigue as a mental condition that can be helped with therapy and exercise which is gradually increased. While some doctors claim patients can benefit from these approaches, other groups say it means patients with debilitating conditions are too often told “it’s all in the mind.”

The debate has taken on new significance in the wake of the Covid pandemic with more than 400,000 people said to be experiencing symptoms of long Covid which for some can include elements of chronic fatigue.

Nice has said its guideline recognises the condition is a chronic medical problem with “no one size fits all” approach to symptoms. The causes of chronic fatigue are still not fully understood.

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.

In a statement Nice said it had taken the decision to pause publication saying: “Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps.”

It added that despite the best efforts of the committee “we have not been able to produce a guideline that is supported by all.”

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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