NICE Embroiled in Fierce Debate Over Decision to Delay New Guidance for ME

Peter Russell

August 18, 2021

Editor's note, 27 August 2021: NICE announced that it is to hold a roundtable event next month with an independent chair to "better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation".

A coalition of charities said it was "baffled" by a last-minute decision to delay publication by the health watchdog on updated guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The National Institute for Health and Care Excellence (NICE) said that it had been unable to produce a document on diagnosis and treatment of the condition "that is supported by all".

Groups, including Forward ME, Action for ME, the ME Association, Doctors for ME, and ME Research UK said they were "shocked" and "hugely disappointed" by the decision and called for the guidelines to be published.

However, two influential health institutions have welcomed the delay, suggesting in emails to Medscape News UK that the draft guidance needed to be rethought.

'Strong Views'

A statement by NICE said that the causes of ME/CFS were "still poorly understood" and acknowledged that there were "strong views" about how it could be managed.

"Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps," the statement said. "We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported."

According to NICE, the appraisal committee and patient groups had worked "diligently" to draw up acceptable updated guidelines but there were doubts that approved recommendations would be supported and implemented by health professionals and the NHS.

The situation meant that "people with ME/CFS may not get the care and help they need", the statement said.

It pledged to explore whether a consensus could be achieved.

Conflict Over Treatment Options

According to a report in The Times, the updated guidance would have recommended that graded exercise therapy (GET) should no longer be offered to people with ME/CFS and that cognitive behavioural therapy (CBT) should only be offered to support patients in dealing with the anxiety of being ill.

Guidance would also emphasise the importance of early diagnosis, the report said.

The coalition of ME charities acknowledged that the proposed guidance might take time to be accepted by "elements of the medical community", but said that there was no reason to delay publication.

However, Sonya Chowdhury of Action for ME said: "We are in the dark about this. The NICE committee has worked hard to produce balanced guidelines which reflect science and best medical practise. Nobody should be able to undermine that."

Anticipating new guidelines, a press release issued by the charity coalition under an embargo on Tuesday, said the new guidance would give the medical community "a chance to reshape its troubled history" in treating ME/CFS, which it said had been characterised by doubts over whether it is a distinct medical condition.

'Extreme Concern'

Commenting on the delay, Andrew Goddard, president of the Royal College of Physicians (RCP), said: "We were extremely concerned that the final guidelines proposed by NICE may not have taken into consideration the extensive comments we made to the draft version, particularly in relation to treatments we know to have significantly benefited many patients."

He added that there was "reasonable evidence" that GET, "while not without risk" should remain a treatment option.

The RCP also called for "specialist individualised rehabilitation for patients with complex rehabilitation needs".

Dr Goddard added: "We hope that in delaying the final publication of these guidelines, NICE will re-consider our evidence submitted and incorporate it into their final publication."

The Royal College of Paediatrics and Child Health also welcomed the decision to pause publication of the guidance. 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." It did not elaborate on its decision to welcome the delay.


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