Anger as NICE pauses advice on chronic fatigue syndrome therapy

pharmafile | August 18, 2021 | News story | Research and Development  

NICE has paused publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

The pause, just hours before planned publication, is due to a disagreement of its contents.

In a release, NICE said that it needs more conversations with patient groups and professionals so that the advice offered is further supported.

Many patients with ME or chronic fatigue syndrome (CFS) say the therapy, which encourages patients to slowly increase their levels of activity, makes their condition worse, rather than better.

The draft recommendations for England and Wales, published in November 2020, highlighted the importance that: “People remain in their ‘energy envelope’ when undertaking activity of any kind and recommends that a physical activity programme, in particular, should only be considered for people with ME/CFS in specific circumstances.”

It is not yet known if the final guidance will say the same when it is published.

The decision to pause the guidance has been criticised, Sian Leary, spokesperson from #MEAction 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.

We are shocked to hear that the actions of the medical establishment have led to the delay and we urge NICE to reconsider the decision and publish the guideline as scheduled.”

NICE said in a release: “The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.

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

“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.”

Lilly Subbotin

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