Cambridge ME Support Group’s ‘dismay’ at halt in publication of chronic fatigue NHS guidelines

Cambridge’s ME Support Group has reacted with “dismay” at the about-turn which has seen NICE – the National Institute for Health and Care Excellence – abruptly pause publication of its updated guidelines on the diagnosis and management of chronic fatigue syndrome.

The unravelling of the much-awaited guidelines began on August 3 with the resignation of three members (a fourth was removed by NICE) of the NICE guideline development committee for myalgic encephalomyelitis, aka chronic fatigue syndrome (ME/CFS). The committee was set up to update previous advice given on ME and published its initial draft guidance in November 2020.

A BMJ (British Medical Journal) report stated that “the departures suggest divisions within the committee over the guideline’s final content, which is an update on 2007 guidance on diagnosing and managing ME/CFS”.

At the core of the dispute – and the subject of a petition started by the Cambridge ME Support Group – is the role, if any, CBT should play in the treatment of ME sufferers. For the sufferers involved, offering CBT and/or GET (guided exercise therapy) as treatments is misguided at best and a ploy by cognitive psychologists to retain control of the treatment pathway at worst.

The group said in a statement: “The Cambridge ME Support Group and the Cambs Rural ME Support Group are deeply dismayed at the ‘pausing’ of the launch of the new NICE guidelines on the management of ME/CFS.

“The pause has been forced by behind-the-scenes pressure from the medical establishment. Eminent figures are likely to suffer reputational damage and loss of influence if the old treatments are abandoned.

“The new guidelines, based on a thorough assessment of scientific and medical evidence, abandon the discredited theory that ME/CFS is a mental disorder and set out best practice for management of the condition.

“ME/CFS is made worse by over-exertion. We had been keenly anticipating a move away from the old approach of forcing sufferers to undergo programmes of escalating physical exertion, which all too frequently lead to relapses and sometimes a permanent worsening of an already severely disabling illness.

“The ‘pause’ is contrary to NICE’s own procedures and is a betrayal of its mission to promote best practice in the medical services. It must not become ‘cancellation’. We urge NICE to publish the guidelines as soon as possible.

“We ask all concerned citizens to write to their MPs, asking them to contact NICE and remind it of its duty to serve the interests of patients, not of the establishment.”

The group’s online petition – ‘Don’t let vested interests perpetuate harmful treatments for ME/CFS’ – has attracted more than 9,000 signatures. The group’s chair, Dr Mark Harper, says that the shift to a post-CBT/GET era has been delayed by a late spanner in the works from traditional treatment providers. He suggests progress to a post-CBT era was spiked by “the highly propagandistic article [which] appeared in the BMJ, blackening the committee and its work and suggesting it had been taken over by patient activists, a narrative that the resignations fed into – the article cited them specifically”.

Daniel Zeichner, MP for Cambridge, said: “Mark is a formidable campaigner and after he got in touch on this issue I contacted the government minister. ME is a highly complex condition.

“It is vital that patients receive the best treatment and care that takes account of their needs. I believe ministers must work with patients, charities, researchers and NICE to ensure that treatment and care for ME is appropriate. While the two are different conditions, ME and long Covid share similarities. The NHS has launched a network of service centres nationwide to treat long Covid.

“I recognise that the urgency of research into long Covid contrasts with the experience of people living with ME although it may be an opportunity to learn more about the longer-term consequences of viral infections, which could in turn benefit people with ME.”

NICE has arranged a roundtable discussion with an independent chair for later this month “to better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation”.

The roundtable event was dismissed by Cambridge ME Support Group as a political stunt.

Dr Harper said: “Scientifically and in terms of NICE’s remit this is incoherent. An expert panel has spent three years painstakingly examining the facts, taking evidence from all stakeholders. A one day-conference will add nothing of value to this process. It is entirely outside NICE’s procedures.

“It is simply political.”