Campaigners urge watchdog publish new ME guidance as delay putting thousands at risk

Campaigners are urging a health watchdog to publish a new guideline on diagnosing and managing ME, warning that each day of delay “puts more people at risk”.

The National Institute for Health and Care Excellence (Nice) had been due to issue an updated guideline on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in August.

An earlier draft guideline had indicated graded exercise therapy should no longer be recommended.

But just a day before the final guideline was due to be announced this summer, Nice said it was pausing publication because of disagreement on the contents.

Campaign group ME Action UK said it will present a petition of more than 21,000 signatures to a representative of Nice in London on Tuesday, urging them not to delay in publishing the guideline.

Nice is due to hold a roundtable meeting in London on October 18 with relevant professional organisations and representatives from interested patient groups to discuss “key issues” around the guideline.

The meeting will be chaired by Professor Dame Carol Black, who Nice said is independent of the organisation and of the development of the guideline.

ME Action is opposed to the use of graded exercise therapy, saying “evidence demonstrates this harms most people with ME” and that any evidence supporting its use “was deemed to be of low or very low quality by the independent Nice guideline committee”.

Sian Leary (pictured), from the group, said not publishing the guideline in August had been “devastating to thousands of people with ME” who she said had been “seriously harmed by graded exercise therapy”.

She added: “We are concerned that people arriving at clinics are still being given graded exercise therapy and harmed by it.

“If the guideline had been published on schedule these new harms could have been prevented. Every day of delay puts more people at risk.”

Last month, Dr Paul Chrisp, director of the centre for guidelines at Nice, said: “We acknowledge that patients will be concerned about these further developments in what has been a long and difficult guideline process.

“We hope that by holding a roundtable discussion we can understand the issues raised by the professional bodies to inform Nice’s thinking on the next steps for publication of the guideline.”

In August, the Royal College of Paediatrics and Child Health said it was “very pleased that this process has been paused”, adding that it was looking forward “to working with Nice to ensure that future guidance is of benefit to children, young people and those who manage their care”.

The NHS describes chronic fatigue syndrome (CFS) or ME as a long-term illness with a wide range of symptoms, the most common of which is extreme tiredness.

It can affect anyone, including children, but is more common in women, and tends to develop when people are aged between their mid-20s and mid-40s, the NHS added.

Current treatments include cognitive behavioural therapy (CBT), a structured exercise programme called graded exercise therapy (GET), and medication to control pain, nausea and sleeping problems.

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