BBC Health: Outrage at chronic fatigue syndrome advice update pause

August 18, 2021


A health watchdog has paused a final update to ME treatment guidance just hours before planned publication due to disagreement on its contents – a move that has angered some charities.

NICE has acknowledged that the controversy over the best treatment has served only to alienate many people with the condition and, in some cases, undermined the confidence of those caring for them.

NICE said it wanted to thank everyone who had contributed to the guideline, particularly the committee and the patient groups who had 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,” it said.

Sian Leary, from #MEAction UK, accused NICE of “capitulating to the vested interests of those who support graded exercise therapy, instead of standing up for the thousands of people being harmed.”

Other groups including Forward ME, Action for ME, ME Association, Doctors for ME and ME Research UK criticised the delay, saying the document had been approved by the committee and should be published.

Andrew Goddard, president of the Royal College of Physicians, 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.

“There is reasonable evidence, for example, that graded exercise therapy helps a group of patients with ME/CFS and, while not without risk, our experts strongly support its ongoing use as an option in this condition.

“Similarly, our experts would strongly recommend specialist individualised rehabilitation for patients with complex rehabilitation needs.

“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.”

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Prof Chris Ponting, Professor of Medical Bioinformatics, University of Edinburgh; Investigator, DecodeME study, said:

“The new guidelines should receive support from both professionals and patients alike. NICE took due care and attention developing these guidelines in a process lasting 4 years.

“It applied rigorous methodology, for which it is world-renowned, and recruited highly regarded professionals and lay people to the review panel. Consensus decisions were taken by the panel for a much improved set of guidelines.

“It would be understandable if implementation of the completed guidelines takes additional time to put new practice in place.”

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