Guardian: UK health watchdog delays new ME guidance in therapy row

August 18, 2021


Charities dismayed as move to stop recommending graded exercise therapy is opposed by some medical groups

The National Institute for Health and Care Excellence (Nice) has withdrawn long-awaited landmark guidance on ME hours before its planned publication amid a backlash from medical groups.

Charities and patient groups fighting for greater recognition of the poorly understood condition as a medical illness rather than a psychological problem had welcomed the planned guidance, which was due to stop advising doctors to administer a controversial therapy.

This disputed therapy, called graded exercise therapy (GET), involves incremental increases in physical activity to gradually build up tolerance. Patient groups have argued its use suggests those with ME have no underlying physical problem but are having symptoms due to inactivity…

Extracts

On Tuesday, leaks about the final Nice recommendations prompted angry reactions from some medical groups, which Nice suggested had triggered the pause in publishing. “It has become apparent that a number of professional groups are unwilling to support the guidelines,” a spokesperson said, adding that it was an unusual step and that a new publishing date had not yet been decided.

Charities and patient advocates voiced shock and disappointment. “Many medical professionals, researchers and patient representatives have spent three years diligently reviewing and assessing the evidence. The document has been approved by the committee and should be published,” the charities Forward ME, Action for ME, ME Association, Doctors for ME and ME Research UK said in a joint statement.

“The document removes support for therapies driven by outdated views regarding treatment for ME which are no longer supported by the science. We understand these new guidelines may take time to become accepted by elements of the medical community, but they should not be delayed.”

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 practice. Nobody should be able to undermine that.”

A spokesperson for the Royal College of Paediatrics and Child Health said it was “very pleased” about the pause 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”.

The publication of the final guidelines had long been planned for this week, and the Guardian understands all stakeholders involved in the guidance were provided with an embargoed copy of the final report two weeks ago.

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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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