M.E. charities ‘baffled by last-minute delay’ to NICE Guideline – Forward-ME announcement

Statement on the delay to publication of the NICE Guidelines on diagnosis and management of ME

On Behalf of: Forward ME, Action for ME, ME Association, Doctors for ME, ME Research UK.

We are shocked and hugely disappointed to hear that the long-awaited NICE guidelines have been unexpectedly delayed at the last minute.

The new NICE guidelines bring clinical practice up to date with current scientific knowledge regarding ME**. Delays will hold-off still further the desperately needed improvements to patient care.

Many medical professionals, researchers and patient representatives have spent 3 years diligently reviewing and assessing the evidence.

The document has been approved by the committee and should be published.

The document removes support for therapies driven by outdated views regarding treatment for ME which are no longer supported by the science.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.

No minority party should be able to undermine the careful scientific consensus established by the NICE committee and the rigorous work that has been undertaken in good faith.

We urge NICE to publish this important work without delay, so doctors can get on and support patients with this often devastating disease.

Ms Nina Muirhead, head of medical education, Doctors for ME said:

“Doctors are in desperate need of improved support in how to care for patients, delaying that prolongs unscientific approaches which have no place in our medical community”.

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 practise. Nobody should be able to undermine that.”

**also known as Chronic fatigue syndrome

The above statement relates to this announcement from NICE this afternoon.

The new NICE guideline on ME/CFS was due to be published tomorrow (18th August 2021).

NEWS-MEDIA COVERAGE

• M.E. Charities ‘baffled by last minute delay' to NICE Guideline Publication: Forward-ME
• BBC Health: Outrage at chronic fatigue syndrome advice update pause
• The Guardian: UK health watchdog delays new ME guidance in therapy row
• The Telegraph: Health watchdog pauses plans to scrap therapy and exercise as treatments for ME
• The Independent: Health watchdog accused of ‘capitulating to vested interests’ over chronic fatigue as it delays new advice
• The Times: Disputed therapies for myalgic encephalomyelitis abandoned
• The Science Media Centre: expert reaction to the news that NICE have paused the publication of the updated guideline on ME/CFS:

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.”