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M.E. charities baffled by delay to NICE guideline

August 17, 2021

Statement on the delay to publication of the NICE guideline on diagnosis and management of M.E., on behalf of Forward ME, Action for ME, ME Association, Doctors for ME, and ME Research UK.

We are shocked and hugely disappointed to hear that the long-awaited National Institute for Health and Care Excellence (NICE) guidelines have been unexpectedly delayed at the last minute.

The new NICE guideline brings clinical practice up to date with current scientific knowledge regarding M.E. Delays will hold-off still further the desperately needed improvements to patient care.

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The guideline removes support for therapies driven by outdated views regarding treatment for M.E. which are no longer supported by the science.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.

Ms Nina Muirhead, Head of Medical Education, Doctors for ME, says:

“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, Chief Executive, Action for M.E., says:

“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.”

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