We call on NICE to remove all references to M.E./CFS from the new guideline on suspected neurological conditions, and to claims that M.E./CFS is a 'functional' disorder.

Background

The National Institute for Health and Care Excellence (NICE) are currently working on a new guideline for suspected neurological conditions.

In this guideline, it is claimed that M.E./CFS is a functional disorder and that functional disorders are likely driven by emotion, 'which may mimic physical disease'.

There has been no evidence provided to support these claims – they do not even comply with the guideline on M.E./CFS – and yet NICE purport that their guidelines are 'evidence-based'.

Recently, Forward ME, a collaboration of patient representatives, including the ME Association, made a written submission in respect of the new guideline, pointing out these issues and demanding that references to M.E./CFS be withdrawn.

The World Health Organisation categorises M.E. and CFS as disorders of the nervous system (i.e. neurological) and this distinction has been supported by the UK Government and Department of Health many times over the years – most recently in July.

The Petition

We wanted to give everyone the opportunity to demonstrate to NICE that it should remove all reference to M.E./CFS from the new guideline on suspected neurological conditions.

We believe that neurology should not be trying to reduce access to its' medical experts, but should be welcoming and supporting people with this disease. We need help, not disdain.

We need neurology to:

help with diagnosis and management throughout the period of ill-health

provide reassurance and understanding,

to advise on the best course of treatment,

be more involved with research into the biomedical nature of M.E./CFS

Please sign the petition and help us demonstrate to NICE that once again, we are not prepared to stand by while others make decisions about our healthcare without proper consideration and respect.

Thank you.

You can find more information about this petition on the ME Association website and across our social media platforms.



Please note:

This petition will close on Wednesday 11 October at 5pm