The most recent ME Association petition called on NICE to amend its proposed guideline on suspected neurological conditions, and remove all reference to ME/CFS being a functional disorder.
We wrote to Sir Andrew Dillon last Friday, with a covering letter (below) and enclosed the final petition – supported by 13,593 people – along with 199 pages of comments; such was the strength of feeling shown.
Dear Sir Andrew,
Firstly, thank you for the recent decision to fully review and update the NICE guideline for ME/CFS. It was a very welcome development and, as registered stakeholders, The ME Association and Forward ME Group (a collaboration of ME/CFS charities of which we are a member) are very much looking forward to representing the patient community at future meetings.
I am writing to you today in support of the Forward ME Group submission as stakeholders in the development of a new guideline for suspected neurological conditions. The draft guideline currently includes reference to ME/CFS being an example of a ‘functional disorder’ which the guideline defines as a condition that is ‘emotionally generated’ and ‘which may mimic physical disease’. This ‘functional disorder’ classification is then used as a basis for advising health professionals to not refer patients with specific ME/CFS symptoms such as deteriorating cognitive dysfunction for a neurological opinion.
The submission sets out the reasons why this description of ME/CFS is inaccurate and rather alarming – especially as it is not reflected in CG53, the guideline for ME/CFS, and as this disease is recognised by the World Health Organisation (in ICD10) and Department of Health, as being neurological.
In support of this submission, The ME Association launched a public petition for a period of two weeks, that enabled people who are affected by ME/CFS to demonstrate their support that this erroneous description and implied causation be removed.
The petition closed on 11th October and was supported by 13,593 people – all of whom want to see all references to ME/CFS being a ‘functional disorder’ removed from the new guideline and/or ME/CFS removed in its entirety.
As well as enclosing the petition for your reference, I have also enclosed 199 pages of comments – such was the strength of feeling about this error – from patients, carers, family members of the severely affected and health professionals working in this field, for example:
“Having been a specialist therapist for 20 years working with CFS/ME patients I can assure you that this is not a functional illness.”
“This devastating disease has destroyed my life and that of others I’ve met. Adding to that destruction by denying the revealing international medical research highlighting the physical dysfunctional processes and pretending it is psychological in origin is heartlessly cruel.”
Neurology should be welcoming people with ME/CFS and not trying to pass them off onto other specialisms, especially when neurology can play such a key role in diagnosis and management.
We would very much like the guideline development members, who are meeting to consider stakeholder submissions and finalise the suspected neurological conditions guideline, to consider the content and strength of feeling demonstrated by this petition and in the comments, it attracted.
If NICE can again show that it has listened to feedback from stakeholders, patients and their representatives – as well as professionals working in the field – and correct the error in this new guideline, we believe the decision will be as warmly welcomed by the ME/CFS patient community as your decision to review the guideline for ME/CFS.
We would welcome an explanation as to how this error arose and why, when NICE prides itself on consideration of the evidence-base, no evidence was considered before ME/CFS was deemed to be a ‘functional disorder’ and referral of patients to neurology was decided to be unnecessary.
Please show you have listened and take on board this significant feedback.
I look forward to hearing from you in due course.
With kind regards
Dr Charles Shepherd.
Hon Medical Adviser