Overview

The NICE guideline for CFS/ME is currently undergoing an official review but we understand the recommendation before the committee is for no action to be taken.

As stakeholders, the ME Association believes that the current guideline is not fit for purpose and that we are not being afforded a fair opportunity to help produce a better version.

We believe the guideline should be improved to reflect international biomedical research and medical opinion and the overwhelming evidence against current treatment recommendations - specifically in relation to graded exercise therapy.

We also feel recent re-analysis of PACE Trial data and growing international concern about the efficacy of this research, and those therapies it examined, should result in a reappraisal of their use in this guideline.

We are also moved by the apparent failure of secondary care to adopt the NICE diagnostic criteria and other aspects of the current guideline, including specialist provision - most notably home visits - for those severely affected.

The ME Association will be taking part in the NICE consultation process (which begins 10th July and continues for two weeks), but we wanted to offer the patient community the chance to demonstrate to NICE just how unhappy it is with the current guideline.

Summary of our demands:

We want a complete and proper review of the existing guideline with full stakeholder input and for it to include recognition of published and emerging international research evidence and medical opinion

We want the NICE guideline returned to the active list where it can be reviewed every two years and be updated to reflect emerging research knowledge, until such time as stakeholders determine it to be satisfactory

We want NICE to amend the current guideline to appropriately recognise CFS/ME as a neurological disease – in accordance with the position taken by the UK Govt. and Dept. of Health – and give more regard to characteristic physical symptoms

We want NICE to remove Graded Exercise Therapy as the recommended treatment for patients who are moderately affected and to place an appropriate health warning against general use of this therapy in CFS/ME specialist clinics

We want NICE to recognise that patient evidence relating to illness management indicates that 'pacing' is the most employed approach and for NICE to ensure it is recommended for all illness severities

We want NICE to acknowledge that despite their guideline, clinical care and specialist provision is falling short of the standards originally expected - particularly in relation to those who are severely affected

This petition will close on Monday 24 July at 9.00 am. We will then ensure it is presented to the NICE guideline committee for delivery to Sir Andrew Dillon.



For more information, please visit the ME Association website and Facebook pages.