The Journal of Neurology, Neurosurgery and Psychiatry (JNNP) has finally decided to publish a very comprehensive reply from NICE to an opinion piece on the 2021 Guideline on ME/CFS, that was published last year.
This opinion piece was very critical of parts of the Guideline, especially the way in which NICE had reviewed all the evidence from clinical trials into possible forms of treatment which resulted in the removal of the recommendation for graded exercise therapy (GET). This was due to lack of sound evidence from clinical trials on the effectiveness of GET and patient evidence of significant harm.
The reply from NICE represents a very robust defence of the way in which NICE reviewed all the evidence and the new treatment recommendations – centered around energy management and pacing – that were agreed by the guideline committee. We would like to thank Dr Peter Barry, Baroness Ilora Finlay, Kate Kelly and Toni Tan for preparing this very thorough reply. We hope that this will now mark an end to these unfounded criticisms of the new NICE guideline on ME/CFS from a tiny minority of healthcare professionals.
The Journal of Neurology, Neurosurgery and Psychiatry (JNNP): Neuropsychiatry Review: NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence
Abstract
In 2021, the National Institute for Health and Care Excellence produced an evidence-based guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a disabling long-term condition of unknown cause. The guideline provides clear support for people living with ME/CFS, their families and carers, and for clinicians.
A recent opinion piece published in the journal suggested that there were anomalies in the processing and interpretation of the evidence when developing the guideline and proposed eight areas where these anomalies were thought to have occurred. We outline how these opinions are based on a misreading or misunderstanding of the guideline process or the guideline, which provides a balanced and reasoned approach to the diagnosis and management of this challenging condition.
- Update (07.03.24): We wrote to the BMJ/JNNP and asked if the NICE response could be made freely available so that the patient community might have access. Previously only the abstract could be read. We are delighted to say that you can now read the full response on the Journal's website.