On Monday, Forward-ME and member charities attended a round table to review the new ‘NICE guideline on ME/CFS’ with representatives from NICE and clinical groups.
The meeting followed the Chatham House Rule, meaning that we cannot attribute comments to individuals. This ensured that all groups were able to speak freely.
The round table reviewed the thorough work of NICE and the guideline committee in assessing the evidence. There was clear acceptance of Post-Exertional Malaise (PEM) as a key marker, which distinguishes ME from other causes of chronic fatigue. A number of clinical trials omitted this requirement.
NICE presented the detailed evidence review, highlighting the lack of meaningful evidence to support Graded Exercise Therapy (GET), as defined by a number of trials including PACE. The round table heard reports of the harm caused by GET, and it was noted that some clinics still follow this practice. It was recognised that the guideline rejected the ‘deconditioning hypothesis’ of ME.
The meeting noted the lessons of the Cumberlege review, and the need to acknowledge patient experiences when they report harm.
NICE detailed the rationale for recommending ‘Energy Management’, established in the new guideline. This approach, undertaken collaboratively with patients, can improve outcomes while avoiding the harm often reported from past interventions. This is a key aspect of the guideline.
Many children with ME have been subjected to child protection processes for declining treatment plans or missing school. There was concern that ME be distinguished from ‘Fabricated and Induced Illness’ (FII), to avoid unjustified child protection orders against parents. The rationale in the guideline was explained, and the meeting discussed a number of cases which illustrated the challenges of safeguarding. This area may be further re-enforced.
There was broad support for the recognition in the new guideline that CBT does not cure ME. This counters past hypotheses that ‘abnormal illness beliefs’ underpinned the disease. While CBT may help some ME sufferers to deal with the distress that can accompany the disease, it is not curative.
People with ME need to be supported by clinicians with relevant training, ensuring that management of the disease is effective and safe. The meeting heard that supporting people with ME is a separate specialty from rehabilitation from other causes, and the need for improved education was recognised.
Attendees highlighted potential challenges in resourcing and commissioning the services recommended in the new guidelines. Concerns were raised that this could result in decommissioning of some existing ME clinics, and future clinical models were discussed.
NICE planned to review feedback from the roundtable, and has since announced that it will publish the guideline following a meeting of its Guidance Executive next week.