Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what steps are being taken to improve definitions of myalgic encephalomyelitis for diagnosis.

Information on the exact number of patients receiving treatment for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is not collected. The National Institute for Health and Care Excellence (NICE) clinical guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children estimates that the annual prevalence is approximately 4,000 cases per million of the population.

The NICE clinical guideline set outs best practice for clinicians on the diagnosis, treatment, care and support of people with the condition and supports commissioners to to plan services for local populations. NICE routinely reviews its guidance to ensure it reflects the latest available evidence, including international evidence. In spring 2017, NICE reviewed the CFS/ME guideline to assess whether new research on CCFS/ME would impact on the current guideline recommendations. This included looking at new evidence concerning diagnostic criteria. Having assessed the evidence, NICE published its provisional recommendation not to update the NICE guideline for consultation on 10 July for a period of two weeks. NICE’s final recommendation is expected in October 2017.

In terms of training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP) set the standards for postgraduate medical education in general practice. General practice is where most patients with CFS/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in the UK within the context of the National Health Service and is a key part of general practitioner’s (GPs) qualifying exams.

Once fully qualified, clinicians are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This activity should include taking account of new research and developments in guidance, such as that produced by NICE.

The Department has made no assessment has been made of guidelines on CFS/ME published by health authorities in Canada and other countries.