Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of the adequacy of NHS care for patients in England with severe and very severe myalgic encephalomyelitis; and what steps they are taking to improve it.

We published the final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), on 22 July, which focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

The commissioning of ME/CFS services is the responsibility of local integrated care boards based on the needs of their local population. The ME/CFS Final Delivery Plan includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.

To support healthcare professionals in the diagnosis and management of conditions like ME/CFS, the National Institute for Health and Care Excellence (NICE) published guidance for ME/CFS in October 2021, a copy of which is attached.

It recommends that people with ME/CFS should be referred for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are losing weight and at risk of malnutrition. The guidance also states that clinicians should recognise that symptoms of severe and very severe ME/CFS may mean that people are unable to eat and digest food easily and may need support with hydration and nutrition, and that the support provided could include oral nutrition and enteral feeding.

NICE guidelines are evidence-based, informed by clinical expertise, and represent best practice. Although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account.