Approximatedly 25% of people with ME?CFS are classed as having severe or very severe ME – defined by NICE as –
People with severe ME/CFS are unable to do any activity for themselves or can carry out minimal daily tasks only (such as face washing or cleaning teeth). They have severe cognitive difficulties and may depend on a wheelchair for mobility. They are often unable to leave the house or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed and are often extremely sensitive to light and sound.
People with very severe ME/CFS are in bed all day and dependent on care. They need help with personal hygiene and eating, and are very sensitive to sensory stimuli. Some people may not be able to swallow and may need to be tube fed.
Given past failings in treatment for those with severe and indeed very severe ME and the huge impact on the lives of those affected directly and indirectly, the need for appropriate, consistent, and correct medical education is of vital importance. To this end Sir Jeremy Hunt MP tabled a question on 10th April 2026 (UIN 124498) asking “the Secretary of State for Health and Social Care, if he will require that healthcare professionals involved in the care of people with very severe ME complete condition-specific (a) training and (b) e-learning.”
Mrs Sharon Hodson MP Parliamentary Under-Secretary (Department of Health and Social Care) sketched out the current initiatives but without concentraing on very severe ME
NHS England, with support from the Department, has developed an e-learning programme to support healthcare professionals in the care of people with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), of all levels of severity. All four sessions of the e-learning programme are now available, with sessions one, two, and three having universal access, whilst the fourth session, which includes support and clinical management of severe ME/CFS, is only available to healthcare professionals. Further information can be found at the following link.
The Medical Schools Council will promote the e-learning programme to all United Kingdom medical schools and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS.
Additionally, the National Institute for Health and Care Excellence (NICE) has developed guidance on the diagnosis and management of ME/CFS, including mental health support for people with ME/CFS and their families. NICE guidelines are evidence-based, informed by clinical expertise, and represent best practice, and although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account.
