Written questions tabled by Baroness Scott in May 2026 have been answered.
Baroness Scott is part of our Parliamentary Champions Network and we supported her in drafting these questions for World ME Day.
Baroness Scott asked the below three questions:
“To ask His Majesty's Government what guidance is in place for hospitals, community services and integrated care boards about the care and management of people with severe and very severe myalgic encephalomyelitis; and how compliance with the guidance is monitored.”
“To ask His Majesty's Government what guidance they have issued to integrated care boards about commissioning appropriate provision for patients with myalgic encephalomyelitis/chronic fatigue syndrome before specialist services are established.”
“To ask His Majesty's Government what interim measures they plan to put in place to support people with severe and very severe myalgic encephalomyelitis following the delay to the establishment of specialist services.”
Baroness Merron, the Parliamentary Under-Secretary of State for Women's Health and Mental Health, responded to the three questions earlier this month:
“Officials in the Department and NHS England, together with stakeholders, are currently considering interim measures to support patients with very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is ahead of my Rt Hon. Friend, the Secretary of State for Health and Social Care, considering whether a specialised service should be prescribed for very severe ME/CFS.
These measures include referencing severe and very severe ME/CFS in a new template service specification that is being developed for mild and moderate ME/CFS. This template service specification, therefore, aims to provide support for ME/CFS service providers and commissioners to improve care and support for people living with all levels of severity of ME/CFS.
Integrated care boards (ICBs) are expected to commission services for people with ME/CFS across all levels of severity, including those with severe and very severe ME/CFS, in line with national standards, service specifications, and clinical access policies set by NHS England. Prioritisation and funding remain at the discretion of ICBs.
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. Although NICE guidelines are not mandatory, so ICBs are not routinely monitored on their compliance, healthcare professionals are expected to take them fully into account.
NHS England, with support from the Department, has developed an e-learning programme to support healthcare professionals in the care of people with 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 is available on the NHS.UK website. As the e-learning programme is not mandatory, take-up at healthcare professional level is not routinely monitored.
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.”
Baroness Scott also asked the following question:
“To ask His Majesty's Government how people with lived experience of myalgic encephalomyelitis will be involved in the design and delivery of the awareness campaign.”
Baroness Merron, from the Department of Health and Social Care, responded to this question at the start of June:
“Officials from the Department are engaging directly with a number of stakeholders, including representatives with lived experience of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and representatives from patient groups and charities, in the development of the awareness campaign. These stakeholders are members of the ME/CFS post-publication stakeholder engagement group, formerly the Task and Finish Group. Officials, together with these stakeholders, are considering the most effective options in the design and delivery of this campaign.”
We are grateful to Baroness Scott and our Parliamentary Champions for continuing to raise these important questions in Parliament. Baroness Scott will also be tabling a debate on Severe ME in the House of Lords next week. You can read more about this here.
We stand with the ME community in urgently calling for stronger action to improve care and support for people with ME, particularly those who are severely and very severely affected. We will continue to work with Parliament to push for support, accountability and meaningful change
