Written questions tabled by Greg Stafford MP, Jo Platt MP and Tom Morrison MP in March/April 2026 have been answered. Greg, Jo and Tom are part of our Parliamentary Champions Network and we supported them in drafting their questions, following the DHSC's announcement regarding the delay to discussions regarding the commissioning of a specialist service for very severe ME.
Greg Stafford MP asked two questions:
"To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with very severe ME following the decision to pause development of a national specialist service until April 2027."
See question here.
"To ask the Secretary of State for Health and Social Care, if his Department will engage with the ME community to develop an interim plan for supporting people with very severe ME until suitable long-term provision is in place nationally."
See question here.
Jo Platt MP asked the following question:
“To ask the Secretary of State for Health and Social Care, to outline what interim arrangements will be put in place to ensure care and support for people with very severe ME, following the decision to pause development of a national specialist service for this group."
See question here.
Sharon Hodgson MP, Health and Social Care Parliamentary Under-Secretary of State responded to the above questions:
The Government published the ME/CFS Final Delivery Plan in July 2025, which is available at the following link:
https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan(opens in a new tab)
The plan focuses on three main areas to improve care and support for those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease. It also sets out a series of actions, which will help address the key challenges and drive forward improvements to outcomes and quality of life for people living with ME/CFS in England.
The Department worked closely with ME/CFS patients, carers, clinicians, charities, research funders and researchers throughout the development of the plan. This engagement has helped to shape new and more ambitious actions that deliver meaningful change for the ME/CFS community.
Due to transformation in NHS England, the decision has been made to delay the action to review a case for a specialised service commission until April 2027. Until this time, integrated care boards (ICBs) should continue to commission appropriate services for patients with very severe ME/CFS as needed. ICBs are responsible for the commissioning of services for all severity levels of ME/CFS. NHS England and the Department are developing a new template service specification for mild and moderate ME/CFS which will include reference to severe and very severe ME/CFS. Officials, alongside stakeholders, are considering interim measures to support people with very severe ME/CFS.
The Department and NHS England will continue to work with stakeholders across and beyond government and the NHS to progress the agreed actions set out in the plan and to ensure the best possible care for people with ME/CFS.
Tom Morrison MP asked the following two questions:
“To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impacts of a) the abolition of NHS England and b) changes to ICBs on the final delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome."
See question here.
“To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with severe Myalgic encephalomyelitis in the context of delays to the consideration of a specialised service for people with very severe Myalgic encephalomyelitis and Chronic fatigue syndrome."
See question here.
Sharon Hodgson MP, Health and Social Care Parliamentary Under-Secretary of State responded to the questions:
Officials in the Department and NHS England, together with stakeholders, are currently considering interim measures to support patients with very severe myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).
Officials have considered the impact of the abolition of NHS England and the changes to integrated care boards (ICBs) on the actions within the final delivery plan on ME/CFS from July 2025.
We are incredibly grateful to our Parliamentary Champions for raising these urgent concerns in Parliament. We stand with the wider ME community in calling the delay unacceptable and we are continuing to meet with MPs and the APPG on ME to further advocate for those who are most severely affected.
