When the ME/CFS Delivery Plan was published in July 2025 the Provision of health services section stated that NHS England would co-design resources for systems to improve services, including the development of the template service specification for mild and moderate ME/CFS which would fully take into account NICE guidelines on ME/CFS and be disseminated to all integrated care boards (ICBs) to inform their commissioning decisions and support quality of local service provision to match local needs.
For severe and very severe ME however, the undertaking given was less specific – namely “DHSC, with NHS England, will explore whether a specialised service should be prescribed by the Secretary of State for Health for very severe ME/CFS.”
Several parliamentarians have tabled written qiestions on progress being made – especially in light of the planned abolition of NHS England. It is useful to summarise the current state of progress which has evolved even in the few weeks since teh firts question was tabled. Answers began with severe ME being mentioned within a mild/moderate template, to a decision being delayed until April 2027, to responsibility being pinned onto ICBs to most reently that interim arrangements are being discussed.
- When Jo Platt MP asked what discussions the DHSC had regarding the commissioning of a specialised service for people with very severe ME/CFS since the delivery Plan was published she was told that NHS England had already started its work on co-designing resources, including a ‘template service specification’ for mild/moderate ME/CFS services, to support systems to improve services for mild and moderate ME/CFS. NHS England and the Department of Health and Social Care have met with a group of key stakeholders to move this work on. This template will now include reference to severe ME/CFS.
- To Lee Dillon MP it was revealed that an e-learning programme was available, with sessions one, two, and three having universal access, whilst the final session on managing severe ME/CFS was only available to healthcare professionals.
- Sureena Brackenridge MP attempted to uncover why “.. the action relating to a specialised service for patients with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was included in the Final Delivery Plan without full consideration of system constraints affecting its implementation.” The answer did uncover that –
- Integrated care boards (ICBs) are responsible for the commissioning of specialised services that meet the needs of their local populations …. but decisions on commissioning and service configuration ultimately rest with individual ICBs, based on local need. This is also the case for the commissioning of services for all levels of severity of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).
- The action within July 2025’s final delivery plan on ME/CFS, to consider 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 has been delayed until April 2027.
- Officials in the Department and NHS England are currently considering, along with ME/CFS stakeholders, interim measures to support patients with very severe ME/CFS, including referencing severe and very severe ME/CFS in a new template service specification for mild and moderate ME/CFS.
- Reacting to the announced delay to April 2027 on whther a specialist service for severe ME will be established, Clive Lewis MP asked if an impact assessment on the delay had been carried out – which was not answered directyly only that “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.”
- Tom Morrison MP was also anxious to discover what interim measures were in place to support those with severe ME and was informed “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.”
- David Smith MP questioned what assessment “has made of the adequacy of progress on the establishment of a specialised NHS service for people with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, including timelines, funding arrangements and decision-making criteria” to be told “Officials in the Department and NHS England are currently considering, alongside ME/CFS stakeholders, interim measures to support patients with very severe ME/CFS.”
