When the ME/CFS Delivery Plan was published in July 2025 the Provision of Health Services section stated that the “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.” Through a series of parliamentary questions the ebb and flow of governmental thinking was unearthed with the exact intentions of the Department of Heath and Social Care being unknown.
Regrettably, and at a point where paradoxically NHS Digital for England has agreed to a SNOMED CT UK code for very severe ME/CFS to add to ‘mild’, ‘moderate’, and ‘severe’ ME/CFS, a parliamentary question has laid bare the government’s plan.
Baroness Scott of Needham Market asked (UIN HL135)
…His Majesty’s Government how the template service specification for mild and moderate myalgic encephalomyelitis (ME) will address the needs of people with severe and very severe ME; and whether a separate specification will be developed for those groups.
To which Baroness Merron, Parliamentary Under-Secretary (Department of Heath and Social Care) divulged in her written answer of 9th June 2026
As part of the development of the template service specification for mild and moderate myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), which was committed to in the final delivery plan on ME/CFS, published in July 2025, officials have engaged with a sub-group of the ME/CFS post-publication stakeholder engagement group. As part of this engagement, officials from the Department, together with NHS England, have made the decision to include reference to severe ME/CFS in that template service specification based on feedback received from this group. It will also include a reminder that integrated care boards are expected to commission services that meet the needs of the local population, including for all levels of severity of ME/CFS.
There are currently no plans to develop a separate specification for severe and very severe ME/CFS.
Given the complex and urgent need for specialist, multidisciplinary and appropriate care, leaving those with severe and very severe ME/CFS without a template service is unacceptable given the resources and expertise available to the DHSC and NHS England. Such specific work is unlikely to replicated at local Integrated Care Board level. It would also be of interest as to which groups and individuals formed the sub-group of the ME/CFS post-publication stakeholder engagement group which came to the conclusion given that the full post-publication stakeholder engagement group includes ME/CFS charity representation.
It will be recalled that the assistant coroner who heard evidence on the death of Maeve Boothby O’Neill issued a preventing future deaths report – and commentedThe inquest heard that provision of care for patients with severe ME, such as that which Maeve suffered from, was and is non-existent and that being placed on a ward that did not have expertise in her condition made her admission to hospital very difficult for her to endure.
