In March 2025, Dr Charles Shepherd wrote a letter to Ashley Dalton MP (Parliamentary Under-Secretary, Department of Health and Social Care) to express our concerns regarding the Department of Health & Social Care (DHSC) Delivery Plan on ME/CFS.
We have now received a reply dated 12.05.25 and you can read the letter below.
Letter
Dear Dr Shepherd,
Thank you for your correspondence of 4 March about the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) delivery plan. I apologise for the delay in replying. I appreciate your concerns.
The Government is aware of the devastating effect ME/CFS can have. We are committed to taking a comprehensive and compassionate approach to supporting individuals with ME/CFS, recognising the unique challenges this condition presents. Every patient deserves to have their condition understood and treated appropriately. I would like to assure you that the Government is committed to better care and support for people living with long-term conditions, including ME/CFS. We want a society where everyone receives high-quality, compassionate care that also supports their families and carers. We will change the NHS so that it becomes not just a ‘sickness service’, but able to prevent ill health in the first place. This will help us to be better prepared and allow services to focus more on the management of chronic, long-term conditions, including ME/CFS.
We know that care for people with ME/CFS has varied widely and, in the worst cases, has left some people feeling that their illness is not recognised by the health and care system. We know that improvements in research and services and a better understanding of the condition have the potential to greatly improve the quality of life of people with ME/CFS.
The Department published an ME/CFS interim delivery plan in August 2023, alongside a public consultation that closed in October 2023. At the end of 2024, we published a summary of the responses to that consultation, which can be found at www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfsinterim-delivery-plan.The responses to the consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan, which we aim to publish by the end of June. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease
We have listened to ME/CFS stakeholders and allowed for more time to develop the plan, to help ensure that we can be as ambitious as possible to make the greatest impact for those living with the condition. Providing more time for development will also enable the final delivery plan to align more closely with wider related Government strategies, such as the forthcoming ten-year health plan. The extension to the publication timeline will allow vital further engagement with the ME/CFS Task and Finish Group and those across Government and beyond who are responsible for actions in the final delivery plan. Through this engagement, we will further consider and develop new and stronger actions to deliver meaningful change for the ME/CFS community.
The Government is committed to funding high-quality research to understand the causes and treatment of ME/CFS and is looking at the next steps for such research. The Department funds research through the National Institute for Health and Care Research (NIHR) and welcomes funding applications for research into any aspect of human health, including ME/CFS. It is not usual practice to ring-fence funds for expenditure on particular topics – research proposals in all areas compete for the funding available. Applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of funding depends on the volume and quality of scientific activity.
The NIHR and the Medical Research Council remain committed to funding high-quality research to understand the causes, consequences and treatment of ME/CFS, and are exploring the next steps for stimulating further research in this area. The NIHR provides funding to support the recruitment of participants to studies and welcomes the opportunity to collaborate with partners, including patient representative groups and industry.With regard to funding for ME/CFS services, NHS England is responsible for allocating funding to integrated care boards, which in turn are responsible for commissioning specialist ME/CFS services that meet the needs of their population, subject to local prioritisation.
I hope this reply is helpful.
Yours sincerely,
Ashley Dalton
Letter to Ashley Dalton MP
- The MEA writes to Ashley Dalton MP – the DHSC minister in charge of the DHSC Delivery Plan | March 12, 2025