A number of linked questions have been tabled by Alison Hume MP concerning ME/CFS in terms of the upcoming promised publication of the government’s Delivery Plan on ME/CFS, its content, and also on NICE implementation. Each written question being answered by Ashley Dalton MP Parliamentary Under-Secretary (Department of Health and Social Care) on behalf of the Minister.
The gist being that –
- in response to query (UIN 55860) it was confirmed that the government remains committed to its aim to publish the “final delivery plan by the end of June 2025. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
- Ms Hume also asked (UIN 55862) what steps had been taken to ensure that NHS staff follow the NICE guideline on ME/CFS. To this, Ms Dalton responded by narrating that “National Institute for Health and Care Excellence (NICE) guidelines are not mandatory, but the Government does expect healthcare commissioners to take the guidelines fully into account when designing services to meet the needs of their local population, and to work towards their implementation over time.”
- Finally, when asked Secretary of State for Health and Social Care, what recent discussions he has had with the Chancellor of the Exchequer on funding for research into ME Ms Dalton responded in his stead
My Rt Hon. Friend, the Secretary of State for Health and Social Care has regular discussions with my Rt. Hon. Friend, the Chancellor of the Exchequer on a whole host of issues across our brief, including myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).
The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care including ME/CFS. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Welcoming applications on ME/CFS to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded.
Together with the Medical Research Council, which is part of UK Research and Innovation, we are actively exploring the next steps for research in ME/CFS, and we will outline further research actions as part 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. This will outline the additional support we will offer to the research community to increase the volume and quality of applications and, therefore, increase the allocation of funding to this area.
On this last point, it will be of interest to all the extent of the additional support the research community will be offered. It is known that the government has already stated its intention to provide additional support to ME/CFS researchers to develop high quality funding applications and access existing National Institute for Health and Care Research and Medical Research Council research funding. Details of the steps it will take to ‘boost’ research are awaited eagerly. It does read as though the actions will be to raise both the standard and number of applications rather than to commit to new research or additional funding.
