Parliamentary questions on ME/CFS delivery plan

On the 30th October 2024, Tessa Munt MP asked the following questions to the Secretary of State for Health and Social Care, which were answered by Andrew Gwynne, The Parliamentary Under-Secretary for Health and Social Care.

Questions from Tessa Munt Liberal Democrat, Wells and Mendip Hills

1. “To ask the Secretary of State for Health and Social Care, what assessment he has made with the Chancellor of the Exchequer of the potential impact of (a) ME and (b) long covid on economic growth.”

2. “To ask the Secretary of State for Health and Social Care, whether the delivery plan for ME/CFS will include measures to improve the safety of NHS care for patients with ME.”

3. “To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential merits of ring-fencing biomedical research funding for ME.”

Answer from Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care

“No assessment has been made on the impact of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and long COVID on economic growth. However, the Government recognises that long-term sickness continues to be the most common reason for economic inactivity among the working age population. As part of the Get Britain Working plan, more disabled people and those with health conditions will be supported to enter and stay in work, by devolving more power to local areas so they can shape a joined-up work, health, and skills offer that suits the needs of the people they serve.

The Government has established a Growth Mission Board focused squarely on reviving economic growth, and has established a new Growth Delivery Unit in HM Treasury to track and support delivery of key growth priorities.

The final ME/CFS delivery plan is a priority for the Department, and it is our intention to publish a response summary later this autumn. We cannot comment on the exact content of the final delivery plan at this time, but it will be shaped by the consultation responses, along with continued close engagement with stakeholders, with three broad themes of attitudes and education, research, and living with ME/CFS. We aim to publish this in the winter of 2024/25.

The Department funds ME/CFS research through the National Institute for Health and Care Research (NIHR). The NIHR and the Medical Research Council (MRC) are committed to funding high-quality research to understand the causes, consequences, and treatment of ME/CFS, and are actively exploring next steps for research in this area. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS.

Ring-fencing funding for ME/CFS has been considered and discussed with the community during the development of the Interim Delivery Plan for ME/CFS, as well as the recent roundtables on ME/CFS and Long COVID. Ring-fencing is not usual practice for research funders as applications in all areas compete for the funding available. 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. In all areas, the amount of NIHR funding depends on the volume and quality of scientific activity. Funding for high quality research is available through NIHR programmes, and there is support available for researchers to successfully apply for these awards.

Over the last five years, the NIHR has invested over £3.6 million in research programme funding for ME/CFS. This includes over £1.5 million to the DecodeME study, co-funded with the MRC, which aims to understand if there is a genetic component to the condition, and in doing so increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.”

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