No doubt spurred by the forthcoming NIHR/MRC Showcase event for post acute infection conditions research which will be held on 6 November 2025 and which was promised in the ME/CFS Delivery Plan, Jo Platt MP (Chair of APPG on ME) tabled a parliamentary question (UIN 70927) specifically on research funding.
To ask the Secretary of State for Health and Social Care, how much funding his Department plans to allocate for research on ME and Chronic Fatigue Syndrome in the next (a) year and (b) five years.
‘Answered’ by Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention the response is not encouraging and reinforces the deep-seated and widespread disappointment voiced when the Delivery Plan was published on 22nd July 2025.
The Department funds research 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 post-acute infection condition such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), for which research funding is 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, rather than designating an amount of funding for a particular condition. Welcoming applications on ME/CFS and other post-acute infection conditions 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.
The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and to attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.
Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including for ME/CFS and long COVID, later this year to stimulate further research in this field.
Thus, no indication of a plan to fund ME/CFS research, no boost, no ambition, and no funds.
ME/CFS research re-framed within ‘post-acute infection conditions’ and fighting for funding against every other disease priority. What exists is merely signposting existing support vehicles and the hope of progress on repurposing of medicines for ‘post-acute infection syndromes and associated conditions’. HERITAGE and PRIME having already been announced.
Given this paucity of ambition it can be asked what the showcase event will achieve. Promised ‘to publicise the results from the DecodeME study, as well as highlight important outstanding research questions and encourage researchers to join the ME/CFS and long COVID fields’ it will be judged on the ‘Increase in applications to research funders following public showcase, demonstrating commitment and stimulating interest in post-acute infection conditions research.’ But with no obvious commitment and no guaranteed funding, where will it lead?
Jo Platt MP also tabled a further question on this point – where next? In her query (UIN 70928) she asked
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) encourage research on and (b) support the development of (i) strategic partnerships and (ii) research infrastructure for ME and Chronic Fatigue Syndrome.
The response from the same Minister adds little but repeats much
The Department funds research 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 post-acute infection condition such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), for which research funding is 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, rather than designating an amount of funding for a particular condition. Welcoming applications on ME/CFS and other post-acute infection conditions 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.
The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and to attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.
Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including for ME/CFS and long COVID, later this year to stimulate further research in this field.
