Through answers to various parliamentary questions, the government has previously indicated that research spend for ME/CFS will not be ring-fenced and that the focus of activity will be to support researchers to increase the number and quality of applications rather than any specific routes for funding nor targetting of resources. So, any hints as to what it will contain when it is published ‘soon’?
Further details of what the Delivery Plan may contain have been made public by Ashley Dalton MP Parliamentary Under-Secretary (Department of Health and Social Care) in answer to queries by Sarah Gibson MP (UIN 62458), (UIN 62459), and (UIN 62460). In cumulo –
We have assessed the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), research portfolio funded through the NIHR and the MRC and acknowledge that this is an under-funded area. The level of funding awarded is directly related to the number and quality of applications received and we have historically received a small number of applications for funding in this area. Between 2019/20 and 2023/24, the NIHR committed approximately £3.7 million to research projects and programmes on ME/CFS. In the same period, the MRC committed approximately £2.9 million to research into ME/CFS. We welcome funding applications for research into ME/CFS. These 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.
We aim to publish the final delivery plan for ME/CFS shortly. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating condition. Following the publication of the final delivery plan, we will monitor the progress across all actions in the delivery plan, with project management arrangements in place to ensure timely implementation and periodical reports to stakeholders as appropriate.
Together with the MRC, we are actively exploring next steps for research in ME/CFS, and we will outline in the delivery plan further research actions and the additional support we will offer to the research community to increase the volume and quality of applications. 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 a key component of our response to the need for further research-based evidence related to 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, including ME/CFS and long COVID, research later this year to stimulate further research in this field.
In summary – the Department has acknowledged
- ME/CFS research is an under-funded area. However, this situation is directly related to the number and quality of applications received by MRC and NIHR.
This is the same line taken by the government for decades and despite ME/CFS being a priority area for MRC. The latest Priority area call was launched in May 2003. - No ‘ring-fenced’ funds for ME/CFS research as all applications will be in open competition with all other funding applications for all other diseases.
- “… we are actively exploring next steps for research in ME/CFS, and we will outline in the delivery plan further research actions and the additional support we will offer to the research community to increase the volume and quality of applications.”
- “… 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”
NB – not just ME/CFS but for post-acute syndromes and associated conditions.
NIHR has indeed already launched a call entitled ‘Post-acute infection syndromes, including long COVID and myalgic encephalomyelitis/chronic fatigue syndrome’ with the aim to ” …. establish the optimum approach for phase 2 platform architecture that tests multiple repurposed pharmaceutical interventions and/or non-pharmacological interventions and devices. The phase 2 platform will be UK-led and will aim to test multiple different therapies simultaneously and efficiently.”
As applications could be complex, NIHR has also stated that an Application Development Award (ADA) could be applied for and this can be up to £200,000 in value. Deadline for full applications is early December 2025. - Planning “… an NIHR and MRC hosted showcase event for post-acute infection conditions, including ME/CFS and long COVID”
NB – not just ME/CFS but for post-acute syndromes and associated conditions.
Overall, the items are now being put in place which may indicate the totality of concrete actions to be revealed when the Delivery Plan is published – at least for now. It is also clear that if this is the case then ME/CFS may not be the research focus of even its own Delivery Plan as the government subsumes it, and long COVID, and other diseases/illnesses within the term ‘post-acute infection conditions’.
