My full reality: the interim delivery plan on ME/CFS was published by the Department of Health and Social Care (DHSC) on 9 August 2023. Consultation on the plan is now open to UK residents aged 13 and over, and will close on 4 October 2023.
The document was developed around three key themes: research, attitudes and education, ad living with ME/CFS. Within each of the themes, the report summarises issues and makes recommendations for improvements. ME Research UK’s response to the plan focuses on the research aspects.
While this plan provides a much-needed review of the global funding landscape for research into ME/CFS, it falls short in a number of areas, most significantly:
- The plan adds little new. The central issues facing biomedical research into ME/CFS are already well known, and have been for decades.
- There is no commitment to ring-fence dedicated funding for ME/CFS research to reflect the disease’s prevalence and severity.
- There are no strategies to keep established researchers in the field and to help them build capacity, or to encourage early career researchers to specialise in ME/CFS research.
ME Research UK will continue to push for a commitment to more research funding when we respond to the interim delivery plan as part of the consultation process.
Several aspects are to be welcomed
- The plan sets out a plan for a much-needed review of the global funding landscape for research into ME/CFS.
- It highlights the value of working closely with a diverse range of contributors, encompassing researchers, medical professionals, charities, and individuals with ME/CFS, and encourages the involvement of scientists from a range of relevant disciplines
- Through the establishment of subgroups and the ongoing monitoring of progress, it demonstrates a willingness to adapt and address challenges.
- It highlights measures aimed at improving the attitudes and practices of healthcare professionals, and promotes greater integration of ME/CFS within the medical curriculum, including the incorporation of teaching involving people with ME/CFS.
But there are limitations with regard to research
- While the plan reiterates important strategies for ME/CFS, such as ensuring that the voices of people with experience of ME/CFS are heard, and the need to educate healthcare professionals, it adds little new.
- The lack of high-quality research into ME/CFS is put down to a lack of capacity among researchers. However, no funding is announced to encourage new researchers to join the field of ME/CFS research. the plan sets out no strategies to keep established researchers in the field, and to help them build capacity through multidisciplinary collaboration, and no dedicated funding to encourage early career researchers to specialise in ME/CFS research
- There is still much work to be done in identifying specific research opportunities, and lessons ought to be taken from similar processes currently underway worldwide.
- There is no commitment to ring-fence funding for biomedical research into ME/CFS to reflect the disease’s prevalence and severity, nor any attempt to redress the historic imbalance in funding which has disadvantaged those affected by the disease for decades.
- Despite its higher prevalence, functional disability and impact on wellbeing, funding for ME/CFS still does not match that for other conditions.
- The rise in ME/CFS since the emergence of COVID-19, and the impact of this on both current prevalence and economic burden, is not acknowledged. Research funding available should reflect this, but at present does not.
- Education materials for healthcare professionals are key to improving care and reducing stigma. However, currently there is inadequate high-quality research on which to base these materials, and no dedicated funding to ensure this evidence is generated.
The research elements of the interim delivery plan show a welcome level of commitment within the Government to lay the foundations of advancing research into ME/CFS. However, unless there is a commitment to dedicated and increased funding, in reality little will change.
While the plan does highlight critical issues, it actually adds little new. The central issues facing biomedical research into ME/CFS are already well known, and have been for decades. In fact, the Gibson Inquiry Report highlighted them in 2006, and yet research remains underfunded seventeen years later.
The plan suggests that failures in ME/CFS research are due largely to researchers themselves, rather than the chronic underfunding that has hampered them for years. The focus is of the Plan, in reality, is on moulding new grant applications into a form that will apparently achieve the MRC’s standard for success, rather than providing the reassurance of the funds required to transform the research landscape.
In order to increase research capacity, there must be dedicated funding schemes, not only to retain highly regarded senior academics, but also to attract new and skilled researchers to the field of ME/CFS research. Without funding the cross disciplinary collaborations and Centes of Excellence are unlikely to happen.
This is the glaring omission in this interim delivery plan, and ME Research UK will continue to push for a commitment to more research funding when we respond as part of the consultation process.
For a more detailed look at the strengths and weaknesses of the plan, please read our in-depth discussion.