Baroness Scott of Needham Market tabled 3 linked questions on 29 July 2024 asking the Dept of Health and Social Care to provide – an update on publication of the cross-Government ME/CFS Delivery Plan (UIN HL452), whether the Delivery Plan will include provision for hospital treatment and full consideration of how to safely prevent malnutrition in very severe ME (UIN HL453), and querying what assessment the government has made of the percentage of the research budget allocated for ME/CFS and Long Covid, and whether they plan to increase this amount (UIN HL454).
Answering on behalf of the government in a combined response, Baroness Merton (Parliamentary Under-Secretary at the Department of Health and Social Care) revealed that
A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.
No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.
It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. 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.
What does this tell us?
- publication of the Delivery Plan – a process announced in May 2022 – is a ‘priority’.
- the government’s response to the consultation phase of the draft Delivery Plan will be forthcoming ‘in the coming months’.
- the full Delivery Plan will be published in the Winter but no firm date given despite the fact that publication has slid back and was initially due by the end of 2022, then as soon as possible in 2023 ….. and now slated for end of 2024 …. or beginning of 2025.
- NIHR continues with its sleight of hand by referencing only past 5 years of funding with its support of deCodeME whilst ignoring decades of underinvestment in biomedical research into ME/CFS and MRC’s funding of biopsychosocial research.
- Egregious underfunding of ME/CFS research when compared to long COVID.
- No comment on whether ME/CFS research funding will be increased.
- Despite decade’s long call for ring-fenced ME/CFS research funding, (cf. CMO Working Group and Gibson Report) it is confirmed that “not usual practice for the NIHR to ring-fence funds” for particular illnesses. It appears the government is oblivious to fact that both Germany and The Netherlands (28.5 million euros 10-year programme) have strategic ME/CFS research collaboratives precisely because of ring-fenced funding.
- UIN HL453 went unanswered.
Plus ça change
This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems with only an intense research programme can help resolve. It is an illness whose time has certainly come.
Group on Scientific Research into ME Report (Gibson Report) Nov 2006
