Inadequate funding of ME/CFS biomedical reseach has been an issue for decades and recognised as such by researchers, parliamentarians, people with ME, and by charites. Reports and parliamentary debates (for example, at Westminster, Hollyrood, and at the European Parliament) have called for levels of funding to be increased to reflect both prevalence and impact of the disease (cf ME Research UK’s detailed response to the DHSC consultation on the draft Delivery Plan) but successive government and central funders’ statements have always been that the finding bodies stand ready to fund research but do not receive applications of sufficient quality to allow grants to be made, and that ME/CFS research applications must compete with other likewise deserving diseases for funding.
At a point when the results of the consultation process for the future approach to ME/CFS, including “agreed actions to drive an expansion of research“, are yet to be released and the publication of the finalised Delivery Plan now not due before the end of the year, the answer to a parliamentary question on the position of the government now appears clear and has not (publically) altered despite intensive ctiticism, detailed proposals and political pressure. On the basis of the response – where is the ambition and drive for change?
Owen Thomson MP tabled a Written Question to the Rt Hon Andrew Stephenson MP Minister of State (Department of Health and Social Care) on funding
Q – To ask the Secretary of State for Health and Social Care, what steps her Department is taking to ensure myalgic encephalomyelitis receives a proportionate share of National Institute for Health and Care Research funding.
Question for Department of Health and Social Care, UIN 24494, tabled on 1 May 2024 and answered 7 May 2024
A – The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health including myalgic encephalomyelitis. 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. In all areas, the amount of NIHR funding depends on the volume and quality of scientific activity.
