In addition to her parliamentary question on funding for the ME/CFS Delivery Plan, Jo Platt MP also tabled a parliamentary written question (UN29111) answered by the newly appointed Parliamentary Under-Secretary for Health and Social Care (Ashley Dalton MP) on establishing a centre of excellence for care and research for infection-associated chronic conditions – such as ME/CFS.
Q – To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential merits of establishing a centre of excellence for care and research for infection-associated chronic conditions.
A – We do not anticipate setting up a new centre of excellence for care and research specifically for post-viral or infection-associated conditions. The Department funds research on post-viral conditions through the National Institute for Health and Care Research (NIHR). The NIHR and Medical Research Council (MRC) remain committed to funding high-quality research to understand the causes, consequences, and treatment of post-viral conditions such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and long COVID, and are actively exploring next steps for stimulating further research in this area. The MRC and NIHR currently fund research through a variety of routes, including infrastructure, research programmes, capacity building, for example research fellowships, and in the case of NIHR, research delivery to support recruitment to studies. Funding is available for infection-associated research.
Given there is to be no additional funding to implement the research aspirations of the Delivery Plan it would seem that ME/CFS research progress is now to rely on the largesse of the NIHR and MRC – bodies who have not proven to be receptive to funding research into ME/CFS or at least in funding biomedical research into the disease in the past. From the Delivery Plan process the NIHR and MRC are acutely aware of the need for ME/CFS research, of the progress made world-wide in research, and of the priorities of those affected but will this translate into action? No new funding may be available but this does not preclude the NIHR or MRC funding a centre or supporting research from existing resources. The NIHR funding call now uses the term ‘Researching ME/CFS: priority area’ but they are yet to show through their actions that ME/CFS research is a priority for funding.
