When Dr Zubir Ahmed MP Parliamentary Under-Secretary (Department of Health and Social Care) responded to Tom Morrison MP’s Written questions (UIN 86002, UIN 86003, and UIN 86004) on government plans re biomedical research into ME/CFS and its funding, it encapsulated neatly many previous answers about the topic and showed clearly that the initial May 2022 hopes for the research elements of Delivery Plan process have been dashed. The Minister responded to each with a duplicate reply.
Nothing ME/CFS specific, no ring-fenced funding, no attempt to redress historic underfunding of ME/CFS biomedical research, and no plan.
Q – To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure a strategic approach to biomedical research into myalgic encephalomyelitis and chronic fatigue syndrome.
Q – To ask the Secretary of State for Health and Social Care, if he will make a comparative review into the adequacy of the level of funding for research into myalgic encephalomyelitis compared to other illnesses.Q – To ask the Secretary of State for Health and Social Care, if he will consider ringfencing funding for research into myalgic encephalomyelitis.
A – The Department funds research through the National Institute for Health and Care Research (NIHR).We are committed to working with the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), community to identify and address barriers to research, with the ambition of supporting more research and capacity-building programmes. As part of our approach, together with the Medical Research Council (MRC), we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS Final Delivery Plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical interventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around 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 research, including ME/CFS and long COVID, in November to stimulate further research in this field.
We have previously discussed ringfenced funding with the ME/CFS community during the development of the Final Delivery Plan for ME/CFS, as well as at subsequent meetings and roundtables on ME/CFS and long COVID. However, this is not usual practice for research funders as applications in all areas should compete for the funding available to uphold transparency and accountability. The NIHR welcomes funding applications for research into any aspect of human health and care, including ME/CFS. Our position is that welcoming applications on ME/CFS to all programmes enables maximum flexibility both in terms of the amount of research funding and the type of research which can be funded.
There has been no specific comparative review on the level of funding for research into ME/CFS compared to other illnesses. The Department invests over £1.6 billion each year on research through the NIHR, including on ME/CFS. Research funding is available, and applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
On research funding, the issues have been known for decades. ME Research UK highlighted these in our response to the consultation on the Delivery Plan and called for ring-fenced funding to reflect the prevalence and severity of the disease bunden when taking part in the Delivery Plan research workshop.
