The lack of meaningful investment in ME/CFS research by central funders has been well-known for decades and ME Research UK included a section pressing the issue in its 2023 reponse to the consultation on the Interm Delivery Plan for ME and also commenting on the inactions of the MRC in funding matters.
The 2016 ÜberResearch report found that:
- ME/CFS research represented approximately 0.02% of all active awards given by mainstream funding agencies – including the MRC and Wellcome Trust.
- Although 250,000 people were estimated to have ME/CFS in the UK (as at 2016), multiple sclerosis (MS), which affects about 100,000 people, had received 20 times the funding.
- Research spend into psychosocial ME/CFS projects dwarfed that invested by the MRC into biomedical research.
Whilst prevalence is only one aspect of a disease which can affect the level of research funding, research also indicates that people with ME/CFS experience higher levels of functional impairment and lower levels of wellbeing, compared with conditions including depression, cancer and rheumatoid arthritis (RA). Despite this, the research spend per patient for ME/CFS between 2006 and 2015 was just £40 compared with £320 for those with RA and £800 for those with MS.
The level of funding for ME/CFS research also does not reflect the economic burden of the disease nor does the ambition of the plan. The interim delivery plan underestimates this burden at a weighted minimum cost to the UK of £3.3 billion. This estimate is based on studies calculating costs for April 2014 to March 2015, estimates which are outdated by approximately eleven years.
When the results of the consultation were released the number one call by respondees in research was for ‘ring-fencing funding, as well as securing more funding and parity of funding with other conditions’. This was rejected outright by the government.
Tom Morrison MP has returned to the frame and raised once more the question of the level of funding and approach by the MRC. The response received from Dr Zubir Ahmed MP, Parliamentary Under-Secretary (Department of Health and Social Care) shows how little has changed.
Q – To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 5 November 2025 to Question 86003, if his Department will commission a specific comparative review, in collaboration with the Medical Research Council, into the relative level of National Institute for Health and Care Research funding for research into myalgic encephalomyelitis/chronic fatigue syndrome compared with other long-term conditions.
A – The Department does not intend to commission a specific comparative review into the relative level of National Institute for Health and Care Research (NIHR) or Medical Research Council funding for research into myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), compared with other long-term conditions. We recognise that ME/CFS is an under-researched area, and we are committed to working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting and funding more research and capacity-building programmes.
As outlined in the ME/CFS Final Delivery Plan, there has historically been a relatively low amount of biomedical research funded on ME/CFS, compared with disease burden. Our efforts are focussed on delivering the actions outlined in the ME/CFS Final Delivery Plan to support and increase research in this area. Since our answer to Question 86003, we have hosted a showcase on post‑acute infection conditions, bringing together people with lived experience, researchers, clinicians, and funders to stimulate further research. A summary of this showcase has been published on NIHR Open Research. We have also made progress with our new funding opportunity for development awards focussed on the feasibility of a phase 2 platform clinical trial. This would test multiple repurposed pharmaceutical interventions and/or non-pharmacological interventions for the treatment of post-viral conditions including ME/CFS. The committee will now consider the applications, and shortlisting decisions will be shared with the researchers in March.
