UK Parliamentary question on ME/CFS research funding

On International ME Awareness Day 2022, Lord Kamall, Parliamentary Under Secretary of State (Minister for Technology, Innovation and Life Sciences) issued a statement on behalf of the UK Secretary of State for Health and Social Care (Sajid Javid) which gave hope for improvements in the care of people with ME/CFS, in education of healthcare professionals, and in the support for better research. Indeed, the Statement came in parallel with the publication of the All Party Parliamentary Group’s Report ‘ Re-thinking-ME’ which highlighted the underfunding of ME/CFS research over decades and the desperate need for the situation to be changed

Poor funding levels for ME research can be attributed in part to the trend of under-investment in chronic conditions more generally and a lack of appreciation of the costs and societal implications of ME to the UK. Nonetheless, there is a considerable disparity in the levels of funding ME research receives when compared to other long-term disabling medical conditions.

Research into quality of life indicates that a typical ME sufferer may face greater disability than an individual with one of the following conditions: type 2 diabetes, congenital heart failure, back pain/sciatica, lung disease, osteoarthritis, multiple sclerosis, or numerous cancers. However, when ME is compared to other diseases that are less prevalent but cause similar levels of disability, there are wide variations in funding. Multiple Sclerosis (MS), for example, is estimated to affect around 110,000 people in the UK , while ME is estimated to affect around 250,000 people in the UK. Despite these estimates, MS research has received approximately 20 times the funding of ME research.

Rethinking-ME APPG on ME 2022 p14

The UK’s Secretary of State for Health and Social Care Statement set out a structure to improve matters but crucially the last sentence made clear that funding was ‘available through existing commitments’.

The Chief Scientific Adviser has asked the UK Clinical Research Collaboration to convene a subgroup on ME/CFS to work with funders, researchers, charities, and people with ME/CFS to drive high-quality applications for research into ME/CFS and support the research community to build capacity and capability in this field. We are committed to funding research into this important area. Funding for high-quality research into ME is available through existing commitments of HM Government to research and development.

Was the intension to redeploy funding from other illnesses? Invest new monies in ME/CFS funding as happened in long-COVID where the Lordships were assured that ‘…. the most recent £50m pledged to long-COVID research was protected and was in addition to the £108m already spent …’?

Perhaps David Warburton, Independent MP for Somerton and Frome Written Question and response thereto provides the answer

To ask the Secretary of State for Health and Social Care, if he will increase funding for (a) the treatment of and (b) research into myalgic encephalomyelitis.

Asked 19 January 2023 and Answered 27 January 2023

It is the responsibility of integrated care boards to make available appropriate provision to meet the health and care needs of the local population, including people with ME/CFS. The Department is developing a cross-Government Delivery Plan on ME/CFS. As part of the plan, we are working with other Government departments and stakeholders to determine ways to improve experiences and outcomes for all people who have ME/CFS.

The Government invests in health research through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. The NIHR and MRC both welcome high-quality applications for research into all aspects of ME/CFS, including biomedical research. It is not usual practice to ring-fence funds for particular topics or conditions.

It can only be hoped that ‘including biomedical research’ is not an indication that the government and funding agencies intend repeating past funding decisions which saw a very small number of researchers awarded a large number of grants for significant sums but all championing non-biomedical research – as detailed in the 2016 ÜberResearch report. ME Research UK believes fundamentally taht only biomedical research will find the causes and eventually a cure for the disease.

Despite the Department of Health and Social Care’s Delivery Plan process little appears has altered at this stage from the remarks at the Commons Debate on ME/CFS of 24th January 2019 – almost 4 year’s to the day before the Written Answer – where the then Under Secretary of State for Health and Social Care (Steve Brine) put the under-investment in ME/CFS research down firmly to the failings of researchers.

As set out in previous debates, the Government invest £1.7 billion a year in health research via the National Institute for Health Research and the MRC through UK Research and Innovation. Together, the NIHR and MRC welcome high-quality applications for research into all aspects of ME, which would absolutely include biomedical research. The MRC has had a cross-board highlight notice on ME open since 2003, updated in 2011, inviting innovative research proposals, alongside a bespoke funding call in that year.

ME research remains an area of very high strategic importance for the MRC. I do not have time to go into all the money granted. Members have said this afternoon, “We must surely fund more research,” but Ministers do not sit in the Department of Health and Social Care and decide on what to do research. One of the great legacies of the late Baroness Jowell was that she understood in brain tumour research that we need to stimulate that research community to come forward with the best research proposals that then can be successful in bidding for funding. The truth is — sometimes it is a hard and inconvenient truth to hear—there have not been good enough research proposals in the ME space, partly because of the stigma …….. and partly because of the division in the medical community. We need people to come forward with good research proposals in this space; that can only be advantageous.

It ought to be remembered that the sums expended by the central funders (NIHR and MRC) were larely for non-biomedical studies – such as the PACE trial.

Perhaps French writer Jean-Baptiste Alphonse Karr’s observation, “plus ça change, plus c’est la même chose” or “the more things change, the more they stay the same.” remains true afterall.

What also remains a constant is that ME Research UK remains at the forefront of investing in biomedical research into the causes, consequences, and traetment of ME/CFS globally. That is over £3m in 60 projects and four PhD-level research projects funded in the past 23 years.

Verified by MonsterInsights