Academics, researchers and ME charities have united to demand a fundamental change in ME/CFS research in the UK via a considered, viable, and deliverable national research platform.
‘An ME/CFS and Post-Infectious Disease Research Platform’ is a bold vision demanding the creation of, and funding commitment for, a national ME/CFS research consortium and is in line with UKRI’s 5-year strategic themes and 4 of the 5 NIHR Key Initiatives. It stands as a collaboration between researchers, practitioners, those with lived experience of ME/CFS, clinicians, and charities – including ME Research UK.
ME Research UK co-signed a letter to the Executive Chair and CEO of NIHR dated 28th October 2024 highlighting contacts made and engagements sought to press for progress on a Research Platform. Further, it impressed upon the NIHR leadership that the time is ‘now’ to build upon deCodeME and the unified purpose of researchers, charities, and a fully engaged patient/carer ME/CFS community. In addition, ME Research UK has endorsed the proposal.
After years of effort by so many, we are convinced the time has now arrived to recognise the parlous state of ME/CFS research and the essential need for a different approach to drive a new research endeavour, including capacity building. We see the only way to achieve this is for strategic support in the creation of an interdisciplinary research platform/consortium, as outlined in our joint proposal.
The ‘Ask’
The proposal outlines lays bare the low critical mass, funding, and lack of synergy in ME/CFS. To overcome this the structure of the already NIHR-funded Mental Health Platform is replicated. Five hubs funded over 5 years are envisaged “….. co-ordinated by a single centre whose remit is to work in partnership with patients and stakeholders to develop and promote innovative solutions to building research capacity for patient benefit. The new ME/CFS and Post-Infectious Disease research platform will adopt the successful collaborative model of the Mental Health Platform by bridging research silos, accelerating drug development, connecting academic research with industry and clinical care, using interdisciplinary methods (including Artificial Intelligence/Machine Learning [AI/ML]), whilst performing open innovative research, sharing data, and accelerating new treatment options.”
The 5 hubs would be mapped to the Priority Setting Partnership’s Top 10+ Priorities and all initiatives would have Patient and Public Involvement built in. Better links would be forged internationally and between existing UK research infrastructure and moves made to achieve a consensus-based research definition. There are also welcome undertakings to include those more severely affected by ME/CFS and also under-served groups in the initiative.
The goals
- Coordinate best-practice Patient and Public Involvement, and Engagement – national and international.
- Establish data hubs that collect, store, and disseminate high value ME/CFS data/sample resources.
- Ensure that UK ME/CFS PhD researchers are linked into a UK-wide cohort.
- Include a postdoctoral cohort of early career ME/CFS researchers, co-sponsored by ME/CFS investigators from different hubs, and linking into “Young EMERG”: The European ME Research
Group (EMERG) for early career researchers. - Act as the initial international/industry contact point for UK ME/CFS research & signposting contacts to relevant affiliated investigators. This should take advantage of existing international ME/CFS research infrastructure including EMERG and its links with NIH-NINDS and the USA groups they fund. These groups are currently working on established guidelines and standards for Clinical Trials of Investigational Medicinal Products (The Hinxton Consensus).
- Connect with investigators from other areas/disciplines to enhance ME/CFS research.
- Engage with Pharma/SMEs via a specific Industry Oversight Group.
- Run interdisciplinary workshops, focusing on bringing in existing expertise into the ME/CFS field, and regularly convene meetings between ME/CFS and Long Covid researchers.
- Work with existing charity research funders to provide small pump-priming funds to help form new collaborations and encourage early-stage research to build the evidence base.
- Support to develop & hone new grant applications, including to Horizon Europe – a more outward looking perspective would be required with inclusion of European based researchers and patient organisations (European ME Coalition – EMEC) – important to build/establish these links now.
This month, in a letter signed by nine notable UK-based researchers – including Professors Altmann, Holgate and Ponting – and addressed to ME/CFS Funders (central and charity) the researchers called for stategic and proper investment in ME/CFS research and requesting a face-to-face meeting with UKRI, NIHR, and charity leadership to discuss both strategic funding for ME/CFS and Long Covid but also a more equitable review of ME/CFS grant proposals.
As they say
MRC and NIHR have awarded £7.34m in ME/CFS research since 2013, including £3.2m to DecodeME. This is just £2.67 per person with ME (pwME) per year. Charities fund just under £2 per pwME per year. This compares with the UK’s annual spend of £74 per person on health research. Despite being at least twice as prevalent, ME/CFS receives approximately 20-times less research funding than multiple sclerosis.
ME/CFS’s annual cost to the UK economy is at least £3.3 billion; the cost of Long Covid to UK GDP is £1.5 billion annually.
This low level of research funding is not commensurate with disease burden: UK ME/CFS prevalence is at least 250,000, with an estimated 63,000 people in the UK are so severely affected that they are house- bound or bed-bound, with little functional capacity, often needing 24-hour care.
Comment
ME Research UK is, and always has been, fully committed to supporting substantial, sustained, and sufficient government funding for biomedical ME/CFS research in the long-term – e.g. in our response to the draft Delivery Plan on ME/CFS. Only major sustained central funding is capable of stimulating and strengthening the ME/CFS research base and enabling it to draw upon the talents of multi-disciplinary researchers in collaboration with health professionals, and those with lived experience of the disease.
Pressure builds on the NIHR and the MRC to prove that ME/CFS research is indeed a priority and that regular highlighting of funding for the Priority Setting Partnership and decodeME is not merely a distraction from years of shameful neglect of biomedical research into ME/CFS.
The government has already stated that there will be no additional monies available to fund implementation of the Delivery Plan and that neither a separate centre of excellence for ME/CFS is envisaged nor are there any plans for ring fencing of research funding for ME/CFS. All that has been already announced is that while the government intends the Delivery Plan to be as ambitious as possible for research, the only additional support which will be provided to ME/CFS researchers is to aid the development of high quality funding applications and to access existing National Institute for Health and Care Research and Medical Research Council research funding. In addition, the ME/CFS Delivery Plan will reportedly outline the additional support to be offered to the research community to increase the volume and quality of applications and, therefore, due to raised application quality to lead to an increase in the allocation of funding to this area.
These sops are insufficient and unambitious. Similar approaches have been tried before without success.
It must be recalled that in May 2003, the Medical Research Council (MRC) announced its “research strategy for CFS/ME”, widely welcomed at the time as the first formal research strategy for the illness. It listed a number of strategic themes of particular importance (case definition, epidemiology, pathophysiology, interventions, health service research, research capacity and the value of lay participation). Subsequent initiatives by the MRC included the issue of a notice highlighting CFS/ME as a strategic priority (2003), a CFS/ME workshop (2003), and a “Joint Action for ME” workshop (2006). In the summer of 2008, an answer to a parliamentary written question revealed that the MRC was to constitute a CFS/ME (as disease called at that point) multi-disciplinary panel – now long since dormant – which it was hoped could be used to discover whether or not the MRC has a case to answer over the non-funding of biomedical research since 2003. These initiatives led to where we are today ….
Limiting the support available to the pre-application processes merely highlights a myopic vision of the issues facing ME research. Leading researchers in their open letter to funders narrate the fate of their funding applications and the negative responses received. The internal processes of the MRC, when it comes to ME/CFS research, has oft been a cause of concern. As ME Research UK commented on fears over the MRC’s funding decisions
“There are three main schools of thought about what has gone on. First, that within the MRC
the biopsychosocial model of ME/CFS is the current paradigm, leading referees and committee members to be chosen, probably unwittingly, to deliver a particular outcome (since psychosocial aspects colour the perception of the illness across the board, this would be no surprise). Second, that the MRC is simply a large stolid bureaucracy for which ME/CFS biomedical research has very low priority indeed given the other demand on its resources (£1.3 billion in 2008 for all types of research on all illnesses). Third, that something even more fishy is going on.
The research platform proposal therefore faces an uphill battle and so seeks to emulate initiatives already funded by NIHR and to draw upon existing resources e.g. the UK ME/CFS biobank and charity activity. In addition, the proposal is not limited to ME/CFS but extends to post-infectious diseases, such as Long COVID. Progress will crucially also depend on internal accommodations within the MRC or NIHR or, as the researchers politely say “a more equitable review of ME/CFS grant proposals” which may prove to be the greatest challenge given past experiences.
