ME Research UK has welcomed the release by the UK Department of Health and Social Care (DHSC) of ‘My full reality: the interim delivery plan on ME/CFS‘. The Department is seeking responses to the plan via an online survey, which you can complete here.
We have completed the sections of the survey which relate to research, and have also responded directly to the DHSC in more detail, highlighting what we see as being the limitations of the plan. You can read our full response below.
While this plan provides a much-needed review of the global funding landscape for research into ME/CFS, it falls short in a number of areas, most significantly:
- The central issues facing biomedical research into ME/CFS are already well known, and have been for decades.
- There is no commitment to ring-fence dedicated funding for ME/CFS research, to reflect the disease’s prevalence and severity.
- There are no strategies to keep established researchers in the field and to help them build capacity, or to encourage early career researchers to specialise in ME/CFS research.
- The initiatives appear more about process than results.
- The deliverables are weak.
On a positive note, we welcome the fact that the interim delivery plan reiterates the Government’s intention to increase and improve research into the disease and to “continue to support researchers to better understand ME/CFS”.
1. Lessons not learned
Whilst the plan highlights critical issues for biomedical research into ME/CFS, it actually adds little new in the recommendations made. The central issues facing biomedical research into ME/CFS identified by the plan are actually well known, and have been for decades.
These issues were narrated in the ‘Inquiry into the status of CFS/M.E. and research into causes and treatment’ – the 2006 Gibson report – which cast a critical eye on progress made to that point in implementing the research recommendations of the 2002 ‘Report of the CFS/ME Working Group’ to the Chief Medical Officer.
The late Dr Gibson’s Report, like the current interim delivery plan process, received evidence in the form of documents, letters and oral submissions from major researchers in the field and from people with ME. It concluded that the UK “must invest massively in research into biomedical models of this illness”. Seventeen years later and research into ME/CFS remains underfunded in terms of disease severity and prevalence.
What is to be regretted, given the crucial role of government funders of research, is why there is no direct comment on how the (in)actions of central funders may have contributed to the problems being faced, or what steps will be taken to remedy and report upon any deficiencies. There has, after all, been a Highlight Notice for ME/CFS since 2003 and the disease has been, according to the MRC “a high priority for MRC for several years”.
It must also be noted that the Gibson Inquiry Report highlighted the role of the MRC and recommended specific actions, whereas the interim delivery plan, as well as the Government, lays the ‘blame’ firmly in the hands of researchers.
A co-ordinated, multi-agency, multi-departmental approach to ME/CFS is to be welcome but unless the delivery plan is ambitious, funded, target-driven and specific it is likely to join the 2002 and 2006 reports on the shelf.
2. Funding issues
The historic chronic underfunding of ME/CFS research, and disparity in funding compared to other illnesses, is well documented, and yet the plan does little to address these.
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, 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.
While prevalence is only one aspect of a disease that affects 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 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 eight years.
Although there are no more recent prevalence estimates of ME/CFS in the UK, it is clear that following the onset of COVID-19, the prevalence of ME/CFS is expected to increase. For example, on 21 April 2023, a hearing before the German Parliament’s Health Committee summarised that that around 1 to 2 percent of all people infected with SARS-CoV-2 (up to 20 percent of all long COVID sufferers) will meet diagnostic criteria for ME/CFS after six months. It must therefore be assumed that the number of people affected by ME/CFS will almost double worldwide – in figures, this would correspond to 10 million new cases.
If the minimum cost to the UK economy was £3.3 billion prior to the onset of the COVID-19 pandemic, it must be acknowledged that this will have dramatically increased, and any research strategies and funding allocated to biomedical research into ME/CFS must surely reflect this.
Given the increased numbers of workers inactive in the jobs market due to illness, as well as the young people missing from education, investment now into research of a serious disease with increasing prevalence ought to be viewed as funds well deployed.
Even without research spending being increased to reflect historic underfunding, biomedical ME/CFS research has been an egregiously neglected and underrepresented area. Both the Gibson report and All-Party Parliamentary group (APPG) report on ME called for Government research bodies to ensure that there is a parity of biomedical research funding between ME and other serious long-term conditions. Despite this being highlighted for almost two decades, this call has not been addressed in the delivery plan. Funding according to the process is available within existing budgets but, of course, it always has been and so how will outcomes change?
Other European states with far less research infrastructure in ME/CFS have progressed far further and faster than the UK due to funding being pledged. Why? For example, the Netherlands has already announced a €28.5 million, 10-year programme to carry out a biomedical research programme on ME/CFS – €11 million of which has led to two consortia being forged. In Germany, August 2023 saw the release of a new research guideline which a few weeks later was followed by the BMBF announcing €15 million in funding for research into the underlying disease mechanisms of ME/CFS.
The plan has a chance, if funding is allocated, to attract and retain skilled researchers (both early career and established), and to ignite high quality research into ME/CFS, through interdisciplinary and institutional collaborations, alongside dedicated centres of excellence. A lack of financial commitment condemns researchers to working in isolation without the opportunity for career development and research progression needed to draw them to the field. The Highlight Notice process demands interdisciplinary efforts but without a reliable prospect of funding no one will risk the cost/work of applying. As can be seen from the Dutch and German examples, a supportive pathway and guaranteed funding will yield the required results. Yet, what is offered is merely a process-driven, empty abrogation of responsibility.
3. Plan points
- The interim delivery plan states that one of the reasons for the lack of research into ME/CFS is that “there is low capacity and capability among the research community to respond to research needs in this area”. While there is undoubtedly a lack of awareness of ME/CFS amongst researchers, the capability to conduct research into the disease is there; what is not there is dedicated funding to carry out high-quality biomedical research into ME/CFS and to encourage researchers into the field.
- The plan sets out no strategies to keep established researchers in the field, and to help them build capacity through multidisciplinary collaboration, and no dedicated funding to encourage early career researchers to specialise in ME/CFS research (such as PhD studentships or postdoctoral fellowships – initiatives which ME Research UK has funded by individual donations).
- The 2022 APPG report on ME stated that there is a need to establish “centres for ME excellence”. The interim delivery plan makes no mention of these centres, or the process through which they would be founded or funded. Rather, through absence of information, there seems to be an implication that researchers should resolve these issues themselves or be satisfied with a lack of explanation.
- The four problem statements identified in the interim delivery plan could largely be attributed to the paucity of funding opportunities available for researchers, or research being abandoned after failing to achieve MRC backing. In order to achieve the aims of the plan in Education of Professionals and other highlighted areas, research must be nurtured to inform change. The lack of research impetus will impact every other area of the plan from healthcare professionals’ education, public perception, to provision of services.
- The priorities highlighted by the ME/CFS Priority Setting Partnership (PSP) process are highly commendable and cover areas of the utmost concern and, with the central involvement of people with ME/CFS, they certainly should be the basis of research considerations. However, they need to evolve into tractable research questions and this requires the input of researchers. The PSP results must not be prescriptive. The Highlight Notice says that NIHR “particularly welcome proposals” based on PSP and this flexibility ought to be reflected in the plan. The PSP cannot be used to exclude other novel or promising research areas because as research evolves, novel techniques and new areas of enquiry also arise.
- The interim delivery plan process has not yet drawn on the opinions and experiences of the whole research realm, and must reach outwards to achieve its goals. The plan must be flexible enough to accommodate learnings. It is to be hoped that cognisance is taken of similar processes being undertaken by the USA’s NIH who have launched a NANDSC ME/CFS Research Roadmap Working Group whose members include a number of those involved in the interim delivery plan’s research subgroup. They are specifically charged (and, it is to be argued, better directed) to “assess current ME/CFS research activities and identify opportunities and gaps in ME/CFS research to identify targets for the development of treatments”.
ME Research UK is reminded of different approaches to research funding. In 2021 a pledge was made of £375 million to improve understanding and treatment for a range of neurodegenerative diseases, including Lewy Body Dementia and Alzheimer’s disease. A few days after Dame Tessa Jowell’s death in May 2018, the government announced ‘The Dame Tessa Jowell Brain Cancer Research Mission’ which included a boosted research fund to consist of £65 million – £40 million in Government funding to be bolstered by £25 million from Cancer Research UK. Where is the same ambition for ME/CFS?
The six rapid actions identified are supporting and facilitating rather than measurable commitments, and are to be delivered by others.
In relation to “Impact: how we will know when this interim delivery plan has delivered on research”, the plan speaks of inclusion and raising awareness, yet does not provide definitive metrics or milestones. In stark contrast, the German guideline speaks about “(i) interdisciplinary collaborations between researchers from basic and clinical research are established, (ii) new scientific evidence is generated that benefits those affected in the medium term, and (iii) that in the projects the data generated can be used sustainably and made available to other researchers”. “The achievement of goals is measured by the quality and quantity of the collaborations established, the scientific publications and the data made available.”
The German goals show flexibility yet are targeted and show what is expected to be delivered. What is envisaged in the interim plan is vague, unambitious, and a triumph of verbiage over content.
The research elements of the interim delivery plan follow the inaccurate narrative which directs that failures in ME/CFS research are due largely to researchers themselves, and makes no commitment to ring-fence funding.
The plan shows a level of commitment within the government to lay the foundations to advance research within an unclear set of parameters. Additionally, the focus seems to be on moulding researchers’ applications into a form which the MRC direct and required to reach their standard for ‘success’. It is akin to an outreach programme writ large and blind to the issues highlighted previously. The interim plan implies it is for the research community to solve the issues which have grown over decades, rather than addressing the role of the MRC in the past.
What is urgently needed is reassurance that funds will be available to transform the research landscape, ensuring that biomedical research receives the same level of consideration as other research areas. And in order to increase capacity, there must be dedicated funding schemes, not only to retain highly regarded senior academics, but also to attract new and skilled researchers to the field of ME/CFS research.