On Wednesday 9 August 2023, the UK Department of Health and Social Care (DHSC) released ‘My Full Reality – the interim delivery plan on ME/CFS‘.
In the words of the foreword, the Interim Delivery Plan “sets out the current problems to be addressed and agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition and improvements to service provision”.
We have summarised some of the key aspects with regard to research that were included in the plan.
The document starts by setting out four ‘problem statements’:
- There is low capacity and capability among the research community to respond to research needs in this area.
- Historically, there has been low awareness of the need and scope for research into ME/CFS across the health and care research landscape.
- There has been a relatively low amount of biomedical research funded on ME/CFS, compared with disease burden.
- There remains a lack of trust between different stakeholders, including a perception of bias, expressed by patient and carer groups, about prioritisation and the peer-review process when applied to ME/CFS research.
The UK Clinical Research Collaboration (UKCRC) has established a two year Research Working Group into ME/CFS, bringing together the major stakeholders influencing clinical research in the UK. The Working Group has committed to six ‘rapid actions’ which will “provide the foundation of evidence generation and insight into the medium and long-term actions”. Subgroups have been set up to work towards these actions.
- The DHSC will hold workshops with funders, academics, and people with ME/CFS on how to develop research questions to respond to the Priority Setting Partnership (PSP) Top Ten Plus priorities and initiate new clinical studies.
- The DHSC will work with research funders to commission a landscaping review of national and international work underway in ME/CFS, map PSP research priorities against these and establish evidence gaps.
- The Medical Research Council (MRC) and the National Institute for Health and Care Research will raise awareness of research funding opportunities for researchers and highlight the PSP Top Ten Plus ME/CFS research priorities publicly and with decision making bodies.
- A charity and patient group collaboration will support funders to raise awareness of mechanisms for effective patient and public involvement and engagement (PPIE) in research, ensuring diversity across protected characteristics, geographical areas and severity and duration of disease.
- The DHSC will support the Research Working group to develop case studies of research which show good practice, including effective PPIE.
- The DHSC will support the Research Working group to engage with the initiatives to educate clinicians/ practitioners about ME/CFS.
The ultimate aims of the interim plan with regard to research are summed up in the following statement:
We will know that the interim plan has delivered the necessary changes when there is greater awareness of the need and scope for research among the research community, so that the research and evidence needs for ME/CFS are recognised and addressed. This will mean that researchers from a wide range of relevant specialisms and disciplines are producing high-quality research, commensurate with disease burden, co-produced with people with personal experience. Research into ME/CFS is exploring diversity and inclusivity in the population, including protected characteristics, disease severity and duration. We will also have a sustainable pipeline of research, the findings of which feed into policy and practice for ME/CFS.
The DHSC is now seeking views on this interim delivery plan, and encourages people to submit their responses by 4 October 2023. This is an opportunity to comment, suggest and press for improvements, as ME Research UK will be doing.