An update on progress after the ME/CFS PSP

The ME/CFS Priority Setting Partnership (PSP) was led by people with ME/CFS, their carers and clinicians, and facilitated by Action for M.E. with support from the James Lind Alliance. After 5,300 research ideas were submitted, a series of workshops established the Top 10+ priorities which were published on World ME Day, 12 May 2022.

Welcoming the PSP priorities, the Rt Hon Sajid Javid MP, then Health and Social Care Secretary, declared that more must be done for people with ME/CFS and announced his plan to Co-Chair a roundtable with the Department’s Chief Scientific Adviser to set out next steps. Additionally, in his Ministerial Statement, he announced the Government’s intention to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate. The Plan would build on the recommendations of the Priority Setting Partnership, the recently updated guideline for ME/CFS from the National Institute for Health and Care Excellence, and the comprehensive work of the All-Party Parliamentary Group on Myalgic Encephalomyelitis to date.

A comprehensive programme of work followed. At the heart of the delivery plan there are two core principles. Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS. On 9 August 2023, Improving the experiences of ME/CFS: interim delivery plan was launched for an eight-week consultation. Six actions have been identified specifically in relation to research and we encourage you to participate in the consultation.

The UK Clinical Research Collaboration (UKCRC) Research Working Group has committed to rapid actions which will provide the foundation of evidence generation and insight into the medium and long term actions. These actions started in December 2022, with planned delivery before spring 2024. In parallel, the group will identify a plan for future actions and a sustainable legacy.

1. The Department of Health and Social Care (DHSC) will support the Research Strategy subgroup to hold workshops with funders, academics and people with ME/CFS on how to develop research questions to respond to the PSP Top 10+ priorities and initiate new clinical studies.  This will help increase research funded in this area by bringing new and existing researchers to the field to discuss feasible, clear and meaningful research applications.
2. 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. This will enable researchers to target proposals at identified gaps and funders to consider which are most needed.
3. The Medical Research Council and the National Institute for Health and Care Research will raise awareness of research funding opportunities for researchers and highlight the PSP Top 10+ ME/CFS research priorities publicly and with decision-making bodies. This will provide further guidance to researchers, including those new to the field, as to how to find and apply for funding in a competitive process. Raising awareness of the PSP Top 10+ priorities will emphasise the value of those priorities to researchers, those involved in funding decisions, patients and the public to enable high-quality applications to be prioritised for funding.
4. As part of the Research Working Group, 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. This will increase the co-production of research, ensure proposals are informed by personal experience, targeted to patient need, and increase competitiveness of proposals for funding.
5. DHSC will support the Research Working Group to develop case studies of research that show good practice, including effective PPIE. This will show exemplars to researchers and funders to improve future the research application and review process.
6. DHSC will support the Research Working Group to engage with the initiatives to educate clinicians and practitioners about ME/CFS (for example, the NHS England e-learning module to be developed on ME/CFS). This will ensure that researchers, researcher clinicians and research funders are supported to engage with new educational resources on ME/CFS.

We encourage you to take part in the consultation, Improving the experiences of ME/CFS: interim delivery plan. Audio versions of each chapter and more information are available on the Action for M.E. website.

The consultation closes at the end of 4th October 2023.

With thanks to Sonya Chowdhury, Chief Executive of Action for ME, for updating the JLA on this.