Process momentum or resigned to failure?

With the resignation yesterday evening (5 July 2022) of Sajid Javid, former Secretary of State for Health and Social Care, ME Research UK can but hope that the new Secretary, Steve Barclay, will continue the process of engagement and learning on ME/CFS laid down by his predecessor. In what was seen as a promising advance in the Health Department’s approach to ME/CFS Mr Javid’s statement on International ME Awareness Day announced

I will co-chair a roundtable with my Department’s Chief Scientific Adviser, Professor Lucy Chappell, to bring together experts on ME/CFS, including people with lived experience to discuss what needs to happen next. 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. The National Institute for Health and Care Research (NIHR) will work with the research community to respond to the priorities as set out in the Priority Setting Partnership, alongside other funding partners.

Secondly, I am announcing the Government’s intention to develop a cross-Government delivery plan on ME/CFS for England, aligning with other devolved nations as appropriate. In particular, we are engaging with the Scottish Government to explore areas of potential shared interest and learning, especially in terms of research into ME/CFS.

Mr Javid stated in his resignation letter that he had been “working hard” on modernising the NHS and was developing plans for “radical new approaches to dementia, cancer and mental health”, as well as a strategy “to level up health outcomes for communities”. His family’s experience of ME/CFS meant he had a personal insight into the realities of ME/CFS and the shortcomings of his (then) Department’s approach to ME/CFS and his approach to ME/CFS was widely welcomed.

A series of meetings between researchers, charities, patient representatives, and the Health Dept have already occurred – covering patient experience, education and training, and research into the causes and treatment of ME/CFS – and a structure with a task and finish group agreed for a new strategy on ME/CFS to be put in place but ME Research UK waits to see if Mr Javid managed to embed his statement actions within his Department before his departure and whether Mr Barclay chooses to continue with the nascent initiative which was obviously so close to his predecessor’s heart.

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