The sacking on 8th February 2025 of Andrew Gwynne MP as Parliamentary Under-Secretary (Department of Health and Social Care) has removed the Minister most closely associated with finalising the Delivery Plan for ME/CFS. In fact, only at end of January 2025, he provided an update which confirmed the goal of publishing the oft-delayed Delivery Plan by the end of March 2025 and that
The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
His replacement at the Department is Ashley Dalton (first elected to Parliament on 4th July 2024) and her views on the Delivery Plan are awaited.
To succeed in fulfilling the early promise of the Delivery Plan process, publication and implementation demands a Minister that is willing to direct that change happens – otherwise warm and mildly ambitious words will not lead to transformation in education, research, and in attitudes. An opportunity to recast the UK’s approach to ME/CFS may be lost for perhaps another decade without the political will to make it succeed.
The Delivery Plan process was begun on International ME Awareness Day 2022, when the Rt Hon Secretary of State for Health and Social Care (Sajid Javid) issued a written statement on ME/CFS. He had a personal, familial connection to the disease and exhibited the will to drive the process through. His tenure as Minister lasted less than 2 months after initiating the process. He resigned as Health Secretary on 5 July 2022 and almost 3 years later the finalised version of the Plan is still not published.
Having a Minister in post willing to direct dilatory bodies to change is crucial. For example, when funders say that they cannot ring-fence funds for research areas, they conveniently forget that they can and they do. 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. Why did these initiatives occur – because an engaged Minister directed that they happened and funding bodies were forced to act. No direction = no action.
The loss of Sir Sajid Javid robbed the process of a politician willing to instruct reluctant institutions to make change happen. A less engaged Minister will come up against ossified attitudes within funding bodies which will continue to blame inaction in ME research on researchers and fail to look at their own shortcomings. The sacking of Andrew Gwynne on the cusp of publication is not ideal but will his replacement have the political weight and drive to make a real difference or will the Delivery Plan prove to be a further tombstone of ambition?
