Dr Ben Spence MP submitted two parliamentary written questions (UIN8473 and UIN8478) to Andrew Gwynne MP Parliamentary Under-Secretary at the Department of Health and Social Care asking about any recent discussions with NIHR over care and treatment of people with ME/CFS (a holding answer was, at first, produced but replaced on 22nd October and ME Research UK reproduces both) and whether any assessments yet made on the implications of the issue of a Prevention of Future Deaths Report in respect of the death of Maeve Boothby O’Neill
Q – To ask the Secretary of State for Health and Social Care, whether he has had recent discussions with the National Institute for Health and Care Research on support for research into (a) care and (b) treatment for people with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).
A (Initial) – The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.
A (updated 22nd October 2024) – We have had no discussions with the National Institute for Health and Care Excellence (NICE) on reviewing its guidance for the diagnosis, care, and treatment of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).
The NICE develops its guidance independently and keeps its published guidelines under active surveillance so that it is able to update its recommendations in light of any significant new evidence. Decisions on updates to existing guidance are made by the NICE’s Prioritisation Board in line with the NICE’s published common prioritisation framework. The NICE does not currently have plans to update this guideline.
ME Research UK – NB Question was on NIHR and not NICE.
Q – To ask the Secretary of State for Health and Social Care, whether he has made an assessment of the implications for his policies for the (a) care and (b) treatment of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) of the report entitled Maeve Boothby O’Neill: Prevention of Future Deaths Report, published on 8 October 2024.
A – Our deepest sympathies go out to Maeve’s family and friends in this tragic case. Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks.The Department has received a Prevention of Future Deaths (PFD) report, which we are currently reviewing. It is important that we learn the lessons from every PFD report, and we will consider the report carefully before responding appropriately.
We are committed to improving the care and support for all those affected by myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). It is a priority to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25.
