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My Lords, I am grateful to have secured time for this debate on the treatment of and research into severe ME. I am particularly grateful to Action for ME, whose work with those living with ME and advocacy to improve care, treatment and understanding has been tireless. Someone very close to me has ME, and I know from our personal experience what so many other families know: that ME is not just a matter of policy documents, clinical pathways or departmental responsibilities; it is about lives changed beyond recognition. It is about people who were active, engaged, ambitious and full of plans who suddenly find that the most ordinary of tasks become impossible.
ME is a complex, chronic and disabling condition that affects multiple systems in the body, characterised by debilitating fatigue that does not improve with rest, cognitive dysfunction, pain and hypersensitivity to light, sound and movement. Even the most minimal activity can cause a serious worsening of symptoms in some people. Around 1.35 million people in the UK are estimated to be living with ME, although the true number may well be higher because of underdiagnosis and limited research. Around one in four of those with ME are severely affected. To be clear, that means they are housebound or bedbound, unable to carry out daily independent activities and totally reliant on others for personal care. Those with very severe ME may have extreme symptoms and are dependent on full-time care. Many are unable to process or tolerate food and are dependent on nutritional and hydration support. We need to be clear about the scale and the seriousness of this issue.
There have been some welcome developments recently with regard to ME. The Government’s ME/CFS delivery plan, published in July last year, was an important step. It finally recognises the needs of people with ME and has signalled a greater willingness to address an illness that has been neglected for so long. However, that recognition, welcome though it is, is not delivery. In March this year the Department of Health and Social Care confirmed that work to explore a specialist NHS service for people with severe ME will not begin until at least April 2027. That is not delivery of the service; it is simply the exploration of one.
For many illnesses a delay of a year would be troubling, but for people with severe ME it may be devastating, leading to further deterioration in their health and, crucially, signalling to them that once again their illness is being forgotten. In practice, the delay will mean that patients continue to be passed between services that simply do not know what to do, or, even worse, continue being harmed by care that is totally inappropriate to their needs. Recent prevention of future deaths reports into the deaths of Maeve Boothby O’Neill and Sarah Lewis raise serious concerns about the lack of specialist services, insufficient clinical understanding and failures to meet even the most basic care needs. These reports should weigh heavily on all of us and, I am sure, also weigh heavily on the Minister.
Those reports make it clear that it is not just a question of future improvement but of patient safety now. More deaths from ME must be prevented. I know the Minister will say the delivery plan is a starting point, and I accept that, but sadly it is a plan without funding, timelines or accountability, and it risks becoming just another document that people living with ME are told to welcome while their daily reality remains unchanged.
I would like the Government to set out what interim support will be available for patients with severe ME before exploratory work on a specialised service begins in April next year. We need clear interim measures, dedicated accountability within the department and within the NHS, and proper co-design with people with severe and very severe ME, along with their families, carers and the charities that support them.