Myalgic Encephalomyelitis Debate
Full Debate: Read Full DebateDepartment: Department of Health and Social Care
Alison Hume
Main Page: Alison Hume (Labour - Scarborough and Whitby)Department Debates - View all Alison Hume's debates with the Department of Health and Social Care
(1 day, 9 hours ago)
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Alison Hume (Scarborough and Whitby) (Lab)
It is an honour to serve under your chairship, Mr Mundell. A constituent recently wrote to me:
“ME has taken almost everything from me. I can no longer work, I am mainly confined to my chair or bed and, on the rare occasion that I leave the house for medical appointments, I need to use a wheelchair or walker and it often results in PEM”,
or post-exertional malaise. This was the sentence that really stayed with me: “ME has taken almost everything from me.” That seems to sum up the decimating effects of ME for the 25% of sufferers who experience the most severe symptoms. ME takes and then it takes some more, until in too many tragic cases the patient dies.
The fate of patients with severe ME has been brought home to me through my involvement with my constituent Debbie Seymour, once a working mother of two but now into her third year of being bedbound in a dark room and principally cared for by her incredible mum Sylvia, who is in her 80s. Although nurses are offering practical support, there remains a lack of knowledge about severe ME among healthcare providers and allied professions—particularly about the nature of the key diagnostic symptom of the disease, PEM.
Too often, sufferers of severe ME are required to fit into NHS pathways and procedures that suit the system but take little account of the human being at the centre of them. I welcome the Government’s delivery plan on ME. One of the stated aims is for the Department of Health and Social Care and NHS England to explore whether there should be a specialised service for very severe ME. NHS England is in the process of being dismantled, so could the Minister confirm in her summing up that that exploration will still go ahead? The desperate experiences of so many people highlight a lack of research into the disease. Perhaps the Minister can reassure my constituents in Scarborough and Whitby that there is a future in which the ringfenced funding granted for research into other illnesses can be extended to ME.
In conclusion, I have felt helpless when it comes to supporting my constituents who suffer from severe ME, and their families and carers. I am putting my faith in this Labour Government to drive forward the research to find a cure for this devastating disease and to improve specialist care for seriously ill ME patients such as Debbie, before it is too late.