Myalgic Encephalomyelitis Debate
Full Debate: Read Full DebateDepartment: Department of Health and Social Care
Adam Jogee
Main Page: Adam Jogee (Labour - Newcastle-under-Lyme)Department Debates - View all Adam Jogee's debates with the Department of Health and Social Care
(1 day, 5 hours ago)
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Adam Dance
I agree. It is really important that the Government provide more support for ME, because it affects the lives of a lot of people.
Adam Jogee (Newcastle-under-Lyme) (Lab)
I am grateful to the hon. Gentleman for giving way, from one Adam to another. I want to give a shout out to ME Group Staffordshire, which does wonderful work in supporting my constituents and people in the surrounding areas, and does so much to challenge the stigma that many people living with ME face on a daily basis, as the hon. Gentleman talked about. As the Minister looks to provide the support that we are all calling for today, I hope that she will consider extending it to those groups and communities that support people with ME, including some of my constituents.
Adam Dance
I agree that we need lots more support groups across the country. It is really good that the hon. Member has one in his constituency.
Iona’s school offered her no help; indeed, it told her that she would fail all her GCSEs. She went to her GP and other doctors many times but was told that she was “anxious and did not know it”, that she “did not want to go to school”, that she “was depressed” or even that “nothing was wrong” with her at all. Anyone who knew Iona knew that that was ridiculous. She is a positive, determined, intelligent and hard-working person, and it is only because of her determination that she finally received support—she got it only because she and her family kept pushing for it. People should not have to be medics or administrative experts to get the support that they need.
Even after Iona received some support, limited knowledge meant that she was told to do graded exercise therapy, which did her more harm than good. Eventually, the Somerset ME service provided helpful advice and medical letters that unlocked support in education and from the council. However, that service is a short-term service that cannot provide medical care, and Iona has often found that GPs do not understand the nature of the service. Today, she still receives little or no medical help.
It is great that the NHS has rolled out training on ME, but people such as Iona who have ME and who have lost trust in the health system need to know how we can monitor the uptake of that training to change attitudes and reduce stigma among the medical profession. That is so important, yet more broadly the ME delivery plan lacks clear accountability structures, has no proper way to measure impact and has no clear deadline to meet. I hope that the Minister can respond to those concerns today.
Greater funding and support for research are also vital. Germany has pledged €500 million to research ME and find a cure for it. It is time that this country also stepped up and showed the same ambition. We owe Iona and all those with ME at least that much. In fact, Iona herself wants to contribute to such research and is now at university, studying hard after achieving fantastic results at school. People with ME are not asking for much; they just want to be believed and to receive the support they deserve. It is about time they got that support.