ME: Treatment and Research

Desmond Swayne Excerpts

Thursday 21st June 2018 Westminster Hall

[Luke Pollard]

Absolutely.

I want finally to mention Maya, who got in touch about her sister, who is affected by ME. She says:

“Chronic illnesses need far more support and recognition than they get.”

Her sister—like Maya herself, who has fibromyalgia—

“faced repeated uphill battles to get the help she needs, and that’s even been with health professionals.

It’s so little talked about that even doctors and nurses have been stumped as to how to help her. This disease cripples and takes lives and we need to be doing more.”

There is something that we can take from the debate today, which was mentioned by the hon. Member for Cheltenham in relation to brain tumour research—the fact that the power of talking about a condition can bring about change. We saw that with Baroness Jowell, and it is happening today with motor neurone disease, as it is global MND Awareness Day. People are talking about their condition. We also see it in the work on fibromyalgia being done by my hon. Friend the Member for Chesterfield (Toby Perkins). It is a matter of talking about things that are not often talked about. The importance of debates such is this is in raising awareness. People with ME are not invisible. They are as human as we are, and need to be seen and heard. That means investing in proper medical research and in medical education for practitioners, and in a relentless fight against stigma for all people with ME.

[Sir Desmond Swayne (New Forest West) (Con)]

The hon. Gentleman began by talking about stigma—the stigma of laziness or of something “in the head”. We all know that the sort of people afflicted by ME are certainly not lazy. As to its being in the head, there may be some psychological causes of ME but it is none the less an illness, and to treat it as if it were not is to reinforce the stigma that has been so damaging with respect to mental health.

[Luke Pollard]

Absolutely. I think those were the most words I have heard the right hon. Gentleman say since I was elected. He is famous for short questions. I agree entirely, and the challenge of addressing stigma is understanding, because stigma builds where there is not a clear evidence base, and there is no understanding of what is happening to an individual—we do not know whether it is one or many things. That is why medical research is essential. It is also why understanding how the condition changes day to day is important—as is the way the Government prepare and support individuals. The DWP assessments are a great example. The assessment system at the moment is built around a system that does not adequately recognise the day-to-day lived experiences of those with ME.

We can carry on the relentless fight that is needed against stigma, to encourage more research, if we keep talking about ME and remember that people who have it are not invisible. They have a voice and must be heard.