ME: Treatment and Research

Debate between Luke Pollard and Kate Green

Thursday 21st June 2018 Westminster Hall

[Luke Pollard]

Absolutely. I thank my hon. Friend for making that point. I am a big believer in digital. As colleagues in the House know, I often talk about it. The ability of digital communities to connect the ME community to help them share experiences and realise they are not on their own is especially important, and I pay tribute to all the people like my hon. Friend’s constituent who do so much.

I want to talk about the effect of ME on young people. The condition affects people of all ages, but sometimes the most acute effects are felt by those whose lives have effectively been taken away at such a young age. Dawn reached out to tell me about her son who is 16 years old and suffers from ME. It was initially brushed off as a migraine and a growing pain and she was told children sometimes get stomach aches. She wrote:

“My intelligent, sporty, active son has now spent over two years virtually housebound. This horrible illness has robbed my son of his teenage years. He only has one friend, has huge gaps in his education, won’t be at the School Leavers’ Assembly, nor the prom. He had to give up football and badminton, his real loves. And all we can do is wait until he gets better.”

The stories of young people with ME are especially powerful, because we all recognise the potential in young people and what amazing things, given the right opportunities and support, they can and will do. For many young people with ME that potential is taken away, and it is especially acute because losing time during their school years affects not only their education but their societal development and the friendship networks they build around them.

[Kate Green]

My hon. Friend will be interested to hear of the 17-year-old son of my constituent, who first contracted the illness as a young child. It took seven years to get a diagnosis. That is an incredibly large proportion of a young person’s life in which to suffer appalling ill health with no proper medical intervention.

[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.