ME: Treatment and Research

Liz Twist Excerpts
Thursday 21st June 2018

(6 years, 5 months ago)

Westminster Hall
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Liz Twist Portrait Liz Twist (Blaydon) (Lab)
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Like my hon. Friend, I have heard from many constituents affected by ME who asked me to come today to make their voices heard. He made the point about invisibility earlier, but some of the people who are not able to get out do things from their beds. For example, one of my constituents organised the lighting up of the Tyne Bridge in blue last year, so there are things that people do to make sure we get the message across.

Luke Pollard Portrait Luke Pollard
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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.