Appropriate ME Treatment

Liz Twist Excerpts

Thursday 24th January 2019 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I thank the many constituents who have contacted me about their experiences, asking me to take part in this debate. In particular, I thank Pauline Donaldson of the Tyne and Wear ME/CFS support group, who plays a really important part in making sure that I and other Members from Tyne and Wear are aware of the very real problems faced by people who have this debilitating condition.

It is six months since we last debated this issue in Westminster Hall. That is six months more that people with ME have been waiting to see real progress on finding effective biomedical research into ME to work towards finding effective treatments for their condition, and six months more to suffer from the effects of ME. They are weary and impatient, and angry that treatments like CBT and graded exercise—psychological treatments—are still being put forward as the most common treatment for what is a physical condition. I am glad to take this opportunity to speak on their behalf.

Those people are looking for four things, the first of which is funding for biomedical research. I was shocked to hear that patients and families are helping to fund research themselves. It is really important that we find a way of having that biomedical research done through public funds.

Secondly, many people with ME and their supporters have demanded that the use of CBT and graded exercise therapy be stopped. I will come on to talk about my constituent’s experience of that. Thirdly, they want to see more training for GPs in recognising the signs and symptoms of ME. Invest in ME Research is doing much and has information packs, but it does not have the funds to extend that medical training everywhere. Fourthly, they would like to see an end to families with children with ME being subject to child protection procedures.

To finish, I want to talk about my constituent Angus, who was a senior lecturer in business at a north-east university. He says:

“In 2012, every aspect of my life changed when I was struck down with ME aged 47”.

He lost his job. He says that he was never a “couch potato”—in fact, just the opposite—and still loves active pursuits, but can no longer do any of them. He says:

“Climbing the stairs in the house seems more exhausting than any mountain I’ve climbed in the past.”

He underwent CBT and GET and found that it made him not better but so much worse that it was a relapse. I wish I had the time to read his evidence. It is crucial that we address this problem and give our constituents with ME the treatment they deserve.

[Several hon. Members rose—]