Appropriate ME Treatment

Ben Lake Excerpts

Thursday 24th January 2019 Commons Chamber

[Ben Lake (Ceredigion) (PC)]

I join others in congratulating the hon. Member for Glasgow North West (Carol Monaghan) not only on securing this important debate but on her tireless work, with others, to raise awareness of the difficulties that individuals with ME endure; on relentlessly challenging authorities to improve the way in which they support sufferers; and on giving a voice to those who all too often feel abandoned and alone.

As we know, ME is a chronic, multi-system disease that impacts approximately a quarter of a million people across the UK. To put that number into context, ME affects more people than the terrible Parkinson’s disease and multiple sclerosis combined. It is estimated, as has been mentioned, that it has an economic cost of some £3.3 billion. One would imagine that those considerations alone were sufficient to ensure adequate funding for biomedical research into ME and clinical care for those suffering from the disease, and yet ME research represents just 0.02% of all active grants given by UK mainstream funding agencies. It really does beggar belief that research into an affliction that leaves 25% of sufferers housebound or bedbound, and from which 95% of people do not recover, receives so little funding. This underinvestment needs to be addressed urgently, and I hope that the Minister can help in this regard. I also support a review of NICE guidelines on the treatments prescribed for ME and hope that that can be implemented as soon as possible. If positive changes are adopted, I hope, of course, that they are, in turn, implemented by the Welsh Government so that ME sufferers in Wales can benefit.

It is near impossible for those of us fortunate enough to not suffer from ME to truly comprehend its real, tangible impact, so I would like to conclude with the words of two individuals who have contacted me to share their experiences of the disease. John Peters suffers from ME and was first struck down in the 1980s. The impact on his life has been total, as he so painfully put it to me:

“I have missed the whole spectrum of life: the big things such as family, a career; holidays, celebrations, the ‘hooks’ of someone’s years; but also the minor events—that night out with a friend, the moment on a mountain, the lazy morning in bed with someone, that fantastic book, the sharing of a joke.”

Saran, a teenager from Ceredigion, has suffered from ME for over a decade and is now mostly housebound after receiving a formal diagnosis only last year. She told me:

“I have no idea what a life without chronic pain is, I don't know what it’s like to be able to tolerate noisy bright spaces, what it’s like to remember the conversations I’ve had with those I love…I have slowly watched my life disappear over many years, and now I’m entirely dependent on my parents, have no job, A levels, or hope for the future.”

I sincerely hope that this debate succeeds in its objectives, for we simply cannot wait any longer. John and Saran deserve some hope for the future.