House of Commons debate
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Carol Monaghan MP brought the motion: Appropriate ME treatment [ begins at 3.29 pm – lasts 1 1/2 hours]
Read the Hansard transcript: Appropriate ME treatment
28 MPs spoke with a response by the Parliamentary Under-Secretary of State for Health and Social Care, Steve Brine. Contributions to the debate by Welsh MPs:
Ben Lake (Ceredigion) (PC) – focuses on underinvestment in research
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.
Nick Thomas-Symonds (Torfaen) (Lab)
I pay tribute to the hon. Member for Glasgow North West (Carol Monaghan) for securing the debate. The Welsh Association of ME and CFS Support confirms that 12,600 families in Wales are affected by this condition. Even with those numbers, awareness of fluctuating conditions such as these is crucial in society generally and in the Department for Work and Pensions.
It is true that ME receives far less funding than neurological conditions of similar prevalence. That must change, and the funding must also be appropriately targeted. If the World Health Organisation classifies ME as a neurological condition, clearly investment in biomedical research is required, whereas thus far funding has been concentrated on psychological and behavioural studies.
In the short time I have, I would like to pay tribute to two constituents who have contacted me. First, Sarah Oakwell spoke movingly about her symptoms and the need to develop new initiatives and additional forms of individualised treatment. She spoke of the need for new therapeutic strategies and multi-centre interventions, given the fluctuating nature of the condition. She also spoke of the need for more Government-funded research and said:
“We will wait as we do now in the hope that today will be the day you listen, take note and do something to help us all.”
I would also like to pay tribute to my constituent Reg Hann, who contacted me about his grandson and made these moving comments:
“I have had a close relationship with him all his life. Now he is too ill to travel to visit me. Too ill to speak on the phone… He is 18 at the beginning of February and will be unable to celebrate such an important birthday. I will be 95 the week after. My best present would be if he is well enough to visit me.”
What Reg and Sarah need is action. I hope they get the action that they deserve.
Carol Monaghan MP finished by asking the House to support the motion and this was agreed:
That this House calls on the Government:
- to provide increased funding for biomedical research for the diagnosis and treatment of ME;
- supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment;
- supports updated training of GPs and medical professionals to ensure that they are equipped with clear guidance on the diagnosis of ME and appropriate management advice to reflect international consensus on best practice; and
- is concerned about the current trends of subjecting ME families to unjustified child protection procedures.
View individual MPs’ speeches on the #MEAction youtube channel
#MEAction: Historic parliamentary debate shaped by people with ME
ME Research UK: Commons Debate 24 January 2019
ME Association: Parliamentary Debate: Kids being taken into care by medics who refuse to believe ME is real
BBC Sounds: Today in parliament [brief mention starts at 21.45 minutes]
Debate pack for MPs
