ME: Treatment and Research

Debate between Carol Monaghan and Ed Davey

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan]

NICE has said that it will review its guidelines and talk to patient groups and ME charities in doing that. We must continue to urge it to ensure that that is the case, because those best placed to talk about the impact of the current guidelines and what should be in future guidelines are those living with ME.

[Sir Edward Davey (Kingston and Surbiton) (LD)]

Should not graded exercise therapy be removed as a treatment option even before the NICE guidelines are reviewed, given the evidence that people are being harmed by it? The Minister is hearing that evidence today. Is there not a possibility that in future a court could compensate ME sufferers if they continue to be prescribed GET, given that we, the Minister and medical professionals know the evidence?

[Carol Monaghan]

One of the big issues we have is the real lack of awareness among many in the healthcare profession. I do not want to criticise people in healthcare, and in particular GPs, who have to cover many different conditions, but that highlights why GP education and ME awareness must be increased. It is not an uncommon condition, so we really need to look at that.

What do we need to do now? First, we need properly funded biomedical research into the causes of ME and the treatment of those with ME. I recently asked a series of written questions about the level of funding into biomedical research, and frankly the answers did not fill me with confidence. Less than £1 is spent annually on each ME patient in the UK. It gets worse, because the response states that that was not solely Government funding but, as has been mentioned, from a combination of funders including many ME charities. The Scottish Government have just announced £90,000 for a PhD studentship to support research into the causes, diagnosis and treatment of ME. It would be most welcome for people across the UK if the UK Government were to follow that lead.

I am pleased that NICE is reviewing its guidelines, but, as was just said, GPs are still recommending exercise as a treatment. I ask the Minister: how is the Department of Health and Social Care supporting training for medical practitioners on ME care and treatment? The new NICE guidelines will not be published until 2020, so what representations will he make to NICE to ensure that damaging exercise therapy does not remain the main course of treatment?

In the debate on ME in February, I asked the Minister for Care, the hon. Member for Gosport (Caroline Dinenage), about working with her colleagues in the Department for Work and Pensions to ensure that new guidelines are drawn up for dealing with people with ME. What progress has been made on that? Most importantly, will the Minister support proper funding for biomedical research into the diagnosis and treatment of ME? I understand that money is not usually ring-fenced for particular conditions, but, considering how poorly funded biomedical ME research has been up to now, what steps will the Government take to address that?

I thank all hon. Members who have delayed returning to their constituencies to speak up for those with ME. Their support is appreciated and welcomed by those here today, and by the wider ME community. I also thank the ME charities and campaigners who have briefed us all so thoroughly, and the Countess of Mar for her relentless campaign for improved treatments for ME.

ME is a condition that it is all too easy for us to ignore. Those afflicted by it are often unseen by society, but many hon. Members are in the Chamber because they have been approached by affected constituents. I thank all of those who have brought the condition to our attention. ME has a devastating impact not just on its 250,000 sufferers but on families and carers, too—it has a far wider impact. Ultimately, as politicians we must remember that statistics are simply patients with the tears wiped away.