Appropriate ME Treatment

Karen Lee Excerpts

Thursday 24th January 2019 Commons Chamber

[Karen Lee (Lincoln) (Lab)]

How do I follow that? I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on securing this important debate. Last year I was invited by a group of ME patients in Lincoln to a screening of “Unrest”, Jennifer Brea’s deeply moving and personal documentary. The film really opened my eyes to the bravery and resilience that people living with ME display on a daily basis. Over the past week, many constituents have contacted my office to encourage me to attend this debate. Hearing at first hand from people in Lincoln about the complex difficulties that people with ME encounter really underlined for me the need to provide more support at national and local level.

ME is a disease that poses unique difficulties for those who suffer from it. We are all aware of its fluctuating and sometimes invisible symptoms, which have fuelled an unjust and debilitating stigma around the disease. That stigma is institutionalised in the fabric of ME medical research, healthcare provision and our welfare system. When it comes to treatment, most people do not have access to adequate care and support, and there is an almost total lack of appropriate secondary services. Many primary care professionals receive minimal training on ME—I did not get a lot of training on this when I was a nurse—and are therefore occasionally prone to holding stigmatising and misinformed opinions about the illness. It is clear that more training is required, not only for healthcare professionals but for welfare assessors. Welfare assessors frequently have insufficient understanding of ME and therefore often fail to assess claimants accurately. I heard that a lot at the film screening.

It is completely unacceptable that people suffering from ME are, through no fault of their own, even more harshly exposed to the cruelties of Tory welfare cuts and the disastrous roll-out of universal credit. This Government must consider properly funding research into ME to better understand the condition. It is crucial that we all work towards eradicating the stigma of ME and improve routes to diagnosis, care and treatment. It is also crucial that all Members across this House recognise that that can only be achieved with adequate resources. I hope that today the Minister will give us a real commitment to do this, and not just warm but empty words.

--- Later in debate ---

[Carol Monaghan]

I thank all Members who have stayed behind once again on a Thursday afternoon, particularly the Members who sponsored the debate, and especially the right hon. Member for Loughborough (Nicky Morgan) and the hon. Member for Ceredigion (Ben Lake). I also thank the ME community for their lobbying and presence here today in the Gallery, and the Backbench Business Committee for granting the debate. We had some very clear asks for the Minister, which he has responded to in part. On the question of medical research, I am sure that many researchers will have heard what he said. However, it is notable that although there is some excellent biomedical research going on just now, it is being funded by charities, and not by the Government. The Government need to take this seriously.

Question put and agreed to.

Resolved,

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.

[Karen Lee]

On a point of order, Madam Deputy Speaker. I did actually mention the film “Unrest”, and I am sure that Hansard will bear me out on that. My constituents would never forgive me if I did not point that out.