ME: Treatment and Research

David Drew Excerpts

Thursday 21st June 2018 Westminster Hall

[Dr David Drew (Stroud) (Lab/Co-op)]

I am delighted to take part in this important debate. I thank the hon. Member for Glasgow North West (Carol Monaghan) for introducing it and all other hon. Members who supported the application for a three-hour debate; we will certainly need it with the number of hon. Members who wish to speak.

I owe my knowledge of ME to friends who have suffered from it and, particularly, to constituents who have written poignant letters to me about their experiences and the hurt they have suffered when people just would not recognise that they had a condition—whether we call it ME, chronic fatigue syndrome or a post-viral condition. All those different elements make ME a problematic condition.

I mainly want to thank my constituent and friend, Dr Charles Shepherd, who is in the Gallery and to whom I mainly owe the few words I will say. He has advised the ME Association for many years now. Along with Dr Chaudhuri, he has written a book on ME. Hon. Members might like to go through it if they have a few moments; I went through it again last night. They will be staggered by some of the things that they did not know. However, I have to say that it is not the easiest read. It is very technical and very medical, but this is an incredibly technical and medical disease, which is why we do not know enough about it.

I will try to avoid the points made by other Members, but I make no apologies for going through some of the points made to me by Dr Shepherd. I also mention Sarah Reed—the wife of Andy Reed, the former Member for Loughborough—who has for a long period of time also suffered from ME and has been in touch with me about it on many occasions.

On medical education, it is quite clear that GPs, in particular, have no experience in how to diagnose this disease, so there is a need for training at both undergraduate and postgraduate level to make sure that doctors become more aware of what the condition looks like and the ways in which they could begin to treat it. That continuing lack of medical education adds to the misery that our constituents have faced. Dare I say it, it behoves the Minister—I know he will be tied in what he can say—to say something about the training programmes that we should expect our doctors to go through. It is vital that ME is understood not only by junior doctors but all the way up through the profession. We have understood, from some of the arguments on research, that there are still those who are not necessarily as keenly aware of ME.

[Michelle Donelan]

Does the hon. Gentleman agree that this is about awareness not only among doctors but among teachers, employers and the wider community? The lack of knowledge in those sectors exacerbates the conditions that those with ME suffer from, and that causes great distress.

[Dr Drew]

I agree, and the hon. Lady makes her point strongly. All I will say is that I will concentrate mainly on the medical side of things. However, everybody needs to be more aware because of the numbers—two in every 1,000 people are thought to suffer from the condition.

We have heard a lot about the PACE trial and the need for NICE to rewrite its guidelines, so I do not really want to labour those points, other than to say that it is not helpful that cognitive behavioural therapy and graded exercise therapy are still suggested as the appropriate way forward after ME diagnosis. We know for all sorts of reasons that that is not so. I am sure the Minister heard that and will want to comment on it.

[Alex Sobel (Leeds North West) (Lab/Co-op)]

My constituent was diagnosed with ME but, after going for a private test, it turned out to be Lyme disease. That shows the lack of knowledge and the confusion in the medical profession between those two conditions and others.

[Dr Drew]

If my hon. Friend reads Dr Shepherd’s book, he will see some of the overlap between Lyme disease and ME, as the hon. Member for Glasgow North West mentioned. That is why this whole area needs proper diagnosis and a proper investigation into some of the research implications.

On research, as has been made patently clear by other Members, most of the research is self-help. That is not good enough. This is a major condition that affects lots of our constituents, and yet they are asked to raise all the money for research themselves. That is not good enough, so we clearly ask the Government—as the Minister will have heard—and the research councils to give ME the priority that it deserves.

[Sir Henry Bellingham]

I hope the hon. Gentleman will support my campaign to get the Government to invest in the Invest in ME Research centre of excellence in Norwich. I did not mention that it has a really good chance of forging first-class links with not only European biomedical research institutes but institutes in the United States and Asia, where other groundbreaking research is being done. The Government should support and invest in success.

[Dr Drew]

I think that was aimed more at the Minister than me, but I totally agree with the hon. Gentleman. I gather that the National Institutes of Health in America has begun to grapple with this and to put some quite serious funding into it. ME is an international condition, so we should hope that the Medical Research Council is also able to provide that level of support.

We have heard about the impact of ME on people who go for benefits interviews with the Department for Work and Pensions. As the hon. Member for Glasgow North West mentioned, it is difficult to get those who judge people’s conditions to understand how variable ME is. When people are going for employment and support allowance, personal independence payment or, as has been the case more recently, universal credit, account needs to be taken, when practitioners are making decisions, of the fact that the condition is variable. Sadly, all the evidence is that that is not fully understood. Again, this matter is not the Minister’s responsibility, because it overlaps with the remit of the DWP, but I hope that he can take away from what has been said here today the fact that the DWP needs to be much more aware of what the condition entails, rather than making judgments on what they see the person performing in front of them.

I think that the most important point of all is that we all could put pressure on our local clinical commissioning groups to show greater recognition of how important it is that they fund ME, in terms of both support for the individual patient and looking at how they commission the moneys that go into the services. Clearly, this remains a Cinderella subject, but given the numbers affected and the misery suffered by people with the condition, that is not in any way acceptable, so I hope that as a result of today—again, the Minister will hear this—we might all be able to go out and talk to our CCGs about what evidence they can provide us with to show that they are properly funding treatment of this condition. As we all know, what has happened in the past has been totally unacceptable. Let us hope that there is a better world now and that we can all play our part in ensuring that this condition is treated with the seriousness that it deserves.