ME: Treatment and Research

Lord Bellingham Excerpts

Thursday 21st June 2018 Westminster Hall

[Carol Monaghan]

There are many conditions that we now think could be grouped under the wide umbrella of auto-immune conditions. Lyme disease, multiple sclerosis, rheumatoid arthritis and ME may all be in that group, but without research we do not know.

Some people consider ME to be a psychological condition, despite the fact that people with ME are not allowed to be blood or organ donors. Unfortunately, those who hold such beliefs often are in influential positions and have a blinkered view of the condition. I wonder what they have to fear from proper biomedical research into ME. If such research showed they were correct, their views would be vindicated. However, if it threw up new information that had an impact on ME treatment and care, as medical professionals they should surely support that.

[Sir Henry Bellingham (North West Norfolk) (Con)]

I congratulate the hon. Lady on securing the debate. Is she aware that the UK charity Invest in ME Research recently opened a centre of excellence for ME research at Norwich Research Park? That was funded by patients and carers, who raised a staggering £800,000 for what will be groundbreaking, world-class research.

[Carol Monaghan]

I was not aware of that specific centre, but I am aware that almost all the biomedical research currently taking place in the UK is funded by charities and patient groups, rather than by the Government or research councils.

Interestingly, Professor Sharpe, one of the authors of the PACE trial whom I already mentioned, emailed me this week and told me that my behaviour is “unbecoming of an MP”. I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is “unbecoming”, I stand guilty. [Hon. Members: “Hear, hear!”] If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have?

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[Sir Edward Davey]

I share the hon. Gentleman’s concern. I should say that we still need a lot of research into MS, so it is not one or the other, but given the incidence of ME, as he rightly says, the case for research into the biomedical aspects is strong. Invest in ME Research makes a number of proposals in its recent report. For example, it proposes a ring-fenced fund of £20 million a year for the next five years for biomedical research. That recommendation comes from a detailed report; it is not just plucked out of the air. That sort of figure would show that the Government mean business.

I am aware that Ministers cannot stand up at the Dispatch Box and say, “Yes, of course we will direct research money into this probe; I myself will do it.” I am not suggesting the Minister can do that today. I know he cannot. He has to work with research councils and others to direct the research. I am also aware that if researchers do not make proposals, sometimes research moneys cannot be granted.

[Sir Henry Bellingham]

As I mentioned earlier, Invest in ME Research has set up a centre of excellence for research in the Norwich Research Park, and it is planning to create a hub for European biomedical research, which is good news indeed. It already has five PhD students and is hoping to push out a consultant-led clinical service. Here we have the infrastructure and base for that extra Government funding, to build on the money that has been raised by patients and carers.

[Sir Edward Davey]

The hon. Gentleman is absolutely right, and it is good that he is here to champion that centre. He makes the point I wish to make to the Minister: a pipeline of research proposals is likely to come about not only from the centre in Norwich, but no doubt as offshoots from research elsewhere—particularly the United States, which is beginning to get its act together on the research side. There is a pipeline, and I urge the Minister to anticipate that, to talk to the research councils and to say with his colleagues, “We will be ready and we will have the funds ready so that when the research proposals come through”—as I am confident they will—“we will back them.” Then we can start making progress. I say to the Minister, please, not to wait to see whether they come through before he dedicates the money and starts pressurising the research councils, because we know that process can take too long. People have already waited too long.

I will conclude my remarks by underlining two points touched on by the hon. Member for Glasgow North West. The first is the need for respect for patients. Sometimes it seems, from the stories I have read, that some in the medical profession—I say some—do not respect patients. They make comments that it is all in people’s minds and that they are making it up. That is no way to talk to adults. A constituent of mine who has been suffering from ME, who I talked to last night, recently went to see her consultant. The consultant said in terms, “All ME people are crazy, except you.” That did not make her feel very happy. I am afraid that type of view among senior medical people is not acceptable, and I hope Ministers will make it clear that they expect patients not to be treated like that.

That links to my final point, on the need to train doctors. We need better guidance and better training so they understand that situation. In that light, I am worried that we are seeing some pressure to reclassify ME. That is sending a dangerous signal, and I hope the Minister will say that the Government are questioning that reclassification and putting it on hold. Otherwise, the training for doctors will not happen, the respect for patients will not happen and we will not see the change that our constituents demand. I look forward to the Minister’s remarks and to the contributions of other hon. Members.

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[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.