ME: Treatment and Research

Ed Davey Excerpts

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 The new NICE guidelines will not be published until 2020, so what representations will he make to NICE to ensure that damaging exercise therapy does not remain the main course of treatment?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.

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

I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on securing the debate and all hon. Members who will participate in it. It is essential that we speak for the millions missing, and it is great to see so many people in the Public Gallery.

What I find so shocking is that scientists seem not to want to have the debate. I hope that right hon. and hon. Members across the House find it shocking that the hon. Member for Glasgow North West was written to by a scientist and called out. I have seen scientists writing in journals such as the Journal of Health Psychology calling out the PACE trial, so the idea that the scientists who produced that work have gone unchallenged by other scientists is simply not true. A huge amount of evidence from eminent people in the science community questions the PACE trials, including the methodology, the evidence they used and how they treated their patients, as the hon. Lady said. Therefore, it has been proven not to be the case that the NICE guidelines, built on that questionable evidence, are the only way in which we should consider this disease, and she did that well in a previous debate.

It is great that the NICE guidelines are to be reviewed, but my concern is that that will take some time. I am sure that is the right process; we must get it right and ensure that the voices of ME sufferers are heard. Scoping working groups have been set up in which ME sufferers have been able to participate, and that is welcome. But I find it quite scary that the current guidelines will be in place until October 2020. I have listened to my constituents and read about those of other right hon. and hon. Members who feel that if they are prescribed according to those guidelines and go through all that, it makes them more ill. Far from helping them, it makes them deteriorate. Indeed, I have a constituent who feels that the programme she was put through set her back two or three years.

Real harm is being caused by some of the therapies recommended in the guidelines. If that is the evidence from ME sufferers—I am not a scientist, but from what I have read, that experience is widely shared—it is up to the Minister, working with the chief medical officer and others, to question whether the NICE guidelines should be suspended, at least with respect to GET. If GPs, perhaps because they have not been trained, are making medical prescriptions for treatment following NICE guidelines because Ministers and the chief medical officer have not acted, if that treatment is harming people, and if that continues until October 2020 there will, as I said in my intervention, be a case for those who are harmed to go to court and seek compensation.

No one wants that. To avoid it, surely there must be a way in which Government Ministers, working with NICE and the CMO, can issue guidelines directly to GPs and medical professionals to say, “Be careful before you prescribe GET. Ensure that you have read the evidence. Ensure that you have talked properly to the patient.” With many drugs and pharmaceuticals, there are sometimes side effects. Therapy does not work for everybody. Where is the warning in the NICE guidelines of the side effects of GET? That is serious, because people could be seriously hurt in the period between now and the conclusion of the NICE review.

I will move on to research. Looking at the work that Invest in ME Research has done, for example, setting out the calls for research in this country over two decades or more, I find it quite disturbing that those calls have been ignored. Only charities have enabled a meagre amount of research to be done. Some £5 million was set aside for the PACE trial; if we could have a small amount of that money to start real, biomedical research into ME, we would be making a step forward.

[Andrew Selous]

Does the right hon. Gentleman share my concern that, as I understand it, there are roughly two and a half times more people with ME than with multiple sclerosis, yet there is 20 times more research on multiple sclerosis than on ME and, of what little ME research there has been, the vast majority has been through psychological and behavioural studies rather than the biomedical approach?

[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.

[Andrew Rosindell (in the Chair)]

As a lot of colleagues wish to speak in the debate, I ask that everyone keep their remarks within about eight or 10 minutes each, if that is possible. For the benefit of the Minister and the Opposition spokesmen, I hope to be able to start the winding-up speeches at 4 o’clock.