ME: Treatment and Research

Alex Chalk Excerpts

Thursday 21st June 2018 Westminster Hall

[Alex Chalk (Cheltenham) (Con)]

It is a great pleasure to serve under your chairmanship, Mr Rosindell. Like other hon. Members, I pay tribute to the hon. Member for Glasgow North West (Carol Monaghan), who has shown great stamina in fighting for this cause and who set out the position at the outset of the debate with great detail and authority. I therefore do not want to repeat what she said, but will just make a few points.

I said in the application for the debate that the reason why I thought we needed to have it was that ME has terrible PR. That was a slightly flippant thing to say, but the real point I wanted to make was that it is a forgotten illness—and I think it is forgotten for two reasons. The first is that the symptoms are relatively intangible, and the second is that the condition has been disparagingly referred to in the past by a name that has stuck. The hon. Lady referred to it—yuppie flu. It is important that we debate this condition today, not because there are not other illnesses out there—of course there are—but because the sufferers, some of whom we see in the Public Gallery, have been voiceless too long and it is for Parliament to give them their voice.

I want to take this opportunity to thank three remarkable ladies in my constituency: Louise Beaton, Linda Hending and Rachel Ephgrave. With their courage, dignity and stamina, they have educated me and given me the opportunity to speak on their behalf. With that opportunity, let me begin by slaying some myths. The first myth is that of yuppie flu. ME is a thing. The US Institute of Medicine published in 2015 a report that analysed more than 9,000 scientific articles about ME. What did it conclude? It stated:

“The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease”.

In addition, as we have heard, the World Health Organisation has categorised it as a neurological condition in paragraph G93.3. Let the message go out today to those people who may have a dim awareness of ME that it is a condition; it is recognised as a condition; and it deserves to be treated as a condition.

The hon. Member for Glasgow North West has already referred to the impacts of the condition. I will not repeat those points, other than to note this. When we talk about its affecting an estimated 250,000 adults and children in the UK, that is important because it allows us to put it in context with other conditions and the way they are treated. For example, there are 11,000 or so new cases of brain tumours each year, according to Cancer Research UK. The late and much missed Baroness Tessa Jowell did a brilliant job of encouraging the Government to fund additional research into brain cancer, and none of us, least of all anyone in the Public Gallery, would begrudge that a penny, but £40-odd million has gone into that and it is right to note that the number of ME sufferers in the UK is considerably more than 11,000.

I also want to slay the myth about the kinds of people who suffer from this condition. I happen to know from my own constituency that the people we are talking about include former GCHQ workers, lawyers and teachers. It is heartbreaking to see lives curtailed and potential going to waste.

The symptoms of ME have already been referred to, but they bear emphasis. They include post-exertional malaise, muscle and joint pain, cognitive difficulties, noise and light sensitivities and digestive problems. We know all that, but there is one additional point that I want to mention. Although ME patients, contrary to another myth, are no more likely to suffer from poor mental health or emotional problems than the general population, adults with ME are six times more likely to die by suicide—six times more likely. When one considers the impact of the issues referred to very expertly by the hon. Lady—noise and light sensitivities and so on—one might be forgiven for saying, “Well, it’s not that serious, is it?” But the cumulative effect is so oppressive that it can lead people to take their own lives.

In the time left to me, I want to underscore two points. First, on welfare benefits, the overwhelming majority of respondents to an Action for ME survey on the issue felt that assessors had insufficient expertise. We of course understand that assessors cannot be expected to be experts in every single condition, but they do need to understand in respect of ME that the way someone presents on a particular day could give an entirely misleading picture of their condition. Why? Because the sheer effort of going to present themselves on that occasion can have long-term implications, and also the effects can be cumulative. People have good days and bad days, but that variability is not currently taken into account sufficiently and it must be.

That brings me to the second point. The issue about the NICE guidelines has been very well traversed by other hon. Members and I will not say anything further, other than to add this. Clinicians and experts will say, “Follow the evidence,” and of course they are right. Most of us in this Chamber believe in experts; we value experts and expert evidence, but patient experience is also evidence. It is quite wrong to put it in a category of material that can somehow be overlooked or, indeed, disparaged. It seems to me that there is an overwhelming body of material that suggests that the 2007 guidelines, which happily are now being reviewed, have to be seen in the context of a large body of evidence from patients that suggests that they are not working as they should. Patient evidence is evidence—that is the key point.

My final point is in respect of research. In the United States, a huge amount of research is taking place. There will be those who say, “Look, public money is extremely precious; public resources are precious.” That is absolutely right, but we know from the United States that research is having an impact. Work in the United States has led to new insights into the metabolic, immunological and neurological abnormalities of ME. Although the Department of Health and Social Care has repeatedly cited a lack of high-quality research proposals for the lack of investment, I hope that it will be able to take into account what is coming from the United States to give it some encouragement that there is scope for real advances. I underscore the point that £40 million is going into brain cancer research following the wonderful advocacy of Tessa Jowell; that places the lack of investment going into ME research in rather sharp focus.

I conclude by paying tribute to the silent sufferers of this cruel disease in our country. Let the word go out from the House of Commons: they shall be silent no longer.