ME: Treatment and Research

Kelvin Hopkins Excerpts

Thursday 21st June 2018 Westminster Hall

[Kelvin Hopkins (Luton North) (Ind)]

It is a pleasure to serve under your chairmanship, Mr Rosindell. May I first say how moving and graphic the speech from the hon. Member for Stirling (Stephen Kerr) was? I am so pleased that I was here to hear it.

I shall speak briefly because much of what I would have said has been said already, but I want to add my voice to all those demanding that we take ME seriously—that in the future, doctors and the medical profession do what they can to find out what causes it and to deal with that, but also to make lives bearable and strive to find cures if we possibly can.

I first became aware of ME some 30 years ago when two young relatives—close relatives, although not in my immediate family—contracted ME. They suffered for a long time during their childhood and youth. The condition is much improved now, but I became aware of the medical profession’s lack of belief in ME. They were constantly told that it was a psychological problem, not a medical or physiological one. We now know better.

There has been discredited research, such as the PACE trial—and others, no doubt—which is now being dismissed, and not before time. However, the medical profession and, indeed, Governments will grasp at things that encourage them to do nothing, or not to do something that is very difficult. To deal with it is very difficult.

We heard from the hon. Member for Chippenham (Michelle Donelan)—she has just left her place—who is the co-chair of the all-party parliamentary group on Lyme disease. I also belong to that group, because I had a very dear friend who suffered terribly from Lyme disease and who was not diagnosed for years. She suffered terrible psychological and physical problems, as well as marital break-up and so on. If people are not properly diagnosed and are not given the proper treatment and sympathy, they can suffer even worse than they do with the disease.

[Mike Gapes in the Chair]

The conditions vary enormously. People suffer very different symptoms, and some people suffer very severe symptoms. I had one constituent who, like so many others, could not get out of bed for long periods and had to live in a darkened room because looking at light was too painful. The idea that such people would have their condition dismissed as some sort of psychological phenomenon is complete nonsense and utterly cruel.

I have taken up this issue in the recent past, prompted by an old friend, Dr Ian Gibson, who was a Member of Parliament for one of the Norwich seats. He wrote to me about the PACE research, dismissing it as nonsense in the very strongest terms. He asked me to table a series of parliamentary questions, which I did, and I like to think they had some influence on the Government’s thinking. I hope the Minister will recognise the depth of feeling about the appalling way ME sufferers have been treated for so long, and start to take steps to correct that.

We are used to having experts tell us things and deferring to them, rightly in many cases, but of course sometimes experts get it wrong. Sixty or 70 years ago, some doctors were known to recommend that patients take up smoking because it would be good for their health. No doubt, some of those people died of lung cancer later on. It was a terrible thing to do, and some of those doctors should have felt rather guilty about that afterwards.

There was a particular case in the 1960s of a noted famous psychologist who wrote books about psychiatry that were regarded as bibles by young people. His view was that there was no such thing as mental ill health; it was just a different way of viewing the world. He was famously debunked when he was speaking at a conference to an audience of schizophrenics. They got up and said, “You are trying to tell us we are well. We are telling you: we are not.” People are suffering, and they are constantly being told that they are actually well—that they are just putting it on, or, as he said, that it is an alternative way of viewing the world. At the end of his life, that famous psychologist publicly recanted on the radio, after he no doubt caused much suffering to many people through his life.

We must always make sure that there is a proper evidence base and that statistics are properly measured. We had a paper circulated to us that shows that the PACE statistics were false. They just did not work. We want more resources put into making sure that proper research is done and that ME sufferers are properly supported financially and medically. We have to find what causes it. We have to find cures where we can, and we have to make the lives of people who suffer from ME a lot happier in future.

I have said more than enough. I wanted to add my voice to all of those who have spoken so brilliantly today, in particular the lead speaker, the hon. Member for Glasgow North West (Carol Monaghan), who made a brilliant and eloquent speech that I am sure we are all very grateful for.