PACE Trial: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Lord Winston Excerpts

Wednesday 6th February 2013 Grand Committee

[Lord Winston]

We are all very grateful to the noble Countess, Lady Mar, for introducing this debate. I will be very brief and I apologise to her for missing the first minute of her speech. Very surprisingly, we were much earlier than expected and, unfortunately, the name of the previous speaker, the noble Lord, Lord Gardiner of Kimble, was still on the screen when I came into the Moses Room.

This syndrome causes persistent fatigue for more than six months, as well as various other symptoms. It is not relieved by rest, which is and has been puzzling for a long time. It is not the case that there has not been a lot of research. I have looked, for example, at MEDLINE, where we can see that there are 5,874 research papers on this condition. It was not only the Medical Research Council that funded the PACE survey; it is very clear that extensive work has been carried out and many countries have been involved.

Recently, I made a list of papers published in the past year. I will not bore your Lordships with all of them but we know of, for example, Moss-Morris at King’s, Dr White at Barts, Dr Lehmann in Bavaria, Dr. Fjobback in Denmark, Fukuda in Japan, Jackson in Australia, Lewis in Bethesda, Maryland—part of the NIH funders there—Wibourg from Hamburg, Bleijenberg from Amsterdam, Newton from Newcastle, Brooks from Huddersfield, Wessely from King’s and Vincent from the Mayo Clinic in Minnesota. There are many other names, but these are very prestigious departments of medicine. Effectively, they all come to the same conclusion; namely, that at the present time, the best treatment is almost certainly along the lines of cognitive behavioural therapy.

What is different about the PACE study is that it is a detailed, controlled study which has extremely rigorous entry into it. Unlike most previous studies, I think I am right in saying that—perhaps the noble Lord, Lord Alderdice, will correct me if I am wrong—there was only one drop-out, which is fairly remarkable. It means that it is extremely comprehensive, so there are very good data. It looked at a series of issues about treatment and it seems pretty clear to me that cognitive behavioural therapy is effective in something like one-fifth of patients, which is a bit more successful than the noble Baroness claims. I do not think we should underestimate that. They go some way to explaining that were cognitive behavioural therapy to be used perhaps on a slightly more financially secure footing with rather more sessions, it would be likely to be of more benefit, particularly toward the end of the treatment.

One issue is that far too frequently, we see that many of our colleagues have been vilified. Simply because they are psychiatrists does not mean that they are not doctors. That is a real issue, and it is not only psychiatrists who have been vilified. For example, Myra McClure, who was sure that there was not a viral causation for this disease, was absolutely vilified and decided to give up her research. This is also true of Esther Crawley, who even went so far as to report her vilification to the press and changed her telephone number. As some noble Lords will know, Dr Simon Wessely claims that he had death threats, which is very serious.

The problem, of course, is that to say that these vague conditions appear almost certainly to have a psychiatric basis is not to say that they are less important, or that the person who is suffering from them is in some way to blame. It means that we must find rational ways of treating them.

I commend this study. It is an example of really excellent research done in a very difficult phenotype and done very well indeed. The authors are to be congratulated on demonstrating clearly that cognitive behavioural therapy and, to a certain extent, some exercise in addition, is a real improvement on what has happened for these patients before.