PACE Trial: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Lord Alderdice Excerpts

Wednesday 6th February 2013 Grand Committee

[Lord Alderdice]

Like the noble Lord, Lord Winston, I am grateful to the noble Countess, Lady Mar, for giving us an opportunity to look at this question, although I have some doubts as to whether your Lordships’ House is the best place to evaluate scientific evidence and do the exploration. I think that repeated research by other colleagues and demonstration within the scientific community is the way forward. I declare a previous interest as a consultant psychiatrist in the NHS, where I treated a number of patients with these types of symptoms.

The history of medicine is that we have tried to clump together groups of symptoms which appear relatively regularly together, and seem to have indication of possible outcome, and maybe of management and treatment. However, these are temporary constructs. It is perfectly possible that they are a whole bunch of different disorders which overlap in various ways. Even to talk about it as a condition seems to be making certain presumptions. Certainly, to conclude that there is a definite organic basis, other than to say that in every disorder there are organic and psychological elements, does not mean that we dismiss the psychological—on the contrary. When we think, we can only do so because some things are going on in our brains, which are a physical substrate.

My own position would have to be that we really do not know what we are dealing with. We are dealing with a whole range of symptoms and complaints. We do not know the etiology. The prognosis is variable with different people. We must continue working as best we can.

In the mean time, it is terribly important that we try to evaluate how to manage the problems that people come along to us with. We do not properly understand the schizophrenias; that is a group of different disorders. Yet we still have to manage the large numbers of people with these problems. That is the case with these people who come along with post-exertional fatigue, memory difficulties, pains and so on.

When we try to do that, it is not uncommon for patients to tell us that such and such a thing helps and that such and such a thing does not. I am not a particularly strong advocate of CBT, as some colleagues know, but I remember when I was using CBT with some patients suffering from depression. They would come along and I would ask them to write a diary of what they were doing every half hour and evaluate it. They would say, “I do not feel like getting up in the morning. I am too depressed and I cannot get out of bed”. I would say, “Look, I know that you don’t feel like it, but please try to get out of bed, structure some activity for the day, do it on an hourly basis and let’s see how you are”. Hey presto, when they did that, the thing that they felt would not make them better actually did. They were surprised about this.

That is one of the dilemmas about what patients think will help. Sometimes they are intuitively right and sometimes they are intuitively mistaken. The only way that you can understand this is to do some work in a scientific way. That is what these colleagues in this paper have tried to do. Some of them will have had particular notions about etiologies, but the point is that they were simply looking at what worked and what did not. What is the outcome? The outcome is that CBT and graduated exercise training are helpful for some people to some extent, and more helpful than the other things which have been suggested. It is not helpful to everybody and it is probably not completely helpful to almost anybody but it is better than doing nothing and better than the other things that have been suggested. There are a lot of scientific tables and graphs but that is the basic outcome.

To me, that is good news because it gives us some indication of things that might be helpful. It also tells us that an awful lot more work is necessary to find out what we are dealing with. If somebody came along and said, “There are such things as chest diseases, we should treat them in such and such a way, and the cause is this”, we would say, “Yes, that is true but there is a difference between asthma and cancer”. They might say, “Oh, really? Well, let’s explore that”. We are at that kind of level with this set of symptoms.

It is really important that when people give themselves to scientific enterprise in this area that we do not pillory them for their efforts. They may come up with some outcomes that people do not want to believe or that are not very welcome. We psychiatrists are quite used to the idea that often people would rather have a physical explanation for things than a psychological one. It is dreadful if we encourage that by saying, “Well, of course it is not psychological”, as though somehow it is a smear on a patient to have psychological difficulties. We must be very careful about that. I do not suggest that Members of your Lordships’ House would do that but it is something that happens out there in the community and about which we must be careful.

I am glad that we have had the debate. I trust that we understand the very early stage we are at. It is good that there is some indication here: the paper demonstrates that CBT and GET are helpful, and probably more helpful than other things, but there is a lot more to do. We should encourage people to get into the research work, not just for the ideology issue but to find what helps, and we should not pillory people who come in because that only drives people out of the research. That is the last thing we want to see.