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my supervisor to say, "My clinic is full of people I'm very concerned about. They
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say they've had an infection. I can't find anything on tests, but they seem very they very fatigued. They can't do
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anything. They seem very disabled, and I really feel we ought to be able to do something, but I've got nothing to offer."
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Um, often the call from Medson is, "I'm desperate. I've got nothing to offer. Maybe you could do something, but okay, that's okay. let's work with that.
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So the first thing I did um was to try and uh first thing I did actually before we even get that is I went and sat in
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the clinic and I really think there's no substitution to just immersing yourself
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in a clinical problem. I sat in his clinic. Then I started seeing some of the patients in my own clinic. And I did
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lots of informal open-ended interviewing uh read about the subject just immersed myself in it. And one of the things that
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became clear is we didn't have a good definition of this problem. So it's very hard to do research on something if you can't define what it is you're researching.
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So uh with colleagues we set up a a meeting where we agreed across disciplines some definition of what this
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problem was and a very simple definition rather like the definition of chronic pain. So fatigue was their main problem
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and been there at least six months. They had lots of other symptoms uh and they the the physicians couldn't find any cause.
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So we had a group of these people uh coming through the clinic. What's the next thing we want to do? Well, I had
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some impressions from listening to them and we then went on to do more formal description in a qualitative study and
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qualitative studies had their limitations but they're great at this stage to get a grip on the phenomenon.
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So uh these in-depth interviews that were then qualitatively analyzed found that these people even though their
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physicians couldn't find any bodily abnormality many of them or most of them believed that they had a physical
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illness that hasn't been found. They thought that if they did things and the symptoms got worse that indicated that
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physical illness getting worse and that was dangerous. and as an understandable result they limited activity and
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exercise. Um so this seemed to be the picture that was emerging. Um so that's
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interesting I thought but that's a small sample. So the next thing to do having got a qualitative handle is to get quantitative get into numbers.
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And so we did a uh I did a survey uh of a got the details of patients who had
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been seen in this clinic with this diagnosis and sent them a questionnaire.
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And we got 144 uh questionnaires completed and amongst the questions was
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what they think the cause of the illness is, how do you cope with the illness and we found that not all but a large proportion of them felt that they had a
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medical condition and that many of them avoided things including exercise that they thought were making it worse like symptoms. Interestingly,
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uh, on the social bit of the biocschosocial,
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we found that if they were members of a patient organization, they seem to have a worse outcome. Beware, correlation
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doesn't mean cause, but that was an interesting association because it could be that being in a patient organization reinforces these thoughts about the illness.
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So, we've done some description. What are we going to do next? Well, is this specific? So, this was a study done with
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colleagues comparing the views about symptoms in a group of chronic fatigue patients with patients with depression,
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some people who were well, and some people had multiple sclerosis.
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And the idea that symptoms uh were evidence for physical illness was uh was
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very common in the chronic fatigue group, much more common than a depressed group or or indeed the healthy group and
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were at a similar level to those who had multiple sclerosis MS. So,
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it seems that we've got some idea that there's some kind of psychological and behavioral pattern here that's very
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common in this group. Um, how could this possibly contribute to their illness?
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And I hope you're familiar with this,
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but this is a kind of allpurpose biocschosocial model. So this reminds us to look at the biological, the
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psychological and the social. And really importantly it it encourages to think is why did the person get ill? What
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predisposed them? What may have triggered the illness precipitated it?
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And really interesting why have they not got better? What's keeping the illness going? Because mostly we get better from illnesses. If it were an infection for
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example, most of us get infections and get better.
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So you could start to sketch some things in. Uh some of these are just hypothetical.
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Uh maybe there's some genetic vulnerability.
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Maybe it's triggered by an infection or other illnesses in the biological line.
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And there's something physiological going on. We assume we now know a bit more than we did then about changes in
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brain functioning and sensitization to symptoms and so on.
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psychologically where we we were really quite interested because we're adding something here. We presume some kind of vulnerability. The patients often
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reported some stress at onset. Um but importantly, as you saw, we found that they tend to assume their symptoms
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reflect a disease. They're fearful of making it worse and they avoid.
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And socially, we again we we're sketching this in. We don't really know.
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the stresses are probably important and there's we we were seeing some evidence that learning a story of the
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illness a narrative from patient organizations seemed to reinforce the psychological and also we saw people
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who've been ill who clearly now were stuck in not having work and dependent on state benefits and so on. But the bit we're really interested in is this bit.
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So if you're going to understand a condition, you need to know the whole thing. If you want to treat it, it's
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only really the perpetuating that's important. It doesn't really matter what happened down here. What matters is what can we do about any of this. So can we
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do something? Can we see if we can change how the patients think about their symptoms, how fearful they are of them, and if they get more active again,
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because these people are very disabled by definition. Could this help?
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So this is just a kind of static model of the columns. But of course, as Engle said, these levels interact.
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So we developed a number of models. This is one of them that was that we published that had this idea that these
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these variables interact in vicious circles. So it isn't just you have the thinking, you have the behavior, and you
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have the the bodily state. The things interact and this is a slightly complicated one but it puts together believing a physical illness fearing
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that symptoms mean harm therefore avoiding activity and in this case this was to explain the sauculillation get
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pressure builds up to do stuff pressure or pressure yourself to achieve stuff you do stuff you feel terrible you then
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go back to being inactive again and you're stuck in a vicious circle so a lot of these models have circles where
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the thinking affects the behavior, the behavior affects the the the the physical state and so on.
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So we can now start to sketch that these factors might interact to perpetuate the illness. So here's the acid test, the experiment.
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So I did a what by modern standards is an embarrassingly small randomized trial
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that was 30 patients a group and I and some psychologist colleagues treated them quite intensively with the form of
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CBT which um encouraged them to think about whether their symptoms really were
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dangerous and to try out very gradual increases in activity reducing avoidance
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That wasn't the only things going on in the therapy sessions, but that was the core we were trying to do. And we found quite dramatic improvements in their
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functioning compared to just people having ordinary follow-up.
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So this is what we call an efficacy trial or a proof of concept trial. It was done in ideal conditions. You can't
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go straight to the real world from this kind of thing. But it gave us the idea that these associations
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of beliefs and behaviors might be more than associations. They might actually be perpetuating because if we could
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change them, it seemed to change the illness.
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So some years later, I had an opportunity with colleagues to do what we'd call an effectiveness trial. So
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this is a big expensive trial. to 600 patients in multiple centers uh to see whether this kind of approach would work
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in the real world and this was published as the pace trial published in the Lancet and we found that interventions
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so there's four lines on each of these I'll explain them but the interventions that got people to rethink what their
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symptoms might mean and to become more active improve their functioning more than just
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usual medical care or staying within your limits, not worrying yourself with symptoms. And it's improved not just the functioning but also the fatigue.
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So here we see this is n to 12 months on the bottom. Whoops, sorry. And we see the active therapies that focused on
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behavior or focused on thinking, but both were essentially similar brought down the fatigue much more than usual
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care or being told to be pace to pace to live within your limits. And similarly,
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the physical function had the same pattern. The function improved in those who had the more active treatments and more than it did in those who had usual care.
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So there it looks like we now have enough evidence in this journey from starting in that clinic to have a useful
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treatment that that might people might be able to use. But of course research doesn't stop there. You really need
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other people to confirm that this is a finding. There's a big problem in psychology research as you know a findings not been replicated.
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So this particular finding has been replicated in multiple countries and multiple trials and indeed I think people are improving on the treatment.
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It's quicker now uh than we did and maybe more effective and people have started uh well been going for some years now actually doing it in clinics
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and laterally the same approaches seem to be the trials are coming out. It seems to be helpful for long covid.
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Some of you may know that along the way this wasn't a straightforward uh journey because some patient groups were very
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unhappy about this but that's a story for another day.
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So just to recap the research journey you need to be clear what it is you're studying really get into it like getting
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into a warm bath completely surround yourself with it. Do some description. Create some kind of tentative model.
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test predictions from that model, often in a trial, but could be an experiment.
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And hopefully other people will replicate it and then start to implement it in the real world if it looks useful.
