Here is the Wessely segment
Duncan Jarvis: Chronic Fatigue Syndrome is confusing. It’s gone by various names in the past, the etiology is currently unknown and they’re aren’t any diagnostic tests or biomarkers for it. Various causal agents have been suggested in the past and a new one, XMRV, has been in the news recently.
First we explain some background. I’m joined by Simon Wessely. Simon’s the Chair of the Dept. of Psychological Medicine at King’s College, London, and he also founded the first NHS unit to treat people with Chronic Fatigue Syndrome, and he’s also written extensively on it in the past.
So, Simon, for a start, in your experience, how would you characterize Chronic Fatigue Syndrome?
Simon Wessely: Well, I think it is much as you described. It is a controversial and rather difficult area of medicine. It’s certainly not new and, you know, the difficulty comes from the very things you’ve established, that this is defined on symptoms alone, on the history alone, where you have a characteristic history of someone with severe physical fatigue and fatiguability. In other words, it’s not just that they feel, you know, very tired all the time but physical effort makes them worse.
And, they also have mental fatigue, and mental fatiguability, so mental fatigue also leaves them in a state of exhaustion. And, they have other symptoms as well such as muscle pain, ah mood change, sleep disturbance, they often gain weight and various other symptoms. So, it’s defined on symptoms alone which always makes it a difficult category for medicine along with many other similar disorders.
DJ: The ME Association says that currently it affects about a quarter of a million people in the UK. Would you say that number is fairly accurate?
SW: Well, it all comes down to definition. If you use a broad definition which includes, for example, also people who have co-morbid, you know, concurrent depression, anxiety, it’s probably commoner than that - maybe up to 1 to 2% of the population. If you go for a narrow definition, it comes down to about 0.2/0.3%. It’s a bit like blood pressure; it all depends on where you draw the line.
DJ: Yes.
SW: But the one thing we can say, is that this is certainly a definable illness in the population and it does represent a not inconsiderable burden in general practice and primary care.
DJ: Yeah. Now it’s been in the news recently because of a potential cause that was put forward: this Xenotrophic Murine Leukemia Virus and related Virus, and we’ll be hearing more about that later, but there is a viral element to Chronic Fatigue Syndrome, isn’t there? Could you take us through that?
SW: Yes, there certainly is. I mean, this has been known now for well over a hundred years. People can develop what were known as Post Infectious Fatigue Syndromes or Post Infectious Neurasthenia Syndromes after, not just viruses but, a host of other infective organisms - Typhoid for example, ah Bruscella and many other organisms seem to have the capacity to trigger a prolonged fatigue syndrome.
And, if you look at nicely conducted longitudinal studies, for example, it’s very clear that certain, ah, viruses can do this more than others. Glandular Fever being the classic one and Glandular Fever, for reasons that still remain largely unknown, seems to be able to trigger more chronic fatigue and Chronic Fatigue Syndrome than most other infections.
But, what I think was unusual here was, in given the heterogenaity of Chronic Fatigue Syndrome, and its somewhat blurred boundaries, the claim that they’d actually found THE cause in the vast majority of people they studied, was always rather implausible.
DJ: Now it’s not the first time that A cause has been suggested and patients seem to tend to want to cling onto that. Do you know why that is?
SW: It’s certainly not the first time that a single unitary cause has been suggested. Uhm, but, to be honest, I don’t think that’s the right way to look at this illness. I think it’s much more multifactorial in the same way that, you know, heart disease - having a heart attack - is the end product of a lot of things.
I think for some people, however, any suggestion of a social or psychological component to the illness... there are some people who do find that very stigmatizing. And, really don’t like that at all, and would prefer there to be a single, unitary, neat, simple explanation. Uhm, preferably a viral or immunological cause like that. I’m afraid I think the world’s a bit more complicated than that.
DJ: (laughs) Ok. So, if you’re a GP and a patient presents with CFS-like symptoms, what care’s to be done for them?
SW: Well, the first thing to do is make sure you’ve got the right diagnosis and every year we pick up people, you know, who come along with looks like a chronic fatigue syndrome but when you look at it more closely there’s actually an alternative medical diagnosis. So, and of course, most GPs, most doctors, do that automatically, but nevertheless, it’s very, very important to stress: first of all, make sure you’ve got the right diagnosis.
DJ: OK. And, what would the next step be?
SW: Well, the next step then, you know... The model that we use at the moment, unsatisfactory though it may be, is that it’s a bit like being in a hit and run accident. You know, you’ve been hit by a car; we don’t need to know the number plate of the car that hit you in order to rehabilitate someone who’s been in a road traffic accident. Nor, when we’re dealing with CFS do we need to know precisely what virus it was that you had and when.
Uhm, as researchers and academics, you know, we spend years investigating these things and it’s very interesting but it doesn’t actually affect treatment. And treatment, very similar in large areas of medicine is about rehabilitation.
There are good and bad ways of managing this illness and this is now we start to look at all the secondary effects that have happened to you and a lot of people with CFS have got depressed, no question about it, and I don’t mind... that may upset people but that’s simply true. We also know that a lot of people who’ve had depression are more at risk for developing CFS. So, if people have got depression, let’s not ignore it; we’re going to treat that.
Some people have also got themselves into very unhelpful patterns of activity. They do too much, get exhausted, then they do too little to recover.
We’re going to look at sleep hygiene; can we improve sleep. We’re going to look at pain control. And, we’re going to look at this whole balance of rest, activity, sleep, energy and exercise. We’re not going to lie you down on the couch and talk about your mother, ‘cause it’s entirely irrelevant.
We’re not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it, there’s nothing we’re going to do about it. We’re gonna... in the business of rehabilitation.
DJ: So, it’s very pragmatic approach to...
SW: It is a very pragmatic approach, that’s absolutely right. And, it may well be, in a hundred years time, people look back and laugh at our pathetic and puny approaches to this illness - sobeit. But, it’s an approach that works. Uhm. It’s about improving control of illness; it’s about improving management; it’s about improving quality of life; ahh, improving the control of symptoms and many people will do very well on this approach.
DJ: Ok. So, you mentioned there that people sometimes do get upset by having a psychological therapy approach to treatment. Presumably there’s some evidence behind what you do.
SW: Yes, I mean, funny enough, I didn’t mention the word: psychological therapy unless you mean by the management of depression, and that can sometimes be a very biological approach.
It’s a rehabilitative approach that certainly, of course, takes into account social and psychological factors for sure but it’s the same approach that’s often used to help cancer patients, Rheumatoid Arthritis patients, any patients with chronic diseases are helped by this approach. I mean, the technical jargon term - it’s been bandied a lot around - it’s Cognitive Behaviour Therapy (CBT) but I do emphasize that this shouldn’t be seen as the Viennese psychiatrist with the beard lying you on the couch and asking you about your first few days of life.
It’s not about that at all and it’s actually very pragmatic and at no time at all will anyone doing this seek to convince a patience, “Oh no, you didn’t have ME after all.” Because they do. And, at no time at all should anyone seek to convince them that this is a psychological disorder because, first of all those terms are pretty meaningless in this day and age and, second, it may well not be.
You know, we're in the era of the brain, we think the causes lie in the brain and we don’t think they lie in the muscles or in the immune system, I should say that, and we do think they lie in the brain. And, these words start to become meaningless.
What we know, from the studies, is for people to get better, they don’t have to change their views of what’s wrong with them, they don’t have to alter... you know, we don’t have to get into these kinds of cartesian battles, that no one ends up a winner, but what we do need to look at is how they use rest, exercise, sleep and so on. And, how they manage symptoms. In other words, the kind of down the line consequences. When those change, the research shows people start to get better.
Duncan Jarvis: Chronic Fatigue Syndrome is confusing. It’s gone by various names in the past, the etiology is currently unknown and they’re aren’t any diagnostic tests or biomarkers for it. Various causal agents have been suggested in the past and a new one, XMRV, has been in the news recently.
First we explain some background. I’m joined by Simon Wessely. Simon’s the Chair of the Dept. of Psychological Medicine at King’s College, London, and he also founded the first NHS unit to treat people with Chronic Fatigue Syndrome, and he’s also written extensively on it in the past.
So, Simon, for a start, in your experience, how would you characterize Chronic Fatigue Syndrome?
Simon Wessely: Well, I think it is much as you described. It is a controversial and rather difficult area of medicine. It’s certainly not new and, you know, the difficulty comes from the very things you’ve established, that this is defined on symptoms alone, on the history alone, where you have a characteristic history of someone with severe physical fatigue and fatiguability. In other words, it’s not just that they feel, you know, very tired all the time but physical effort makes them worse.
And, they also have mental fatigue, and mental fatiguability, so mental fatigue also leaves them in a state of exhaustion. And, they have other symptoms as well such as muscle pain, ah mood change, sleep disturbance, they often gain weight and various other symptoms. So, it’s defined on symptoms alone which always makes it a difficult category for medicine along with many other similar disorders.
DJ: The ME Association says that currently it affects about a quarter of a million people in the UK. Would you say that number is fairly accurate?
SW: Well, it all comes down to definition. If you use a broad definition which includes, for example, also people who have co-morbid, you know, concurrent depression, anxiety, it’s probably commoner than that - maybe up to 1 to 2% of the population. If you go for a narrow definition, it comes down to about 0.2/0.3%. It’s a bit like blood pressure; it all depends on where you draw the line.
DJ: Yes.
SW: But the one thing we can say, is that this is certainly a definable illness in the population and it does represent a not inconsiderable burden in general practice and primary care.
DJ: Yeah. Now it’s been in the news recently because of a potential cause that was put forward: this Xenotrophic Murine Leukemia Virus and related Virus, and we’ll be hearing more about that later, but there is a viral element to Chronic Fatigue Syndrome, isn’t there? Could you take us through that?
SW: Yes, there certainly is. I mean, this has been known now for well over a hundred years. People can develop what were known as Post Infectious Fatigue Syndromes or Post Infectious Neurasthenia Syndromes after, not just viruses but, a host of other infective organisms - Typhoid for example, ah Bruscella and many other organisms seem to have the capacity to trigger a prolonged fatigue syndrome.
And, if you look at nicely conducted longitudinal studies, for example, it’s very clear that certain, ah, viruses can do this more than others. Glandular Fever being the classic one and Glandular Fever, for reasons that still remain largely unknown, seems to be able to trigger more chronic fatigue and Chronic Fatigue Syndrome than most other infections.
But, what I think was unusual here was, in given the heterogenaity of Chronic Fatigue Syndrome, and its somewhat blurred boundaries, the claim that they’d actually found THE cause in the vast majority of people they studied, was always rather implausible.
DJ: Now it’s not the first time that A cause has been suggested and patients seem to tend to want to cling onto that. Do you know why that is?
SW: It’s certainly not the first time that a single unitary cause has been suggested. Uhm, but, to be honest, I don’t think that’s the right way to look at this illness. I think it’s much more multifactorial in the same way that, you know, heart disease - having a heart attack - is the end product of a lot of things.
I think for some people, however, any suggestion of a social or psychological component to the illness... there are some people who do find that very stigmatizing. And, really don’t like that at all, and would prefer there to be a single, unitary, neat, simple explanation. Uhm, preferably a viral or immunological cause like that. I’m afraid I think the world’s a bit more complicated than that.
DJ: (laughs) Ok. So, if you’re a GP and a patient presents with CFS-like symptoms, what care’s to be done for them?
SW: Well, the first thing to do is make sure you’ve got the right diagnosis and every year we pick up people, you know, who come along with looks like a chronic fatigue syndrome but when you look at it more closely there’s actually an alternative medical diagnosis. So, and of course, most GPs, most doctors, do that automatically, but nevertheless, it’s very, very important to stress: first of all, make sure you’ve got the right diagnosis.
DJ: OK. And, what would the next step be?
SW: Well, the next step then, you know... The model that we use at the moment, unsatisfactory though it may be, is that it’s a bit like being in a hit and run accident. You know, you’ve been hit by a car; we don’t need to know the number plate of the car that hit you in order to rehabilitate someone who’s been in a road traffic accident. Nor, when we’re dealing with CFS do we need to know precisely what virus it was that you had and when.
Uhm, as researchers and academics, you know, we spend years investigating these things and it’s very interesting but it doesn’t actually affect treatment. And treatment, very similar in large areas of medicine is about rehabilitation.
There are good and bad ways of managing this illness and this is now we start to look at all the secondary effects that have happened to you and a lot of people with CFS have got depressed, no question about it, and I don’t mind... that may upset people but that’s simply true. We also know that a lot of people who’ve had depression are more at risk for developing CFS. So, if people have got depression, let’s not ignore it; we’re going to treat that.
Some people have also got themselves into very unhelpful patterns of activity. They do too much, get exhausted, then they do too little to recover.
We’re going to look at sleep hygiene; can we improve sleep. We’re going to look at pain control. And, we’re going to look at this whole balance of rest, activity, sleep, energy and exercise. We’re not going to lie you down on the couch and talk about your mother, ‘cause it’s entirely irrelevant.
We’re not going to go doing more and more tests to find out what was the virus because, frankly, even if we found it, there’s nothing we’re going to do about it. We’re gonna... in the business of rehabilitation.
DJ: So, it’s very pragmatic approach to...
SW: It is a very pragmatic approach, that’s absolutely right. And, it may well be, in a hundred years time, people look back and laugh at our pathetic and puny approaches to this illness - sobeit. But, it’s an approach that works. Uhm. It’s about improving control of illness; it’s about improving management; it’s about improving quality of life; ahh, improving the control of symptoms and many people will do very well on this approach.
DJ: Ok. So, you mentioned there that people sometimes do get upset by having a psychological therapy approach to treatment. Presumably there’s some evidence behind what you do.
SW: Yes, I mean, funny enough, I didn’t mention the word: psychological therapy unless you mean by the management of depression, and that can sometimes be a very biological approach.
It’s a rehabilitative approach that certainly, of course, takes into account social and psychological factors for sure but it’s the same approach that’s often used to help cancer patients, Rheumatoid Arthritis patients, any patients with chronic diseases are helped by this approach. I mean, the technical jargon term - it’s been bandied a lot around - it’s Cognitive Behaviour Therapy (CBT) but I do emphasize that this shouldn’t be seen as the Viennese psychiatrist with the beard lying you on the couch and asking you about your first few days of life.
It’s not about that at all and it’s actually very pragmatic and at no time at all will anyone doing this seek to convince a patience, “Oh no, you didn’t have ME after all.” Because they do. And, at no time at all should anyone seek to convince them that this is a psychological disorder because, first of all those terms are pretty meaningless in this day and age and, second, it may well not be.
You know, we're in the era of the brain, we think the causes lie in the brain and we don’t think they lie in the muscles or in the immune system, I should say that, and we do think they lie in the brain. And, these words start to become meaningless.
What we know, from the studies, is for people to get better, they don’t have to change their views of what’s wrong with them, they don’t have to alter... you know, we don’t have to get into these kinds of cartesian battles, that no one ends up a winner, but what we do need to look at is how they use rest, exercise, sleep and so on. And, how they manage symptoms. In other words, the kind of down the line consequences. When those change, the research shows people start to get better.