Nov 19, 2019
How can a talking therapy help with a problem that feels as physical as chronic fatigue syndrome?
Ben Adams talks to Dr Lucy Maddox about overcoming his initial scepticism about CBT and why he's glad he did. Professor Trudie Chalder explains the ideas that cognitive behavioural therapy for chronic fatigue syndrome is based on.
Show Notes and Transcript
More information is in the the links and books below.
For more about BABCP check out: www.babcp.com
To find an accredited therapist: http://cbtregisteruk.com
NHS Webpage about treatments for CFS:
Overcoming Chronic Fatigue Syndrome by Mary Burgess and Trudie Chalder
At the time of recording all information was accurate. NICE guidelines are currently being reviewed and due for release in 2021
Lucy: Hi, and welcome to Let’s Talk About CBT, the podcast from the British Association for Behavioural and Cognitive Psychotherapies, or BABCP. This podcast is all about CBT, what it is, what it’s not and how it can useful.
In this episode we’re going to find out about CBT for chronic fatigue syndrome, also known as myalgic encephalomyelitis or ME. Throughout the podcast you might hear ‘chronic fatigue’ sometimes used instead of the full name. But it’s chronic fatigue syndrome or ME that we’re talking about.
I went to a specialist clinic at the Maudsley Hospital in London to meet Ben who’s experienced chronic fatigue and its treatment. I was there on the hottest day of the year so the tube was pretty horrific.
Ben: I’m Ben Adams and I was diagnosed with chronic fatigue syndrome back in, gosh, 2015 I think it was now.
To give a little bit of a history I was healthy, broadly healthy, in as much as anybody is, until about sort of 2012. Then I became… I had a period of depression, there was difficulties in my personal life and relationships and all sorts of family things. And I think my body sort of chose to break down in some way or stop me a little bit.
And I started feeling very tired, really unwell, my brain wasn’t clear. I thought originally it was the depression, but actually I think that morphed into the chronic fatigue. I think one sort of caused the other. And they can go hand in hand quite a lot.
It took me about a year or so – or a bit longer – to actually get the diagnosis of chronic fatigue as opposed to trying to treat depression which wasn’t really doing it. Because I wasn’t actually that depressed (laughs). My mood was actually fairly good. I was just concerned about why I felt so weak and so feeble all the time.
And, yeah, it had a lot of impacts on me. I missed a lot of work during that time. I was working full-time beforehand, had rarely had any sickness over the last sort of 20 years of work. The odd day off here and there but I had… I mean over about four years or so, I had about 18 months off totally in sections. And when I was at work I was on phased returns and doing short hours and not doing a great deal to be honest.
So I had a really long period of sort of getting worse and worse, trying to get back to work, making myself worse. And I actually felt that each time I’ve tried to get back to work after a long period of sort of being unwell and being off sick, it would be hard and after a while it would be… it would feel like I was making myself worse. Like the activity, the mental and physical activity of going to work, each time there’d be a sort of a breakdown afterwards and I’m thinking, “God I’m getting worse and worse, that my baseline is getting lower each time of what I can do.”
And so it was getting to the point where I was almost housebound when I was at my worst. I think, yeah, I’d had about nine months off sick in my longest sort of period off sick at once. And it felt like it was getting up to the end really.
I’d tried all sorts of things beforehand. I’d had a very short period of CBT at the start of my illness, but that was also a bit sort of to do with depression as well. So maybe it wasn’t targeted as well.
And so that didn’t work brilliantly and so during those four years I was trying all sorts of remedies that you read on the internet. Vitamins, testosterone, I don’t know, everything I could try. And nothing helped. And then eventually I got into the Maudsley Hospital.
Lucy: We’ll hear more from Ben and his experience of therapy. At the clinic I also met Trudie Chalder, Professor of CBT at King’s College London, and Director of the Persistent Physical Symptoms Research and Treatment service.
I asked Trudie, who’s treated lots of people with chronic fatigue, what it means to have the condition.
Trudie: Chronic fatigue syndrome is defined by, obviously, its symptoms. So the primary symptom has to be fatigue, but it’s also associated with lots of other physical symptoms such as pain, painful muscles, so myalgia, sleep difficulties, concentration and memory problems to name but a few.
It’s also associated with lots of disability. So people who have chronic fatigue symptoms are often unable to carry out normal activities that we all take for granted.
Some people are not able to go to work, even though they would like to. Other people manage to go to work but are not managing much else in the way of social activities or being able to do things at home – the hoovering or washing up or whatever.
So it has a very profound impact on people’s lives. There are some people who seem to be managing it reasonably well at one end of the spectrum, and then there are other people at the other end of the spectrum who are very severe, who may be in a wheelchair or may even be bedbound.
Lucy: Before starting the therapy, Ben had reservations about whether it was right for him.
Ben: I was incredibly cynical at the time. I’d been on the internet a lot. I’d been looking for cures, looking for hope for a long time and I was very much of the thought that extra activity, increasing my activity, would make me worse as it seemed to have been doing throughout those phased returns to work.
Lucy: That sounds quite scary actually. If you get worse every time you go back that sounds quite frightening.
Ben: Yes, it was. It was really frightening. And so that was, when Antonia was saying we could have a treatment here and I was like, “Well, I don’t want to get any worse and at the moment I’m housebound but I can just about live on my own.” And I have friends who would come round and empty the bins for me and things like that and do heavy stuff. But I could sort of potter around my flat and get out occasionally for a little walk.
There was a few emails going back and forth with Antonia at the start. And I was saying sort of, “What guarantees can you give me? I’m really scared.” And she said she couldn’t really give 100% guarantee that it wouldn’t get any worse but she said in all her sort of 10 years of treatment in this field at the Maudsley that none of her patients had ever got significantly worse. A lot have got better to various degrees. So I thought, “Well, weighing it up I’ll give it a go.”
And so I started treatment with her. I think that was towards the end of 2016.
Lucy: There was something else that concerned Ben before trying CBT which is quite a common concern for people experiencing chronic fatigue.
Ben: I think as a chronic fatigue syndrome sufferer, when you come into the Maudsley Hospital it’s a sort of mental health unit. And you’re kind of thinking, “Hang on a minute, I feel like I’ve got really bad flu all the time. Why does somebody want to talk to me about my mind?” Some people get really angry about on the internet. We all know about that.
And I can understand that. You kind of think, “Why are you trying to treat my head when I feel my body’s so awful?” And so I think maybe trying to get over the fact that the CBT, even though it’s talking therapy, your physical symptoms are there and it’s a slightly different way of managing them as opposed to taking a pill.
But it’s a hard thing to explain to people who think, “I feel very ill, I need some sort of pill, there’s something wrong with me physically. I need a… talking to somebody’s not going to help.”
Lucy: Yeah, it’s a really, I can totally understand how frustrating that must feel if you’ve got very physical symptoms then you're being asked to come and talk about it.
Lucy: Trudie explained a bit more about this link between physical symptoms and how CBT can affect them.
Trudie: Well I suppose the first thing to say is that the fatigue is not the sort of tiredness that we all feel on a day like this when it’s nearly 100 degrees.
Lucy: It’s really hot.
Trudie: Yeah. (Laughter)
The fatigue that people are feeling is abnormal. It feels very out of control and it feels extreme. And there’s no doubting the fact that the symptoms are real and they’re physical. But that real physical symptoms, which will be potentially perpetuated by physiological factors, so hormones and all sorts of different things that are happening in your body, as well as what do you, that those things can be altered by you doing things differently.
Lucy: What is cognitive behavioural therapy for chronic fatigue syndrome? What’s it like?
Trudie: Well, cognitive behaviour therapy is a practical approach primarily. It’s a talking therapy. And it helps people to reengage with some of the things that they value very highly. And gradually build up their activities over a period of time.
Obviously at the start people feel very daunted about any change. And at the beginning they may feel very sceptical about whether it’s going to even work. But obviously with all CBT everything is negotiated with a therapist, so nothing is imposed upon anybody unless they decide that that’s what they want for themselves.
And at each session, which is usually an hour long and occurs weekly or fortnightly depending on what the person is able to do, it can be face to face or over the telephone. And at each session the person will discuss any goals that they’ve set with the therapist and any difficulties that they’ve had. And then those difficulties can be discussed with the therapist in a problem-solving kind of way.
Lucy: I asked Ben a bit more about his experience of CBT.
Ben: I think I had… let me think, was it about 10 or 11 sessions with her maybe? Every couple of weeks. And so it would be a combination of CBT and discussions of how to increase my activity.
So I think the CBT, it was mainly aimed at how to – not differentiate between physical and mental symptoms – but sort of understand how the body and the mind interact. And stop me thinking that I would necessarily make myself worse by doing physical things.
And that was key. I was terrified that every time I did extra physical activity it was making me worse. And she was saying, actually the opposite, could be okay and actually make me better. But to do that you had to get through the mental barrier, I think, of the perception of my experiences.
Lucy: At some point did you have to start doing more? Or not have to maybe but choose to?
Ben: Yes. I mean, well every session I had, I think they were every two weeks to begin with, we’d sort of set targets.
And so one of the first ones would be just to go out of the flat and sort of walk around the block. And then, and I’d do that every day. And I think that that was the key, one of the key things was doing it consistently, not thinking, “Oh I’ve done that, I’m exhausted. I need a long rest now. I won’t do that tomorrow. I’ll give it a few days.” To do it every single day, however I felt, and make it a consistent repeating pattern. And it did slowly get easier.
Lucy: That’s so hard to do, isn’t it? I mean anyone who tries to make a change of any kind, that’s really difficult to get that consistency.
Ben: Yes. Yeah, definitely. And it was difficult but I… I think having her to guide me and to meet her every two weeks really helped because there be some times I’d come in and think, “I feel really awful, this isn’t getting anywhere. We’ve made some gains in the first few weeks but now I’m not feeling great. Should I keep going with this? Is it going to hit me hard in a couple of weeks’ time and then suddenly I’ll be even worse than I was?”
But I think having somebody to guide you through it, to talk to you when you're down or feeling unwell really helped.
Lucy: Trudie described what she often sees happening during a course of CBT.
Trudie: What we tend to see in the beginning is that people become more consistent in what they’re doing. So they’re less driven by their symptoms, as it were, and they become more in control of their lives. So rather than the symptoms controlling them they become more in control of what they’re doing.
So they develop a more consistent approach to things and then their fatigue usually starts to reduce a little bit.
Sometimes things get slightly worse before they get better. But on the whole, if they can stick with it and they're consistent in the way in which they approach things, they do improve.
Lucy: Consistency is really key. Ben gradually increased the amount of activity that he was doing.
Ben: Over the weeks I would extend my exercise, so I’d walk further and further round the block. I’d walk to my local park, Burgess Park.
Initially I’d sort of… (Laughs) I’d have places to stop that I knew so I could, there’s benches that I would lie down on, have a bit of a rest, get a bit further. And then make my way back. And then gradually I was getting further and further away from my flat.
And then it was a combination of doing that with taking my fold-up bike. I think you’ve just seen that earlier.
Lucy: I did just see, very impressive, you cycled on the hottest day that we’ve had this year. (Laughter)
Ben: I'm in a first floor flat and I used to pick up that bike, about 13 kilos, and I hadn’t ridden it for a long time. And I remember the task was, not even to take it down to ride, it was just take it down the front stairs to the ground floor and then take it back up. (Laughs) And it was very heavy and I was very weak. But I did it and then again I did it every day and every day.
And then I got on it and then I cycled round the block, so I have a cycle and a little walk every day. And it’s just really building that up until I was able to then return to work to a degree as well.
Lucy: Right, how did that go?
Ben: It was okay. My employer, Transport for London, I’ll give them a plug now actually because they sort of looked after me quite well during all this period. I think a lot of other companies after that amount of sickness I’d have been given the heave-ho. But they were very good. And they let me come back on a phased return.
The first week, I think it was one hour a week working from home. So it was the minimum amount of work you could possibly do. And I was doing some sort of very basic admin sort of data entry type stuff. Just to get into the habit again of looking at a screen and typing and getting into that sort of mode and that mindset.
And then gradually again that increased more and more work from home, longer hours, longer hours. And eventually I would come into the office on one day a week. Again gradually I built that up so I’d come in and do longer hours and actually do some work.
Probably about two and a half years ago now I got back up to 21 hours a week. Which was my part-time number of hours. So like a three-day week effectively. I’d been a five-day a week, 35-hour week beforehand, but I’d sort of been moved on to a part-time one as part of trying to make me manage it.
The good thing was I could then actually do that and I have been able to do those hours since then without any illness really.
Ben: So it’s, yeah, so it’s been really good. But it’s a long hard slog and… (Laughs)
Lucy: Yeah. Going from seeing you cycling in today and then you talking about sort of being stuck in your flat before it seems so, so different.
Ben: So once I sort of understood how my mind was reacting to the physical symptoms I was experiencing, and then I could then change my actions based on that and start doing more exercise. But in this very regimented sort of safe way that wasn’t a sort of a boom and bust I think that happens to a lot of people. They think, “Ooh I'm having a good day, I’ll do quite a lot today.” And then you feel awful the next day.
It’s still there. I know that using excesses of energy is going to hit me hard. And even actually when it’s hot like this I think I’m definitely more susceptible to extremes of heat or exercise or temperature or those sorts of things. So I’ve just got to be a bit more careful. So I’m not cured but I’m a lot better.
Trudie talked about boom and bust as well.
Trudie: Sometimes people have inadvertently got into that pattern of doing a lot when they feel very energetic and not doing very much at all when they’re very symptomatic. And this is totally understandable. But I suppose it can perpetuate the problem.
So in the first instance we ask, as far as is possible, given the demands of everyday life, that people try to be more consistent in their approach to activities to try and avoid that booming and busting. Which is quite a common thing. I mean people do it with all sorts of different illnesses. But, of course, it does leave even a healthy person feeling exhausted if they go at things like a mad thing. (Laughter) And then collapse with exhaustion. It can be more effective to do things in a more consistent way.
Lucy: I was just thinking we could probably all learn something from that.
Trudie: Yeah. (Laughs) Exactly.
Lucy: As well as regulating activity, Trudie and Ben both agreed that it is helpful to develop a sleep routine.
And is there anything else that you think people should know?
Trudie: Well I think the most important thing is that nothing is forced upon them. Everything is negotiated, it’s a talking therapy, so the therapist will be hopefully warm and empathic and understanding. And will really take a problem-solving approach but together with the individual.
And usually things are never simple. So there will be lots of problems along the way and hopefully the therapist would help the person to sort those things out.
And also I think the other thing is that if at first you don’t succeed, keep trying. Often it’s that life, other life events have got in the way or it’s been difficult to be consistent. But I feel sure in terms of having been in this field for more than 30 years that it is possible for people to change and that it’s possible to be hopeful.
Lucy: That’s great.
I asked Trudie about the evidence base for CBT for chronic fatigue.
Trudie: Well there are lots of studies now carried out in different countries around the world, but in particular the UK and the Netherlands, showing that CBT is an effective treatment in terms of reducing the symptom of fatigue and improving disability. So at the end of treatment people are much better able to carry out their normal lives than they were at the beginning.
Obviously it’s not a cure for everybody. And people are often still left with some symptoms. But a lot of people do improve. And there are, as I say, lots of randomised control trials demonstrating its efficacy.
Lucy: To end I asked both Ben and Trudie if they had any last remarks for people who are considering CBT for chronic fatigue.
Ben: It’s good in that it’s quite focused and practical. I mean I’ve had a lot of sort of talking therapy in my life for various things over the years. And so I sort of delved into my background and my family and all those sorts of things. And it’s always quite interesting. But I think you can sort of go too far with that, dwell too long on that.
And actually I think CBT’s a bit more, “Let’s get to the nub of the problem and try and sort out your thinking so that you can improve in a more focused way.” You generally don’t have too many sessions of CBT and it’s – it is more practical and more focused and I think that’s something that is good actually.
Trudie: I would suggest you go along to the GP and hopefully if your GP is supportive they could potentially refer you to a specialist centre. There are a few around the country but also the IAPT services are now seeing people with chronic fatigue syndrome and chronic fatigue.
Lucy: And IAPT, is that Improving Access to Psychological Therapies services that are nationwide now?
Trudie: Yes. That’s right. And they should or could potentially be able to see the person as well. So I think in the first instance go along and talk to somebody about what it entails. And take it from there.
Ben: It definitely helped me. It’s not going to cure everybody obviously, but it’s certainly a very good and focused way of changing your mindset I think and helping you to think about things. But I know it can be used in all sorts of different illnesses and different ways, particularly where the mind and body sort of overlap. It’s been a good experience for me.
Lucy: Oh that’s great.
Trudie: I suppose to finish on a note of optimism I would say that the majority of people that I’ve seen over the years, and it’s a long time, have really wanted to change and have demonstrated to me that change is possible.
Lucy: That’s great. A hopeful message to end on. Thank you.
A really big thank you to both of my experts there, Ben and Trudie. If you’d like more information on CBT for chronic fatigue have a look at the show notes. There’s lots in there.
For more on CBT in general, and for our register of accredited therapists, check out BABCP.com. And have a listen to our other podcast episodes for more on different types of CBT and the problems that it can help with. There’s one on obsessive compulsive disorder, post-traumatic stress disorder, psychosis. There’s lots there.
That’s all for now. Bye.
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