Cognitive Behavioural Therapy (CBT)
Cognitive behavioural therapy (CBT) helps people with all kinds of long-term conditions to adapt the way they think and act, so that they can cope more confidently with their condition and gradually increase their activity levels.
CBT is frequently used to support patients suffering from a wide range of physical illnesses, and is also applied in other fields such as athletics. It is not a ‘cure', but it can help to reduce the symptoms, help you feel more relaxed about things and help get you back to some normal activities, which is all good.
CBT should be used alongside a programme of activity and rest that has been agreed between you and a qualified therapist. Ideally, you should see someone who understands ME/CFS - if you put your therapist in touch with AYME, explaining that we can introduce a specialist therapist who has expertise in ME/CFS and CBT.
You should definitely feel like a partner in your treatment. The programme will vary (largely depending on you) but will usually include keeping track of your energy levels, activity, sleep, goal setting and some support to help you overcome any thoughts and beliefs that may bring you down ("I'll never get better").
Benefits of CBT
CBT programmes can help you set realistic goals, recognise your achievements, understand your limits and learn coping mechanisms for when life is more difficult. It should also help you cope with the stress of your condition. This is especially important, as when you're stressed, your whole body is affected, including your heart rate, digestion, how you sleep, and your temperature. This can cause all kinds of extra symptoms, such as palpitations, feeling sick, feeling dizzy, breathing unevenly or having tense muscles… all of which can make you feel frightened or anxious… which of course can make you feel worse… CBT can help you break the pattern by staying positive, which can then help to reduce stress, which can then help those symptoms you may be getting as a result of stress.
CBT should help you to keep things in perspective and find ways to adjust to your circumstances and better manage the effects of your condition. It can be very helpful with pacing, planning, prioritising, balancing activity and rest, switching activities, setting goals, pre-emptive resting, remaining positive, and being realistic.
Limitations of CBT
CBT is not a cure for ME/CFS, but it can be a helpful coping mechanism:
- If carried out in partnership with the patient, taking account of their individual symptoms and circumstances
- If the patient is mildly or moderately affected
- If the patient is pacing themselves badly and in a 'boom or bust' pattern of activity
- If the patient suffers from panic, anxiety or depression; or is very negative or in denial
CBT therapists believe that less activity and more rest will cause changes in your body that will make you feel unwell; and that when you increase activity you will naturally feel worse for a few weeks because of what they call ‘deconditioning'. So therapists set activity programmes that will challenge your body to increase strength, and you will be encouraged to stick to the programme - however you feel - as you should expect symptoms to get worse while your body gets used to doing more. To help this, you would be taught how use the way you think and act to keep going.
To really work well, the CBT activity needs to be set at the right level in the beginning, so that your body can cope with the gradually increasing activity and so that your confidence grows as a result of the psychotherapy techniques. However, many people find that their experience of CBT is affected by the therapist's own beliefs about ME/CFS, or whether they have worked successfully with other people with the condition before. 'No pain, no gain' rarely works for ME/CFS, and all CBT therapists may not be aware of this, especially if they haven't worked with ME/CFS before.
For example, if a therapist believes that ME/CFS is not much more than being tired and unfit, they may decide on an activity programme that is too hard or fast to follow. This may lead to people ignoring warning signs from their bodies (like seriously increased symptoms). When you add in the psychotherapy part of the treatment – that is, teaching that the person's own thoughts and habits are stopping them from achieving the physical programme – the patient may end up believing that they are not trying to hard enough, or that they don't really want to get better.
If the therapist believes that ME/CFS is actually the result of negative thoughts, stress and bad habits, then their CBT techniques may turn out to be too challenging, which can also make the patient think they are to blame for their own illness.
So – it's really important that the therapist and the patient work as a team, as successful CBT programmes rely on trust. You need to be able to trust your therapist to challenge you, but not push you too far and too fast. Therapists need to take time to understand your condition, personal abilities and limitations to be able to set appropriate goals. You need to feel like a partner with your therapist in deciding when your activity should be increased, and by how much (or decreased in the case of set back).
Opinion on CBT
Patient charity surveys tend to be negative about ME/CFS, yet there has been research in adults which shows CBT as being helpful to patents with the condition (these trials have all involved mildly to moderately affected adults who are mobile). There are no published randomised controlled trials of CBT for children, or the severely affected..
AYME believes this is down to the individual therapist's beliefs and background; and that if CBT is delivered by a specialist therapist it can be helpful, and should be investigated before you make your decision.
Asking the right questions
If you are offered the chance to take part in a CBT programme, these questions might help you work out whether it is going to be flexible enough for you. Ask the therapist:
- How do you set the goals? (The answer should include 'teamwork' or 'in partnership with you'!)
- What happens if I feel it's moving too fast?
- What if I relapse?
- Is the therapy hospital or home-based?
- How long does each session last?
- How long will the programme last?
- What will happen if I don't want to finish the programme?
- Will I still be able to access other medical services/treatments?
- What happens after the programme finishes?
A Ray Of Hope by Jill Moss
A family's experience of CBT
We investigated CBT in 2002 after reading an article about a teenage girl's dramatic recovery from ME/CFS after a course of treatment at King's College Hospital's Chronic Fatigue Unit in London. Our daughter Jenny, then 16 was 50%-ish [on the Functional Ability Scale], unable to go to college or take part in any other sustained activity, agreed with us that there was nothing to be lost by making enquiries to find out more. Our GP referred us and we all went along for a first appointment with psychologist Trudie Chalder.
At the first meeting we traced the history of Jenny's illness from a bout of glandular fever in 1997, her return to school marred by frequent absences due to illness, and the subsequent ME/CFS diagnosis given by our GP in November 1999. Jenny gave a very full account of how the illness has affected her physical and mental well-being. The fear of any form of relapse from her precarious 50% ability meant that she often did nothing at all. She became trapped in a vicious circle where it was frightening to try even the smallest activity.
Trudie invited us to take part in a King's College trial aimed at young people with ME/CFS. The treatment offered was a programme of CBT specifically tailored for young ME/CFS sufferers. Trudie assured us there was no suggestion that Jenny's illness was not real, or just in her mind, and that CBT is used to help patients manage a wide range of different illnesses, physical and psychological. We and Jenny considered that she stood to gain from the treatment, which was patient-focused with Jenny firmly in the driving-seat. Jenny would need to work out a regular daily routine of activities (a 'baseline') that she could manage even on a bad day.
"The message was don't do too much or too little, try to avoid the yo-yo effect of excessive activity followed by inevitable exhaustion."
The trial lasted six months, with an hour-long outpatient session every two weeks. We were asked to take part in the initial sessions so that family interaction could be observed. The programme suggested a variety of goals designed to target particular problems. For example, Jenny had great difficulty getting up each morning and her life was very bedroom-based; she had her TV, computer and phone in her room. So Jenny agreed a morning target with Trudie of breakfast in bed at 10am, a wash in the bathroom, return to the bedroom to sit, but not go back to bed. Following that Jenny chose a range of small activities she felt she could do in small portions during the day, such as read a book for ten minutes, play her guitar, maybe go for a ten minute walk. At the end of the day - no computer after midnight.
Gradually breakfast in bed was reduced to a cup of tea only, with Jenny going downstairs for toast. Each of the tasks could be varied or added to. The programme was not rigid, and indeed not adhered to at times. At each session Jenny and Trudie would discuss this and there were no negative comments from Trudie, just encouragement and support. Jenny was frank about her feelings, and would admit when tasks had been missed. She responded to Trudie's suggestions and would come up with some of her own.
We felt that the input of the regular hospital outpatient sessions was the psychological key to the treatment. After a difficult start, with Jenny sometimes feeling worse rather than better, and sometimes being quite angry, something 'clicked' about half-way through the course and Jenny felt a dramatic improvement, which was also noticeable to us.
CBT has empowered Jenny, who was allowed to take control herself. Although she still has her tired and 'foggy' moments, and continues to pace herself, she has regained her confidence and feels she has moved on. In September 2003 she started part-time study at Sixth Form College and sat exams the following summer. She has been able to make new friends and has rekindled some old friendships that had faltered under the strains of ME.
We feel that the CBT programme Jenny was given was suitably graded to get her slowly back on her feet. We gave Jenny lots of support with the programme at home, which made things easier, but the important thing was that she learned to manage her own daily lifestyle herself.
CBT is frequently used to support patients suffering from a wide range of physical illnesses, and is also applied in other fields such as athletics. We found Trudie Chalder's book Coping with Chronic Fatigue very helpful.