Cognitive Behaviour Therapy

Introduction

There is currently no known cure for ME/CFS, nor a magic pill to take to help reduce all the symptoms.  However, much can be done to help patients manage their illness and gain a degree of control over their lives.

Three specific treatment strategies are recognised in the Chief Medical Officer’s report (2002) as being potentially helpful in managing the illness: 

Pacing - a form of adaptive activity and rest lifestyle programme, encouraging patients to operate within the physical and mental limitations of their illness and avoiding activities that significantly worsen symptoms. 

Cognitive behaviour therapy (CBT) - a rehabilitative approach designed to modify the way patients think and behave about their illness and so improve physical symptoms.

Graded exercise (GET) - a professionally prescribed rehabilitative aerobic exercise and activity programme designed to improve patients’ physical condition. 

Opinions differ widely among doctors and patients on the benefits and disadvantages of each of these approaches, but the common aim of all of them should be sustainable improvement in physical functioning and reduction of fatigue.  There are many anecdotal reports of other approaches having positive effects on individual symptoms, but insufficient evidence currently exists to recommend them as overall management techniques.  Different people respond in different ways to different treatments, and ME/CFS patients rarely suit a 'one size fits all' approach.

Cognitive Behaviour Therapy

Cognitive behaviour therapy (CBT) is one of the management strategies recommended in the CMO report.  It is a form of psychotherapy that focuses on changing patients’ thoughts and behaviours.  It is designed to modify the way patients think about their illness and to get rid of any 'learned helplessness' that some believe may maintain ME/CFS.  Applied positively, by a trained therapist, the aim of CBT should be to help patients cope confidently with their illness and gradually increase their activity levels.  It is not a ‘cure’, but practitioners argue that it can reduce the symptoms and can help people return to their normal activities, so improving their well-being and quality of life. 

CBT aims to improve the physical, psychological and social problems of ME/CFS that interact with each other and which can put a strain on how patients cope with their illness. 

Physical problems may include pain, sleep disturbance, exhaustion, sensitivity, nausea, cognitive dysfunction ('brain fog').

Psychological problems may include stress, depression, anxiety, low self-esteem.

Social problems may include isolation, loneliness, being housebound, pressure from school, doctors, family.

CBT techniques should be administered by a qualified therapist and used alongside a set programme of activity and rest that has been agreed between the therapist and patient.  No matter what the age of the patient, they should always be included in planning their programme and feel like they are a partner in their treatment.  The content of programmes will vary between service providers and from patient-to-patient, but will usually include charting activity levels, energy and activity management, establishing a sleep routine, goal setting and psychological support to help patients overcome unhelpful thoughts and beliefs (“I’ll never get better”). 

Benefits of CBT

On the positive side, CBT programmes can help patients set realistic goals, recognise their achievements, acknowledge their limitations and learn coping mechanisms for when times are difficult.  CBT should help patients cope with their illness, and the stress of being chronically ill.  Stress hormones activate the body’s Autonomic Nervous System (see the book Three Villains by Jill Moss), which controls the body’s automatic functions such as body clock (sleep/wake cycle), heart rate, body temperature and digestion, amongst others.  Dysfunction of the Autonomic Nervous System causes changes in the body which are felt as ME/CFS symptoms, such as palpitations, nausea, dizziness, breathing irregularity, muscle tension.  In turn, these symptoms may cause patients to become frightened or anxious, which may in turn cause behaviour changes and mood swings.  It can be an ever-decreasing circle.  Remaining positive when under stress helps to reduce stress and the side-effects of stress.  As CBT aims to reduce stress, it may also have a positive effect on patients’ physical symptoms (see A Ray Of Hope by Jill Moss).  CBT aims to teach patients how to keep things in perspective, identifying any negative thought patterns, trying not to ‘catastrophise’ manageable problems, and putting solutions into place to help patients adjust to their new circumstances and better manage their illness.  It can teach patients positive behaviour strategies - pacing, planning, prioritising, balancing activity and rest, switching activities, setting goals, pre-emptive resting, remaining positive, being realistic.

What’s wrong with CBT?

CBT therapists believe that reduced activity and increased rest causes physical changes in the muscles and bodily systems that cause illness symptoms, and that when patients increase their activity they will naturally feel worse for a few weeks because of this bodily ‘deconditioning’.  So, therapists set activity programmes for patients that will challenge their bodies (to increase strength), and patients are encouraged to stick to their programme consistently, regardless of how they feel, as they should expect an increase in symptoms while their bodies adjust to the increased level of activity.  At the same time patients are given cognitive and behavioural training to help prevent them talking themselves out of the progress they are making by placing too much significance on increased symptoms they may feel as a result of the activity programme.  The key to success here is to have the right level of activity programme set in the beginning, so that patients’ bodies can cope with the gradually increasing demands of activity and so that their confidence grows as a result of the psychotherapy techniques.

However, many patients find that their experience of CBT is affected by the therapist's own beliefs about ME/CFS or whether they have any history of working successfully with other patients.  For example, if a therapist believes that ME/CFS is little more than tiredness and lack of physical fitness, they may set an aggressive rate of activity programme that is too hard or fast for the patient to follow and does not encourage patient feedback.  This inflexible approach may lead to patients ignoring significant warning signs from their bodies, such as seriously increased symptoms.  If this is applied in conjunction with the psychotherapy part of the treatment teaching patients that it is their own thoughts and behaviours that are preventing them from achieving the physical programme, patients may end up believing that they are failing to do the set activities because they are not trying to hard enough, or that they do not wish to get better.  Or if the therapist believes that ME/CFS is purely the result of negative thoughts, stress and unhelpful behaviours, then their CBT techniques may turn out to be too confrontational, which may lead the patient to feel blame for their illness.  '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. 

It is vital for there to be partnership between therapist and patient, as CBT depends heavily on trust.  A patient needs to be able to trust their therapist to challenge them but not push them too fast, otherwise they may be unable to lose their fear of trying something new.  Therapists need to take time to understand patients’ individual limitations in order to set appropriate goals.  Ultimately, patients need to feel like a partner in determining how and when their activity is increased (or decreased in the case of set back).

How can I be a partner?
If you are invited to participate in a CBT programme, the following questions might help you assess 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?

Conclusion
CBT is not a cure for ME/CFS, but it could be a helpful coping mechanism:

• If applied appropriately in teamwork 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, depression or is very negative or in denial

Patient feedback for the Chief Medical Officer’s Working Group report (2002) showed that a minority of patients said they found CBT helpful, many believed it made them worse but the majority reported no change in their physical condition. 

NB   Trials of CBT in ME/CFS have all used mildly to moderately affected ambulant adult patients.  There are no published randomised controlled trials of CBT for children or the severely affected.

A family's experience of Cognitive Behaviour Therapy

The following article from two AYME parents tells of their daughter's positive experience of CBT

We (the parents) investigated cognitive behaviour therapy in 2002 after reading an article in the Daily Mail YOU magazine about a teenage girl's dramatic recovery from ME after a course of treatment at King's College Hospital's Chronic Fatigue Unit in London.  Our daughter Jenny, then 16, 50%-ish, 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 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.  Trudie invited us to take part in a King's College trial aimed at young people with ME.

The treatment offered was a programme of CBT specifically tailored for young ME 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 was to last six months, with an hour-long outpatient session every two weeks.  The first appointment was in December 2002, and at first we all attended, but then just one of us went with Jenny.  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 this 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.  We were asked to take part in the initial sessions so that family interaction could be observed.

We know that many people are suspicious of CBT at King's because the Chronic Fatigue Unit is based in the Psychology Department.  However, it was explained to us that 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.  For Jenny, 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.  CBT helped Jenny break through those barriers.  We found Trudie Chalder's book Coping with Chronic Fatigue very helpful.

Article last edited on Thursday 12th August 2010                          Printable Version