The purpose of this paper is to briefly describe a cognitive behavioural model of CFS and to report six severe cases of CFS taken from a larger sample of patients described elsewhere (Butler, Chalder, Wessely and Ron, 1991; Wessely and Powell, 1989). They merit separate description since the severity of their symptoms necessitated in-patient treatment.
There's a lot of the typical background (mis)information about ME/CFS. High achiever, fear avoidance, deconditioning, blah blah blah:
In summary then, symptoms are perpetuated by physical illness attributions, unhelpful cognitions and schemas relating to perfectionism and avoidant coping strategies.
Who would've guessed that the state of medicine in 1996 was advanced enough to exclude all possibility of organic pathology?
It's not clear what sort of consent was required for the patients to participate, though I haven't looked at the larger studies cited which these patients were drawn from. There's the usual dig at calling it "ME" and organic attributions, with the added implication that the ME Association causes severe psychological disorders
:
All the patients had been extensively investigated by neurologists, and organic pathology had been excluded as a cause for their symptoms. Their care was then transferred to the Department of Psychiatry and the cognitive behavioural psychotherapy service. Patients were further assessed by a psychiatrist, using both standardized interviews and questionnaires (see Wessely and Powell, 1989). Psychiatric diagnosis was established by Research Diagnostic Criteria (RDC) (Spitzer, Endicott and Robbins, 1978). All patients thought they had ME, attributed their symptoms to an ongoing viral infection, and were members of the ME Association.
Average illness was 3 years, so pretty short. The bullshitting started early in treatment:
Care was taken to establish an accepting, empathic relationship and to acknowledge the reality of the patients' distress and symptoms. It was important to allow expression of dissatisfaction with previous medical advisors, many of whom were perceived as disbelieving of the genuineness of patients' symptoms.
This study provides a good illustration of what these assholes mean when they say patients have real and severe symptoms:
The therapist discussed with the patient the negative results of tests and investigations emphasizing that this did not detract from the reality of their physical symptoms. It was explained how taking a rigidly dichotomous view of illness contrasting organic and psychological was unhelpful and that a pragmatic approach was important whatever the cause.
"Problems" and "targets" were two of the outcome measurements, but seem too narrow in scope to be taken as a general indication of improvement:
A problem definition involved a succinct statement of the problem, taking into consideration cognitive, behavioural and physiological factors, for example, "difficulty in walking more than 20 yards owing to fatigue and muscle pain accompanied by the fear of making myself worse". Targets involved a behavioural description of long term goals, for example, "to be able to walk a mile a day without undue fatigue". These were rated on a nine point scale (0-8), the highest score representing the greatest degree of difficulty (Marks, 1986).
The Social Adjustment Questionnaire, Fear Questionnaire, and short form Beck Depression Inventory were also used, as well as the Chalder Fatigue Questionnaire.
I find it a bit creepy that the therapist was giving advice on treatment (or lack thereof) to other staff:
Patients were initially treated on a neuro-psychiatric ward for between three and eight weeks. Mean therapist treatment time was 10.5 hours (range 7-15 hours). The therapist attended ward meetings in order to ensure that the team was aware of the treatment approach.
5 of the patients were given varying doses of a tricyclic antidepressant, dothiepin, which is rarely used now due to toxicity.
A fairly nasty form of GET was a big part of treatment:
Goals were initially set at a level that was acceptable to the patient and achievable. For example, it was agreed that Case 4 should get out of bed for five minutes every hour. The aim of this negotiated goal setting was to maximize the chance of success, thereby increasing patients' confidence in the approach. An increase in activity levels was delayed until the previous activity could be performed without undue physical difficulty. Emphasis was placed on breaking the association between experiencing symptoms and stopping activity. As tolerance to symptoms improved, behavioural goals were stepped up.
They emphasize patients agreeing to goals, but given their manipulations elsewhere, it seems likely that it was really a goal created by the therapist. Again, it's not clear if reaching that goal was required before the patient was allowed (or supposed?) to leave:
Before discharge from hospital most patients remained out of bed during the day, and were able to walk for at least fifteen minutes outside the hospital three times a day. Goals were gradually increased until the patient had reached the longer term targets initially agreed upon at assessment.
Again, this seems controlling and manipulative, to claim the patients are in change while giving them strict instructions, reviewing their compliance, and recruiting family members to manage the compliance of the patients:
Care was taken to ensure that patients were actively involved in setting their own goals and they were encouraged to keep to them as far as possible. They were asked to keep a record of the activities undertaken and symptoms experienced. These records were then used as a basis for discussion in sessions with the therapist.
Patients' significant others were given detailed information about treatment and in two instances relatives were asked to act as co-therapists.
Pretty much everything about this is awful. I feel a bit traumatized just reading about it, and I hope the patients have managed to psychologically recover from what I can only describe as deliberate medical abuse:
Two of the patients sought reassurance about the significance of symptoms, and their fears as to the consequences of increasing activity levels. Because of the consequences of reassurance seeking behaviour, the unhelpful nature of reassurance seeking was discussed with the patient (Warwick and Salkovskis, 1985). They were then asked not to seek reassurance and were told that such requests would be met with a standard response in the form of a question "looking back to our earlier discussions about treatment what do you think my answer might be?" Whilst in hospital, patients came into contact with many health professionals. The entire health care team were therefore made aware of the importance of not giving reassurance, and were asked to give responses such as, "I am not able to discuss this with you; perhaps you should talk to your therapist about it."
Therapists attempted to undermine the self-awareness of patients, and to replace it with the thoughts of the therapist:
The occurrence of negative thoughts, for example "If I go for a walk today then I'll feel worse and will not be able to do anything tomorrow", often hampers progress. Patients were therefore taught to monitor their negative automatic thoughts, to recognize the link between thought and behaviour and to generate more helpful alternatives (Beck et al., 1979).
The failure of the treatment is blamed on the patient's lack of belief in it:
There are several possible reasons why one patient dropped out of treatment and failed to do well. First, she was depressed and failed to respond to anti-depressant medication. Second, although she initially agreed to treatment, she did not accept the model of the problem presented to her by the therapist. She was fixed in her belief that the illness was physical and could not be influenced by therapy. Individuals' beliefs about the nature of the illness appear to be of vital importance in CFS.
