CBT & GET – My Experience

To follow up on the recent post on CBT and GET – I thought I would share my experiences of this. I imagine people’s experiences will vary widely.
These 2 treatments are still the main recommended treatments today – here in the UK and also in the US (as I learned last week).
My understanding is that they have helped very few people with CFS or ME – and many have reported that GET actually made them worse.

CBT = Cognitive Behavioural Therapy
GET = Graded Exercise Therapy

CBT :
This is a talking psychological treatment with a therapist, counsellor, psychologist or psychiatrist.
In my case it was with a clinical psychologist in Glasgow in 2004. There was a long waiting list for this – I waited around 9 months.
Well we now know that this does not work for CFS or ME – as it is a psychological treatment aimed at curing a physical condition.
To be honest, my experience of it was reasonable all the same. Compared to many other stories I have heard.
The psychologist was very nice and easy to talk to. He put no pressure on me to feel I should be trying harder and seeking another full-time job. By 2003 my health had forced me to resign from 3 jobs. One after 20 years, next after 1 year, and final one (part-time) after 4 years. And I had left with nothing at all financially – even after 20 years in the main job. So I was feeling a bit of a failure without doubt at that time.
Being able to talk and being listened to and encouraged did help me a lot on an emotional level. (Especially after what felt like brutal treatment and lack of help from a previous GP over more than 12 years.)
However it was no help at all with my CFS. It did nothing to cure it – impossible as we now know. And nothing much to improve it either.

GET :
My experience of this was just silly and a total waste of time.
I was referred to an exercise therapist who was based in a sports centre in Glasgow south-side in March 2003.
The first thing I remember that seemed stupid was I had to fill out a questionnaire – but it was full of questions about your mood, etc. Whereas I had been expecting questions about everyday stuff I found hard – eg. Housework. Or physical activities. By the end of the questionnaire my mood had certainly gone downhill – it had made me feel a bit stressed. As the questions bore no relation to the problems I was having day to day.
Next (after a short chat with the therapist) I was set exercise targets for a month. A combination of outdoor walks and using a sky walker (or elliptical trainer) I had at home. I was to do these every day. And I had activity charts to record my progress – with space for ratings and any comments. The ratings ranged from 8 (very easy) to 15 (very hard & unable to speak).
For the 1st month my ratings were all 14-15. But with no comments. It got no easier – and by the end of the 6th month my ratings were all 15 and I had even added some 16s. Plus I had a lot of comments too by this stage, eg. Felt sick, felt dizzy, felt shaky, back sore after, etc. Basically it was making me worse – but I couldn’t see it at the time.
The therapist phoned me after the 1st month. I said Yes I was sticking to the targets but it was very hard and I wasn’t any better. She said something vague like “well never mind, just keep going . . .” And changed the arrangement so that I was to phone her after month 2 with my “progress”. I didn’t bother to phone her back as she didn’t seem very knowledgeable or helpful. And couldn’t answer any questions I had asked. (She was probably glad I didn’t phone back !)
But I did keep pushing on with it as has always been my way. Although very stupid in this case. Then eventually gave in and just stopped.
I do realise that I was very lucky that the GET didn’t push me into a severe relapse though – as has been the case with others. And I was also lucky that my therapist was fairly uninterested – as many others have been pushed on too far by over-zealous therapists.

My thoughts now :
GET should be abolished. And CBT only offered as a complimentary treatment.

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