And yes, consider CBT and GET if you like. All those who comment that these two therapies are in various ways detrimental to our recovery - you have to ask if a) they have ever engaged in either or both therapies themselves, and b) why they do not accept that some of their fellow diagnosees have felt them to have been of benefit.
Hi Firestormm,
Your comments raise so many issues, that I'm not sure where to begin.
The problem stems with CBT and GET being used on the basis that ME is psychological in origin.
This is a problem for a few reasons: Firstly, misplaced claims, about the efficacy of CBT and GET, misleadingly support the theory that ME is psychological in origin. Secondly, it is damaging to patients to make claims that ME is psychological in nature. Thirdly, refusal to take part in these therapies can be used to confirm a psychiatric diagnosis. It is simply misleading to claim that CBT and GET are successful treatments.
So there are so many issues tied up with the use of CBT and GET for ME. It is not a simple case of the therapies being helpful for some patients and not for others.
If they were used and promoted honestly, simply as tools to help us cope with living with a chronic illness, then I don't think many of us would have quite the same problems with them.
But also, it is down to our personal experiences. When we first get ill, many of us respond violently and negatively to exercise (i.e. post exertional malaise.) So we learn to pace ourselves, and to decrease our activities. We are then told that we are ill because we aren't exercising enough, and we are prescribed exercise. Well, obviously, this is utterly perverse, and totally lacks insight into our illness and experiences.
Most of us were very active before we became ill, and we discovered that ME reacts negatively to exercise, and so we learned to reduce our activity levels in order to reduce and manage our symptoms. So, many of us aren't going to accept GET as a therapy, under any conditions. In MEA and AfME surveys, many patients have reported being harmed by GET in clinical settings. This is not difficult to imagine, considering the nature of ME, the ignorance of therapists surrounding the nature of ME, and our personal reactions to activity.
Also, in clinical settings, therapists might not understand how GET should be implemented for safety, or the nature of ME, enough to understand that GET should be implemented carefully and incrementally, and that symptoms should be monitored careful. Not that GET is effective anyway. Even in the best research setting (the PACE and FINE trials), GET was shown to be almost useless. And the 'deterioration rates' for the PACE Trial have not yet been released, so we cannot compare patients' anecdotal experiences of harm with the evidence, conveniently.
It also doesn't help when patients are accused of not wanting to get better because they refuse to participant in GET. The medical staff, who make the accusations, don't understand how ineffective GET is, they don't understand how GET should be implemented, they don't understand the nature of ME, and they don't understand our personal experiences.
ME is an immunological and neurological illness, so it seems quite ridiculous that CBT and GET could have any success in actually treating the disease, as they are psychological therapies.
To suggest that CBT and GET are effective, is an issue for all of us, because it lends credibility to the claims that ME is a psychiatric illness, and it leads to research funding being given to psychiatric research, which as been a big problem for us over the past few years.
I acknowledge that some people might have experienced at least subjective benefit from CBT and GET, but it should be noted that the improvements seen in both in the PACE Trial were no more than the improvements as a result of 'relaxation' seen in
another study by Peter White (although I haven't quite worked out how to take account of the control groups in this study.) In any case, CBT and GET made almost no difference in the PACE Trial. A maximum average of 13% of patients responded to treatment, by the tiny amount that was considered to be a clinical response. Patients were left severely disabled a year after treatment. In the FINE trial, CBT and GET were both found to be useless.
CBT and GET do not
treat ME, but there are many reasons why patients might experience benefit from both, such as:
1. Placebo effect.
2. Natural fluctuations in symptoms over time, that coincide with the therapy.
3. Patients who embark on GET might have already improved to a point where they feel ready to embark on a motivational course.
4. Patients find motivational techniques helpful.
5. Patients with psychological illnesses may have been misdiagnosed. (It has been shown that there is a 40% misdiagnosis rate for ME.)
6. Patients may be reporting their optimism, rather than actual outcomes.
7. Patients may feel subjective improvements, but there maybe no objective improvements.