1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!

CBT for CFS is a political tool, and not a treatment. Discuss.

Blog entry posted by Bob, Jul 25, 2013.

Continuing my recent theme of mild rants, and letting off steam, I'm going to be a bit controversial here, and put this out there for philosophical discussion...


Thinking about this recent post further, I think CBT is very much a political tool, in relation to CFS.
It is used as a political tool in a variety of ways, including as a form of (small 'p') political rehabilitation for individual patients!

It is known from the PACE trial that CBT has no actual treatment effect for CFS, and yet it is still used as an official therapy for CFS. Why? Because it suits the establishment (government, insurance industry, health industry, commercial sector) for a variety of reasons.

With CBT, CFS patients are not treated, but are trained to think about their illness in the way that the establishment wants them to...
Trained to believe that they have a simple cognitive-behavioural disorder that can be successfully 'treated' with a talking therapy.
With successful 'training' the patient can be taught to think differently about their illness and their place in society.
It is convenient for the health industry, vested interests, insurance industry and government to promote this political tool, each for their own reasons.

CBT has no effect on health for CFS patients, but for ideological and political reasons it is heavily promoted.
Patients are 'trained' to change their opinions, and to view their situation within society differently.
They are trained to think about themselves in an alternative way that suits the promoters of CBT, for ideological reasons.
Is this not akin to political rehabilitation?

CBT is promoted by ideologues who wish to promote and instil their ideology onto others.
It's convenient to offer this political treatment for political reasons, and it suits many for commercial reasons.
Various sectors conspire (some knowingly, some unwittingly) to perpetuate this non-treatment.
It all boils down to politics, power and profit. (edit: and ignorance.)

CBT doesn't treat CFS. As we know from the PACE trial, the only effect that CBT has on the patient is to train them to think differently about their symptoms. (i.e. to believe that they are more mobile, when they are not, and to interpret their feelings of fatigue differently.) It makes only a maximum of 13% of patients think differently about their symptoms (self-reported primary outcomes), but it has no effect on actual physical function or disability.

OK, have I gone too far here?

Some patients clearly do benefit from CBT & GET, in some way, so I'm aware that some might find the above uneasy reading or even offensive. But I think we need to acknowledge that these 'treatments' are rolled out for the convenience of the system, and not the patients. Most of the patients I know want assistance, treatment and help in other ways, such as:

1. Personal care at home.
2. Social care and assistance with daily living.
3. Financial support.
4. Helpful, accurate & appropriate information.
5. Someone to listen to them, and occasional emotional and moral support to help coming to terms with living with such severe and chronic illness. (e.g. occasional counselling, or a professional support network.)
6. Strategies to help manage symptoms.
7. Practical help coping with severe chronic illness. (coping strategies and practical help.)
8. Biomedical treatments, including experimental ones.
9. Expert physicians who treat the biomedical symptoms.

But what do we get? Treatments proven to be unhelpful, based on ideologies rather than evidence, and treatments based on a fundamental misunderstanding of the nature of the illness, created by medical professionals who don't listen and can't observe.
MeSci, Mesurfer, ~ Ariel and 8 others like this.
  1. alex3619
    This kind of thing has indeed been discussed for a long time now. Indeed, huge sections of my book will be addressing some of these points specifically. What is missing from this argument though is the impact that changing economic theories have had on politics and government policy. Most of these issues started arising at the same time, in economics, politics and psychogenic medicine. It might be just coincidence, but I am looking into it.
    Jarod and Bob like this.
  2. GracieJ
    You haven't gone too far. It's sad to see CBT abused, because it's a great tool used correctly with just about any disease/illness. It's getting another face now as something useless.

    I remember being diagnosed and treated with something I did not have in the early days of my illness. I tried hard to "respond" to the medications and things, and my, my, my... it just wasn't working. It was hard to convince the doctors that the real problem was still there. "Well, just give it more time." I was sick from the medications, so quit them. It's amazing how human beings can twist a situation into something it isn't and truly believe it.
    MeSci, Jarod and Bob like this.
  3. ukxmrv
    I don't think you have gone too far at all Bob. Other people with ME and CFS have been saying the same thing for years now.
    MeSci, Jarod and Bob like this.