International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Imagining CBT/other talking therapies that would actually be useful

Discussion in 'General Treatment' started by Calathea, Feb 17, 2012.

  1. Calathea

    Calathea Senior Member

    CBT is a therapy which can be very useful for a lot of things. The idea is that you work to overcome negative/unhelpful beliefs, and develop good strategies for dealing with things. I've known people who've found it very useful for other conditions, such as being traumatised after cancer treatment. However, the problem when CBT is applied to ME is that it's built on completely wrong foundations: the idea that saying that ME is physiological is a "negative illness belief", and that we should all be encouraged to move more. A lot of people have come to harm due to this.

    However, that's just bad application of CBT. In theory, it's a neutral tool and it should be possible to apply it in a way that's productive. I don't think this is likely to happen in the near future, the medical establishment is too invested in the harmful approach, but I thought it would be interesting to discuss an ideal form of CBT, in which it could really help us. Here is what I have so far:

    1) Pacing, only focused on preventing overexertion instead of trying to bully us into doing more. This is far and away the hardest part of dealing with ME, I find.

    2) Coping with social prejudices against people with ME (and illnesses/disabilities in general), which are often downright abusive.

    3) Coping with the constant pressure to overexert ourselves, and preventing ourselves from internalising this message.

    4) Learning to grieve for what we've lost and to form realistic expectations about the lives we have (instead of the medical profession pretending that we'll all get better if we just try a bit harder).

    5) How to conduct relationships with family, partners, friends and colleagues (if applicable). This would partly be about working with good relationships, since ME makes even those difficult and stressful, and learning how to get out of bad relationships. It's horrifying how many people here have had to deal with serious abuse from family or partners.

    6) Learning practical measures, such as what to do if your eyesight gets bad, or how to manage using a shower or cooking.

    7) Dealing appropriately with depression, anxiety or other mental health issues but only if they actually exist, rather than assuming by default that we're all mentally ill. All chronic illness has a secondary depression rate, after all.

    8) Coping with a medical profession, social services and welfare system who have no idea what to do with us and can often treat us very badly. There can be a knack to dealing with them, and we often need emotional support from how they deal with us.
    WillowJ and L'engle like this.
  2. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    There is actually a paper on this sort of thing;
    This was a study by Rene Taylor who often works with Leonard Jason. It included pacing based on Jason's 'Envelope Theory' etc.

    I agree that this should be the focus of current best practises as opposed to CBT/GET.
    WillowJ likes this.
  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    very good thread :Retro smile:

    9) effective communication with medical professionals (even sympathetic ones). Given the complexity of our disease and the vast array of signs and symptoms we face--and the level of misery we have come to accept as normal--we need to learn to recognize warning signs of potentially important changes in health status.

    We need to prioritize signs and symptoms for a short consultation. We need words to adequately convey the essence, magnitude, and impact of signs, symptoms, and the overall disease burden.

    10) negotiating with physicians. We need to be able to be assertive and suggest things about our care, and refuse things the doctor may suggest, while still respecting the position and person of our physicians, and (only if they are a reasonable physician) soliciting their advice.

    We need to do this under poor circumstances: after traveling to the doctor, after walking in and having our blood pressure taken, and while sitting up in a chair or--worse--on an exam table, with our legs down or dangling (i.e., with little bloodflow in our brains).

    Many of us actually know more on some level about our disease, than the doctor does, but the doctor still has power (i.e., to prescribe medicine) and depth of knowledge that we may lack. (they also have power of the chart! this one is an unfortunate power imbalance, IMO)

See more popular forum discussions.

Share This Page