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Experiences of daily activity in CFS/ME and their implications for rehabilitation programmes.

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jan 1, 2014.

  1. katcoff

    katcoff

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    First, I worked up to this point gradually over decades. Second, I have a very high threshold of pain as per an electroshock experiment I was in as a youth - above the legal limit, so I can push myself. And yes, Dr. Bell diagnosed me with CFS - I have typical symptoms.
    Finally, I have no idea what those abbreviations mean you used. I had a treadmill stress test a few years back for my heart and I did well.
    I'd really like to see the vagus nerve hypothesis investigated so that maybe I can experience the cure before I die.
  2. biophile

    biophile Places I'd rather be.

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    I understand there are different definitions of "rehabilitation". I am a little jaded from all the spin surrounding recovery and rehabilitation, since I fell for it before properly evaluating the evidence and was stung as a result. I do not like how certain terms and expectations are being watered down to save face over their failed approach (not by Firestormm, but by those promoting behavioural hypotheses and cognitive-behavioural modification therapies for CFS).

    Unless there is convincing evidence that "recovery" and "rehabilitation" (even partially, let alone complete) are actually occurring due to therapy, the terms should not be used. Otherwise it is palliation, adaptation, coping, management, etc. A complete recovery means returning to the health and function that would exist without CFS, it is as simple as that.

    Re expectations about returning to premorbid function. IIRC, whenever CBT/GET proponents talk about not expecting to return to premorbid function, it is usually framed in terms of not repeating the lifestyle that (supposedly) contributed to CFS in the first place, rather than in terms of getting older. I doubt that any reasonable patient, who for example is 40 years old and has been ill for 20 years, would seriously expect to return to the heath and function of a 20 year old.

    Long ago I came to terms with the possibility that I may never completely recover or even improve at all, but this does not mean I would consider a restructuring of my life without improvement as a "rehabilitation". Patients can come to terms with their pervasive impairments and ongoing suffering all they want, that is not a recovery either, that is an adaptation.
  3. Firestormm

    Firestormm Senior Member

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    Cornwall England
    I was pondering the use of the term 'rehabilitation' in connection with imprisonment last night. I wonder if any parallels might be drawn or if the use of the term is dependent on context and on the bias of the person employing it?

    Is a prisoner considered rehabilitated until he commits another offence? Is a patient until he suffers an unmanageable relapse?

    I take on board the point about management and coping methods, and I do agree. I believe that the NICE Guideline refers to such therapies as (though not using the term rehabilitation from memory) 'management strategies' and I think I would concur.

    Also, do please note, that my own therapy comprised 'Graded Activity Management' and CBT and I still maintain that the methods/techniques employed by the therapists are dependent on those therapists i.e. clinical delivery differs depending on whom you see and on the individual you are. But as I said before, my experiences are limited I fully appreciate and understand and are not representative.

    Honestly, I don't believe there can be a 'manual' approach to management on an individual basis or on a disease specific basis except in general terms. I also maintain that CBT is far from 'brain washing' and much more a common sense approach to any management of chronic illness - but again I do appreciate this is very much dependent on the therapist who is delivering the alleged treatment and on the individuals reception of it - as well of course in it's adjudged effective/usefulness.

    I would much rather take a pill, as I suspect we all would :)
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Most of us CAN push ourselves, regardless of pain. We just regret it bitterly when post-exertional malaise reminds us why we shouldn't.

    @Firestormm, maybe many/most of us would rather take a pill, but unless it were a natural one that corrected the underlying problems (e.g. leaky gut, inflammation, immune dysfunction, etc.) or a long-tried-and-tested pharmaceutical that was free of significant adverse effects, I wouldn't.

    As has been said repeatedly, the CBT that is commonly used as part of the CBT/GET package IS brainwashing. It is designed to disavow us of our 'false illness beliefs' and alleged 'kinesophobia'.
    Last edited: Jan 3, 2014
    anniekim, rosie26 and Valentijn like this.
  5. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    That's another context where the word "rehabilitation" is badly misused. Yes, it's the lofty goal espoused by politicians, but the (expensive) actions necessary to fulfill it are rarely undertaken. Prison is primarily punitive, to promote a desire to avoid it. It is not giving people the skills or motivation necessary to live successfully without crime, and in fact often has the opposite effect, in instilling a prison-culture into inmates and making it harder to find legal employment due to having a record.
    rosie26 and MeSci like this.

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