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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 Guest

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    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
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  5. Valentijn

    Valentijn Activity Level: 3

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    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.
     
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  6. Dolphin

    Dolphin Senior Member

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    I've just read the full paper.

    As others have suggested, these aren’t big CBT/GET proponents and I think there are a few useful enough points against such a view.

    However, I think, unfortunately readers would come away with the impression that patients were pathological in their pre-illness behaviour while I imagine a lot of people in society if they were to become ill with ME would think that their previous lives were very busy and might give similar descriptions of their pre-illness lives and behaviours.

    At the same time, there could probably be something useful for some people in what they say about having to adjust with the illness and that previous modes of behaviour may not be suitable. But they never mention any biological findings and generally I don’t think one is given strong enough reasons for people to understand that the illness is different from being healthy; instead, many could read it as simply the patients have pathological behaviour patterns and all they need to do to be well is change such behaviours and act normal.

    I’ll now post a few quotes/extracts.
     
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  7. Dolphin

    Dolphin Senior Member

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    They highlight somewhat conflicting findings in the field.
     
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  8. Dolphin

    Dolphin Senior Member

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    Headings
    - Life before illness – constant motion

    - Doing everything/being busy

    - Starter finisher

    Reasons given for constant motion

    - Achieving goals

    - A choice to be busy

    - Emotional responses linked to being active

    - Responsibility or duty

    - Pushing to the limit

    Extract:
    - Expectation of activity

    So not lazy/similar (a lot of it would be similar).

    - Striving to do better
     
  9. Dolphin

    Dolphin Senior Member

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    Other issues related to constant motion

    They make this sound pathological but I think a lot of jobs don't involve a lot of down time.
     
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  10. Dolphin

    Dolphin Senior Member

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    They give some provisos/perspective:
    This brings up the issue that it would have been more interesting if they used controls with other conditions.
     
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  11. Dolphin

    Dolphin Senior Member

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    This highlights issues some likely have to deal with
     
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  12. Dolphin

    Dolphin Senior Member

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  13. Dolphin

    Dolphin Senior Member

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    I think this is an issue for some people. But they pathologise it I think. A lot of the boom and crash is from doing normal activities that people would normally have done with no difficulty before the illness, and others might expect them to be able to do. Or normal activities that are hard to avoid like the examples biophile gave of doing a shop or collecting your post.

    If there was more acceptance of ME as a biological condition where GET/CBT/doing more wasn't the answer, and more supports for patients in various forms (with money, paid carers/assistants, general attitudes, etc.), people would probably find it easier not to overdo it.
     
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  14. Dolphin

    Dolphin Senior Member

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    I find the underlined sentence odd. The authors seem to suggest more rest could be useful but then say with this that rest won't help. I think this may be influenced by the pro-CBT/GET environment in the UK.
     
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  15. Dolphin

    Dolphin Senior Member

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    What they found is the opposite of what the CBT/GET model of the illness is.
     
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  16. Dolphin

    Dolphin Senior Member

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    I thought this was an interesting enough observation about a possible problem with time contingent pacing for some. Generally some of these points could be useful enough, if the CBT/GET model (or other models that pathologise behaviour too much) didn't predominate.
     
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  17. Dolphin

    Dolphin Senior Member

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    Concluding paragraph:
     
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  18. Esther12

    Esther12 Senior Member

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    Thanks for the excerpts and comments

    Although controlling for the stigma around CFS would probably be difficult.

    In some ways, I can find papers like this frustrating because of the climate around CFS - if they're not out to make money from CBT/GET, I think they should be more condemning of the way the efficacy of those interventions has been spun!

    To me, the stigma mentioned at the start of the final paragraph makes it very difficult make claims about what it was that was "leading to a recurring cycle of symptoms." Patients stigmatised as lazy are likely to try to describe themselves in ways which make them sound like motivated go-getters... not surprising, or good reason to think that they're not really just as lazy as anyone else.

    re the boom and bust thing: I thought there was a paper showing that CFS patients did not have any particular problem here, and google found this comment:

    I thought there was also a more recent paper too, but couldn't see it. Looking for it pointed out that the paper being discussed in this thread also cited the van der Werf one.

    Has there ever been any evidence that CFS patients have any particular problem with 'boom and bust' behaviour?
     
    Last edited: Aug 10, 2014
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  19. A.B.

    A.B. Senior Member

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    Probably this has just been a fantasy all along, borne from patients reporting fluctuating energy levels.
     
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  20. WillowJ

    WillowJ Senior Member

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    My guess is that the Fukuda definition, in an apparent effort to exclude overtaining or anything else that could be entirely cured with rest and support (the "clarification of ambiguities" paper made clear they were not discussing PEM), says, "not substantially relieved by rest" and I think this is confusing to people who don't understand the illness.

    What they need to grasp really isn't all that difficult; just isn't well explained in what they've been reading: a vacation or other rest can't fix a long-term patient, but rest does reduce certain symptoms day to day, and enough rest may make a modest difference over months.
     
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