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Prognosis of ME/CFS – by David S. Bell, MD

Discussion in 'General ME/CFS Discussion' started by Tom Kindlon, Dec 26, 2017.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    https://www.omf.ngo/2016/08/01/prognosis-of-mecfs/



     
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  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    This is consistent even with findings made in psychopsychiatry. The earlier study by Bell on "recovered" patients showed the same thing. Questionnaires as to physical function in ME and CFS are not demonstrated to be reliable and match actual physical function. They should never be accepted as primary outcome measures in any clinical trial on ME, whether that be for psychiatric intervention or biomedical intervention.

    There is huge pressure for us to appear normal. Its everywhere. So sometimes we understate our problems a lot more than we should. I wrote about this in my blog Masks. http://forums.phoenixrising.me/index.php?entries/masks.680/

    While it does not help us in advocacy to appear normal, its a way for many patients to minimise conflict and enhance coping. The big issue though is that in order to function like this I suspect over time we internalise this view. There is no substitute for actual physical measures. There is also no substitute for a proper longitudinal study on ME and CFS.
     
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  3. pibee

    pibee Senior Member

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    this is so sad, but true ::(
     
  4. Peter Trewhitt

    Peter Trewhitt

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    It is the distinction between being ill or unwell and being disabled?

    When does a long term condition stop being an episode of ill health and become normality?

    This can have an impact on how we respond to our condition, if we view it as an illness we are looking for a cure which can both be positive and negative, but also we can put off things until we get better, put life on hold until we are better, if we view it as a disability we may not look as hard for treatments, but we may be more accepting of finding ways to cope, just getting on with life. For example someone who is 'ill' may not want to waste money on getting an electric wheel chair as they are expecting to get better at some point where as someone who is 'disabled' may see getting out and about by any means as worth spending the money.

    However this is further confused by how well we feel at any point in time. Some pople with ME feel ill all the time, others only feel ill when in relapse or when experiencing post exertional malaise. For example currently if I lie down for at least twenty two hours a day and pace the time I do have up and avoid any exertion I can feel OK (no headaches, no nausea, no digestive problems, low levels of pain), but this is still disabling as it severely limits activities of daily living. Unfortunately life gets in the way and I may be forced to do too much because there is no one else to to essential things like ordering food or getting a shower, and then I start to feel ill.

    How we view our own condition has implication for how well we cope, focusing on what we are unable to do can be very depressing, where as celebrating the little achievements, getting a shower this week and having clean sheets becomes a great pleasure them makes us feel good.

    But also we can forget how our premorbid functioning actually felt like. I am only aware of how limited my current normal brain function is on those very rare occasions when my brain function approaches premorbid levels.

    It maybe that different people cope best by viewing their condition in different ways at different times.

    This research has the clear implications for the use of subjective self rating scales when measuring treatment efficacy in ME, namely that they should never be used without associated objective measures. However it also raises the question of how we view our condition and how we want others to view it.

    Wheel chair users, the deaf, the blind, etc have decades of disability rights campaigning behind them, a political awareness of equality issues and a developed rights vocabulary. Though the abuse by PACE and PACE appologists has served as a positive catalyst in politicising ME and terms like post exertional malaise begin to give us a vocabluary to talk about our condition in more meaningful ways than just saying we feel ill, we still have a long way to go.

    (Sorry this is such a rambling comment, I am still trying to pull my thoughts together into a meaningful thread.)
     
    Last edited: Dec 28, 2017
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