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(Incl. 3 LP cases) Worst Cases Reported to NAFKAM Interntnl Registry of Exceptional Disease Courses

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 27, 2014.

  1. Dolphin

    Dolphin Senior Member

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    -------------------

    Full text (from: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3833488/)

     
  2. Snow Leopard

    Snow Leopard Senior Member

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  3. A.B.

    A.B. Senior Member

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    Isn't that what GET patients are told?
     
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  4. Snow Leopard

    Snow Leopard Senior Member

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    It really depends on how it is delivered. Some forms are more radical than others. Some are more like pacing (in practise).
     
  5. Wildcat

    Wildcat Senior Member

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    @ Snow Leopard:


    GET is GRADED Exersise which is based on the deconditioning model of ME. There are no different 'forms' of GET.

    But there are continuing smoke and mirror tactics which have attempted to disguse GET; and smoke and mirror tactics that wrongly portray pacing as a form of Graded Exersise lite. The tricky ways of adhering to the deconditioning model that we have seen in the UK (and we have so much experience) are endless.
     
  6. alex3619

    alex3619 Senior Member

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    @Wildcat I am confused. Does that mean they use a bulldozer to grade patients down to dust? :confused: ;) 'Coz thats what it seems like sometimes.

    Sadly even doctors who don't use formal GET recommend inappropriate exercise, to the lasting detriment of untold numbers of patients .. untold because there is no formal register for harm from GET. Maybe we should start one?

    In theory some forms of GET are about staying within limits, but the problem is that GET presumes patients will improve, not reach a ceiling or fall through the floor. So I think many doctors might push too hard in their advice.
     
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  7. Wildcat

    Wildcat Senior Member

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    Staying within limits is pacing. What I'm saying is that GET is incremental increase in exersise whether or not one is able. Thats what GET is. The idea of different forms of GET has come about due to the trickiness of certain medics trying to fool us with the idea that our limits are important to them, whilst still adhering to the 'ideology' that increasing exersise or activity will improve us.

    Hope that makes sense.
     
  8. Esther12

    Esther12 Senior Member

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    So even by the standards of CAM, LP is dodgy?
     
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  9. Snow Leopard

    Snow Leopard Senior Member

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    All I'm saying is that there are publications calling their "techniques" GET, which utilise pacing aspects. Such as those by Karen E Wallman.

    I agree that therapies that explicitly ignore limits are harmful.
     
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  10. Dolphin

    Dolphin Senior Member

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    That's one way of looking at it.

    For any "placebo" CAM, which I think are a lot/most of them, they may not help but they may not make you worse directly* (except in terms of loss of time or money), while LP for ME certainly has the potential to make people worse.

    *they may make you worse indirectly if there were other better treatments you could have done instead.
     
  11. Wildcat

    Wildcat Senior Member

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    I get what you were saying, now, Snow Leopard.

    We have noticed a blurring of the boundaries here in Britian. Its confusing for some patients at our UK clinics, where, many of the clinics are teaching what they call pacing, but it has more in common with GET - and the patients then reject it and say it doesn't help, its too difficult, and they say they don't rate pacing!

    We have to keep explaining that what they have been taught is not actually pacing!
     
    Last edited: Jan 28, 2014
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  12. Wildcat

    Wildcat Senior Member

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    Thanks for that find, Dolphin. Its very important indeed.
     
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