Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Graded Exercise Therapy. Oh please!!

Discussion in 'General ME/CFS Discussion' started by SmokinJoeFraz93, Sep 15, 2017.

  1. SmokinJoeFraz93

    SmokinJoeFraz93

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    I can’t speak for everyone, but I can I speak for myself, and I am totally exercise intolerant. I went to my doctor and explained about how my cognitive fatigue is just getting so bad, to the point where I am unable to do the little things because it’s like my mind feels it’s too much.

    So I end up in bed or in the house all day due to debilitating mental and physical fatigue and tiredness. A doctor then asked would I be interested in GET. I laughed and replied; “If someone without arms would be interested in playing tennis, then of course I’ll attend GET”.

    What an absolute joke.
     
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  2. shannah

    shannah Senior Member

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    Clever reply - good for you!

    I'm still so dumbfounded by what some suggest that I can seldom think of a reply quick enough.
     
  3. SmokinJoeFraz93

    SmokinJoeFraz93

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    Thanks Shannah. I suppose you’ve been offered GET? It’s short for GET lost!
     
  4. IThinkImTurningJapanese

    IThinkImTurningJapanese Senior Member

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    Too bad it's not funny. :D

    Sometimes these GET proponents are talking to former athletes. I would love the opportunity to show them what exercise really is. :rofl:
     
  5. Woolie

    Woolie Senior Member

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    Its happened to me twice, a doctor suggesting GET. I don't know what to say to that. The first time I said nothing, and the second time I got a bit angry, and I think that backfired a bit. Maybe we need to start collecting ideas for responses.

    There's so much doublespeak by doctors. The 'I believe you're genuinely ill, its just that some patients find GET helpful'. This makes me angry because they are sidestepping the assumptions of psychological dysfunction that are at the core of GET. Maybe we need to flush out these assumptions, get them into the open.

    What about:
    "I understand the principles of reconditioning, I've used them successfully in the past. But I've found these principles don't work now I have MECFS. If I go beyond a certain threshold, my symptoms get worse. So I can't see how GET would be helpful - unless perhaps you think I can no longer rely on my own judgement. Do you think that?"

    I expect the response will be some gobbledegook that implies the doc thinks your judgment HAS become clouded. But then you know where you stand, eh?

    Any other suggestions?
     
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  6. Luther Blissett

    Luther Blissett Senior Member

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    So sorry you had to go through that @SmokinJoeFraz93 . Hope you can find some relief soon. :hug:

    It would be pretty good if people could get something like @Woolie 's suggestion printed or written on business cards.

    Maybe if people make some small cards saying what they would like to say, they could carry them in a wallet or purse. It could help in more situations than just the doctors.
     
  7. Alvin2

    Alvin2 If humans were rational...

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    Typically i would suggest getting another doctor

    Are there studies showing GET makes patients worse? Most of us know this from personal experience but empirical data would be helpful when dealing with lies.
     
  8. SmokinJoeFraz93

    SmokinJoeFraz93

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    Guys, I am overwhelmed with your responses! I no longer feel like ‘it’s all in my head’. I’m just sick of these cost effective treatment plans.

    “Make sure your diet is good. Eat your 5 a day like a good little boy and get some exercise”. Uh... Hello?!! I’m in bed unable to the smallest of things. What makes you think I’m gonna go out walking? ‍♂️
     
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  9. SmokinJoeFraz93

    SmokinJoeFraz93

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    What did Woolie do?
     
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  10. Woolie

    Woolie Senior Member

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    Nothing of any consequence I'm afraid. Just made a stab at a 'response' when doctors suggest GET:
    No as good as yours, really. It was really supposed to be a start, so others could chime in with something better.
     
  11. Woolie

    Woolie Senior Member

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  12. Luther Blissett

    Luther Blissett Senior Member

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    I thought it was almost a stroke of genius. Would be interesting to to discuss further when things die down here.
     
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  13. user9876

    user9876 Senior Member

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    To simply say that some patient find it makes them worse and more disabled for a long period. Then ask if the doctor knows how to determine who benefits and who gets worse.
     
  14. Woolie

    Woolie Senior Member

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    Ooooh, I like that!

    @Alvin2 asked the question about evidence for GET making patients worse. I know there's quite a bit now. There was Tom Kindlon's paper reporting on surveys of harms here, and the more recent report by Geraghty here.
     
  15. alex3619

    alex3619 Senior Member

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  16. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    When I was seeing a new GP (who didn't know much at all about ME/CFS) he said I should exercise to treat my muscle weakness. I didn't prepare my response. I just said, "It doesn't work that way." I can't recall if I said anything further, but he accepted my response.

    Prior to switching to this new GP, I had one stubborn SOB who rarely listened. It so happens that about ten years ago I WAS able to do some exercise. At that time I had made a laminated workout routine for swimming. (I took a small piece of paper, wrote my routine on it, then covered it in clear tape to make it waterproof.) I found it AND my half-used swim pass and showed them to my doctor. I made it clear to that doctor that there had been a time when I was able to exercise while sick, but that my health had declined so that this was no longer possible. Why would I have a half-used prepaid swim pass? I used to be a competitive swimmer so my workout routine was something that I had fashioned for myself.

    I carry a binder to all my doctor appointments; the swimming routine and pass are in a pocket where I can pull them out quickly if necessary.
     
    Last edited: Sep 16, 2017
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  17. user9876

    user9876 Senior Member

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    I did find recently I could feel a GP going there so I got in early about exertion intolerance being a main symptom as defined by the IoM and I think that almost closed down the discussion and certainly the notion of pushing through activity.

    Some times the way to avoid things is to set the agenda for a conversation early rather than let the doctor control it. As a parent I've always thought that doctors need to be carefully managed.
     
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  18. Alvin2

    Alvin2 If humans were rational...

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    I agree, having been to more doctors then i can recall before i got the diagnosis i found left to their own devices they decide something then run with it no matter how irrational.
     
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  19. SmokinJoeFraz93

    SmokinJoeFraz93

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    Thank you.
     
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