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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New, short POTS video from big name docs

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Sushi, Oct 16, 2016.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
  2. hellytheelephant

    hellytheelephant Senior Member

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    S W England
    Thank you @Sushi:bouquet: - what an absolutely fab little film. I am a sufferer and I feel as if I actually understand it now!
     
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  3. taniaaust1

    taniaaust1

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    Sth Australia
    that's great, Im going to ask my support worker to watch that.
     
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  4. Forbin

    Forbin Senior Member

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    POTS was a major feature of my illness for the first 10 years, or so, of ME. I could only stand for a minute or two before I started get all sorts of "signals" from my body, including tachycardia, that essentially conveyed the message, "If you don't sit down, I will put you down."

    According to the video, this "syndrome" didn't even start to get recognized until 1993. It still amazes me that I could describe this in such detail to doctors in the 1980's and they still insisted that nothing was wrong because my blood tests and EKG's were OK. They defaulted to "you're out of shape," even though I had been in excellent shape 6 weeks earlier. It would have made life a lot easier if they could have recognized it and given it a name, even if there was no treatment.
     
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  5. mango

    mango Senior Member

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    Very informative and helpful, I'll definitely be sharing this one :)
     
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  6. Alisha12

    Alisha12

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    Yes..in the past they were researching about neurocirculatory asthenia in 1940s which resembles to POTS.At least they should have recognised it as similar entity. I think doctors have completely forgot about it which was quite in thing during first world war.
     
  7. Forbin

    Forbin Senior Member

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    It probably goes without saying [but I thought I should say it anyway] that the sensation that I must sit down was more bearable if I kept in motion by walking. I'm sure now that this was because the use of my leg muscles counter-acted the blood pooling in my lower extremities to some degree. Of course, due to the reduced stamina of ME, I couldn't walk for very long, either. All I know is that standing still was much worse than being in motion.

    [And, no, exercise neither increased my stamina nor my ability to stand motionless for more than a couple of minutes without feeling awful.]
     
    Last edited: Oct 18, 2016
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