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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crashed after U.S. doc recommended exercise?

Discussion in 'Advocacy Projects' started by medfeb, Apr 8, 2016.

  1. medfeb

    medfeb Senior Member

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    Hi

    I am looking for a few U.S. patients who were given a treatment recommendation of exercise by a U.S. doctor for a diagnosis of CFS or ME and as a result of that therapy, became worse for more than just a few days.

    I know some patients were told to exercise before they received a CFS or ME diagnosis. But in this case, I am looking for patients who already had a CFS or ME diagnosis for which the doctor then recommended exercise. Especially interested if the recommendation came from a major center like Mayo Clinic or the Cleveland Clinic but not required.

    If this happened to you, please either PM me or email medimmock@gmail.com. I will do my best to reply to all emails.

    Thank you for your help.
    Mary Dimmock
     
    waiting, rosie26, Comet and 9 others like this.
  2. ahimsa

    ahimsa Sick since 1990

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    @medfeb - Mary, good luck with your search. I hope you find some patients who fit this criteria.
     
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  3. medfeb

    medfeb Senior Member

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    Thank you, ahimsa.
     
  4. lnester7

    lnester7 Seven

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    @medfeb There is an exercise group in Facebook ME, called ME/CFS exercise group.
     
    medfeb likes this.
  5. medfeb

    medfeb Senior Member

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    Thank you for the post, Inester7. Do you mean this group?
    MECFS SAFE EXERCISE PREP? Its the only group that I see for "ME/CFS exercise group" on FB
     
  6. Amaya2014

    Amaya2014 Senior Member

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    Email sent! Please let me know that it was received when you have time.
     
  7. lnester7

    lnester7 Seven

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    Yes
     
  8. medfeb

    medfeb Senior Member

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    Thank you
     
  9. Valentijn

    Valentijn The Diabolic Logic

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    I'd stay away from that one. Actually, I do stay away from that one :p It's run by a control freak who has strict rules for everyone else regarding exercise, but brags about flaunting those rules herself. Very annoying. There's also a lot of rules about who can post, and how long they have to be in the group before they post, and no one can ask any questions unless they've read every document.

    Basically there are various sets of rules depending on whether you're the leader, the inner circle, or a newbie. I'm not sure staying on long term is a viable option without divulging personal information to the leader - she insists on being added as your "friend" at some point, meaning she can see everything on your personal facebook page.
     
  10. medfeb

    medfeb Senior Member

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    Thanks, @Valentijn - that explains why there are so few members in that group
     
  11. u&iraok

    u&iraok Senior Member

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    I'd like to see what the outcome was with anyone that exercises with ME/CFS.
     
  12. Valentijn

    Valentijn The Diabolic Logic

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    Based on my limited experience, the ones who were exercising were also crashing a lot, even with whatever rules they had in place. And the one exercising and crashing the most (the administrator of the group), was hiring household help so she could exercise instead of cleaning and such.

    Some of the more scientific information was good and interesting, but I think exercise programs are almost always a futile endeavor for ME patients.
     

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