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Help Dutch professional Ballet dancer with M.E.

Discussion in 'Action Alerts and Advocacy' started by Grigor, Jan 19, 2015.

  1. Grigor

    Grigor Senior Member

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    Hello everyone,

    I wanted to share with you the campaign of the Dutch ME/CFS foundation.
    I'm sharing my story to create awareness for M.E. in The Netherlands but also world wide.
    I used to be a professional ballet dancer and since my 29th I've been suffering from ME.
    Hopefully the big contrast with being a professional ballet dancer to a handicapped ME patient will move something.
    Help me share my story by email, Facebook or other places around the world so we can help end this bleeping illness.

    Thank you very much in advance.

    You need to turn on the subtitles. If you don't know how to do it follow this link.https://support.google.com/youtube/answer/100078?hl=en


    Link on YouTube :Interview Anil van der Zee | ME/CVS Stichting:
     
  2. gregh286

    gregh286 Senior Member

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    hi,
    great interview, well done.
    good luck for future.
     
  3. Grigor

    Grigor Senior Member

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    Thank you gregh286 really hope it helps. Doubt it lol. But need to stay positive.
     
    catly likes this.
  4. gregh286

    gregh286 Senior Member

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    what have you tried in your 9 years of suffering.
     
  5. Grigor

    Grigor Senior Member

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    Lots . Sadly I'm no rooky when it comes to trying treatments supplements etc.
     
  6. gregh286

    gregh286 Senior Member

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    did you try sauna therapy, (infrared or dry)
     
  7. lansbergen

    lansbergen Senior Member

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    That will make severe patients worse.
     
    SOC, NK17 and Grigor like this.
  8. Grigor

    Grigor Senior Member

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    Sauna was terrible for me. Had to recover for a few weeks. Very much to do with Orthostatic Intolerance.
    Anyways I'm not really posting to find a cure for me personally here. Just want to share and raise awareness for Myalgic Encephalomyelitis.
    But thanks for asking. Appreciate it.
     
  9. Valentijn

    Valentijn WE ARE KINA

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    Heat tends to be pretty bad for ME patients. Heart rate rises to try to cool us down, except it doesn't work too well for whatever reason. And then we end up getting exhausted and sometimes with our heart rate staying too high for hours or days.
     
    Grigor likes this.
  10. Matthew Jones

    Matthew Jones Senior Member

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    Thank you for doing this video, I am so glad it is getting seen. I hope things get better for you as soon as possible.
     
    Little Bluestem and Grigor like this.
  11. Grigor

    Grigor Senior Member

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    Thank you Matthew Jones. Well I can't say you're welcome. Cause I do it as well for myself.
    Anyways share it. You never know who will see or read it.
     
  12. Valentijn

    Valentijn WE ARE KINA

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    Excellent interview and video, @Grigor , I'll be sharing it on Facebook :)

    Have you ever had your OI investigated or treated? When mine was untreated, I had the same daily pattern ... sitting up, and a little standing in the morning, then laying down the rest of the day.
     
  13. Grigor

    Grigor Senior Member

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    Valentine. At the moment I can't go and see any doctors. I am too weak for it.
    Other then that I have support stockings. It helps a bit.
    What treatment did you get?

    And thanks for sharing
     
  14. Valentijn

    Valentijn WE ARE KINA

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    I take Yohimbe, but have to bring it from another country. It can't be sold in the Netherlands as a supplement, and no one's gotten around to making it a prescription medicine. I split each 400mg capsule into 4 doses, and take two per day.

    Before Yohimbe I took Strattera for a while, which also worked quite well but is very expensive and not covered by Dutch insurance. I bought the 60mg capsules because they're the cheapest per mg, and split them into 10mg doses, of which I took 3 per day.

    Both act to increase norepinephrine, which has tested low for me a couple times. Strattera works as an NRI (Norepinephrine Reuptake Inhibitor). Yohimbe is a very specific antagonist of ADRA2A (and 2B and 2C), which has been found to be elevated in ME patients in a couple small studies, and ADRA2A inhibits the release of norephinehprine. Neither Strattera nor Yohimbe are nice if the dose is too high, or if taken too late in the afternoon.
     
  15. Grigor

    Grigor Senior Member

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    @Valentijn, interesting. Will have a look. I'm taking Ginkgo. Works a bit but not enough.

    Also I have too low norepinephrine so who knows.
     
    Valentijn likes this.
  16. concepcion

    concepcion Senior Member

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    Excellent interview.
     
    Grigor likes this.
  17. Aurator

    Aurator Senior Member

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    I feel your loss keenly, Grigor.
    A family member is a very keen amateur ballet dancer. I will get her to publicize your story at the large dance school she attends. Some may know your story already, but some may not.
     
  18. gregh286

    gregh286 Senior Member

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    best wishes. just proves how we are all so different in many ways.
     
    Grigor likes this.
  19. Grigor

    Grigor Senior Member

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    @Aurator, thank you very much. But if she is not in the Netherlands she will not know my story yet. Hopefully they will after all this though
     
    Valentijn likes this.
  20. Aurator

    Aurator Senior Member

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    She's in a major city in the north west of England. I've already contacted her about this. She will spread your story. Best of luck!
     
    Valentijn likes this.

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