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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Project #undauerME #art2cureME #millionsmissing

Discussion in 'Advocacy Projects' started by Grigor, Apr 15, 2017.

  1. Grigor

    Grigor Senior Member

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    Hi everyone,

    I'm very proud & excited to announce a little/big project I've started. I've asked over 60 of my professional artists friends to help raise awareness for Myalgic Encephalomyelitis. Some of them are (former) (ballet) dancers, choreographers, (opera) singers, (concert) pianists, architects, cartoonists, writers, photographers, filmmakers, DJ’s etc.
    From the 1st of May, which is the start of #MEawarenessmonth, they will be posting something they've created online. I'm really overwhelmed by the positive response I've gotten. A real humbling experience. Plus I don't think this has ever happened in the history of M.E. Obviously I have no idea how this will turn out to be but I do think we will see some very beautiful and touching work.
    I'm now inviting everyone else to join in from the 1st of May. The more the merrier. Please read my blog for more information. On mobile view the language switcher is totally at the bottom of the page.
    Will you join and help?? Personally I'm too ill to create something new so I'll be posting something old :) Should do the trick. Hope to see you on the 1st of May.

    #undauerME#art2cureME#millionsmissing

    Start reading, start liking, start sharing!!

    Groetjes,

    Anil ❤️

    English: http://anilvanderzee.com/undauer-eng/

    Nederlands: http://anilvanderzee.com/undauer-nl/

    Deutsch: http://anilvanderzee.com/undauer-de/

    Français: http://anilvanderzee.com/undauer-fr/

    Español: http://anilvanderzee.com/undauer-es/
     
    MeSci, Helen, mango and 20 others like this.
  2. JaimeS

    JaimeS Senior Member

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    Great work Anil! Really thorough.
     
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  3. Grigor

    Grigor Senior Member

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    Thank you Jaime, I tried to keep it as easy to understand as possible. Not to scare anyone away. Sadly it became very long . But people might understand "it" better. I hope.
     
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  4. Ben H

    Ben H OMF Correspondent

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    Great stuff my friend!


    B
     
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  5. *GG*

    *GG* Senior Member

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    Yes, thanks, but can you break that up to make it easier to read online :)

    GG
     
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  6. Grigor

    Grigor Senior Member

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    Yes, I will think about it. Not right now though. First need a while to recover
     
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  7. Grigor

    Grigor Senior Member

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    You already read it like 20 years ago . Will you be playing some guitar in May?
     
  8. Grigor

    Grigor Senior Member

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    Helen, Joh and BurnA like this.
  9. Marc_NL

    Marc_NL Senior Member

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    Dolphin, AndyPR, Helen and 3 others like this.
  10. Grigor

    Grigor Senior Member

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  11. Marc_NL

    Marc_NL Senior Member

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    Nothing to be modest about :)
    Must have been an enormous job :thumbsup:

    For people that didn't read it yet, the "scientists" promoting CBT/GET won't be comfortable reading this ;)
     
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  12. Grigor

    Grigor Senior Member

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    "As a dancer I have been surprised by the treatments I’ve received for my disease Myalgic Encephalomyelitis. I want to share my opinion from a dancer’s perspective. What do other professional ballet dancers think about the treatments and the current care that’s being offered to ME patients??"

    http://anilvanderzee.com/dancers-cbtget-realness/
     
    Dolphin, AndyPR, slysaint and 7 others like this.
  13. slysaint

    slysaint Senior Member

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    Excellent piece; says it all :thumbsup: Have sent link to a number of people and encourage others to do the same.

    Comment from Janet Dafoe:
    Janet Dafoe2 days ago
    This is just so good, Anil! I read it to Ron. This is what he said right after his exclamations of upset over your story and the whole PEM/GET ridiculousness and tragedy. "These "doctors" that continue to believe in CBT/GET for ME/CFS call themselves scientists. However, the job of a scientist is to make observations, propose a hypothesis, and then attempt to disprove it. In the case of GET, it’s rather easy to disprove it. Failure to look at the data and continuing to hang on the their original hypothesis disqualifies them from being called scientists."
     
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  14. Grigor

    Grigor Senior Member

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    @slysaint, thank you so much. If you can please comment on the blog. The BPS folks are reading it as well :)
     
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  15. AndyPR

    AndyPR Senior Member

    Great article. A little bit long for my concentration levels but that will be an individual thing so it's not a criticism - as David Tuller has shown, sometimes a lot of words are needed. I've also commented as well. :)
     
    Dolphin likes this.
  16. Grigor

    Grigor Senior Member

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    Hey Andy,

    I totally agree. It became way too long. But I wasn't sure where to shorten it. I saw your comment. Thanks for that. Hope the BPSers will get to read it. I will respond to it in a bit. :thumbsup:
     
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  17. Grigor

    Grigor Senior Member

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    As long as I have been suffering from my illness I’ve read and have also had some people tell me that the cause and course of my disease rests in some way in my own hands. I have always found that remark quite hurtful but most of all, unfounded. As there is still a lot which remains unclear about Myalgic Encephalomyelitis (ME) which could be the reason why people might come to such a conclusion, whilst there are those who go even as far as claiming the same thing about a horrible disease like cancer. But is that really true? Are we patients really in control? What does the literature say?

    http://anilvanderzee.com/can-positivity-cure-any-disease/
     
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