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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Washington Post: With his son terribly ill, a top scientist takes on CFS

Discussion in 'General ME/CFS News' started by Simon, Oct 5, 2015.

  1. Simon

    Simon

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    With his son terribly ill, a top scientist takes on chronic fatigue syndrome - The Washington Post
    by Miriam Tucker

    Terrific article about Whitney Dafoe, his father the Stanford scientist Ron Davis and the lack of research funding.
    The basic scientific approach:

     
    Last edited: Oct 5, 2015
  2. sarah darwins

    sarah darwins I told you I was ill

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    Great stuff, in an influential paper, too. Thanks, Simon.

    All - please click on the link to the page, and get your friends to do the same, see if we can get it onto the 'most read' list (which brings a lot more attention to the article).

    If anyone wants to comment on the article on the WP site, it looks like you can sign in with an Amazon account.
     
    rosieness, PatJ, ahimsa and 6 others like this.
  3. Sasha

    Sasha Fine, thank you

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    Excellent article.

    It's possible to post a comment (and I just did). Please join me! Here's a little article about how to do it if you haven't before.
     
    rosieness, ahimsa, beaker and 6 others like this.
  4. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Simon and will definitely read the full article later.
     
    WillowJ, Simon and Sasha like this.
  5. Helen

    Helen Senior Member

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    Thanks @Simon. Too sad to read, but hopefully something good will come out of this. I do hope it will do in time to save him and others.

    " “He has some of the classic symptoms that we talk about with ME/CFS, but in him they’re amplified 10 or 100 times,” adds Kogelnik, president and founder of the Open Medicine Institute, the research/clinical institution affiliated with the fundraising foundation.

    Whitney has extremely low levels of several small molecules associated with energy metabolism. He also has three mutations in a gene that codes for an enzyme that helps convert folate and vitamin B12 to their active forms, a process necessary for both metabolic and immune function.

    Such mutations are present in about 5 to 10 percent of the general population, but Kogelnik has been finding them at much higher rates among his ME/CFS patients. "
     
    duncan likes this.
  6. dannybex

    dannybex Senior Member

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    It is a great article, great exposure for our illness, but I wish they would switch the placement of the first photo with the 2nd, which shows his severe condition.

    Most people these days only glance at a headline and picture quickly before deciding to read on -- and in this case, if they do so -- they'll see the headline, but then see a happy, smiling young man, and perhaps not read any further.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    Just read the article and even though I knew the situation and history, it is still very incredibly sad. Agree with @dannybex that the pictures should have been in reverse order or at least side by side.
     
    beaker and dannybex like this.
  8. alex3619

    alex3619 Senior Member

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    I just added the above comment.
     
  9. Sasha

    Sasha Fine, thank you

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    Some very good comments on that article. Very good thread on there.
     
    Bob likes this.
  10. Simon

    Simon

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    Maybe it even peaked at number one...
    upload_2015-10-6_9-47-54.png

    All in all, this has been excellent.
     
  11. adreno

    adreno PR activist

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    Excellent article, and very much to the credit of @viggster, I believe.
     
    Kati and sarah darwins like this.
  12. Sasha

    Sasha Fine, thank you

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    Yes, it has.
     
    mango, sarah darwins and Simon like this.
  13. sarah darwins

    sarah darwins I told you I was ill

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  14. snowathlete

    snowathlete

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    Great to have this exposure!
    Dr Davis and his team have all the talent and motivation needed to make serious headway, and they have enough money to have started their work too. I really hope others donate to the cause (see my signature below) and the NIH finally get behind them.
     
    Gingergrrl, Sushi, Simon and 2 others like this.
  15. ballard

    ballard Senior Member

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    For the people who call ME/CFS an invisible illness, I think they need to take a good look at the 250,000 ( at least) Americans who live in darkened rooms, completely unable to help themselves. They should also take a look at the people in wheelchairs or the homeless people with ME/CFS who can’t afford a place to live because they are unable to work. Many of us can pass as healthy, but for some, it’s perfectly obvious, to anyone who cares to look, that they’re really sick.

    Invisible.png
     
    dannybex, Debbie23, Tammy and 15 others like this.
  16. Kati

    Kati Patient in training

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    Tweeted this image with text:

    Hidden in plain sight. Millions of us with #mecfs agencies and gov looking the other way @NIHDirector@NIH#BIOETHXpic.twitter.com/l3KUdNbQUO

    Feel free to retweet, copy and paste, etc...
     
  17. ballard

    ballard Senior Member

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    Hey, thanks, Kati!
     
    Kati likes this.
  18. Gingergrrl

    Gingergrrl Senior Member

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    @ballard did you draw that cartoon/sketch? Sorry if I missed where it came from? It is incredible!
     
  19. ballard

    ballard Senior Member

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    Yes. I have had CFS for 24 years. And, thank you. If you wish to use the graphic anywhere else, please feel free to do so.
     
    Ritto, ukxmrv, mango and 4 others like this.
  20. Kati

    Kati Patient in training

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    @ballard I had no idea it was yours. Well done, it's awesome!!!

    i posted it because there was a signature on the image, and thought it was worthy of sharing. I hope you didn't mind.

    And by all means, if you have more of these artwork with powerful message (even those wiht smaller messages) please share them and I will share them on social media and other will share them too. Often times illustrations mean a thousand words.

    Please let me know if you want further recognition in tweets, etc.
     
    Last edited: Oct 10, 2015
    Effi, Bob and beaker like this.

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