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Worse Than the Disease by David Tuller

Discussion in 'General ME/CFS News' started by Denise, Oct 27, 2016.

  1. Denise

    Denise Senior Member

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    Apologies if this new article by David Tuller has been posted already

    "Worse Than the Disease
    A popular therapy for chronic fatigue syndrome made many patients worse. Adding insult to injury, research supporting it is unraveling.
    10.27.2016 / By David Tuller

    After living in Oklahoma for 40 years, Nita and Doug Thatcher retired in 2009 to the Rust Belt city of Lorain, Ohio, a Cleveland suburb that hugs Lake Erie. When Nita needed to find a new primary care doctor, a friend recommended someone from the Cleveland Clinic. Nita knew the institution’s reputation for cutting-edge research and superior medical services. But as a longtime patient grappling with chronic fatigue syndrome, a debilitating disorder that scientists still don’t fully understand, she was wary when she learned that the clinic was promoting a common but potentially dangerous treatment for the illness: a steady increase in activity known as graded exercise therapy. ...."
     
    Izola, Wildcat, Dolphin and 37 others like this.
  2. AndyPR

    AndyPR RIP PR :'(

    Lol, nope, you just beat me to it :)
     
    Yogi, Jennifer J, picante and 3 others like this.
  3. worldbackwards

    worldbackwards A unique snowflake

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    Earth
    https://en.wikipedia.org/wiki/Undark

    MIT? Bunch of quacks if you ask me... :)
     
    Dolphin, Hutan, Sean and 3 others like this.
  4. Sidereal

    Sidereal Senior Member

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    Brilliant. :lol:
     
    Izola, Dolphin, Solstice and 11 others like this.
  5. slysaint

    slysaint Senior Member

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    @charles shepherd “And if the evidence is faulty, then how can you make guidelines based on faulty evidence?”
    A good question for NICE.
     
    Izola, Dolphin, Solstice and 14 others like this.
  6. dancer

    dancer Senior Member

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    Midwest, USA
    This article is as much a tour de force as the Virology articles. Wow! And the patient who was profiled was so courageous to share her experiences. I hope many many people read this.

    I ached as I read about the attempts at GET which set her back - so similar to my experience. When I was diagnosed I went to the CDC website to read up on it, and since CBT was supposed to be a "treatment", I dragged myself to a psychologist and psychiatrist who listened to my frustration with the way illness had affected my life, but had nothing else to offer since they both said there was clearly something of physical origin that needed treatment.

    I also tried upping my exercise (I'd been very active before the EBV infection that started it all - and after all, if major medical organizations were recommending it, it must be the answer, right?) and lost more and more ground. After becoming mostly bedbound for months, all doctors had to offer was shrugs.

    Thank you again and again for bearing witness, David Tuller!
     
    Bidding lady, Izola, Dolphin and 15 others like this.
  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    Let's hope it gets lots of traffic.
     
  8. Kati

    Kati Patient in training

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    Share widely... let's cause the traffic :D
     
  9. AndyPR

    AndyPR RIP PR :'(

    Also, if you are sharing on social media, if you share from the article itself, rather than pasting the link somewhere, the people hosting the article will see the level of interest far easier.
     
  10. Kati

    Kati Patient in training

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    From twitter:



    Please leave comment to his article!
     
    Jennifer J, leela, Sean and 5 others like this.
  11. Esther12

    Esther12

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    Is this finally something David Tuller will have gotten paid for?!

    Undark is a respected and influential site, so great to have him writing there. This is well worth promoting and might be seen as a more credible source than his virology blogs (this shouldn't matter, but sadly does).
     
    Dolphin, Jennifer J, L'engle and 6 others like this.
  12. Yogi

    Yogi Senior Member

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    http://www.wbur.org/commonhealth/2016/10/27/chronic-fatigue-misguided-therapy-undark

    http://www.wbur.org/commonhealth/about



    If someone is going to comment as not able to do so right now. Can you mention that they change title as "fatigue syndrome" F48.0 is mental and not same as CFS.
     
    Last edited: Oct 28, 2016
    Jennifer J and AndyPR like this.
  13. Yogi

    Yogi Senior Member

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    Charles M. BlowVerified account
    @CharlesMBlow
    NYT columnist. Author of #FireShutUpInMyBones Bookings: http://wmespeakers.com/SpeakerDetail.aspx?id=13062924…Instagram https://www.instagram.com/charlesmblow/Facebook https://www.facebook.com/CharlesMBlow

    Brooklyn
    topics.nytimes.com/top/opinion/ed…
    Joined February 2009
     
    Jennifer J, Kati, Sidereal and 3 others like this.
  14. Kati

    Kati Patient in training

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    Just about now from David Tuller:



    Comment on his article.
     
    AndyPR, Snowdrop, Dolphin and 4 others like this.
  15. Barry53

    Barry53 Senior Member

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    What an inappropriate acronym that is.
     
    Mel9, Dolphin and Jennifer J like this.
  16. Kati

    Kati Patient in training

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    On twitter today:



    And this:




    Sorry if I repeat myself but David want us to comment on his article. You can write about your own expericence supporting the one of Nita. Or thank David.
     
    Valentijn, Esther12, Hutan and 2 others like this.
  17. slysaint

    slysaint Senior Member

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    Be good if someone could mention there are two stop GET petitions

    Help stop ME trials using GET :fire: UK click here, Global click here (UK please sign both)
     
    Comet likes this.
  18. Tom Kindlon

    Tom Kindlon Senior Member

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    mango and Valentijn like this.
  19. Tom Kindlon

    Tom Kindlon Senior Member

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    mango likes this.
  20. Tom Kindlon

    Tom Kindlon Senior Member

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    mango likes this.

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