Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Cort was just video-interviewed on his personal experience with ME/CFS by Dan Moricoli

Discussion in 'Lifestyle Management' started by waiting, Aug 6, 2018.

  1. waiting

    waiting Senior Member

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    Cort was just video-interviewed on his own experience with ME/CFS by Dan Moricoli (cfsKnowledgeCenter). Check it out (8 minutes) here: https://vimeo.com/282305907


    I believe the resulting video is true to form -- very personal and honest -- as he describes when he first got sick 38 years ago & how he copes with the disease.


    Readers here are likely familiar with Cort's 14 years - and counting - of analysis on the state of ME/CFS research, and first here, and now on his Health Rising website, his provision of treatment resources and a place for those affected by the disease to communicate with one another: in the video, the tables are turned & this time he answers questions & analyzes his own experience as a fellow ME/CFS patient.
     
    AnnaDove, Sandman00747, Abha and 13 others like this.
  2. AngelM

    AngelM

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    Oklahoma City
    Cort’s interview made me realize that there are many faces of ME/CFS—and we should look honestly at all of them. Listening to Cort tell his story, which is not so different than my own, allowed me to see myself from a new perspective. Over the years I have spent too much time in denial. I have also kept my family and friends in the dark, simply because I didn’t want them to judge me as negatively as I judged myself. How could I ask anybody to understand what I couldn’t understand myself? But my denial has caused only alienation and misunderstanding between me and the people I love.

    I realize it is time to own this illness, rather than let it own me. And that means being honest with myself and others. And not to sound unsympathetic for those hardest hit by this illness, but to understand my illness, the people in my life need to see faces of CFS that aren’t looking up from an oxygen mask or from the pillow of a hospital bed. But look like the young mother across the street or the man one table over at Starbucks. Cort’s interview is perfect vehicle for educating the public about the truth of living with CFS. Because Cort looks like everybody else —and I think that “relatability” important—especially for people who stillt think of CFS as “The Yuppie Disease” or an excuse for “calling in sick.”

    As ridiculous as it sounds coming from a CFS veteran like me, it is very reassuring to know there is someone else out there who, in order to stay healthy, needs to take naps or who, even though he knows better, still pushes himself too hard. Because these are the very things I have been too ashamed to admit are part of life with CFS.

    Like Cort, I believe I have plateaued after thirty years of a roller coaster ride with this illness. And, in a strange way, there is comfort in that. I also believe that the time has come to stop fighting the truth of this illness, accept the new version of me, and begin to honestly redefine my relationship with myself and others.
     
    AnnaDove, Sandman00747, RobR and 8 others like this.
  3. Cort

    Cort Phoenix Rising Founder

    Thanks.

    It is really hard to tell the truth about this disease. Over the past year- prompted by my partner - I've begun to let my family in more and more about what it's like to have it- a scary process but one which has been helpful.

    I think acceptance is so important to one's well-being. We are here after all - this is it for us at least for now - a recalcitrant body, one which imposes all sorts of limitations and produces all sorts of issue - but this is it! Better in the end to grouse at it as little as possible, have it be as it is, and then see what;s available!

    Hopefully I will get pacing down and off the push-crash cycle at some point (lol).
     
    AnnaDove, Ema, Sushi and 6 others like this.

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