August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Susanne Vernon: The Next Frontier

Discussion in 'Active Clinical Studies' started by Never Give Up, Jun 10, 2015.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Susanne Vernon has made an more detailed announcement of her next step. It's intriguing.

    [​IMG]Suzanne Vernon on Jun 10
    Imagine a place where you could go to ask questions, share stories and find answers about your disease. Imagine that being in this place is as easy as a tap on a touchscreen and wearing a cool looking accessory with built-in advanced electronic technologies.

    As I begin my next research chapter I’ve been reflecting on the past 25 years as a scientist. I generated a lot of data. Experimental results were recorded and stored in notebooks, then floppy disks, then CDs, thumb drives, Dropbox; from pencil to paper to bytes in the cloud.

    The evolution of data storage technology should have made data more useable and accessible. Surely all this data is a treasure trove of solutions to the maladies I have spent my career researching! Yet after 25 years of data generation, I’ve not a byte to show for it. Digitization has made data more useable but not necessarily more accessible.

    This is crazy right? Your tax dollars and donations have paid for this data. How is it possible that data and the answers it holds remains vaulted, siloed, sequestered? It is just the way it is that’s why. Not for long.

    Each of us is a 24/7 data-generating machine. Wearable accessories and devices count our steps, monitor our heart rate, track our water intake, measure our blood oxygen. Our smart phones keep us connected all the while tracking our symptoms and daily function. We use apps to count calories, guide meditation, get healthy. We have direct-to-consumer tests that tell us about our ancestry, our genotype, our microbiome, our metabolism. Now each and every one of us has the opportunity to be a citizen scientist and discover.

    Now imagine thousands of us citizen scientists bringing our data to one place … sharing our observations, asking questions, generating hypotheses, discovering, getting answers. Imagine that our ME community could figure out what causes post-exertion crash. Imagine that with easy tracking and monitoring the ME crowd gets to the bottom of unrelenting insomnia.

    Imagine how fun to be part of something that changes the way questions are answered, evidence is generated, research is done.

    We will not have to use imagination much longer.

    Suzanne D. Vernon, PhD (Aka, Rogue)

    SDSue, ahmo, Scarecrow and 2 others like this.
  2. Sasha

    Sasha Fine, thank you

    I'm not sure I approve of this new trend of teasing us with hints! I can't cope with deferred gratification these days. o_O
    SDSue, ahmo, Never Give Up and 2 others like this.

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