The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Canadian Advocacy Opportunity

Discussion in 'Advocacy Projects' started by Old Bones, Oct 2, 2016.

  1. Old Bones

    Old Bones Senior Member

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    I've just become aware of a newly published book about ME/CFS. It's getting rave reviews. Even more exciting -- the author is a Canadian, from my own province of Alberta.

    The book is: "Lighting Up a Hidden World, CFS and ME" by Valerie Free. Here's the website:

    http://www.valeriefree.org/

    And here's one of the reviews I particularly liked:

    "As we read about one thriving creative life after another, curtailed and shut down, one can only imagine what a comfort it will be to sufferers who have been discounted and ignored for years, to see their experience reflected over and over again in these pages. And it’s absolutely impossible not to feel horror and outrage at the inequities in funding for ME/CFS, with budgets that are miniscule compared to illnesses with far fewer sufferers. These personal accounts give visceral impact to the cruelty of this illness, which won’t allow its sufferers to push their limits to try to live their lives, without punishing them with debilitating crashes. For those who believe, as did Matthew Fairman that 'One only had to pull oneself together and rise above the obstacle,' the harsh reality is entirely counter-intuitive and must be devastating. It’s certainly devastating to read about it."

    ~Rhonda Hayter, Editor (U.S.)"


    My intent is to revisit my list of media contacts and provide, via email, a link to the Press Release, and also the website. Perhaps other Canadians would consider doing something similar, particularly including your local news media. Of course, there's no reason to limit spreading the word just within Canada.

    Here's a link to the the Press Release:

    http://www.valeriefree.org/press--media.html
     
  2. shannah

    shannah Senior Member

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    An interesting comment from Ryan Prior:

    "Author Valerie Free was a huge inspiration for making Forgotten Plague. Without her, it's safe to say, the film would not exist. Her book, Lighting Up a Hidden World, is coming out this month. It will be great! We've often imagined a co-marketing campaign in which people hand out Forgotten Plague DVDs and copies of this book together. As a package, the written word complements the visuals in the film in a great, cohesive way.

    As renowned author, Toni Bernhard, has said, 'I expect this book to have a worldwide impact'."

    Ryan Prior, Forgotten Plague Documentary - June 17, 2016
     
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  3. shannah

    shannah Senior Member

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    Interesting - has anyone read it yet?

    Lots of reviews on it. Here's another one from Dr. Bell. The bolding is mine. I find it a fitting description for several years that were particularly tortuous personally.


    “Valerie Free has managed the nearly impossible. She has brought together descriptions and patient stories that convey what the world has refused to believe – that ME/CFS is not only real, but it is a nightmare that rivals hell itself and continues to be dismissed as a trivial neurosis by educated physicians who should have moved beyond this twenty years ago.”

    ~David Bell MD, FAAP (U.S.)
    Author of: A Doctor’s Guide to Chronic Fatigue Syndrome: Understanding, Treating and Living with CFIDS

    http://www.valeriefree.org/reviews.html
     
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  4. Old Bones

    Old Bones Senior Member

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    I've started promoting the book -- mostly publications (newspapers and magazines) that do book reviews. My emails are short (intentionally), and each is personalized somewhat in content depending on the recipient. So far, I've sent them to: Chatelaine and Canadian Living (large female audiences), the Globe and Mail (Newsroom and Content Editor), National Post (Books Editor and Health Reporter), Alive magazine (large, free circulation) and Apple Magazine (Alberta's health care system magazine). Here's the longest of the emails sent:

    To Apple Magazine:

    "Book Review recommendation - 'Lighting Up a Hidden World, CFS and ME' (Alberta author)

    CFS and ME are complex illnesses that affect hundreds of thousands of Canadians. Yet, they receive virtually no media coverage.

    Canadian CFS and ME patients have been ignored by successive federal and provincial governments, and the health care system, for decades. In Alberta, a comprehensive Toward Optimized Practice document titled "IDENTIFICATION AND SYMPTOM MANAGEMENT OF MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME Clinical Practice Guideline" was published in January 2016. ( http://www.topalbertadoctors.org/download/1929/MECFS CPG.pdf?_20160627010412 ) Unfortunately, based on my experience with Alberta physicians this year, none were aware of the document until I brought it to their attention.

    Please consider reviewing a newly-published book: "Lighting Up a Hidden World, CFS and ME" written by an Alberta patient. The link to the author's website is: http://www.valeriefree.org/

    The recent Press Release can be found at: http://www.valeriefree.org/press--media.html

    Of course, anything you can do to ensure Alberta physicians (GP's and specialists) are aware of the TOP document would also help AHS better serve the needs of this neglected patient group.

    Thank you for your consideration."

    I'm going to take a break now. In the meantime, I'd welcome suggestions of other publications to target.
     
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