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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Toronto Star: New research unlocking mysteries behind chronic fatigue syndrome

Discussion in 'General ME/CFS News' started by Kati, Jul 4, 2016.

  1. Kati

    Kati Patient in training

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    Last edited: Jul 4, 2016
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  2. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    Wow! Fantastically well done @ScottTriGuy. :balloons::trophy::balloons:

    And a great article - barring some small sour grapes in the middle from a random psychiatrist ;)
     
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  3. Sasha

    Sasha Fine, thank you

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  4. Kati

    Kati Patient in training

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    [QUOTE="Kyla, post: 740308, member: 18732]

    And a great article - barring some small sour grapes in the middle from a random psychiatrist ;)[/QUOTE]

    Dr Shorter's colleague. Why the journalist was directed to this person is a mystery.
     
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  5. Old Bones

    Old Bones Senior Member

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    @ScottTriGuy Good job, Scott. Glad to see your hard work is gaining some traction.

    I haven't seen the name Harvey Moldovsky for quite a few years. But, my recollection is that he was one of the "good guys" in the field (or at least better) -- quite knowledgeable regarding the sleep disturbances many of us experience. Was I mistaken?

    From: http://www.ncf-net.org/forum/sos.html

    "Dr. Harvey Moldovsky, M.D., University of Toronto Center for Sleep and Chronobiology, The Toronto Hospital, Ontario, Canada

    Moldofsky pioneered work on alpha delta sleep abnormalities in both CFS and FM. The first longitudinal population based study of self reported sleep abnormal in CFS conducted with CDC pointed out self reported sleep abnormalities much more common than healthy controls. He found evidence of a 45 min phase shift in circadian rhythm of sleep in both CFS and FM and data that demonstrated a NK cell number correlate - as cortisol level dropped the natural killer (NK) cell numbers dropped as well."
     
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  6. Kati

    Kati Patient in training

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    Thanks @Old Bones, good to know.
     
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  7. Groggy Doggy

    Groggy Doggy Senior Member

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  8. Comet

    Comet I'm Not Imaginary

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    @ScottTriGuy you're so :cool:! (<--cool) Thanks for speaking out for those who can't.
     
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  9. eastcoast12

    eastcoast12 Senior Member

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    Your an inspiration man. :thumbsup:
     
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  10. helen1

    helen1 Senior Member

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    That's amazing, like you @ScottTriGuy! What did you think of the article compared to your interview with the journalist? Were there any surprises?
     
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  11. leela

    leela Slow But Hopeful

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  12. Hutan

    Hutan Senior Member

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    That was a great article. Well done to @ScottTriGuy, you came across really well.

    I actually didn't mind Moldovsky's comments about the Cornell research - he raised a question about the validity of the control group that I would be interested to see an answer to. And the way his comments were presented, it didn't undermine the message of the whole piece. It was interesting to see your comment about him @Old Bones.

    Maureen Hansen's work has been getting a lot of really useful publicity. Today my sister-in-law, a senior nurse, sent me a link to an article in a New Zealand news service about it. I guess Hansen's very direct comments about the illness being biological have helped to ensure the right spin is put on articles.
     
    Last edited: Jul 5, 2016
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  13. AndyPandy

    AndyPandy Making the most of it

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  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I chatted with the reporter for about 45 minutes, so there was a lot more info that could've been included (eg experience with policy advisor, "I hope I get cancer" / access to off-label meds, trauma caused by medical system, etc) - but I understand her challenges with space limitation, other interviews, and that the focus of the article was on Hanson's research.

    My big take away, is that we need an investigative report (and independent federal inquiry) into the systemic failures of the research institution (CIHR) and the medical institution. Getting an editor / reporter's commitment to that endeavour and more newspaper space will be a challenge.

    It makes me think that in addition to seeking media coverage, we need to create media content: viral videos, live / virtual demonstrations, etc.
     
  15. mango

    mango Senior Member

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  16. meadowlark

    meadowlark Senior Member

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    Thank you, Scott! Superb!
     
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  17. medfeb

    medfeb Senior Member

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  18. shannah

    shannah Senior Member

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    This same article has been picked up by 'Our Windsor' and it seems that it may be a community newspaper. However, unlike 'The Star', comments are open.

    This is a perfect opportunity for advocacy and a wonderful chance to begin to build relationships with the Canadian media. We don't get a lot of coverage up here and we desperately need it.

    Please, can I ask that whomever is able, post comments, thank the writer and paper for publishing, 'like' or 'tweet' to give the paper some traffic and let them know there are people who are very interested in this article. Hopefully they will be encouraged to cover events in the future.

    Here's a link to the article

    http://www.ourwindsor.ca/community-...ng-mysteries-behind-chronic-fatigue-syndrome/

    and a link to Sasha's great article reminding us all of key points to remember when dealing with the press.

    http://forums.phoenixrising.me/index.php?threads%2Fhow-we-can-hijack-the-media-in-four-easy-lessons.38464%2F

    You don't have to be Canadian to comment.

    Thanks - much appreciated.
     
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  19. shannah

    shannah Senior Member

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    There are now 2 comments to the article.

    The article has managed to gather 1 'like' and the 2 comments have gathered several 'likes'.

    There are many Canadians at PR that have been very active in the international community. Might I implore others here to invest a few minutes for your Canadian counterparts?

    Links in post directly above this one.

    With appreciation!
     
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  20. meadowlark

    meadowlark Senior Member

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    I'd like to comment on the Windsor piece, but I'm very sick today (head swimming) and so I'm going to need some help with a very elementary question. To register, the W. Star tells me to declare my user name and defines the user name in parenthesis as "email." My email address uses my actual name. But I'd rather my real name didn't appear on my comment. Am I misunderstanding this?
     
    Last edited: Jul 7, 2016
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