Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
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Help me/cfs ally Dr Carolyn Bennett appointed as Minister of Health

Discussion in 'Advocacy Projects' started by ScottTriGuy, Oct 21, 2015.

  1. Snowdrop

    Snowdrop Rebel without a biscuit

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    Sorry but that sounds really optimistic to me. We need to work on having the PACE trial rescinded, retracted, whatever. That's already an epic battle that few of us have the energy for.

    I'm hoping some smart people will help us define what is most effective, what strategies can be applied with least effort/most advantage etc. Maybe between all of us thinking about that we can come to some answers. But the PACE trial data needs to be demolished completely once and for all.

    Edit: one thought I have is putting pressure on the UK media to look more carefully at PACE and all the politics around ME.

    Then we can start working toward awareness and educating politicians and Dr's and demanding funding.
     
    Kati likes this.
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Yes and me too.
     
  3. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Totally concur.
     
    Kati likes this.
  4. Kati

    Kati Patient in training

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    Are you guys on twitter. i have directed a few tweets in regards to the PACE trial to different canadian organisms/ people of influence. i will do the CIHR later today. Liking and retweeting tweets in Canada will make a difference if many of us support each other's efforts. who is in?
     
  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    I've been RTing literally dozens of tweets and mine are getting RTed but the overall amount is still low. It looks like there just aren't that many of us on twitter.
     
  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I just signed up and did my first ever tweet / retweets!!
     
    Kati and Snowdrop like this.
  7. Kati

    Kati Patient in training

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    I didn't like the part where he said that unless you are a men in his 40's, with history of heart disease, with chest pain, there is no reason to investigate chest pain further.

    First this man practices in a Women's hospital. Women get heart attacks too, but signs and symptoms are different than men and furthermore, women suffer from other kinds of heart attacks than obstructed coronaries. He should know that.

    Secondly, we know that patients with ME may well have viral endocarditis, such as the story of Casey Fero who died of it at age 21. You can look him up on the web.

    Thirdly, conditions such as POTS can also cause chest pain.

    The allusion that chest pain is unimportant is misguided and also sexist.
     
  8. Kati

    Kati Patient in training

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    Welcome to Twitter, Scott, make friends, lots of friends. Not just ME patients. We need to step outside of our community.
     
  9. Snookum96

    Snookum96 Senior Member

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    Hey guys, I'll start tweeting too. I already follow Kati but I'll follow everyone else now that I know who is on Twitter.
     
  10. Kati

    Kati Patient in training

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    People to tollow: your health minister. Your MLA, your MP. David Tuller. Tom Kindlon. ME Action. CMAJ_members (Canadian Medical association), CIHR, Justin Trudeau...

    Anyone else? :-D
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    Those are all good follows. I tried following people with shared interests to widen the scope but I'm not sure how that's working out really.
     
  12. Kati

    Kati Patient in training

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    Carolyn Bennett is on twitter.
     
  13. Kati

    Kati Patient in training

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    By the way you don't need permission from them, nor should you expect a follow back.

    also another suggestion, look at who people you follow, follow, look at their list of followers. see if there are people you would like to follow among them.
    Think physicians, pharmaceutical companies, @NIHdirector

    look up hashtags of interest to you. #mecfs #PACEtrial (retweet the tweets you agree to)
    #cdnhealth (add people who have an interest in canadian health) #cdnpoli
    Look at what's trending on twitter. The health care tweetchats will be for another lesson ;-)

    Edit to add: André Picard, famous health journalist in Canada.
     
    Last edited: Oct 22, 2015
  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Whew.
    Just spent the day helping my 91 yr old Grandmother home from the hospital after she fell last Sunday. Luckily nothing broken or cracked but her memory has suddenly worsened. I hoping its the pain meds.

    Will get my twitter on this weekend.
     
  15. Kati

    Kati Patient in training

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    Take it easy, Scott. Family first. Sending best wishes to your grandma, and yes pain meds can do all kind of weird tricks on seniors.
     

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