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Reddit AMA with Dr Mady Hornig (March 6th at 1pm)

Discussion in 'Upcoming ME/CFS Events' started by SB_1108, Mar 4, 2015.

  1. SB_1108

    SB_1108 Senior Member

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    I just wanted to make sure this message by @Bob was seen by everyone! This is a huge opportunity to get major exposure for CFS/ME. If you have not made a Reddit account PLEASE SIGN UP, ask questions, then upvote/downvote questions according your preference and comment as necessary!
     
    NK17, lycaena, Scarecrow and 8 others like this.
  2. Bob

    Bob

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    AMA = Ask Me Anything
     
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  3. Bob

    Bob

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    Thanks for starting a new thread, @SB_1108 :thumbsup:
     
    SB_1108 and oceiv like this.
  4. Soundthealarm21

    Soundthealarm21 Senior Member

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    I hope the reddit community is a little more open minded than this guy I encountered on there today:

    ""Chronic fatigue syndrome" AKA: tired from working a 10 hour shift. Cool."

    :bang-head::bang-head::bang-head::bang-head:

    Hopefully this will be a chance to get some awareness out there.
     
  5. Soundthealarm21

    Soundthealarm21 Senior Member

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    Also, people, if nothing else make an account and UPVOTE the thread when it gets published so that we can push this to the front page and get maximum exposure.

    For those of you not aware, Reddit is one of, if not the, largest link sharing/forum based websites in the world. Hundreds of thousands to millions of people browse reddit every day. If we can help get this thread to the front page it could really help get us some awareness.
     
    Roy S, snowathlete, Bob and 6 others like this.
  6. oceiv

    oceiv Senior Member

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    Reddit is known for having a pretty harsh environment. Just know this in advance and ignore the trolls. I only go there when following links. Would it be helpful to suggest questions in advance here? That way, if people can attend on Friday, but don't have questions, they can get some ideas? I'm not well at that time of day, but will see if I can get someone to attend and upvote good questions..
     
    snowathlete, Esther12, Bob and 3 others like this.
  7. Soundthealarm21

    Soundthealarm21 Senior Member

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    Haha yes I know it is doesn't make it any less frustrating. I've been on reddit for almost 3 years now. I'm just hoping the trolls will be at a minimum, and they usually are on a subreddit like /r/science. The mods get rid of off topic content.
     
    NK17, Esther12, Sasha and 1 other person like this.
  8. oceiv

    oceiv Senior Member

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    So true. The ignorance out there (in general) is highly frustrating. When I read one recent ME/CFS article recently. I saw the here that that article's comments were mostly negative and had to practice some serious self-restraint and not click on them. I'm trying to be on a low-stress diet. How in the heck you've survived on Reddit for 3 years is a miracle to me. ;):lol:

    Good to hear. If it is on-topic-trolling, do the mods get rid of it?
     
    NK17 and Sasha like this.
  9. Soundthealarm21

    Soundthealarm21 Senior Member

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    I don't use reddit for the disease or advocacy or anything like that. The only reason I even found that comment was because @mallen12132 happened to be involved in it. I use it to keep up with sports and laugh mainly. So it's pretty stress free on that end. There is an endless amount of cool stuff on that website and since I'm ill I use it a lot.

    Mods will get rid of anything that is a joke or trolling. They only want serious discussion instead of low effort puns. That's specific for the /r/science subreddit.
     
    Sasha and oceiv like this.
  10. aimossy

    aimossy Senior Member

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    This is a huge opportunity if people want to make comments to get donations to these researchers. Use this link.
    www.bit.ly/DonateToDrLipkin
     
    SpecialK82, NK17, snowathlete and 5 others like this.
  11. SB_1108

    SB_1108 Senior Member

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    I've been on Reddit for several years but mainly just read/lurk because posting can be stressful. I'd love a friendly critique of my questions prior to posting (to hopefully keep the trolling to a minimum).

    Questions for Dr. Hornig:
    1. What is the current status of the CFS/ME microbe study?
    2. Because the crowd funding study only raised about $200k, how will you and Dr. Ian Lipkin obtain the remainder of the funding necessary to complete the study?
    3. CFS/ME expert, Dr. De Meirleir has found the positive effects of fecal transplants on CFS/ME patients are only temporary because he believes the transplants were not treating the core pathology and that bad flora regrows back in patients over time. Hypothetically, if the microbe study is able to identify a pathogen as the culprit for a majority of CFS/ME patients, why haven’t current treatments such as probiotics, antibiotics, and fecal transplants shown to be more effective managing the disease?
    If someone wants to steal my questions, thats cool too... Its all about the answers!
     
    NK17, snowathlete, medfeb and 4 others like this.
  12. aimossy

    aimossy Senior Member

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    Over 220k was raised, and you can still donate to Columbia to help their research efforts.
     
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  13. A.B.

    A.B. Senior Member

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    Registering on reddit takes 30 seconds. You don't have to check your emails.
     
  14. Sasha

    Sasha Fine, thank you

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    I've only vaguely heard of reddit and didn't realise what an opportunity this is. I think we need a separate thread titled something like 'Action alert: Fri 6 March: register on reddit to upvote Dr Mady Hornig to the front page and ask her questions', with an explanation of what reddit is (what you just said, basically), a link to the registration page and explanation that you don't need email registration, and instructions what to do: with a link back to this thread for discussion as the main thread.

    And I think we need to keep bumping it up the forums so it's visible.

    Is anyone who understands reddit willing to do this?
     
  15. wdb

    wdb Senior Member

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    SpecialK82, Bob, snowathlete and 4 others like this.
  16. aimossy

    aimossy Senior Member

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    Some people may struggle learning about how to use Reddit in time. I am wondering if people post questions on here that a kind person might put a selection of them onto the reddit? The information from the reddit will probably be shared after the event for many to see.
     
  17. SB_1108

    SB_1108 Senior Member

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    Mods - Can we change the title of this current thread?

    This website is pretty helpful: http://mashable.com/2012/06/06/reddit-for-beginners/
     
    SpecialK82 likes this.
  18. aimossy

    aimossy Senior Member

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    Thanks because I'm struggling to understand how to use it properly and many get intimidated with new things and cogs find it tough. I will check out that link.
     
    ukxmrv and SB_1108 like this.
  19. Sasha

    Sasha Fine, thank you

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    To be honest, I think we need to start a new, separate thread on that topic that has instructions in its first post - I don't think we can expect people to plough through all the discussion on this thread. I think we'll have lost them.

    We'll be issuing a call to action (hence the 'Action alert' bit) and the first post needs to be that call to action.
     
  20. Sasha

    Sasha Fine, thank you

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    I'm doing this now and I'll post a link here when the new thread is ready.
     
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