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Helping to win $900,000+ for ME/CFS research - brainstorming for Round 2, Chase comp

Discussion in 'Action Alerts and Advocacy' started by Dolphin, May 5, 2011.

  1. beesknees

    beesknees Senior Member

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    Agreed. Get alot of votes right out of the gate.

    I guess now is the time to contact everyone who you've ever known on Facebook. Old classmates, coworkers, college friends, neighbors, heck even the newspaper boy if you think he'd vote. lol
     
  2. Andrew

    Andrew Senior Member

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    Is there a way I can mass email friends on facebook? I don't know how facebooks works. I only joined to vote, and then I ended up accepting friends who contacted me. I've never posted on my wall, or whatever that thing is.
     
  3. beesknees

    beesknees Senior Member

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    Yes. When you click on send a new message, a box will pop up. Where it says "TO" start typing a friends name, their name will appear with their photo, then just click on their name, search for another friend, click on the name, and so on.

    To post on your wall, click on the word "profile" in top right corner. In the middle of the page there will be a box that says" What's on your mind." Type your message there, and when your done click share.
     
  4. SpecialK82

    SpecialK82 Senior Member

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    Guess what guys!

    I just talked with my apartment office and explained CFS and the Chase contest and she told me to send her an email with a blurb about CFS and directions for the contest and she will send an email to all the residents (approx 700) and will explain that one of the residents has this illness and ask them to vote on Facebook!

    I'm so excited!

    Does anyone have an easy 2 or 3 sentence description of CFS explaining how debilitating this is? I see good descriptions regularly but can't remember where.
     
  5. Sasha

    Sasha Fine, thank you

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    Wow, that's brilliant! Here's a couple of things I always remember:

    There's a great quote from Nancy Klimas in an NYT interview here:

    "But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

    I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."

    and from Dowsett (2006) [Dowsett B (2006) ME/CFS Epidemiology & Epidemics www.name- us.org/ResearchPages/ResEpidemic.htm]:

    ME/CFS affects more Americans than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, and costs the U.S. more than $9.1 billion annually in lost productivity. More importantly, nearly 90% of patients have not been properly diagnosed. Recovery rate is poor, estimated between 5% and 10% of patients attaining total remission. Patients can be as functionally impaired as those suffering from diabetes, heart failure and kidney disease, and are often as severely disabled as those with heart failure, late-stage AIDS, MS, patients undergoing chemotherapy, and COPD (chronic obstructive pulmonary disease).
     
  6. Dolphin

    Dolphin Senior Member

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    Over the last 24 hours, I have gone around lots of Facebook groups posting a message linking to this flyer. Bit.ly statistics say there have been 100 shares - I've seen a few but not many that aren't mine. I didn't write on any of the foreign language groups which reduced the numbers. Also I didn't write on a few other groups e.g. CAA, WPI, etc. as didn't feel it was my place to mention two groups; although I do hope they work together on this. I also posted it to 17 mailing lists I have been a member of for a while (i.e. don't claim to have got a lot of the yahoogroups out there).

    Facebook doesn't seem to be as strict as I thought about spamming. I've had no problems even though this batch was circulated in quite a short timeframe.

    It hasn't been Tweeted (posted on Twitter) as much as I would have liked - just me and Action for M.E. I only have 45 Twitter followers which doesn't help. Others are welcome to tweet it or highlight it elsewhere.

    The bit.ly link has got quite a lot of hits (69 plus 1 other from somebody else making a separate bit.ly link for the same link) esp. considering the main link I have been posting on Facebook is http://www.co-cure.org/Flyer_CCG_Round_2.pdf and even for mailing lists, that is short enough that it wouldn't break up. Also on PR, I've posted the file itself so people don't need the bit.ly link. The bit.ly link has been used by quite a few people from outside the US: United States ( US ):26; United Kingdom (GB):20; Australia (AU): 13; Canada ( CA ): 6; Norway ( NO ): 2; New Zealand ( NZ ): 1; Ethiopia ( ET ): 1.

    Fingers crossed it is handed out at some meetings (and other situations) like it is going to be for a showing of "Invisible" in Tralee, Ireland tomorrow night.

    If Faith Wong is reading this (sent a Facebook book friends request a few hours ago): the reason I sent the friends' request is that I thought if I was your FB friend, I could see where you have posted from your wall - you may have found places to plug it that I missed.
     
  7. SpecialK82

    SpecialK82 Senior Member

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    Sasha - thanks so much for the quotes! I'm thinking that I might start by just saying a few sentences about me to draw people in. I'm hoping that showing the human side may entice people to act on the email - I know that will be the challenge.
     
  8. Sasha

    Sasha Fine, thank you

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    That personal touch sounds like a really good idea - I agree people always respond better to an individual story than generalisations about people they don't have a specific connection with.

    Good luck! What a great opportunity!
     
  9. Hope123

    Hope123 Senior Member

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    Just FYI, Eileen Holderman, the patient rep on CFSAC, announced the contest yesterday during one part of the meeting and it was recorded on video. Hopefully, some flyers or other info was also given out at the time.
     
  10. Sasha

    Sasha Fine, thank you

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    Yes, I heard that - I think she said Marly Silverman had asked her to do it. Good for them for getting it in there! That could get us loads more extra votes.
     
  11. Dolphin

    Dolphin Senior Member

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    Well done to all involved. If any gets a time on it, I'd be interested in seeing it.
     
  12. beesknees

    beesknees Senior Member

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    So today it hit me, it really hit me, how much money is at stake in this once in a lifetime opportunity. The WPI and CAA could get $900,000 that's nearly a million dollars.

    When in all these years of being sick, did we ever think we would have a say in getting nearly ONE MILLION dollars for ME/CFS research!!

    Who decides -US!!!!! It's in our hands, finally after all these years. We can do this!!
     
  13. Dolphin

    Dolphin Senior Member

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    :thumbsup: :victory:
     
  14. Tuha

    Tuha Senior Member

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    today I forced 3 my friends to create a facebook account only to join the competition. At first they were completely against facebook but then a beer can always make a miracle so they changed their old prejudges :)
    some more beers and we will get there
     
  15. beesknees

    beesknees Senior Member

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    :D:D:D:D
     
  16. beesknees

    beesknees Senior Member

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    Are there any authors of CFS books that have a website or blog that could pass along the information about Chase. I looked for them but couldn't find any.
     
  17. beesknees

    beesknees Senior Member

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    Here are a few ideas for WPI and CAA. Some of the suggestions I've seen other groups in the running doing and some ideas I've seen other groups in other online contest doing.

    1. Send out a press release. (If it's not against the rules)
    2) Contact area newspapers/ radio stations/newspapers in Charlotte and Reno.
    3) If you go to wolf.org they have a large ad for the contest on their site. On WPI and CAA you have to practicly hunt the details down.
    4) I dont know what it's called. but when you search google and their is a desciption of the website several causes in the running have the Chase contest mentioned there. You don't even have to go to their website to know that they are in the running! I wondered if maybe Phoenix Rising could do this. I know nothing about computers so I don't know how hard this would be to change.
     
  18. charityfundraiser

    charityfundraiser Senior Member

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  19. Dolphin

    Dolphin Senior Member

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  20. beesknees

    beesknees Senior Member

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    Sure, now I don't see it just searching for the charity name. I must have searched for the charity plus the words Chase Community. The Chase details show up better on Yahoo search than Google. Example: Search for international wolf center chase community

    On Yahoo, the CAA has done a really good job with description on Chase in search engines. They actually have the insructions on how to vote show up in the description. I haven't seen any other cause manage to do that! But it only shows up if you search for cfids association chase. If you ad the word community it doesn't show up.
     

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