The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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The Boxes Rebellion

Discussion in 'Action Alerts and Advocacy' started by jimbob, Aug 17, 2011.

  1. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Have an idea for an impact program that is very cheap to perform. It seems letters, faxes, and e-mails are'nt getting the job done. A package of information is put together and posted so everyone could make their own copies. This package would then be put in a good size box and sent by USPS, UPS, Fedex etc. from all ME/CFS people. These packages would all be sent on a predetermined date. The destination for these packages could be a government agency NIH, HHS, CDC etc. or even better, CBS/NBC news (Health dept). The inundation of thousands of boxes showing up at one location would have a staggering effect. I would have to believe this would go public. Low cost, high impact! We really need to make a statement that the public might actually hear about.
     
  2. Dreambirdie

    Dreambirdie work in progress

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    I'd be wiling to do it... IF you organize and motivate everyone to participate.

    That's the hard part.
     
  3. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    I know what you mean d.b., but it's really so easy. We just get one of our brightest to post 10 or 12 pages explaining the past couple of years and everyone can cy it. Then all we need to do is choose a destination and a date and mail it in a box. Only cost is the postage (anyone can find a box lying around). You can even have someone mail it for you, if you're having a bad day.
     
  4. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    I can't believe more people are'nt reading this and weighing in?!!!
     
  5. Dreambirdie

    Dreambirdie work in progress

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    Welcome to the reality of advocacy. :(
     
  6. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    Dreambirdie, who's our best gossiper? We need to spread the word. imagine, boxes from the U.S., U.K., Australia, japan, china, Belgium etc., this would be awesome!
     
  7. Dreambirdie

    Dreambirdie work in progress

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    Hey jimbob--

    Like I said before, I would be willing to send a box, but I don't want to be involved in any other aspects of this process.

    I have done a good share of CFS advocacy in the past, and I will tell you that getting people motivated to participate in it takes A HUGE AMOUNT of energy. Right now, my energy is devoted to other things.

    I wish you good luck with it. Let me know if it comes together, and when and where to send my box.
     
  8. maddietod

    maddietod Senior Member

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    I just saw this thread. I'm in! I like that you describe it as 10-12 pages of materials. That's an amount people can actually read. Good-sized font, some pictures to keep it interesting.....I think it's a great idea.

    Especially because that amount can be mailed in a manilla envelope....super-cheap.

    I imagine that having these materials arrive at numerous agencies simultaneously might create a bigger bang than flooding one agency with thousands of identical packages. Just a thought.

    Madie
     
  9. Nielk

    Nielk

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    I would be willing to send a box.
    I also think it's a good idea.
    Like db said it is very hard to get people motivated.
     
  10. jimbob

    jimbob ME/CFS84-XMRV+

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    Alright DB, thanks for listening. Hopefully, I'll find a way to get it off the ground.
     
  11. Nielk

    Nielk

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    I think that maybe changing the name of thread to something like: YOU CAN DO THIS or something catchy so that people will actually read the post. I saw your thread yesterday and didn't even look at it because Battle of the Boxes didn't catch my
    interest because I had no idea what it meant.
     
  12. Tuha

    Tuha Senior Member

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    Hi jimbob,

    I would also participate. Like the others said the problem is that there are not many patients who are active and its almost impossible to get their attention. We have no effective communication cannals - so even if there is an action just only few people know about. Only in US are at least 100 ME/ cfs organisations so there has to be thousands of patients - but we are not able to reach them.
    You wrote this thread but who reads it? I found it by accidently. I think the most effective would be to have a mailing list of the people who would like to join some advocacy activities like you proposed. Everyone is reading his mail box often - so if there would be an idea like yours - you would just send email about and people could join it. I think this is the simpiest way how to inform the people. There was already mailing list like this but it dissapaired because of some technical problems - I tried to do some commercial about on a lot of forums and facebook pages but after some months there was only 500 people - so not too many what would you expect. With this number you cannot do too much but its already something.

    You can see our "strength" with the vivint contest - there are maybe 200 patients - the others are friends. there was such a big campaign but we were simply not able to get more people - i dont understand why - the participation is so easy, it takes 1 minute a day and it doesnt cost anything........
    Always the same problem. I think I would pay someone who would find a solution how to solve this problem.
    but dont be discourage - maybe it will be you who will find a solution
     

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