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Holding a Multi-City Demonstration: A Sleep-In at Major Intersections Around the U.S.

Discussion in 'Action Alerts and Advocacy' started by Rrrr, Jun 22, 2010.

  1. Ever Hopeful

    Ever Hopeful

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    We could hold a contest for prizes for the most creative pillowcase, most moving, funniest, brightest, biggest, smallest, wildest, etc. by posting them before we send them on the big day.
  2. Rrrr

    Rrrr Senior Member

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    i like two ideas shared here:

    1. we don't need a coodinated effort or a big demonstration: we could just have individual folks (or groups of 2-4), at any time, in any city, grab a cot, pillow and sign and park themselves outside a blood bank or blood drive site and have the sign say "Do you want my blood, too?" and have a handout explaining everything. the key will be, again, to ask the media to come and take a few photos.

    2. i love the idea of using pillows for theatrics. but i don't think using pillow cases is enough. i think we need to use pillows. my thought is to not send them to the media (i think they don't like to respond to that type of approach, i think they want to choose what to cover and not be forced into covering something, AND they like to keep themselves out of the story. so if we send the pillows to the media, they may reject our pushiness. but i am not sure, of coruse!) anyway, back to the idea of pillows. sort of like the AIDS quilts, we could have pillow displays, or just decorate our pillows with slogans and bring them to our demonstrations.

    rrrr
  3. Rrrr

    Rrrr Senior Member

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    p.s. all the other ideas are good too. for example, bumper stickers can't hurt and can only help.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I think this is a good idea. My workplace has these frequently. I have thought of donating blood, let's spread the misery, that will get more people's attention!

    Kind of what I have thought in the past, don't worry, have not done it.

    This would be especially good to do when they do their massive blood drives! Like around Holidays in the US.
  5. Rrrr

    Rrrr Senior Member

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    I LIKE THIS IDEA!!!!!!!!

    http://www.cfscentral.com/2010/07/q-and-with-cdc-scientists.html

    "Plus, one patient’s solution: A united demonstration of solidarity at blood banks in every city, in every country, and on every continent to inform the public that Health and Human Services is withholding the publication of the FDA/NIH XMRV study and that the newly discovered retrovirus may be contaminating the blood supply and infecting millions of people."
  6. gracenote

    gracenote All shall be well . . .

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    This week I received an invitation in the mail to donate blood and "Save a Life!" They are offering a FREE lunch from a pizza place and a FREE ticket to the fireworks show and (there's more), a chance to win $50.00 gift cards!!!

    This plea for blood donations came with a picture of the American flag on the front and is tied in with the 4th of July.

    Should I "Be a lifesaving blood donor!" and go donate my XMRV + blood? Should I CDC? Huh?

    OF COURSE I WOULD NEVER DONATE MY BLOOD. (And I would never threaten to donate my blood.)

    But DEMONSTRATING at a blood bank sounds like a very good idea.
  7. Stone

    Stone Senior Member

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    How about a convergence in Washington D.C.? I suggested this before, but I think it would be great if we staged a lie-in on Capitol Hill. We (or a healthy proxy) could show up in DC with our wheelchairs, oxygen tanks, IV poles and cots right on the Mall. It would surely be covered by the media. Hard to get to? Absolutely. Hard to deal with this kind of government crap and no media coverage? Absolutely. It's ALL hard, if not impossible, yet if enough of us could make it to DC on the same designated day, it would be a dramatic statement. So many of us would have to send a proxy in our place, but it would still work. Doing the Blood Bank demonstrations sounds like we're a threat to people and could bring us bad press.
  8. Rrrr

    Rrrr Senior Member

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    hi,

    i really think the Wash dc idea is great, but the travel is near impossible with our level of health. that kind of trip would kill most of us. staying at a hotel would too.

    i think one idea is to see if the northern VA CFS group wants to organized this idea of yours, stone, and have them do it, as they are already in WDC. i can put you in touch with the woman who runs the VA CFS group, so you can ask her if she wants to do this...? it is a well organized group.

    what i like about the blood banks and blood drives is this: they are everywhere and happening all the time. we could go on any day we are well enough to go. we don't need to organize it too much in advance. we just need the local newspaper's reporter's email and phone in advance, and we need to teach them in advance about CFS and the politics, and then tell them we will be doing this demonstration one day soon. then call them the day we do it, and hopefully, no assurance of course, but hopefully they will send a reporter and photographer.

    i see this as actually having more of an impact than a single demonstration. i know others will not agree with me. but surely the nih will hear about these mini demos, if we have a few of them around the country. and i really think this is more doable for us CFS folks than a travel to Wash DC type of action.

    i want to do it in boston soon. in front of a blood drive or in front of the Health and Human Services office (federal office in boston). is anyone interested? there are two of us ready to do it.

    we would not "threaten" to donate our blood. so no bad press. we say to reporters and folks going into the blood banks, "don't you want to be protected from people like me, with cfs, who may have a retrovirus? well, right now, you are not being protected from us beause there is no ban on us donating, just a "discouraged from donating" warning.

    i want to do the demonstration in my pajamas AND BUNNY SLIPPERS, with pillows and blankets and a cot. and a sign that reads: "Health and Human Services is withholding the publication of the FDA/NIH XMRV study about a newly discovered retrovirus that may be contaminating the blood supply and infecting millions of people." and of course have a one pager flyer to give to each person who walks by.

    i have already reached out to the media here, and am trying to get their interest.

    xxoo
    rrrr
  9. Rrrr

    Rrrr Senior Member

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    hmm. maybe it would be best to do these blood bank demos on the same day around the country... not sure.

    i see pros and cons to them happening on the same day vs diff, sporatic days (there is an advantage to having a steady stream of them happening, building momentum type of thing)
  10. taniaaust1

    taniaaust1 Senior Member

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    One dont have to block traffic at all to be noticed. A group of people in pjs and messed up hair or whatever .. (which are our costumes, saves energy for the very sick ones getting dressed too, not many have got energy for dress up parties and costumes) are quite noticable.

    I loved that others idea of pillowcases on which is drawn how many years you've lost throu having CFS.
    ...............
    i so wish i was in America as i would of arranged a group to get together to be in pjs outside CDC, or whatever health place which could be held accountable. Even just a protest of 5-10 people could attract attention
  11. gracenote

    gracenote All shall be well . . .

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    Yikes. I don't own any PJs. I purposefully sleep in soft stretchy cotton clothes so that if I'm not up to getting dressed during the day but still HAVE to go out (mailbox, corner store, emergency room), I will be (relatively speaking) decent. I would need to BUY PJs.
  12. taniaaust1

    taniaaust1 Senior Member

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    i like the blood bank protest idea for America (here in Australia our blood was completely banned due to the XMRV thing.. but i see America as still having a way to go "strongly discouraging donation" isnt enough).

    i also thought Stones idea was good and maybe their local CFS group could get together and do that.
    ......
    If one wants to hang up something during a protest, pillowcases are easier than pillows (and cost less than a pillow, everyone has old pillowcases about the place).

    ** What happens in a riot.. pillow fights :tongue: **
  13. Rrrr

    Rrrr Senior Member

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    no need to buy anthing. if you bring a pillow with the number of years you have been sick written on it, and a blanket and cot. that is good enough!

    (i don't think a pillow case is enough. we need to bring the actual pillows. the pillow case will just look like a cloth sign)

    FYI: i'm getting some off forum comments that we'll be laughed at in our pajamas. i see the point. but i like the attention getting theatrics of the pajamas and pillows. so we'll need a few IV poles and wheelchairs, TOO, to help legitimize us.
  14. Evangelina

    Evangelina

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    I personally think that we do need some media attention. However, since I don't want us all to end up with flares or relapses may I suggest the following?
    We need reporters! We need jounalists!
    I know you all are probably in a brain fog right about now (as I am), but follow my line of thinking.

    We need the most watched, most read most visited sites in the nations of the world picking up this story. We need nightly news reports and tough questions. I think we really need to get the parent company of the Wall Street Journal (Rupert Murdoch) to pick up this story. One newspaper is not enough!
    Has anyone emailed FOX News / SKY news or any of their particular hosts? Imagine having Bill O'Reilly doing a Talking Points memo on the CDC and XMRV. Love Bill or hate Bill - his viewship is amazingly huge. We need exposure and coverage. In short, concise emails giving brief details we need to let the journalists do their jobs and follow those leads. We need them because they live to hunt for stories like this and most of us are barely living.

    Does anyone know friends of family who work for FOX or SKY and who could pass the message along? Camramen, lighting specialists, makeup - anything? Let's use our 7 degrees of separation for good. If we can get the news media (all of them from bottom to top and local to international) to pick this up we will at least hurt the CDC where it matteres - their image.
  15. bakercape

    bakercape Senior Member

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    sleep in

    My familyand I are game for Boston Sleep/sit in. MAybe Mass. CFIDS and NAtional CFIDS assn could do Boston. I've thought about standing outside the redcross at there next blood drive and handing out info on XMRV to people before they go in. Could I get arrested for that? I almost don't care.
  16. Cloud

    Cloud Guest

    Sitting or lying at the front porch of the blood bank handing out flyers on xmrv contaminated blood would surely get some attention. That would scare hell outa people and get the media come running.

    http://www.youtube.com/watch?v=Ao3FuGEGcU8

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