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Advocacy Made Easy And Cheap! Just need a little help and we can make an impact.

Discussion in 'Advocacy Projects' started by jimbob, Aug 19, 2011.

  1. jimbob

    jimbob ME/CFS84-XMRV+

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    The Boxes Rebellion



    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.
    Izola likes this.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Interesting idea, it's relatively low cost (6-7$ for Shipping?). Why do you think NBC and CBS are good orgs to send to?

    GG

    PS This might be to much for the really ill people though. Putting together a packet of information. I guess it depends upon what this entails. I envision much printing and/or photocopying, which would likely be accommplished by a need to leave the home.

    PSS do you think many faxes were sent during campaigns? I cannot image many people have faxes at home, so fewer things would occur via this means.
  3. jimbob

    jimbob ME/CFS84-XMRV+

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    I think CBS is perfect because they were in on the spinal fluid discovery and if they make mention of this, it might just be on 60 Minutes. I think most people have printers, so it won't be a problem (10-12 pages). People that don't might have someone they know that could make the cys for them. No faxes, the whole purpose is to have thousands of boxes show up at one location for maximum impact and awareness. And the packet of info will be done ahead of time, all packets will be the same, so this will be quick and easy for everyone. I will start monday on the content for the packets, and if the majority agrees, we're basically ready to go at any time. Would like to do it sooner, but thought oct. 9th, 2 yr anniv of XMRV in M.E. might add even more weight.
    Izola likes this.
  4. Ember

    Ember Senior Member

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    Nice new thread name! Can we include the ICC in the packets?
    Izola likes this.
  5. madietodd

    madietodd Senior Member

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    I'm in!

    Madie
    Izola likes this.
  6. alex3619

    alex3619 Senior Member

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    Hi jimbob, sorry to disappoint you but I have no printer, and usually can't get to a post office. I have no photocopier either.

    There might be another way around that issue though. A central organization, say an established advocacy center, might be funded to do this on peoples behalf. They print the document, add a page saying "sent on behalf of" with whatever details are wanted, and post it. People in turn send in a donation to fund this. Its just an idea.

    Another point is this should be well represented on social media, including facebook and twitter.

    Bye
    Alex
    Izola likes this.
  7. jimbob

    jimbob ME/CFS84-XMRV+

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    Yes Ember, that's one page for sure. Alex, maybe the MCWPA can help out those who can't make copies. I'll mail you a packet if need be. Once it's finalized, it will represented as much as humanly possible.
  8. RivkaRivka

    RivkaRivka Senior Member

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    i love this idea!!! i have two comments tho.

    targeting a news media is tricky, as they will be very reluctant to make themselves the story. (i.e. "Today, CBS got flooded with packages.")

    and my 2nd idea is not to send info but something more striking. like... like... nightgowns? pajamas?

    not only is this more striking, unusual and visual -- and a statement (we are bedridden), but we can order it from amazon.com or elsewhere and send it as a "gift" to the target site/venue/gov't agency. so no leaving our house to go to the copy store, or the post office. all done at home.

    then we send out a press release that 30000 pairs of pajamas were sent to the NIH on XX date, to show that 30000 patients are bedridden, waiting for help from their gov't.

    rivka
    ggingues likes this.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    This sounds like a good idea to me!

    GG

    PS Hopefully we can find some cheap ones though, no need to spend a lot of money to send a message!
  10. jimbob

    jimbob ME/CFS84-XMRV+

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    I think to keep it cheap and easy, we stick with the packet of info. Print out 10-12 pages, put them in a box, put address on box and mail on the designated date, can't get any easier. We can send them anywhere, I just thought cbs Health Dept would be best.
  11. jimbob

    jimbob ME/CFS84-XMRV+

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    We can add a sure-fire way of guaranteeing impact. We put a "return receipt requested" on every box, I'm not sure what you call this in other countries, but I'm sure there is something similar. It doesn't cost that much and they will have to acknowledge receiving every package. I need just a little help from one of our well schooled members to pick the best 10-12 pages to send (obviously, as ember eluded to, the new ICC deffinition should be one). Then a computer savvy member (which I'm the furthest thing from) to put this info along with the instructions into some sort of site or whatever, where the thousands we will try to inform, can easily click on. Once again, the destination can be wherever the majority agrees upon. I do, however, feel very strongly, that the mailing date should stay oct. 9th. If we could set this up in the next week or so, we could start spreading the word using all forms of social media as well as contacting support gps and associations all over the world.
  12. rlc

    rlc Senior Member

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    Hi all, Ember asked me this question about the Box rebellion Would you have any suggestions for Advocacy-Made-Easy-And-Cheap: The Boxes Rebellion? in this tread which has turned into a tread about advocacy

    http://phoenixrising.me/forums/show...s-Over-Time-Pt-I-From-Symptoms-To-SPECT-Scans

    So Ill repost my answer here in case anyone finds anything in it useful
    Hi Ember hard to comment on the Boxes Rebellion idea without knowing what is going in the boxes!?

    All media outlets lay out very specific guidelines as to how they want to receive information, these days it is usually by Email, the sudden arrival of a large number of boxes is likely to extremely piss them off and alienate them, and leave them with the very annoying job of having to dispose of the thousands of boxes. This annoyance will be compounded if the boxes contain contradictory information that is not backed up by creditable sources. For these reasons I recommend not sending them to media outlets.

    However if publicity stunts are directed at the Government and Emails are sent to the media beforehand so they can go and cover the story, then they are very likely to write about the story! A good example of this would be the AIDS quilt. http://en.wikipedia.org/wiki/NAMES_P...Memorial_Quilt

    If for example A hundred thousand boxes were sent to the Whitehouse with HELP ME written in large letters on the outside, and inside contained the CDC statement

    The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.
    (Link to this statement here http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html statement at the bottom of the page.)

    An explanation that the US government doesnt spend a single cent on ME research and that all the patients have been abandoned to suffer without help, and a copy of the ICC.

    I would say that there would be a very good chance of this making the news all around the world as long as the media had been tipped of that a major protest was to happen at the Whitehouse before hand, if some ME patients and their families could be outside the Whitehouse with Banners, it would help increase the impact.

    If all effort is directed at one maximum exposure target like say the White house it will maximize the effect, which will be lost if it is sent to multiple targets.

    I would not advise sending to targets like the CDC, NIH, HHS you want to target the employer not the employee, the Government needs to be embarrassed into action, it needs to be brought to Obamas attention, so what better place then to have the boxes pilling up on his front lawn. ME has to be made an election issue, Obama has to know people wont vote for him unless he does something.

    I dont know the details of White house security maybe the boxes would have to be delivered to outside the Whitehouse and have some people pile them up around the perimeter, Maybe another National Monument with less security would be more suitable but it has to be in Washington DC and Highly visible (sorry for my lack of knowledge of Washington monuments Im in New Zealand)

    Personally I think the slogan HELP ME would be a good one to use because of its double meaning HELP ME (myalgic Encephalomyelitis)
    And HELP ME the patient suffering from it. (Start printing the T shirts)

    The only problem I see with the plan is getting enough people organized to do it on a big enough scale to make a difference, the US orgs like the CAA do not recognize the existence of ME and are unlikely to help. So there are likely to be a lot of logistical problems in getting it organized on a scale big enough to be effective.

    All the best
  13. RivkaRivka

    RivkaRivka Senior Member

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    an ongoing thanks to jim for spearheading this effort!

    i like the idea of the white house being the target for this mailing campaign. or the HHS.

    however, i'll bet that mail sent to the white house is not actually delivered to the white house itself. but they do do a daily tally, i'm sure, of what advocacy efforts are sent to them (mail campaigns).

    the idea of families outside the white house on the days of the campaign effort is a good one.

    and of course, alerting the media ahead of time, too, is good.

    i wonder if we should just include info in the box, or if just info is not enough. we need to ask for something, like more funding for research.
  14. Ember

    Ember Senior Member

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    I've been putting together some links for a friend who has a local media contact. We're trying to spell out the need for research under the new ICC. In case you're looking for content...

    Funding for ME-ICC research now!

    The compulsory critical criteria allow comparable data to be collected in various locations and may assist in developing consistent biomarkers and further insights into the mechanism and etiology of myalgic encephalomyelitis. (ME-ICC)

    We all hope the International Consensus Criteria will improve recognition of Myalgic Encephalomyelitis, promote consistency in diagnosis internationally, and lead to appropriate treatment in a timely fashion.

    Myalgic Encephalomyelitis: International Consensus Criteria Co-editors,
    Bruce Carruthers, MD, CM, FRCPC
    Marj van de Sande, B Ed, Grad Dip Ed

    PANDORA statement:
    http://www.facebook.com/note.php?note_id=245364462150092

    ICC document:
    *http://phoenixrising.me/forums/attac...8&d=1311328233

    ICC abstract and table:
    *http://www.research1st.com/wp-conten...IM-Table-1.pdf

    CDC overview of CFS and ME:
    http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

    NIH spending:
    http://report.nih.gov/rcdc/categories/

    ME/CFS Action Alert:
    www.youtube.com/watch?v=vIWGFFkp_lw

    Burden of disease study:
    http://www.ncbi.nlm.nih.gov/pubmed/21383981

    The Economic impact of ME/CFS: Individual and societal costs (2008):
    http://www.ncbi.nlm.nih.gov/pmc/arti...8/?tool=pubmed

    Profile and impact of 23 chronic diseases from CCHS 2005:
    http://www.mefmaction.com/images/stories/quest_newsletters/Quest80springsummer2009.pdf

    *For some reason (?) Bob's links to the ICC document and table (http://forums.phoenixrising.me/showthread.php?13038-ICC-Advocacy) don't work when I repost them.
  15. jimbob

    jimbob ME/CFS84-XMRV+

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    Some of these could be very useful for inclusion in the education packet. Just need to vote/agree on what goes in and the destination and mailing date and we're good to go.
  16. beaker

    beaker CFS/ME 1986

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    I am reminded of another wonderful idea/project. I think it kinda fizzled out --- too much energy needed.
    Not saying to damper your idea. You might want to contact these folks and see what advice they might give.
    (or maybe it could be revived)

    Sock-It-To-Me
  17. jimbob

    jimbob ME/CFS84-XMRV+

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    I don't think making 10-12 cys and putting them in a box and mailing it requires a lot of energy. The info and the box (hopefully thousands of them, once the word is spread) is enough of a major impact. We just need to keep this simple and it will work.
  18. snowathlete

    snowathlete

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    No reason why more than one cant be sent from one address, to help those without printers etc.

    Cost might become an issue, but perhaps we could establish a small fund for this?

    Are letters in a box going to be striking enough? Maybe. It would have to be large numbers if it was going to work. Something harder to ignore might be a huge box (too big to fit through a normal doorway) - dont know what we would fill it with...ten thousand slips of paper with sufferers names on, something like that? and a file with the main info.
    Hard to ignore something like that.

    Just ideas, but i think boxes, as has been suggested is great too. If we do nothing - nothing happens!
  19. Nielk

    Nielk

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    How about a photobook like from Snapfish where we would have on each page a picture of a patient with small write up about their story. In the front page we can include a digest of the ICC and maybe now also about the Norway study. Tell them how we need so much more funding and awareness from the government. I know that there are more expenses involved but, They can't just throw away a book album as opposed to some papers. It makes it also very personal, having patients pictures and stories. I'm sure whoever we get to print these out would give us a discount knowing that it's for a charity. We can collect the money we need for this.
    We can even possibly have the printing company send it straight to the addressees we give them. All we have to do is gather pictures and a small bio from people and give the icc/Norway info on first page.
    How many do you think we would need?
  20. taniaaust1

    taniaaust1 Senior Member

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    I think this box idea was a very good idea. Many many boxes get more noticed then just one big box as each box needs to be handled.. and if each had to have a signature for for proof of delivery.. that would be a real pain for whereever they were being sent to.

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