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xmrv action site

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by judderwocky, Jul 9, 2010.

  1. judderwocky

    judderwocky Senior Member

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    I'm building this website to be a landing place for XMRV stuff when we are socially mobilizing... i want a place where different communities... prostate cancer, CFS, fibro, immuno compromised... whatever... can get together to share stories and publish them to facebook... the website... which is not completely up yet... will have stories and peittions... i was hoping to get writers on here... the idea would be that as advocacy picks up, we could use the site to push stories through social sites like tiwtter and facebook... ive already got the facebook mod installed


    xmrvaction.org
     
  2. caledonia

    caledonia

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    Great idea. XMRV will affect many different patient groups. If we all band together, we will be able to move mountains. Let the revolution begin.
     
  3. boomer

    boomer Senior Member

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    There will be a big need to have such articles, given that the history and the symptoms of the illness are so complex. Journalists can be referred there. Let the revolution begin!
     
  4. MaryAnn

    MaryAnn

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    Great idea Jud, I'm sure this will be well visited!
     
  5. judderwocky

    judderwocky Senior Member

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    i'm totally listening to any suggestions people have on the site....

    it will be going off and on over the next week or so as i get all the modules stable.... so if you login, and find that your profile was wiped out in one of the rebuilds, don't be alarmed!
     
  6. Sasha

    Sasha Fine, thank you

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    Great idea, Judderwocky - but your link isn't live in your post #1 so you might like to edit - meanwhile here's xmrvaction.org.
     
  7. Jerry S

    Jerry S Senior Member

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    Excellent idea, Judder! I'll be there.

    Thanks for your seemingly tireless work for us all.
     
  8. Sasha

    Sasha Fine, thank you

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    OK then!:Retro smile: I'm reading Clay Shirky's stuff at the moment (Everyone is Connected and Cognitive Surplus) about how the internet has changed social activism (among other things).

    One of the things he says is that elected representatives used to think that a letter from a constituent represented 1,000 people who also felt strongly on the issue but who couldn't be bothered to write; similarly for petition signatures. However, now that we have the internet, where sending an email with a quick cut-and-paste of someone else's text and multiple recipients is quick, easy and free, those Congresspeople don't make that assumption. A letter or signing a hard-copy petition took effort; the electronic versions don't, so each signatory stands for very few other people.

    Shirky mentions arecent successful "petition" that he believed succeeded because participating clearly had a cost, though small. One consisted of mailing peanuts to the executives of the SF show "Jericho" to try to get it continued; as this interesting blog post about Shirky's stuff says, "peanuts are not easily deleted" and the studio realised that it had taken real effort for individual fans to send the peanuts; the show was resigned.

    One of the things we do here on PR and that is a possible for the XMRVsite is petitions, and Judderwocky has done some great stuff writing and coordinating; but are they effective? Do things like sending a box of peanuts, or a bunch of flowers (as in another protest) have the effects that petitions used to have before the internet? And if so, do we need a critical mass of activists to agree to send them (e.g. via PledgeBank.com)?

    Just a thought - I see a lot of energy going into petitions and I'd like to think that they work but in these internet days, maybe the message stage of the protest needs to be sending a physical object, not some electrons.

    I hope this is a helpful question, Judderwocky - I certainly don't want to discourage any efforts but think we maybe need to think about the means. Any views, anybody?
     
  9. judderwocky

    judderwocky Senior Member

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    out of curiosity... what kind of engagement have you had with public advocacy?

    ... all i can say is that I have worked for a couple organizations doing "e-organizing"... HRC and Planned Parenthood, both organizations rely very heavily on electronic campaigns, but they do resort letter writing campaigns if they have the interns to generate the letters ( if... lol). both can be highly effective. at HRC we only did one letter writing campaign and that was for a military funding issue related to DADT... it was (obviously) not successful. in my opinion the physical letters are more like icing... not the essential part of the cake, but very important in their own way....

    its signifigantly harder to organize these kinds of letter writing campaigns, its hard to track who has done what and its harder to go in with a show of force to a legislatures office and say "well, we're assuming you got our letters, so were assuming your going to meet our demands"... the only time its really effective is when you organize a bunch of college students to sit around and eat pizza and write letters... you mail the letters out, you know exactly how many went out, and you can gauge your wording with the officials when you go in their office...

    I would say the electronic campaigns actually have a greater effect for a couple of reasons. First of all you can say explicitly... "we have X people in your district, if you want their vote their vote then you will do y and Z for us".... its also much more uniform and can help you to present a good show of force...its also MUCH easier for the officials. they have to pay interns to open letters... with email though, they can organize everything by header, look at the total number of senders and then just tabulate the results for the officials. they are concerned about theatrics for the most part... mailing everyone a pound of flesh is good for generating publicity for your cause... but the officials only care about ONE THING... the total number of people doing it... (aditionally while it is true that it is easier and more simple to submit a petition... you are OVERLOOKING the fact that this applies to spam and nonsense in the internet as well.. politicians know that if a campaign sitting in somebodies inbox stood out from all the spam, it must be important to them. )

    which is one of the benefits from e-organizing... you get more people , and can have a more accurate presentation to the official of their constituency... we ran a bunch of petition and email campaigns at planned parenthood... i would say from my personal experience (both at the national and state level on this) that they were highly effective in every situation that I have been in. even when the official was definitely opposed to an issue, their posturing and media response can be tempered by a well coordinated e-campaign. These national organizations you hear about pay (literally) millioins of dollars establishing software and databases to manage their electronic campaigns... you really have no idea how much money goes into consulting companies...

    at the state level it was not uncommon for us to pay between 10,000 and 20,000 to a consulting firm to design a single campaign (custom formatting, custom videos, custom petition language, demographic testing etc). This might sound excessive, but these organizations spend the money because IT WORKS. Most organizations do a cost/benefit analysis of their spending on e-campaigns.... trust me, it works and they know it. they go where the money is.

    you are probably not aware of this (and they really try to hide this), (but to give you an idea of how effective a tool it has become in modern politics....) most of the "progressive" advocacy non profits banded together in the last election and created a "super database" that was shared amongst several hundred organizations.... i worked on this database system personally and you would be shocked at how much information it has... its sort of blinded to prevent your private data from getting out... but they purchased a whole bunch of information on THE ENTIRE COUNTRY from a credit and purchasing repository.... i'm not joking when i say I saw a technician pin point celebrities in the system and give us information about their purchasing history... i watched them do it. in addition to this they paid a team of statisticians and mathematicians to create thousands of prediction curves for their likelihood of voting, donating, and participation..... (over the last three years politicians have become more and more attuned to the effect of e-campaigns, several swing elections have been determined by outreach to social networking sites on both sides of the political isle...)

    the system allowed them to do targeted advertising, petitions, etc.... and a number of organizations bought into this system. e-organizing has become the bread and butter for most of the non-profits in DC... over the last 5 years they have developed a new position niche that you can find in one form or another at almost every one ... "e-organizer" .... thats not to say that they don't also have regional organizers doing protests door to door work, etc... its just that the electronic side is becoming increasingly important, and most have been swapping regional organizers for electronic organizers....

    The idea about sending something like a peanut in the mail can be an ok idea. We did something similar with whistles I think (it was a sexual assault issue if i recall correctly) ... its very important to pick something that isn't going to rot or cause the postal service problems. there is a very FINE line between "connecting" with your elected official, and pissing them off completely.


    The problem however that you run into with CFS is that the patients, are the advocates. As result the advocates are sick, and have difficulty doing something more physically intensive. An e-campaign works just as good imo and its easier on the patients. if you want to write letters though, I can only encourage you and others to do so.... though from personal experience it usually takes a lot more "encouraging" to get these campaigns off the grounds.


    also... if you want to know how to do community organizing i would suggest you go with someone that has actually done it. I looked up clay shirky becuase I had never heard of him before... it does not appear from his bio that he has actually ever done advocacy work. Shirky appears to have written a lot about activism and social networks... but he does not appear to have ever held a title directly involved in this. correct me if im wrong... according to his bio

    "In 1986 he graduated cum laude from Yale University with a Bachelor of Arts degree in fine art. [6]

    In 1990 he founded in New York City a theater company, Hard Place Theater, in which he created and directed several "non-fiction" theater pieces using only found materials such as government documents, transcripts and cultural records. One project titled "United Airline," included the transcript of the air-to-ground conversations during a plane crash, interspersed with quotes about flying and falling.[7]

    During the 1990s in New York City he also worked as a lighting designer for numerous experimental theater and dance companies, including the Wooster Group, Elevator Repair Service and Dana Reitz.[8]

    In the early 1990s, Shirky was vice-president of the New York chapter of the Electronic Frontier Foundation, and wrote technology guides for Ziff Davis (from another wiki article: The company (Ziff Davis Media) announced that it had filed for Chapter 11 bankruptcy protection on March 5, 2008[1] and emerged, following a court supervised corporate restructuring in July 2009.[2]) . He appeared as an expert witness on Internet culture in Shea v. Reno, a case cited in the U. S. Supreme Court's decision to strike down the Communications Decency Act in 1996.

    Shirky was the original Professor of New Media in the Media Studies department at Hunter College, where he created the department's first undergraduate and graduate offerings in new media, and helped design the current MFA in Integrated Media Arts program."

    so... frankly i don't find his views that pertinent.... IMO... i'm not saying he doesn't know what he's talking about... i haven't read him. all i can say is that my theology degree focused on religion and social justice... when i learned how to organize it was from people that had DIRECT experience doing it... frankly, playing the media is a game like any else. if you have never played golf, you probably shouldn't be a commentator on it.

    i can say that many organizations that DO have this experience, and the data and records to prove it, utilize e-campaigns more frequently than any other.... (unless they have an endless supply of pizza to feed college students doing the door to door work)
     
  10. judderwocky

    judderwocky Senior Member

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  11. Hope123

    Hope123 Senior Member

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    Judderwocky, I thank you for your work on the petition and am glad that you have lots off experience with e-campaigns. You might want to share your ideas with the major CFS groups. Jspot on the forum here is our unofficial rep for the CFIDS Association of America so you might want to send her some of your ideas. You can PM me if you want other groups to contact. Sasha also makes some excellent points.

    You are correct that people with CFS are very limited by their health. A friend of mine tried to organize a local group of healthy people to advocate. Although there were a few people who were enthusiastic, not very many were interested. Out of a group of 50+ people with CFS, only 5 family members and friends responded. Getting healthy people to support us is essential; this idea needs to be worked on more. It should be noted that NPR Weekend Edition host Scott Simon spoke for his friend Laura Hillenbrand (who wrote Seabuiscuit) before the Senate about CFS in 2008 because she was too sick to go.

    In-person or telephone works also. We've had one person speak out at a townhall meeting (and surprisingly got a lot of support from the audience); a few others have visited or called their Congressional members' offices -- this works well but often we are too sick to follow-up.
    I've also written snail mail and received some responses to that.

    My idea, which I've never been able to do due to declining health, is to put together a narrated video about CFS to present to legislative staff. The video would need to be short (5-8 minutes), straightforward, emphasize the public health aspects/ policy aspects of CFS (disability, economics, preavlence,etc.) and have references at the end. Major CFS groups would sign off on it and preferably we'd get a CFS MD to narrate. The video would be placed online on major CFS group sites.

    People could call or visit their reps. Tell them "I'm a constituent", tell them their story, ask them to sit in front of a computer, get to the video, and then sit/wait on the phone while legislative aides watch the short video. Doing this in real-time assures that aides watch the video. That way, aides get the human touch of a story and at the same time, the hard facts behind CFS. It would save energy for patients and they would not need to know all the facts themselves. There would be an e-mail address at the end of the video for aides to mail questions to.

    I've also found in my past work that people like to know results. A map showing which Congressional members' offices have watched the video and when (they can sign in on the website e.g.) could also be displayed so that people know whom to not hit with the video again but whom they should still tell their stories to. They can also use it as a reference point, e.g. "I've heard that your office has seen the video; let me tell you my story......."
     
  12. judderwocky

    judderwocky Senior Member

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    Interesting idea... depending on what level you were doing it at... you could do it as a lunch time presentation. get space near whatever legislative body you are targeting, organize with the staff well ahead of time, secure their attendance of the official and their staff... provide lunch to everyone, get the media there etc... and have a public "launch" of the new video... then you could follow it up later that day with targeted visits to the officials offices, following up with facts about patients in their demographics... i bet you could get a few regional women's groups and health organizations to sign on, if in name only... a lot of groups have an annual day of action at the state during the start of the legislative session, but since we aren't pushing legislation through, just awareness, it would be the kind of diversion a lot of them would be looking for about midway through the cycle .... a chance to get free lunch for the staff, make an appearance on something that isn't (yet) partisan.
     
  13. Hope123

    Hope123 Senior Member

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    1. I'm pretty sick - I struggle just to take care of myself so the steps you outline are good but I and a lot of people with CFS just don't have the energy to do that level of organization.

    2. The CFIDS Assoication has held one or two Congressional briefings in the past; I think a major problem though is they announced it only 1-2 weeks before it happened -- this is not long enough for sick CFS people to urge their Congressional members to attend nor enough time for some busy offices to plan to attend. The other thing is, I didn't see any feedback on who or whose staff attended and suggest they need to put this out in their newsletter next time. That way, constituents can thank their reps for attending and their offices can see if you work with the CAA, they will help promote goodwill with your voters.

    3. Women's groups are fine but we need to move beyond that. Men and children are also affected by CFS and CFS being placed in the Office of Women's Health gets no/ little attention.

    4. I never go just for awareness, I always have something I ask for the few times I've called or written. Without something specific for them to act on, it doesn't get attention as much. One time it was renewing the charter for the CFS federal advisory committee, this time it was to ask DHHS to release FDA/NIH findings. I have an acquaintance who has lobbying experience; she says to always make your ASK big and then backtrack. I don't have a big ASK formulated yet.
     
  14. judderwocky

    judderwocky Senior Member

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    oh don't get me wrong , add as many groups to the list as you want...i'm just throwing ideas out. ...
    i think it would be easiest to tap those first, but i am a man and i hear parents talking about their children getting it.... so im aware other groups are affected. really you just need the name of other organizations to get you past the educational hurdle with the illness... most people just write the disorder off completely and a few extra names seems like it would be helpful to get people to take a second look at it

    as far as a list of things to ask them for and being specific, you are definitely correct... they usually tell you to go in with a very definite ask.... but i'm at a loss to think of any that our community (CFS Patient groups at large) have clearly defined and collectively defin... demands endorsed by an organization only fly if they can leverage those demands with constituent responses... whether its mailngs, protests, pr time whatever,....a lot of patients groups and individuals seem to write letters and reach out to officials about CFS issues... but we need to all be saying the same thing for it to be effective.... what we need is a set of goals that all the cfs/me organizations can agree on... people that don't understand our illness can't wade through a large number of similar yet distinct demands being made by this many different groups...its even worse when these demands are themselves concern taking action on beurocratic processes that are confusing and esoteric to those not involved with the agencies... we need to codify our demands first ... down the road it could be turned into a "CFS Health Relief Plan" ... a work plan that could be adopted by multiple groups

    (i'm just thinking "outloud" here)

    a reasonable target for research funding (earmarks for XMRV research, viral research, etc...).... i'm not just saying more.... i think 60-100 million would be a fair start.... but whatever number, its got to be one everybody uses.

    changes to disability and home healthcare options- explicit coverage by americans with disabilities act

    changes to insurance regulation regarding disclosure, etc... it would be good to take a look at what privacy considerations HIV groups have sought for HIV+ individuals

    Once its turned into an action plan .... "CFS/XMRV Health Action Initiative..." or something fancy, then its just a matter of getting leaders to sign onto it in principle...

    our community seems to be on the cusp of completely reorganizing itself. as the news of XMRV spreads its changing the way we perceive ourselves and the way we subsequently organize ourselves politically. i think that this will change the nature of our demands, the way we specify them, and the response we get.

    don't get me wrong... im not saying that the results of the meetings with the CDC and CFSAC and demanding better communication are bad goals... i'm not saying that they are not good steps forward.... i guess i'm saying that we could change the playing field ... put it back in our court so to speak... by reorganizing our message... and demonstrating a unilateral show of force we could push the discussion forward. so many of our previous goals have been essentially beurcratic in nature... redefining classifications, moving comittees around, ... all good things, but new information will draw us into a new phase of activism.

    just my thoughts....
     
  15. alex3619

    alex3619 Senior Member

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    Hi Hope123,

    I like what you have to say, but I think you are thinking too small. Every country with their own ME or CFS society should be part of this, with every politician - and those responsible for health matters should be highlighted and given special attention. Think big, act local.

    Bye
    Alex

     
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Obama used Internet effectively to help win the election. In the beginning, he was considered a long shot.

    Tina
     
  17. Sasha

    Sasha Fine, thank you

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    Hi, Judderwocky - the answer is "zippo", apart from joining in with petitions and writing letters. That's why I was reading Shirky's book, because I'd read a review saying that he had ideas on how people can colloborate for good purposes effectively at this stage of the internet age. I take your point that he doesn't seem to have direct experience of advocacy but his research interests are in looking at social networking and other new facilities on the net allow people to come together for socially benevolent purposes more effectively so I thought his work would have something to offer.

    I'm impressed by your knowledge and experience in this area though, and reassured by what you say about the effectiveness of e-petitions and emailing campaigns. Although the peanut campaign was successful, many similar ones may have failed but we therefore wouldn't have heard about them.

    I wonder if your reply to my comment might be edited into an article or something for your new site? You're clearly coming from a position of being immersed in a long experience of expert advocacy but ordinary bods like me who don't know this stuff probably often wonder if our emails and e-signatures work. I found what you said both fascinating and convincing! Thanks for taking the time to write it. :Retro smile:
     
  18. judderwocky

    judderwocky Senior Member

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    you know i might just throw something up like that on the site now that you mention it..... i think the best way to go is a mix... but i really really feel with what you are saying about limitations of how far we can actually campaign... even working on this new site has all my symptoms flaring.... when it comes down to advocacy a lot of it would be brutal for someone with CFS... standing on a street corner waving petition signs would be out of the question!

    they say neccessity is the mother of invention... as a community we are just going to have to be the most creative at reaching out from our homes....
    a lot of big campaigns have the convenience of organizing at fundraisers, student luncheons, lectures, meetings, etc... things that involve meeting in person... i think we are going to be unique in that a huge chunk of our 'organizing ourselves' is going to come from our own homes.... we're all tech savvy people... we've had to be ... isolated in our homes, not going out... it limits the ways in which you can interact with people... we need to start seeing that in some ways this gives us an advantage... we know how to move across social networks, we know how to reach out in ways that other communities don't.
     
  19. Sasha

    Sasha Fine, thank you

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    Flaring symptoms? Take care of yourself Judderwocky, we need you!

    I agree our possibly unique challenge is that we mostly can't get involved in physical advocacy and have too few proxies (family members etc.) willing to do it. So far! Maybe that will change when the "we" moves from people with CFS to people who are XMRV+. PWX will not all be as ill as those diagnosed with CFS, if they are ill at all (many may be partners of PWC who have found they are XMRV+, or the worried well).

    Meanwhile, maybe it's kind of exciting that we'll need a unique approach for our unique situation, if we can come up with ways to make it "different" rather than "limited". I think having an XMRV site like yours is the first step in that.
     
  20. Hope123

    Hope123 Senior Member

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    I'm too tied to quote previously from what you wrote, Judderwocky, but here is what I think. Advocacy is not my area (science is) but I know a few people who have been in CFS advocacy for 1-2 decades. Some of them are still enthusiastic but many are in declining health.

    1. The things I have asked for were in conjunction with "asks" spearheaded by other groups like the CAA (CFIDS Association of America). I feel to get a message across, it must not just be repeated but repeated in different ways as different people/ offices might respond to different techniques. In the past the CAA has done national e-mail campaigns urging people with CFS to e-mail their reps. People in my support group do this but they also call and go to rep's local offices as health allows. Unfortunately, the illness prevents us from doing more. In the FDA/ NIH paper case, I also mentioned that 600+ people had signed your petition which did catch the interest of the aide.

    If you are not familiar with CAA past advocacy: http://www.cfids.org/advocacy/default.asp

    2. In my prior work life, one of my mantras was "don't re-invent the wheel" and "beg, borrow, and steal ideas" (I don't mean illegally of course). The largest CFS group out there is the CAA but I don't see them coordinating their work with the more active (and effective IMO) state groups, which unfortunately exist in only a few states, and other groups for legislative action. Other patient advocacy groups have state/ city chapters; CAA does not. No one has really harnessed the full national power of patients much (not saying it's easy!) in this illness. The WPI is doing a good job but they can't do everything.

    3. The federal CFS advisory committee (CFSAC) puts out recommendations every meeting that can be used as big "Asks" but no one has really followed it up or run with it. The gov't has implemented <20% of CFSAC recommendations; often, they don't even get a reply. The CAA did recently include in one of their e-mail campaigns these recommendations but that is relatively new. The biggest "ask" I see and think is important is establishment of CFS Centers of Excellence nationwide which can support CFS research, treat patients, and train healthcare staff about CFS. This has been suggested by the CFSAC for 5 running years.

    http://www.hhs.gov/advcomcfs/recommendations/index.html
     

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