xmrv action site

[Hope123]

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

Tina

Very true but they also did door-to-door, houseparties, and the like. My neighbors held a combo party/ phone event for Obama where people called "vulnerable" areas to get people to vote for him.

 

[Cort]

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?

The Sock To ME/CFS effort comes to mind....everyone sends a sock to their representative....or we target one representative and send him socks.

 

[bakercape]

Awesome

idea/ concept. Thanks for doing the site for all of us.:Retro smile:

 

[judderwocky]

idea/ concept. Thanks for doing the site for all of us.:Retro smile:

Anytime!!! I am pleased to announce that the recent site updates are now complete.... User's may now select from 6 different themes to personalize the blogs... They aren't very "different" yet... but basically you can change the overlay to specify prostate cancer, CFS, or XMRV... there is a light and dark theme for each group. I hope to add more themes in with some diversity in the textures and hues ... Logo plates have all been updated and Im putting as many of the articles and publications about XMRV as I can find... right now a lot of the press releases and studies are available as pdf's ... which can be embeded into blogs and passed on through twitter.... the idea was to give people a way that they could quickly move information about XMRV and cfs to their family and friends... so i will hopefully be adding friend connect and facebook functionality... but i'm waiting on rebuilds to the connection software to be made public before i integrate it (i really don't want some unstable java script on my site)... well.. thats my latest update... my signature has both the homepage, and a demo blog for one of the darker hue themes... hope everybody enjoys

 

[judderwocky]

I have changed the site yet again... its all 3-d ish ... but you don't need the special glasses for it ;p

Also I have uploaded a few of the studies in pdf format

 

[judderwocky]

Facebook up!

I finally got the facebook connect module working... facebook came out with a new library for the drupal users and it now works perfect!!! WOOT

EDIT... lol I guess it would help to enable it. /fail

its up for realz now.

 

[citybug]

I think petitions are great for us, being sick, but the hand written letters going out have a big effect. A lot of patients aren't on the internet so printed versions could be signed too. and as network expands could do mail campaign, socks, or thread? hanging by a thread, pennies? a rope, lifesavers?

The thread started with xmrv action, and a lot of suggestions are general mecfs. I think this is the moment for the big ask to be about XMRV. Money and Research. No matter how the studies come out, there still is a new retrovirus they don't know enough about.

The change the cdc definition petition already had 2000 signatures on it. That is another big one, but getting the money out to xmrv researchers and studies going is bigger to me (i don't think we should put too much energy into the cdc).