I've just started reading Clay Shirky's book "Cognitive Surplus" in which he describes the effect of the internet on collective action, among other things. He describes how a bunch of teenage girls in Korea, connected via a boyband fan website, started talking about a sneaky government decision to start re-importing US beef despite Koreans concerns that it might be infected with BSE. They began a protest that went onto the streets of Seoul and nearly brought down the government.
My point (you were wondering!) is that Shirky explains that the worldwide web has changed everything about activism. Groups with a common interest can now find each other and connect at zero cost via the internet. If they have a shared goal, and if the group is very large, only a tiny fraction need to be active for there to be thousands, perhaps tens of thousands of activists working together.
If XMRV is really "it" then once people start to get diagnosed with XMRV rather than difficult-to-pin-down ME/CFS, they'll automatically be an interest group with a clear identity, and a very highly focused one who can find each other and connect easily via the net. If the 4% background rate for XMRV is remotely accurate, that's hundreds of millions of people worldwide. In the face of those numbers, collective action to get funding and push against barriers to XMRV research and treatment is a whole new ballgame.
For now, people with CFS who can take political action are a relatively small group; our condition is hard to diagnose and only a minority with the condition are diagnosed. Most of us only get diagnosed at a point where we're too sick to be active in protest or collective action. Those who are less sick are mostly too busy struggling to maintain their working and personal lives to spare energy for activism, even if they know they have CFS. XMRV would be another story entirely; people with our disease would be clearly identified and healthy people would be finding out they were XMRV+ and would want to do something about getting research funded and progressed in case they get sick later.
There has been a lot of anger about the treatment of Alters NIH/FDA paper and frustration at our impotence, as a community, in getting the story noticed, let alone treated seriously by the media. But when millions of XMRV+ people are connected on the net, we would be the media. Just as (Shirkys book explains) news of natural disasters now appears via bloggers and tweeters on the net before conventional news outlets, so those same news outlets would be forced to respond to a story already appearing in front of millions on the net, rather than the few hundreds that CFS groups can currently muster.
I had been thinking that XMRV, if it turns out to be the cause of CFS, really would be a game-changer; but it's sinking in that it would be a much bigger game-changer than I had thought.
My point (you were wondering!) is that Shirky explains that the worldwide web has changed everything about activism. Groups with a common interest can now find each other and connect at zero cost via the internet. If they have a shared goal, and if the group is very large, only a tiny fraction need to be active for there to be thousands, perhaps tens of thousands of activists working together.
If XMRV is really "it" then once people start to get diagnosed with XMRV rather than difficult-to-pin-down ME/CFS, they'll automatically be an interest group with a clear identity, and a very highly focused one who can find each other and connect easily via the net. If the 4% background rate for XMRV is remotely accurate, that's hundreds of millions of people worldwide. In the face of those numbers, collective action to get funding and push against barriers to XMRV research and treatment is a whole new ballgame.
For now, people with CFS who can take political action are a relatively small group; our condition is hard to diagnose and only a minority with the condition are diagnosed. Most of us only get diagnosed at a point where we're too sick to be active in protest or collective action. Those who are less sick are mostly too busy struggling to maintain their working and personal lives to spare energy for activism, even if they know they have CFS. XMRV would be another story entirely; people with our disease would be clearly identified and healthy people would be finding out they were XMRV+ and would want to do something about getting research funded and progressed in case they get sick later.
There has been a lot of anger about the treatment of Alters NIH/FDA paper and frustration at our impotence, as a community, in getting the story noticed, let alone treated seriously by the media. But when millions of XMRV+ people are connected on the net, we would be the media. Just as (Shirkys book explains) news of natural disasters now appears via bloggers and tweeters on the net before conventional news outlets, so those same news outlets would be forced to respond to a story already appearing in front of millions on the net, rather than the few hundreds that CFS groups can currently muster.
I had been thinking that XMRV, if it turns out to be the cause of CFS, really would be a game-changer; but it's sinking in that it would be a much bigger game-changer than I had thought.