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XMRV, the media and collective action: A bigger gamechanger than we thought?

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Sasha, Jul 10, 2010.

  1. Sasha

    Sasha Fine, thank you

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    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.
     
  2. alex3619

    alex3619 Senior Member

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    Hi Sasha,

    I think your view is both too optimistic, and too pessimistic, in different ways. First, some optimism: I think 4% is a very low figure. The real prevalence is probably between 6 to 10 percent. This means there are a lot more people who could be interested. Now for some pessimism. Most of the these people don't know they have XMRV. Most wont care, they dont identify with us or consider themselves at risk. We have to make them aware before they can be activists. Its the transition betweeen relatively small numbers of concerned and informed people, and huge numbers of alarmed and demanding citizens of many countries that is the problem. How to get from one to another? Once we solve that, once we can get good science funded and published, and disseminate this effectively to the media, then the process could bootstrap itself to an organic online movement just like you say.

    The only other way I could see this happening is for something to bring it to international online media attention - a hook to pull people in and realize what the issues are. I currently have no idea what that could be.

    You are also presuming that most of the people who should be interested are even on the net. This is highly optimistic. The real issue though is what numbers of people engaging in this discussion on the interent will see a spread to other media simply because the phenomenon is so large? My guess is that it would take tens of thousands of people at least. Mad cow disease was a hot topic in Korea. If I were to guess on what we could score with in most of the world, it would be the blood supply. Yet how do we get people to realize the threat - the public is almost totally trusting that the authorities have it right and that since they haven't acted then it isn't important. How many countries would it take to ban blood donation from CFS for people to catch on?

    I am not saying this to discourage you. I too believe the net has massive potential. Its just that the limitation is always human behaviour - once we get people engaged this will leverage itself to a major phenomenon, but that first crucial phase is likely to be elusive.

    Bye
    Alex
     
  3. Sasha

    Sasha Fine, thank you

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    Hi Alex - interesting comments! I agree that the real prevalence of XMRV may be higher than 4% and that most XMRV+ people won't know they have it, at first. However, the numbers involved are so huge that even if a small percentage of people for whom a test would be indicated got themselves tested (whether with ME/CFS, CDC "binbag diagnosis" CFS, their current and previous sexual partners, the worried well) there'd be an initial critical mass of XMRV+ people in their tens of thousands.

    I started to work through some figures and then got tired and had to stop! Sorry! It was an interesting exercise and your point really made me think about it in concrete terms. But looking just at the 1,000,000 US PWC, say 1/10 know they have CFS (as per Dr Klimas's estimate) and 1/5 of those get tested for XMRV and 1/2 test positive (as per WPI figures on self-referred patients) that's 10,000 people just in the States - all with a definite diagnosis, all scared about infecting others, all wanting their partners tested, all getting onto the internet. And I think those are very conservative numbers, and just the earliest group to get tested.

    I notice that Judderwocky is starting a website for XMRV action, as mentioned on this thread. Great idea, the first seeds!

    It will be interesting to see how this pans out! Sorry my reply is shorter than I had wanted, you had some really interesting comments that I haven't done justice to!
     
  4. alex3619

    alex3619 Senior Member

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    Hi Sasha, I like to see people run the numbers. Even if the results are wildly speculative, we then have something more than a vague idea. I suspect you would have to halve the numbers again (I have not checked your figures, someone can do a crosscheck later) - so five thousand. But wait, if everybody had ten family members or friends who they can interest (vague CFS is one thing, a specific transmissable retrovirus is another, many might come around), then the figure is 50,000. Add in other special interest groups we have not even discussed and this could swell to a million people. The issue still is: who do we go from the current state to million concerned people online? I like the idea of activism sites, and I will have more to say about this later, but for now we need to hear from people who have been long term advocates, and tap their experience. I'm new at this (two years).

    Bye
    Alex

     
  5. alex3619

    alex3619 Senior Member

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    Hi Sasha, just to clarify the reason why I say you might have to halve the numbers again is that maybe only half of the patients are internet active. Bye, Alex
     
  6. Sasha

    Sasha Fine, thank you

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    Hi Alex - yes, the numbers are interesting, especially once we start to factor in people not already diagnosed with CFS (I agree that we could realistically halve the numbers for PWC not on the net due to disability-related poverty but most other households in the US I'd expect to have net access).

    On another thread (about the FDA/NIH study getting published), George writes "Everybody is tired hence, everybody thinks they might have Chronic Fatigue. (come on you know it's true!) Hence, everybody is going to want a blood test to see if they have a virus that is making them tired." I think that's true, especially since XMRV is not HIV (i.e. is not something that could kill you and therefore too terrifying to get tested for). I think it's this testing in the general (enormous) population that will drive up the numbers, in conjunction with other groups who are sick getting tested.

    I agree also that the key thing is then how to organise those XMRV+ who are interested in advocacy, even if it's just doing easy stuff that other people organise such as email and e-petition signing. I'm also new to trying to support advocacy campaigns, but I'm glad we've got experienced advocates like Judderwocky (I see you've also been following his thread about about his XMRVaction site!).
     

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