The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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"Yes we Can!" A call to strategize, by the Pugilator

Discussion in 'Action Alerts and Advocacy' started by WillowJ, May 31, 2011.

  1. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    Johan has some words of encouragment and says to both take action now, and research effective strategies.
  2. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    You're damn right, Pugilator...
  3. Nielk


    It's a great slogan but, unless someone can come up with a very novel idea, I can't see how.
    Yes, we are smart, educated, some are even in the health and science field and we haven't been able to fight this yet. Why?
    It's not for lack of desire to regain our health. I'm sure I am speaking for everyone here that it's our #1 priority.
    Why do we keep bumping walls?
    It boggles my mind. (or what's left of it anyway)
  4. In Vitro Infidelium

    In Vitro Infidelium Guest

    Slogans can be important rallying points, but they have to reflect two realities, one is to accord with the language of those who are to be rallied, the other is to accord with a realistic appreciation of that which is to be rallied for, or rallied against. Johan has certainly achieved the former in the sense that his slogan plays to the gallery of those who want to rally against a perceived enemy psychiatrists and other delinquent medics, but its hard to see how casting M.E/CFS affected people in the role of anti psychiatry activists addresses the reality of a research agenda.

    Smart and educated does not always mean well equipped, and placing a problem in the context of a fight is not always the best way to win. In my view the biggest wall that diverts M.E/CFS affected people from achieving effective advocacy is desperation and the need for a quick solution, which often translates into any solution. The reasons for the desperation are wholly understandable but it is nevertheless an obstacle, it leads to incomplete thinking which actually inhibits any collective strategic activity because people end up chasing down their own pet notions, rather than applying a reasoned approach to defining what the problems are and arriving at some agreement about what could be achievable.

  5. Nielk


    Who do we really believe is behind all our setbacks?
    Seriously, I would like to see some educated opinions here.
    You can't fight something when you don't know who the opponent is.
    Is it the ego of the scientists, that they each want to take credit for THEIR findings?
    Is it the Insurance Industry who don't want another major disease on their hand to deal with?
    I personally, would follow the money trail.
    We can't start a fight if we don't know who the opponent is.
    The fact that there is an opponent, I am convinced of.
    These things just do not happen on their own.
    Is the insurance lobby putting pressure on the science journal to recant the Lombardi paper?
    It wouldn't make sense otherwise. It doesn't make scientific sense that just because other scientist
    have not come up with the same answers, our paper has to go? What kind of science is that. I can understand, if they have proof of cheating or misleading information but, then they would just recant on their own and not ask them to do it.
    The idea that there was contamination in the lab or somewhere in the process also does not make any sense because they would have found it in the same amount whether it was blood from CFS patients or the controls.
    WPI still keeps coming up with positive results for patients who send them their blood. Not everyone gets a positive result so they pick and chose where they are going to contaminate?

    They have found that patients who are XMRV+ have a better success rate when being treated with Ampligen. This is not only from Hemispherx but from doctor's and patient's accounts. How do they explain that?

    There is something very wrong here!

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