Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Don't Assume They Know

Discussion in 'Action Alerts and Advocacy' started by Andrew, Mar 23, 2010.

  1. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Some time ago I contacted one of the CFS Organizations and gave them a heads up about a breaking issue in CFS. Other pwc had advised me that this is not necessary, because in their position they would already know.

    I contacted them anyway, with a brief explanation of the breaking issue. Only a few sentences to make it easier for them to get the gist of it and easier for me to write. They immediately emailed me back thanking me for bringing this to their attention, and asked if I had any other information that could help them get started. So I sent them the most pertinent links I had.

    I'm not going to tell you which group this is, because my post is not about which group knows what. It is just to mention that even people in the thick of things need help being alerted to issues.

    In my younger days I did activism work, and none of us automatically knew everything. And often it was tips from the public that helped us zero in on things.
  2. MEKoan

    MEKoan Senior Member

    Dear Andrew,

    Ever the calm voice of reason. I love your voice!

    I will remember your words.

  3. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Very good point Andrew!

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