The CFIDS Association of America, Inc.
April 25, 2011
I am dismayed by the nitpicking I see in the ratings here. This is the major patient support organization in this country and has been for a very long time. And efforts to change leadership, like efforts to change the name (to what? - this has been hashed and rehashed with the conclusion that we need to wait) are in my mind a step backwards. We don't have that kind of time, nor should we weaken the association as it struggles to get the national support we need to take on this terrible illness. I've had cfs since 1977, before there was a name. This association has been a major factor in the fight. Other cfs organizations over the decades have come and gone. And still others have joined in the fight. They have all worked and/or continue to work towards the goal of defeating cfs in their own ways. If you don't like the association, join the others. Build. But don't tear down what has taken decades to create. They shifted from an emphasis only on research to advocacy because there was no way we could produce the resources on our own, especially since most pwcs can't earn. We need government resources. Only on that scale can we tackle the research, and the education of the medical profession. And still the association works at research on its own too. I have mostly appreciated the evolution of the association as things have changed over time. And will continue to support it even if I may disagree with some aspects. I won't cut off my nose to spite my face. For those writing with such emotion, I understand the pain of lives decimated. But look within and direct our pain more productively. There are no answers.............yet.
I've personally experienced the results of this organization in...
In 1977 there was nothing. A desert. No support from an association, the medical profession, even family. The association was the second that I was aware of. And the one that survived and grew. And it kept its feet on the ground. Let fact lead, not fantasy discredit. It became a lifeline, a link to hope. It has kept many of us alive and given us a way to fight. To fight disbelief, ignorance and high-minded blindness. It validated.
Ways to make it better...
If I had to make changes to this organization, I would...
I'm hoping that the association is taking in any good ideas that come along. I've no obvious changes to suggest but am required to write something in this section.
Client Served & I've supported this organization with hard earned money for decades.
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