• Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!
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CFSgate is AIDSgate.

I am a CFS/ICL/Non-HIV AIDS patient.

I remain infuriated by my government's betrayal of her people. Most CFS patients believe that their government has their best interest at heart, and sadly that is entirely untrue. So, to a lesser extent, I remain bothered that CFS patients' do not question authority and demand action of their employees. The government works for us...not vice versa!

I think it's great that CFS patients like to chit-chat amongst themselves in web forums. But, CFS is not science. A syndrome is a syndrome, not a disease. CFS is 100% a political paradigm, and in order to make any progress with CFS research "getting political" is the only solution.

To this day, from my bed, I continue to write at least 12 letters per day. Here are some examples of responses that I've received over the years: http://cfsstraighttalk.blogspot.com/2005/07/few-highlights-of-my-plight.html In my healthier days, I was traveling all over the world working with scientists, and the doorways kept opening for me.

I can only imagine the profound possibilities of what would happen if every CFS patient started writing 3 letters per day.

U.S. representatives can be found here:

Anger + Action = Activism



I didn't realize that was your blog. I've read you before. But it seemed like you hadn't updated it in a long time, so I always wondered what happened to you. You were like one of the very few who ever talked about CFIDS possibly being HIV Negative AIDS. Anytime I ever brought it up anywhere, people tried to shut me up.
Sadly most people in general, including cfs patients, do seem to believe that their government has their interests at heart - and of course it is untrue. The exact opposite is closer to the truth.

I am SO glad to see someone talking about this here, or anywhere! I completely abslolutely agree w/ you, re: disease v. syndrome, and it being a politcal paradigm. What else could explain the CDC choice of "cfs" for such a deadly serious outbreak of illness?

But - just like Carrigon mentions above - you should see the looks, and/or ignorant comments, I get when I have ever tried to explain this to anyone.

I also think there are - unfortunately - way too many of us living like I do - alone, w/o any medical/social/public support and barely managing to survive .... making even something as seemingly small as writing even one letter virtually impossible most of the time.

Thank you for your blog, your activism ... I'm personally so glad to see someone talking it about it in these terms.
Take care,
Thanks for doing the advocacy!

I agree most in governments are useless when it comes to working for the people. There are a few well meaning congressman and other officials, but the system is set up so that the lobbyists and corporations are in complete control.

When you get right to the heart of what it would take to change things, it would take getting the money out of politics. My signature states my position for changing the system.

If Obama stays in office, we are screwed. If Gingrich or Santorum gets in we are screwed.If Obama gets in again, we are screwed. If Romney gets in maybe things will be screwed a little less. If Paul gets in, it's a game changer. He is the only guy who understands and is willing too pull the plug on the military industrial complex, and the corporations running the country into bankruptcy with wars and sickness.

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