Tuesday, May 5, 2009

Patients Smash the CDC

The ME/CFS community came out in droves at the April 27th meeting. They were
  articulate and angry and they didn't hold back. It must have been an
  agonizing time for Dr. Reeves who sat through the entire session as well as
  an eye-opener for the senior officials who remained beside him throughout.

  For my take on the meeting check out 'Bringing the Heat: An ME/CFS Blog" at

  http://aboutmecfs.org/blog

  If you made comments to the CDC and would like add them to the list on the
  Phoenix Rising site email me at phoenixcfs@gmail.com . Thanks
 
 

* * * *
It's about time that we had the opportunity to tell them exactly what we think of them, and I'm glad that so many people willingly gave of their limited energies to do that.  I had other commitments, so I couldn't write a testimony or appear myself, but did have the opportunity to edit someone else's and give input to several people, so I knew my points were covered.
If Reeves was agonized, well, it's time he "felt our pain".  25 years is a long time to wait for proper research to be done.  How much more is that delay in finding a treatment/cure costing the taxpayers, versus if they'd found something to help us when we were still young enough to recuperate enough to return to work?  Personally, I've been told I'll never work full-time again because I was allowed to deteriorate too far without proper medications, and I no longer have youth on my side to achieve the impossible amount of improvement necessary.
 
CDC needed to hear that we "the consumers" are not happy with them, and precisely why we are not happy with their constant attempts to create a psychological explanation for a post-viral illness.
 
As I've learned through reading, the polio virus can only be tested for in the first few days; this could be why they don't find an active virus in CFS patients.  But the doctors at CDC, who certainly knew that back in 1984 already, wouldn't consider that possibility; they were too focused on sweeping CFS under the rug as only "depressed menopausal women", even though some of those "women" had names like Steve and Mike and Erik, and some of us were decades away from being menopausal.


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