jackie
Senior Member
- Messages
- 591
I dont know about any of you...but this "period of time" we are living in now....is the FIRST time (in all the years of my illness) that I have had relatively easy and quick access to the various "Educational Materials" (from many sources) that were probably a driving force behind many of the worst aspects of any mistreatment/ignorance/apathy I was subjected to, by my Health Care Professionals (in some areas I received adequate care...usually because I learned what I could, bit by bit, and fought for it).
With the formation of PR I can now read and evaluate and, if necessary, find (what I determine for myself) are faults with the outdated and unproven and at times manipulative and dangerous information.
Cort has opened up one big wonderful and glorious can of worms here...and I am grateful!. Now maybe we (and this disease) can finally "get" somewhere! But what a fight it's going to be!
I'm not going to shut up or accept or look the other way or assume that I don't know my own disease or body BETTER than someone conducting a Study with %'s, or ANY Doctor or ANY Research Group or ANY Advocacy Group...knows! I feel that I, and the countless other PWC's living a half-life with me/cfs KNOW MORE...in terms of treatment for daily living! (and we know when advice for us is just plain wrong and we know when we are being hood-winked, too!) I don't think I'm alone in feeling this way...not judging by the hundreds of comments and responses on this thread!
Am I sensing a gigantic, collective bellow of rage and protest building up, rumbling and growing stronger and ready to be joined with the many weary and sadly faint ones from other Countries even MORE disenfranchised....the din soon to be heard around the world? One great big SCREAM! I certainly hope so.
I call for no more lies, no more subterfuge, no more cover-ups, no more double-speak from the CDC or anywhere else.
I'm stunned that the CDC has not responded to the request from the CAA to remove their "name"...and I'm stunned that only the NAME was requested to be removed from what we believe to be the offending material. (lets not forget...Oslers web was written for a reason) j
With the formation of PR I can now read and evaluate and, if necessary, find (what I determine for myself) are faults with the outdated and unproven and at times manipulative and dangerous information.
Cort has opened up one big wonderful and glorious can of worms here...and I am grateful!. Now maybe we (and this disease) can finally "get" somewhere! But what a fight it's going to be!
I'm not going to shut up or accept or look the other way or assume that I don't know my own disease or body BETTER than someone conducting a Study with %'s, or ANY Doctor or ANY Research Group or ANY Advocacy Group...knows! I feel that I, and the countless other PWC's living a half-life with me/cfs KNOW MORE...in terms of treatment for daily living! (and we know when advice for us is just plain wrong and we know when we are being hood-winked, too!) I don't think I'm alone in feeling this way...not judging by the hundreds of comments and responses on this thread!
Am I sensing a gigantic, collective bellow of rage and protest building up, rumbling and growing stronger and ready to be joined with the many weary and sadly faint ones from other Countries even MORE disenfranchised....the din soon to be heard around the world? One great big SCREAM! I certainly hope so.
I call for no more lies, no more subterfuge, no more cover-ups, no more double-speak from the CDC or anywhere else.
I'm stunned that the CDC has not responded to the request from the CAA to remove their "name"...and I'm stunned that only the NAME was requested to be removed from what we believe to be the offending material. (lets not forget...Oslers web was written for a reason) j