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Otis, I whole heartedly agree that We Must Speak Up as a united patient base. Each can uniquely contribute without rubber stamping CAA drivel that gets us nowhere! Those days are over.
my statement reflected the point of view from those with limited funds to apply toward our illness, while the Whittemore Peterson Institute can't get funded from our Government's taxpayer monies ; And a mention about the total lack of funding across the board for CFS/ME due to a hostile political environment created by bottom-line CDC failure to engage the illness via studies & development of treatment, and their present day paranoia caused by their liability in this failure.
it won't get a mention on air, but i sent my most important message as I see it. Educational at least ,hopefully.
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PLEASE, if you haven't done so, send your message,too. don't let this national exposure quietly go by.
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Actually, I see that Iwrote a lot more after retrieving it: to CBS Evening News w/Katie Couric
@CBSNews.comFeedback
I want to put in my viewpoint on the upcoming story about Chronic Fatigue Syndrome. First, that name is despised by every patient I know because the Myalgic Encephalomyelitis Disease is so much more than debiliting fatigue. It is a progressive illness leading to cancers, heart failure, digestive failure, whole-body inflammation, extreme sleep didorder, ad infinitum plus the constant fatigue for which we are so infamous: and let me say it is a horrible impairment in itself.
Many patients with this condition can't afford medical attention and yet the US Govt will not provide funding for places that that would help us. Top of this list is Whittemore Peterson Institute in Reno,NV, on the campus of Univ of Nevada,Reno, with facilities and proven ability in research, yet the political climate enveloping "CFS" sees that no funding comes down from the NIH or the CDC to them. This climate began when the CDC mismanaged allocated monies to the "CFS" program, and spent it on other projects, thus beginning over 25 years of neglecting a tremendously ill patient base.
Presently, because of their original sin, CDC refuses to allow funding to our disease to come out...because once it becomes known that they have shirked their duty to the Americans afflicted by their neglecting "CFS", the upcoming cost to treat us will be staggering compared to what it would have been originally. They are terrified of a class action lawsuit that will come from this neglect,and by the knowledge that they have let a Retrovirus go unchecked into the American blood supply. Heads will roll! and they know it.
The current pandemic of the XMRV retrovirus is heading toward a world-wide plague, fomented by the CDC inaction. And they want to talk about "how exercise will help us", on your show? just another diversion.
I really hope this message gets to Katie. It's the Truth.
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as you see, i'm done pulling punches on this. perhaps better editing was possible, but it was a 1 1/2 inch window provided for typing into, and extemporaneous message. anyway, it's done. let the fallout begin.