Folks PLEASE get your Emails OUT to firstname.lastname@example.org -
Monday 5pm EDT-USA DEADLINE
Thanks and Blessings to you all
TO: CFSAC, President Barack H. Obama, VP Joseph Biden , DHHS Sec. Kathleen Sebelius, ACLU (Washington, D.C.) Chair, House Energy and Commerce Committee, Chair, Senate Health, Education, Labor and Pensions (HELP) Committee
Welcome new Members!
I thank you for your service to us, the patients without a voice.
Today the name of my Statement is SCRAP the CRAP, for some of us want to tear the Charter to pieces in front of the three major networks’ cameras, but heck, they too have abandoned us to the psychobabblers.
Dr. Jones, I honor you for your administration of these meetings. Thank you for the streaming video; however, could you get “audio only” added for the dial-up connections? I also ask for a return to 5-minute statements, and that these be added to the language of the Charter.
Now, regarding “scrap the crap”: I am so dismayed that at this vital time, when real science is finally showing the distinct possibility that a retrovirus may be either the cause or a serious contributor to the long-term effects of CFS (such as cancer and shorter lifespans), we are discussing the Charter. Didn’t the last two meeting of the CFSAC show where its priorities lie?
I therefore demand a return to the science and that the Charter be changed to reflect the true name of this disease, which is Myalgic Encephalomyelitis, or M.E., as the Canadians,and other enlightened nations have done, and which has been recognized by the WHO for over forty years. In addition, I demand the M.E. diagnostic code be reinstated in the U.S. at once.
The CFSAC Charter should be renamed the CFS/ME Advisory Committee in accordance with the above, in order to maintain their intertwined relationship in research and scientific studies.
My last request (demand, if you will) is that patient’s be given a stronger voice, by including language in the Charter that would allow the CFS/ME-AC to request a Congressional Inquiry into the lack of responsiveness from the DHHS to the Committee’s past recommendations; and further, investigation into the violation of patients’ human and civil medical rights from the lack of appropriate testing and treatment for a known disease process; if, after 60 days, the Committee’s recommendations have not been addressed by the DHHS, in writing, and with actionable intent, with Internet access to same.
The junk psychobabbling of the CDC (the crap) must go; science must be admitted and funded through the NIH, immediately, taking all the latest science into account in order to protect the world’s blood supplies, future generations from disability; and to prevent lack of future tax revenues.
Thank you for today, (which should have been two), on behalf of the three of us living together, (two blood related and one a significant other of 25 years): all with CFS/ME! P.S. thanks, Mary and Erik!
Mary “Fiba” Arispe