It is at the point where the Patients are NOW
educating the Dr's.. ta Heck with whether you even
HAVE "medical insurance" what good does it DO
if the Dr's have NO Idea what you have?
They look at you like
"IAIYH" aka "It's All In Your Head."
Turns out there was a Big Outbreak of this same
thing up near Lake Tahoe (Incline Village) in the
mid-1980's and the medical community "took notice"
and sent researchers from "Around the World".
Over the course of a few days they took "Histories"
from all of the patients and "en masse" they
DECLARED that what they HAD was called
But then... since this WAS in the USA
the CDC finally showed up late, as usual,
and did their questioning and at the end of
their process declared that EVERYONE of the other
Medical Organizations WAS WRONG and they
decided to re-name this illness with a
"made-up name" that ONLY labeled it
"by ONE of the symptoms."
(sub-text: one belief is that since this was
occurring at about the same time as the
"new" discovery of AIDS, the CDC did not
want everyone panicking that there were
2 epidemics going on at the same time.)
HOW STUPID can you get? So now this
World Disease of which there are 28 million
called ME, in the USA is called
"Chronic Fatigue Syndrome" among a few
other similar names. That's like saying one of your
symptoms is chest pain so we'll call your illness
"Chest Pain Syndrome" but forget about the
Heart Attack you just hard and ignore all of the
things that caused it, and we will move like
"Molasses in Winter" in trying to do any Research
for it...and Hello it has been 25 years now since
this outbreak. Can you say 28million equals
There are NOW many Worldwide orgs. researching
for ME, but the CDC and USA are lagging WAY
behind, just like we have in the Research for
Stem Cells in the last 8 years.. where the rest of
the world has been doing stem cell research for the
last 18 years.
There are ONLY 2 Dr's that were UP at
Incline Village that have continued to Follow this
illness and done their OWN Research..
Dr. Cheney & Dr Peterson.
Dr. Cheney has now just finished a year of
NEW Research and is finding that for
long standing cases the only thing that finally Helps
because of all the damage done to our
entire systems + organs over the 20+ years is
Stem Cell implants http://cheneyclinic.com
Due to the lack of Stem Cell Implant locations in
the USA and the FDA lack of support for them,
he is forced to take patients abroad for treatments.
How stupid is that CDC?
"Get Your Act Together" PLEASE.
Dr Peterson has partnered with a backer and has
formed the WPI = Whittmore Peterson Institute
http://wpinstitute.org on the campus of the
University of Reno, NV., "WPI for
Neuro Immune Disease exists to bring discovery,
knowledge, and effective treatments to patients with
illnesses that are caused by acquired dysregulation
of both the immune system and the nervous system,
often resulting in life long disease and disability.”
I give MUCH Praise and Thanks to these 2 Pioneering
Dr's that have the Conviction to Continue doing the
Research that the CDC is dragging their feet on..
So that's ONLY Part of my back-story..
I will add other articles and past & current attempts
on this blog of my Attempt to "StandUP2ME"
cuz Hello CDC ~
"CFS" is NOT what I or the rest of the 4 million
in the USA have. So because of the CDC"s definition
of this illness we have been described "out of having"
what we DO have , and cuz we don't live OUTside the
USA we can't get the Correct Diagnosis of ME,
so "we can NOT get" any other Dr's or Courts to
acknowledge "What we DO have" or
Help us in any way..Medically, Emotionally, Financially,
Supportive in-home Services, online training for Help
to get trained to even DO some job online from Home
so we can support ourselves, we & those that
"Have Families" are left to fend for ourselves..
It's REALLY Embarrassing that this Great Country
not only does NOT have any kind of
Universal Medical Coverage for ALL, but that they let
the CDC & FDA be pawns and NOT "work FOR the People"
of this country like they should Properly be doing..
to be continued as long as
I am Alive..
ME/CFS Awareness Day
2 years ago