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>>>>> Help ME Circle <<<<
>>>> 25 November 2011 <<<<
Editorship : j.van.roijen@chello.nl
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Reference:
*Chronic Fatigue Syndrome &
the CDC -A Long, Tangled Tale*
by David Tuller
Help ME Circle, 24 November 2011
Co-Cure: http://j.mp/uCTOuz
~jvr
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Cindee Rice <cmarie3@cox.net>
Re: CFS & the CDC -A Long, Tangled Tale
Mary S,s illness of acute onset mono, then CEVB
mirrors my story.
I got this in 82, and we lived in the outbreak area for
years. After acute mono struck me down with an infant
and three yr old to care for...it continued on with over
five years of registered fevers, swollen glands, polaroid
vision, fainting, pain severe exhaustion after
ANYTHING, evev 13 Hours of sleep at night.
Then followed by years of bouts of Bhronchitis in the
90,s and other acute viral illnesses on top of the ebv,
also 12 years of psuedomonas ear infections that
started shortly after acute onset mono. 'Female' staph
infections. Rashes, oozing itchy blisters, etc etc etc.
We can feel our brains- pushing on our eyes and
skulls...hot. painful, difficult to describe. How can
anyone understand the horribleness of this day in, day
out, unless they have sadly walked in the same
shoes?
My children have never known me healthy and my son
was conceived during that fifth yr and contracted
it...but I never even knew he could.
Where were/are the doctors?- where are those who
care if we stop breathing at night? This is the most
awful, grueling illness. My son suffered a rare stroke
with brain blood clots with total occlusion of major
veins, cutting oxygen in his brain, stopping
circulation..so his heart tries harder, beats faster. We
are already starving for O2 in our bodies.
I beg the agencys to help. I plead with every fiber of my
being for them to stop the madness, ignorance, mal
treatment and neglect that's now gone on three
decades.
Provide the funding for TREATMENTS. They are
already out there....get the word out to the patients
and doctors, start trials now please please for the
sake of our children, if not for us.
How many generations does it take before we get help.
Its heartbreaking to see your loved child suffering in
many ways even worse, day and night; Drs ignoring
glaring symptoms due to ignorance, and the cover up
of this immune dys illness....at the time HIV was
outbreaking. Because I was ignored and not treated by
any Dr, my son inherited this virus and immune
dysfunction, possibly at birth, maybe in utero.
This horribleness affects our CNS, causes abnormal
blood clotting (thus the stroke /which I learned could
happen AFTER, a rare consequence of EBV! ); terrible
neuro- immune, and endocrine diseases. Disabling
pain, viral illness, the lowest quality of living, inability
to DO what you want and did before. Like walk?
Work? LIVE!!!
The high non stop pain in my sons brain/head would be
more than anyone could bear ...then add the virals
affecting every part of your body. He has to remain on
coumadin, has osteopenia at age 23.
Both have fms dx's, insomnia or too much sleep. Mcs
now too. We never know from day to day or moment to
moment if we will feel better, worse, sleep that night,
or not. We have not had even a hint of a good day,
even a moment since being driven to be seen and to
RECEIVE treatment, wich we have yet to
receive....please help us receive what we endured to
receive, please.
My son says he now feels like an OLD man..and his
life as he knew it was just beginning. We believe he
has never known what Healthy! feels like.
He was hospitalized at 1 month with critical low oxygen
sat rate. Symptoms same as mine increased as he
grew older and severely so at puberty...he just thought
that was normal...to have pain and exhaustion all his
life...around puberty the fevers, swollen glands and
upper respiratory infections became very frequent after
any physical exertion.
I have more photos of him sleeping than any other. And
naively I didn't know until he started showing similar
symptoms and didn't want to believe it.
We tried so many protocols, still no Dr could help. He
couldn't work a job without weeks of viral illness as a
teen. He has positive viral tests, Dr. Didn't even inform
us it was positive. When we finally saw the labs he
replied,"why tell him, there's nothing we can do about
it anyways".
I couldn't even imagine this could happen to him. I had
never even known or heard of a young man, just 21,
having a stroke and brain blood clotting! Its nearly too
much to hang in there anymore, especially now, when
we think we have finally found some people who care
and will treat us...then ignored....again.
It is all I can do to hang on to the promise given below,
18 years ago. The one I hope comes soon.
~~~~
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