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vrijdag 25 maart 2011

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http://www.name-us.org

The National Alliance for Myalgic Encephalomyelitis was established to address the issues of recognition and definition, and to raise awareness of this devastating neuroimmune disease
that has afflicted nearly a million people in the U.S., and millions worldwide.

"M.E., whether we are discussing primary or secondary forms, involves a significant diffuse injury
of the Central Nervous System and an associated injury of the Immune System."

-Dr. Byron Hyde-

Myalgic Encephalomyelitis (M.E.) is a neuroimmune disease with serious immune and cardiovascular abnormalities and resulting serious CNS (central nervous system) consequences due to brain injury. The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, and cancer.
Myalgic Encephalomyelitis is a clear-cut, definitive diagnosis with tests that can show the effects of M.E. such as: SPECT and PET Scans, Natural Killer Cell Function test, Rnase-L antiviral dysregulation, and Blood Flow. Infectious onset is most commonly observed. Antivirals and immune modulators have shown promise, but funding for clinical trials has been scarce. Few patients have had the resources and professional care to obtain those treatments off-label.

So most diagnostic tools and treatments have been denied to the majority of patients, due in large part to government and insurance industry politics. As a result, most patients are left to suffer lifelong disabling chronic progressive illness, and die significantly earlier than the norm with minimal or no treatment. Many lose some or all of their livelihoods. Most are maligned in the same ways that MS and AIDS patients were in previous decades. Most have significantly shortened life spans due to complications arising from M.E. And no one is immune; anyone of any race, age or gender can get M.E.

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