Journal of IiME Volume 4 Issue 1 www.investinme.org Letter from America Annette Whittermore – Testimony to CFSAC by insurance companies who refuse to pay for diagnostic tests and experimental treatments. How could this happen to such a large group of sick people in this day and age of modern medical technology? Who could possibly benefit by this inhumane treatment of sick human beings? My husband is fond of the quote made popular in the Watergate era: “follow the money”. His take on it is more specific: When something doesn’t seem right, “follow the money”. So if one follows the money in this case, we can perhaps begin to unravel the mystery of this crime against humanity. We know that when this disease was first reported to our governmental authorities, another more deadly illness had recently been identified, HIV-AIDS. Our nation was debating how to approach this new “gay man’s disease”, until it struck a young child and a famous athlete, neither who were gay. Countries around the world were struggling to meet the heavy demands of HIV, when myalgic encephalomyelitis began to take its equally heavy toll on the lives of the innocent. But this disease was a disease that apparently could be ignored. It seemed to impact mainly woman. There was no immediate organ damage that could be detected. It did not kill the afflicted rapidly enough; it only caused a profound disability that could last a life time. However, a life time of disability requires a life time of disability payments and huge medical bills; something no government or private health insurance provider wants to be responsible for. The only way to avoid medical and disability payments for the sick is to claim the illness is due to a psychological disturbance or mass hysteria, blame the patient for their illness and offer cheap psychological treatment and exercise therapy. As long as no one discovers the true cause of the disease, these entities are safe from any expectation of actual medical intervention. A physical disease may remain in the psychiatric domain if it is called a psychosomatic illness; “meaning a disorder in which mental factors play a significant role in the development, expression, or Invest in ME (Charity Nr. 1114035) resolution of a physical illness.” Despite years of private research and thousands of papers describing the physical deficits found in these patients with this illness, our government and medical entities continue to ignore the evidence in favor of those who espouse a simplistic psychological theory of illness. But those who stand to gain by misdirecting research funding can not stop the truth from being revealed. What greater evidence is required to support the request for responsible action than the finding of a new human retrovirus replicating in this population of patients? Knowing the significance of this discovery, why has the US government not asked CFS patients to stop donating blood until the cause of this disease is better understood? Prostate cancer and XMRV research has been made a priority at the National Cancer Institute and major universities as evidenced by the publication of new findings. Yet, there has been no such commitment by those at the National Institute of Allergy and Infectious Disease. Why is this? Are we to blindly and meekly accept that those who suffer from XMRV (who have been inappropriately branded as having a fatiguing illness called “CFS”) are undeserving of the same medical care afforded others infected with a retrovirus? I believe this is not the time to end the CFSAC but rather a time for the CFSAC to exhibit its commitment by sending its strongest recommendations to the Secretary of Health and following those recommendations with actions: • Educate the research and medical communities about the number of individuals impacted and the severity of this disease. Recommend that the CDC define ME by the immunological and neurological abnormalities that exist, the many co-infections that are frequently found and the physical complications of this long term illness. It is time to agree on a proper name for this disease and to reflect the most current scientific knowledge in the definition of this disease. • Seek congressionally mandated research dollars Page 29/56
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