Tag Archives: orthostatic intolerance

My Letter to President Obama Regarding Myalgic Encephalomyelitis

As you all probably know, from reading some of my blogs, my daughter suffers from the debilitating invisible multi-symptom chronic illness called M.E., or, myalgic encephalomyelitis.  I have joined thousands who advocate for a diagnosis criteria, referred to as the CCC (Canadian Consensus Criteria), which has been adopted by many other countries around the globe.  I believe it should be adopted by the Department of Health and Human Services.  In choosing not to adopt a researched, scientifically-approved criteria, our government is choosing to push these greatly suffering patients aside; letting them flounder without an accepted diagnosis; letting them suffer without medical treatment geared to relieving them of extreme pain and other severe symptoms; and allowing them to lose education, employment and, in reality, the full, active lives they had known before falling severely ill.

Below is a copy of my latest letter to President Barak Obama, trying to obtain attention for these chronically ill patients who, for the most part, cannot advocate for themselves.  They are too sick.

Dear Mr. President;

I have written several letters so far this year, and I have tried to explain to you the urgency for M.E. (commonly referred to as the misnomer, “CFS”), to be recognized as a REAL DISEASE. It is an invisible, multi-symptom, chronic illness, of which there are over 1 million sufferers nationally, and 17 – 20 million worldwide. There are about the same number of sufferers as from HIV/AIDS.

May 12th has been designated as International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day, and there will be a peaceful demonstration (permit has been secured) in 2 major U.S. cities: San Francisco and Washington DC, to draw attention to the disease. M.E., is a serious one that not only disables but, also, is fatal. Displayed will be pictures of deceased patients in empty wheelchairs and their obituaries read. Senator Dianne Feinstein (CA) will be given their message.

What is myalgic encephalomyelitis, and why should anyone care about something that requires 11 syllables? But that is not why Steven Straus at the NIH decided to “rebrand” myalgic encephalomyelitis (ME) as “chronic fatigue syndrome” in 1987. That name that Straus chose for this illness has resulted in decades of misconceptions. “So, you’re tired? Everybody is tired, and besides, being tired won’t kill you.”

Wrong assumptions! M.E./Chronic fatigue syndrome does not make people tired. M.E. is a neurological illness that produces inflammation in the brain; thereby, producing great pain all over the body. The inflammation is the result of an acquired immune system dysfunction which prevents the body from fighting viral invasions. There are 8 different herpes viruses that remain in everyone’s body for life. They reproduce, interfering with production of cell energy, causing abnormal bodily fatigue.

Cellular energy reduction causes abnormal heart function; blood flow decreases; lower blood flow leads to orthostatic intolerance (the inability to stand up). This leads to cognitive function decrease; students have to leave school; adults cannot function at work and lose their jobs.

Why has the Department of Health and Human Services buried this illness (M.E.) by calling it CFS? An illness which can kill a healthy teenager (David Tscherpel) after only 18 months? Food for thought.