Sunday, April 24, 2011

Letter to Obama Regarding ME/CFS

Dear Mr. President,

I am a fibromyalgia (FM) patient also diagnosed with chronic fatigue syndrome (ME/CFS) following a prolonged period of extreme fatigue. Eventually, I was diagnosed with Hashimoto’s Thyroiditis, an autoimmune disorder of the thyroid. Because there is a crossover of symptoms between FM, ME/CFS, and hypothyroidism, we need definitive testing. This will not occur without research.

My story does not stop here. My sister (by marriage), and best friend, was also diagnosed with FM, and a cavalier diagnosis of ME/CFS. She was treated with anti-epileptics, antidepressants, benzodiazepines and pain medications (which significantly altered her once bouncy and kind personality), but never an antiviral regime.

As a nurse and author on FM, ME/CFS and myofascial pain, I always suspected, and told her, she needed further evaluation for the biological factors involved in ME/CFS. She did have an unexplained elevated ANA, was mostly bedridden, and her immune system was broken. However, finding a doctor equipped to diagnose ME/CFS appropriately is a difficult.

She would fall asleep at the table. Those around her believed her symptoms were because of medications and I do believe they were a contributing factor. As most of us, she endured numerous drug trials with psychiatric drugs, which provided an eight year mask. Even before she was disabled, she would come home from work for lunch and fall asleep. I told people around me repeatedly, I suspected her primary problem was ME/CFS. However, those who do not understand this disease only compounded her difficulty with coping and provided little, if no, support.

I remember with grief that fateful day my once best friend was transported to the ER. She had severe pneumonia. This was not her first bout of pneumonia either, despite having had pneumonia vaccines and boosters. She was put in a drug induced coma and placed on a ventilator. This scenario continued for months. Eventually, her lungs became strong enough to wake her up, except she never really woke up. You see, her brain was in constant seizure. She was re-hospitalized and placed in a coma several times before her brain gave up. For a year she suffered in a near vegetative state with periodic glimpses of recognition. Her fight was over in September 2010.

Chronic fatigue syndrome takes lives. My best friend was only 55 years old.

Please help us. Support research into the cause, biological markers, and helpful treatments.

Sincerely, Celeste Cooper, RN

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