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More Than Fatigue


Chronic Fatigue Syndrome - The Baffling Disease
By
Spadecaller

 

The disease known as myalgic encephalomyelitis (ME/CFS), a multi-system disease adversely affects the cellular mitochondria and the heart, brain, neuroendocrine, immune, and circulatory systems. With the recognition of many cases around the world, including a number of cases at the Royal Free Hospital in England, M.E. was first identified in the 1950's. The etiology of the disease remains a mystery.  Many different viruses, bacteria, or toxins in combination with genetic factors may be involved.  Disease onset usually begins in childhood or early adulthood with an acute infection.

In a paper describing the 1955 epidemic among staff at Royal Free Hospital in London, M.E. pioneer, Dr. A. Melvin Ramsay, formally coined Sir Donald Acheson's selected name for the disease myalgic encephalomyelitis.  For more than 30 years, Dr. Ramsay investigated M.E. His sound descriptions of the disease and its accurate name have stood the test of time and have earned him a place of honor in M.E. history.  Dr. Ramsay created a definitional framework, which described abnormal muscle metabolism, circulatory impairment, and cerebral involvement common among those suffering with the illness. 
Current research-based case definitions provided by the Canadian Consensus Panel for ME/CFS include neuroendocrine, immune, and cardiocirculatory symptoms as well as abnormal muscle metabolism, circulatory impairment, cerebral/neurological involvement, and neurally mediated hypotension, postural orthostatic tachycardia syndrome, and cardiac arrhythmia.
Despite newfound evidence and sound studies, this problem still persists. Patients enduring extreme and debilitating symptoms are often dismissed, referred to psychiatrists, or prescribed psychotropic medications. Their families often rebuke them for losing time from work. "Chronic fatigue, yeah who doesn't have that! You're just lazy." Statements like these are commonplace. Permanent marriage break-ups and alienation from friends and family members are typical. Accumulating medical histories that include doctor's notes comprised of psychological profiles, random flu-like symptoms, negative lab tests, and prescribed anti-depressant medications, force many patients to retreat into isolation. Laura Hillenbrand, bestselling author ofSeabiscuit aptly stated, "This illness is to fatigue what a nuclear bomb is to a match. It's an absurd mischaracterization."


My Personal Experience



Pursuant to several years of chronic illness, I eventually gave up on seeking medical intervention. In 1970, 1982, and 1984 blood tests repeatedly confirmed a diagnosis of mononucleosis. Not until 1990 did I receive an official diagnosis of CFS by a well-informed doctor. Fortunately by the time my conditioned worsened, Congress had finally enacted a practical definition for Social Security Disability to accept CFS documented cases. I became one of them. Following several hospitalizations, a heart attack in '99, and profound muscle weakness, I had to retire at age 50 from a successful career in financial planning.

Regrettably, in 1988, historically known as both "myalgic encephalomyelitis" and as the well-documented epidemic "neuromyasthenia", these were renamed "Chronic Fatigue Syndrome" by employees at the Centers for Disease Control (CDC), who imposed the unrepresentative and misleading "fatigue" term onto patients and researchers.  Sharply critical of CDC Dr. Ramsay explained,  "The failure to agree on firm diagnostic criteria has distorted the database for epidemiological and other research, thus denying recognition of the unique epidemiological pattern of myalgic encephalomyelitis."
But, even more damage was done in 1994, when the CDC broadened the definition for CFS to include many unrelated diseases. "CFS" became the "dumping ground", or an umbrella term for a host of incorrectly diagnosed conditions. Those suffering from myalgic encephalomyelitis became the real victims. Many physicians rejected diagnosing patients with CFS, preferring to classify their illnesses as a psychosomatic manifestation or stress related disorder. Some called the illness "the Yuppie Flu."





Despite the stress on my family, adjustments in lifestyle, and the progression of the illness, I am a lucky man; I am married to a wonderfully supportive woman. No person should have to "come out of the closet" because of a medical condition of any kind, but preconceived ideas, ignorance, and oppressive attitudes that stem from distorted work ethics have a profound effect. My own internalized misconceptions about self-worth and work ethics also had to undergo scrutiny and revision.
During this difficult process of adjustment, I attended a local support group. The big problem was: members were incapable of keeping commitments to the group. Nevertheless, I received the message I needed when I heard one young member say,  "I am a strong man suffering with an illness and I do not need to justify it to anyone."  When I was prompted to introduce myself, I expressed my reluctance to talk about the illness, as it always seemed to evoke skepticism or pity. The chairman replied, "Because of ignorance, we are treated unfairly at times and this forces us into isolation. We need to connect with others to help us be good to ourselves".





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