Little attention is paid to this debilitating illness.
Millions of people worldwide suffer from Chronic Fatigue Syndrome—also known as ME/CFS or M.E. (Myalgic Encephalomyelitis). Although Chronic Fatigue Syndrome (CFS) is a misleading label for this debilitating illness, I’ll be using that designation in this piece because it’s the name that most readers recognize.
I’ve lived with Chronic Fatigue Syndrome since 2001. It has left me mostly housebound. Even though I’ve consulted with doctors across the United States, no treatment has given me relief from its unrelenting symptoms.
CFS affects people’s ability to be part of the work force; it affects their ability to raise a family; it affects almost every aspect of their lives. Yet its cause remains a mystery. From my personal experience, study, and observation, here are some of the factors that contribute to keeping this illness shrouded in mystery.
1. Chronic Fatigue Syndrome is over-diagnosed
People with medical conditions are often given a diagnosis of Chronic Fatigue Syndrome when their doctors can’t figure out what’s wrong with them, but one of the symptoms they report is ongoing fatigue (what illness isn’t accompanied by fatigue?).
This over-diagnosing of Chronic Fatigue Syndrome means that these patients are incorrectly put into the pool of those who actually have the illness. This makes it almost impossible to isolate factors (such as biological markers and symptoms) that are unique to people who actually have CFS. The failure to isolate these factors impedes the ability to do effective research on the illness.
One example of over-diagnosis occurs when someone with a mental illness (that’s understandably accompanied by fatigue) is incorrectly diagnosed as having Chronic Fatigue Syndrome. In one such instance, a woman was diagnosed with CFS for over a decade before she had a mental breakdown that led to her being committed to a psychiatric hospital. There, she was correctly diagnosed with bipolar disorder. It’s what she’d had all along. She was given medication and, for the first time in 15 years, is functioning normally.
Not only does the above example of over-diagnosis impede the ability to do effective research on those who actually have Chronic Fatigue Syndrome, but when a story like this becomes public, it’s treated as proof that CFS is “all in your head,” a most damning characterization for those with this physically-based illness—a characterization that stops research funding in its tracks.
2. Chronic Fatigue Syndrome is under-diagnosed.
Not only is Chronic Fatigue Syndrome over-diagnosed, it’s under-diagnosed. Here’s how. A primary care doctor sends a patient to various specialists to assess symptoms that the doctor assumes are unrelated, when, in fact, the symptoms belong to the cluster that make up CFS.
In other words, people who actually have CFS sometimes get what’s called “fragmented medical care,” with one symptom being treated by a neurologist, one by a rheumatologist, one by an endocrinologist, one by cardiologist, one by an infectious disease doctor, one by a pain specialist. But the symptoms are never “put together” as belonging to the illness: Chronic Fatigue Syndrome. As a result, valuable information on the cluster of symptoms that account for CFS goes unnoticed and is lost to potential researchers.
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