Myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), is a complex, multisystem illness.
Despite being recognized by the World Health Organization as a neurological disorder, many misconceptions surround this condition, making it difficult to receive proper care and treatment.
This blog post will break down five common misconceptions about ME/CFS.
What is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)?
ME/CFS, as defined by the National Academy of Medicine (NAM, formerly Institute of Medicine), is an acquired, chronic multi-systemic disease characterized by significant relapse after physical, cognitive, and/or emotional exertion of any sort.
The disease includes immune, neurological, and cognitive impairment, sleep abnormalities, and autonomic dysfunction, resulting in significant functional impairment accompanied by a pathological level of fatigue.
5 Misconceptions About ME/CFS
Unfortunately, people suffering from this condition often deal with their symptoms being dismissed by doctors, loved ones, employers, and others.
Common misconceptions include:
Myth #1: People with ME/CFS are “Just Tired”
Fact: While fatigue is a symptom of the condition, this type of fatigue is much more debilitating and complex than just feeling tired. Fatigue in ME/CFS is not relieved by rest and can be exacerbated by physical and/or mental activity. This worsening of symptoms after exertion is called post-exertional malaise (PEM) or post-exertional symptom exacerbation (PESE). PEM/PESE, the hallmark symptom of ME/CFS, includes problems with sleep, difficulty thinking and concentrating, pain, muscle weakness, and dizziness. PEM/PESE has less to do with being tired and more with feeling unwell to the point of incapacitation.
Myth #2: ME/CFS Is All in the Mind
Fact: This myth is perpetuated by the fact that routine lab tests, such as a complete blood count and metabolic panel, are often normal in ME/CFS. However, more specialized testing and imaging often reveal abnormalities in immunological, cardiac, metabolic, and endocrine function. Testing also shows problems with digestion, sleep, and vascular and endothelial function. Simply concluding that a disease is “all in the mind” with only basic testing undermines the notion of a differential diagnosis in medicine – the process of differentiating between two or more conditions that share similar symptoms. ME/CFS is a complex, multi-system illness that can profoundly impact a person’s quality of life and may require specialty care.
Myth #3: Fatigue is the Only Symptom
Fact: Many neurological symptoms are associated with ME/CFS, including muscle weakness and pain, joint pain, headaches, cognitive difficulties and sleep disturbances. Problems with the autonomic nervous system (e.g., parts that regulate heart rate and blood pressure) are also common in ME/CFS. The severity of these symptoms can vary from person to person, but all experience some level of disability.
Myth #4: ME/CFS Affects Everyone the Same
Fact: While some people are bedridden or housebound, others might be able to work or attend school. A person with ME/CFS may experience fluctuations in symptom severity. Those on the severe end of the spectrum are confined to bed in a darkened room. PEM, which manifests as severe symptoms within a day or two of physical or mental exertion, is common.
Myth #5: No Treatment is Available
Although ME/CFS cannot be cured, people with the disease can take steps to help lessen symptoms as much as possible.
For instance, people can adopt a pacing/energy conservation strategy to reduce or prevent PEM.
Individuals may also see slight improvements in function due by treating symptoms, which may help to determine if they can perform certain everyday activities.
Do you suspect you have ME/CFS? Contact the team at Workwell Foundation.
We use cardiopulmonary exercise testing (CPET) over two days and electroencephalography (EEG) to evaluate your ability to function physically and cognitively. The objective test results can be used as evidence to document impairment for disability purposes.
Call us at 209-599-7194 to learn more.
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