Diagnosing and caring for patients
Myalgic encephalomyelitis (also known as chronic fatigue syndrome or ME/CFS) is a complex chronic disease that presents with symptoms in multiple body systems. ME is a neurological disease according to the World Health Organization.
For decades, “chronic fatigue syndrome” was a diagnosis of exclusion, resulting in the delayed and misdiagnosis of countless patients.
In 2015, the US National Academy of Medicine created new diagnostic criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (“the IOM criteria”) to affirmatively diagnose ME through a core set of symptoms including post-exertional malaise, unrefreshing sleep, cognitive dysfunction, and orthostatic intolerance.
While some clinicians and advocates believe the IOM criteria allow for the diagnosis of mild patients and patients earlier in their illness course, others are concerned that these criteria may still be too broad, particularly if used to select human subjects for research.
We strongly recommend clinicians familiarize themselves with the following three criteria and the range of symptom presentations among mild, moderate and severe patients:
MAJOR SYMPTOMS INCLUDE:
- Post-exertional malaise
- Unrefreshing sleep
- Cognitive dysfunction and/or orthostatic intolerance.
Many patients also experience a range of other neurological, autonomic, and immunological symptoms either as a permanent feature of their illness or during a “crash” or flare. These symptoms include:
- Pain in the muscles and joints
- Headaches of a new type, pattern, or severity
- Cognitive symptoms such as confusion, difficulty retrieving words, poor working memory, spatial instability, and disorientation
- Sensitivity to light, sound or vibration, taste, odor or touch
- Gastrointestinal symptoms such as nausea or abdominal pain
- Muscle fatigability, weakness and fasciculation; poor coordination and ataxia
- Autonomic and endocrine symptoms such as poor temperature regulation, cold or heat intolerance
- Immune symptoms such as tender lymph nodes, recurrent sore throats, fevers, or flu-like symptoms, and new food or chemical sensitivities
While there are currently no FDA-approved treatments for ME, many patients can live a higher quality of life if they have access to a physician who can help them:
1. Pace their activity to minimize exacerbating symptoms
2. Manage the symptoms of pain, unrefreshing sleep, and orthostatic intolerance
3. Diagnose and treat common comorbidities
MEpedia is a crowdsourced database on the history, science and medicine of ME, CFS, and related diseases.
Continuing Education Programs
US healthcare providers can watch UNREST, an award-winning documentary about myalgic encephalomyelitis, and receive continuing education credits through the American Medical Women’s Association and Indiana University School of Medicine.
There are now four courses in the U.S. that offer medical providers – doctors, nurses, social workers and physical, occupational, and speech therapists – the opportunity to receive continuing education credits for learning about myalgic encephalomyelitis and chronic fatigue syndrome.
The Unrest CE program is currently only available to medical providers in the U.S. If you are interested in learning how you can support our efforts to accredit Unrest for continuing education in other countries, please email [email protected].
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