ME/CFS San Diego is now a 501c3 public charity!
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Frequently Asked Questions
https://batemanhornecenter.org/education/me-cfs/ "Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS, is a disease characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort (physical, cognitive, emotional, orthostatic stressors).
ME/CFS can severely impair a patients’ ability to conduct their normal lives, yet many struggle with symptoms for years before receiving a diagnosis. It is estimated that ME/CFS affects upwards of 3 million Americans, 80% of which remain undiagnosed, even after years of cycling through specialty care."
IOM Criteria (2015) Diagnosis requires that the patient have the following three symptoms:
A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest,
Post-exertional malaise, * and
Unrefreshing sleep*
At least one of the two following manifestations is also required:
Cognitive impairment* or
Orthostatic intolerance
_____________
* Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.
National Academies of Sciences, Engineering, and Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. https://doi.org/10.17226/19012.
https://batemanhornecenter.org/clinical-care-guide/ (free ME/CFS Clinical Care Guide download from Bateman Horne Center) "A comprehensive guide that distills more than a decade of clinical expertise, research, and lived experience into a practical, step-by-step framework for assessment, diagnosis, and ongoing care. Designed to provide clinical insights and actionable strategies, it serves as a roadmap for navigating complexities of these multisystem conditions."
https://solvecfs.org/me-cfs-long-covid/about-the-disease/ "There is currently no FDA-approved treatment or drug for ME/CFS. As neither a cause nor cure for ME/CFS has been identified, treatment is directed at relieving symptoms. However, there are interventions and symptom-reduction strategies that you can use to significantly improve patients’ quality of life." (links on page)