What's ME/CFS
"CFS is a highly debilitating disorder characterized by profound fatigue, muscle and joint pain, cerebral symptoms of impaired memory and concentration, impaired cardiovascular function, gut disorder and sensory dysfunction such as noise intolerance and balance disturbance."
Myalgic Encephalomyelitis /
Chronic Fatigue Syndrome
Myalgic Encephalomyelitis ( ME ) / Chronic fatigue syndrome ( CFS ) "is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Persons with CFS most often function at a substantially lower level of activity than they were capable of before the onset of illness."
Graphs are from "Beyond Myalgic Encephalomyelitis / Cronic Fatigue Syndrome Redefining an Illness" sponsored by Institute of Medicine
SSD
Social Security guidance on how to "develop evidence to establish that a person has a medically determinable impairment of chronic fatigue syndrome and how we evaluate chronic fatigue syndrome in disability claims and continuing disability reviews."
https://www.federalregister.gov/.../evaluating-claims-involving-chronic-fatigue
Get Well From ME/CFS
ME/CFS "is a serious and often severely disabling long-term neurological illness which also affects the body’s immune system, hormones, muscles and circulation."
http://getwellfromme.com/2011/5-diagnosis/
Video
Short awareness video by a member of the group:
http://www.raredr.com/advocacy/videos/myalgic-encephalomyelitis-disease-looking-respect
ME/CFS Primers for Clinical Practitioners
"The rationale for the development of the ICC was to utilize current research knowledge to identify objective, measurable and reproducible abnormalities that directly reflect the interactive, regulatory components of the underlying pathophysiology of ME."
International Consensus Primer for Medical Practitioners
"Many (but not all) patients state that their illness began suddenly, with an infectious-like illness. There is good evidence that ME/CFS can follow in the wake of several different viral and bacterial infections. "
https://www.scribd.com/document/96370265/ME-CFS-Primer-for-Clinical-Practitioners
ME/CFS TREATMENT RECOMMENDATIONS
US ME/CFS Clinician Coalition
Version 1
February 20, 2021
Currently, there are no treatments approved specifically for ME/CFS. But there are a number of pharmacological and non-pharmacological treatments that a clinician can use to help reduce the severity of specific symptoms and improve the patient’s quality of life. Depending on a patient’s presentation and testing, the treatment recommendations below are those used by ME/CFS clinical experts to treat various aspects of ME/CFS, such as orthostatic intolerance, sleep issues, pain, and immune function. Pharmacological treatments begin on page 2 and non pharmacological therapies on page 8. Recommendations for supplements are not provided in this document.
https://drive.google.com/file/d/1T6psBJehr-6BuSNlCGfT6SKNbIFx0Lf5/view
Pysical Symptoms
Dr. Peter Rowe of Johns Hopkins University discusses the physical exam in CFS patients.
http://solvecfs.org/guest-blog-dr-peter-rowe-is-the-physical-examination-normal-in-cfs-part-1/
ME/CFS RESOURCES
Comprehensive guide listing doctors, lawyers, and medication.
Connect with other ME/CFS patients and find out about various treatments.
http://www.patientslikeme.com/conditions/27-chronic-fatigue-syndrome