ME/CFS - Myalgic Encephalomyelitis / Chronic Fatigue Syndrome is a complex multi-system illness whose effects range from immune dysfunction through dysautonomia, cognitive impairments, and down to impairment of energy production at the cellular level.
An estimated 3 million Americans and 580,000 Canadians suffer from it, 75% of whom are likely to be unable to hold paid employment and 25% of whom, severely ill, may spend their lives in darkened bedrooms, unable to eat on their own, their condition made worse by noise, odor, and even human touch.
After many years in medical limbo, exciting new research is pointing toward the biochemical abnormalities at the disease's heart, opening pathways to better symptom management if not yet to simple diagnostic tests and standardized medical treatment.
Below are reliable online resources for patients, caregivers, and medical practitioners:
A mid-2019 summary of current knowledge about ME/CFS from Dr. A. Komaroff: Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome https://jamanetwork.com/jou.../jama/article-abstract/2737854
The Open Medicine Foundation (OMF) resource page pulls together current ME/CFS research from Stanford & Harvard in the USA and Uppsala in Sweden
https://www.omf.ngo/resource-center/
The International Association for CFS-ME has a resource page https://www.iacfsme.org/educational-services-and-clinical-management
#MEACTION’s MEpedia pages contain a continually updated overview organized by symptom area https://me-pedia.org/wiki/Welcome_to_MEpedia
ME-FM Action https://www.mefmaction.com
The Bateman Horne Center, a leader in biochemical research and life-management skills for patients
http://batemanhornecenter.org/medical-provider-library/
Action For ME covers severe patients’ experiences Actionforme.org.uk
Physios4ME is a UK-based organization of physiotherapists using science and their professional experiences to challenge the longstanding assumption that 'getting more exercise' is going to help people with ME/CFS and Long Covid who have core metabolic dysfunctions preventing their bodies from making energy to run basic functions, let alone to make extra energy for 'exercising'.
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