Coping
https://ammes.org/ammes-financial-crisis-fund/ American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society. This link is for those who are in financial crisis and need help paying for rent and basic necessities.
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ The Spoon Theory, Christine Miserandino uses an analogy about spoons to explain what it’s like to live with a chronic illness with limited energy.
http://cfsselfhelp.org/ An online self-help course for myalgic encephalomyelitis / chronic fatigue syndrome and fibromyalgia.
https://www.churchofjesuschrist.org/life/disability?lang=eng disability resources of the Church of Jesus Christ of Latter-Day Saints
https://www.meaction.net/chronically-complex-meaction-podcast/ Chronically Complex Podcast: interviewing some of the most influential voices in ME/CFS and Long COVID, books and articles on complex chronic disease, life with ME, advocacy, art and music.
History and Definitions
http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf an overview of the Canadian Consensus Criteria for doctors. It covers diagnosis and treatment of ME/CFS.
https://me-pedia.org/wiki/Canadian_Consensus_Criteria overview of the Canadian Consensus Criteria, written by professionals who know ME/CFS well.
http://www.meresearch.org.uk/wp-content/uploads/2012/11/2003-Carruthers-Canadian-Definition-JCFS.pdf full text of the ME/CFS Clinical Working Case Definition, Diagnostic and Treatment Protocols
https://drive.google.com/file/d/1SG7hlJTCSDrDHqvioPMq-cX-rgRKXjfk/view Diagnosing and Treating ME/CFS, by the ME/CFS Clinician Coalition
https://www.meaction.net/wp-content/uploads/2021/04/Coalition-Testing-and-Treatment-Recs-2021-.pdf U.S. ME/CFS Clinician Coalition Recommendations for ME/CFS testing and treatment
https://me-pedia.org/wiki/International_Consensus_Criteria an overview of the Myalgic Encephalomyelitis International Consensus Criteria
https://me-pedia.org/wiki/Myalgic_encephalomyelitis history, symptoms, diagnosis of ME, as well as many links
https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext ME/CFS: Essentials of Diagnosis, 2021 Mayo Foundation for Medical Education and Research.
http://sacfs.asn.au/download/me_international_consensus_primer_for_medical_practitioners.pdf Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners
https://drive.google.com/file/d/1Yu79EYxQIwNVER5tErp7LH7KY8pI8S_e/view Testing Recommendations for Suspected ME/CFS, US ME/CFS Clinician Coalition
https://youtu.be/RC9TjgE_PlU – 10 minute video. Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Excellent for healthcare professionals needing a quick overview of this illness.
https://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria The International Consensus Criteria: What is it? Do I fit the criteria?”
Resources
https://ammes.org/ “The American ME and CFS Society is dedicated to serving the needs of patients and caregivers through support, advocacy, and education.”
https://batemanhornecenter.org/ The Bateman Horne Center (BHC) is a Center of Excellence where clinical care, research, and education meet to advance the diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), post-viral syndromes, and related comorbidities.
http://www.cfidsreport.com/ news, commentary, links for ME/CFS
http://www.cfstreatmentguide.com/doctors-and-clinics.html a list of doctors who treat ME/CFS in the United States and Canada
https://www.emerge.org.au/ Emerge Australia is a national organization providing education, advocacy, research and support services for more than 250,000 Australians living with ME/CFS.
https://secure.endfatigue.com/ Dr. Jacob Teitelbaum’s website. Learn about ME/CFS and fibromyalgia. Lists of practitioners and support groups.
https://fourpeakshealthcare.com/ Four Peaks Healthcare Associates is a medical clinic in Flagstaff, Arizona that specializes in fibromyalgia, myalgic encephalomyelitis / chronic fatigue syndrome, and related disorders.
https://drlapp.com/ Hunter-Hopkins Center is a medical clinic in Charlotte, North Carolina that treats persons with ME/CFS and fibromyalgia.
https://www.iacfsme.org/ International Association for CFS/ME, information for healthcare professionals, researchers, patients and caregivers
https://me-pedia.org/ a knowledge base on the history, science and medicine of ME/CFS, and related diseases
https://www.ncf-net.org/ National CFIDS Foundation: articles, research, memorial list
https://www.nova.edu/nim/ The Institute for Neuro-Immune Medicine at Nova Southeastern University in Florida strives to advance knowledge and care for people with complex neuro-inflammatory illnesses using research, clinical care, and education.
https://www.meaction.net/ support groups on Facebook, advocacy, news, diagnosis guides, doctor list, treatments
https://meassociation.org.uk/ The ME Association in the United Kingdom, information, support, research
https://mecfscliniciancoalition.org/ U.S. ME/CFS Clinician Coalition. Resources and education for medical providers caring for people with myalgic encephalomyelitis / chronic fatigue syndrome
https://rthm.com/ telehealth care for Long COVID. Some who have Long COVID also have ME/CFS.
https://solvecfs.org/ Solve ME/CFS Initiative. Education and awareness. Research projects. Patient registry and biobank. Newsletter.
http://www.treatcfsfm.org/ treating chronic fatigue syndrome and fibromyalgia: a free online self-study course by Bruce Campbell, Ph.D. and Charles Lapp, M.D.
http://www.wpinstitute.org/ Whittemore Peterson Institute in Reno, Nevada is where researchers and medical doctors work together to bring an end to complex neuro-immune diseases (NIDs) including ME/CFS, autism, and fibromyalgia.
https://workwellfoundation.org/ Workwell Foundation exercise physiologists provide expertise to support a diagnosis, functional assessments, and treatment in the areas of ME/CFS, Fibromyalgia and other fatigue-related illnesses. In Flagstaff, Arizona and Ripon, California.
https://youandmeregistry.com/ The You + ME Registry is a collection of patient-reported data from those living with ME/CFS or Long Covid, plus healthy volunteers. The dataset is used by researchers searching for treatments and a cure.
Shopping
https://secure.endfatigue.com/products shop for Dr. Tietelbaum’s vitamins and supplements that are made for those with ME/CFS and fibromyalgia.
https://www.e-tyh.com/ To Your Health, supplements for fibromyalgia and ME/CFS.
https://www.prohealth.com/ Prohealth Longevity shop for vitamins and supplements for older people and those with fibromyalgia and ME/CFS.
https://www.seekinghealth.com/ Seeking Health, for those with the MTHFR gene problems, methylation, and other supplements
Caterpillar on Leaf Image by Emilian Robert Vicol from Pixabay