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We are crowd-sourcing a knowledge base on the history, science and medicine of ME and CFS around the world. MEpedia is a patient community project being built by patients, founded by #MEAction. Read more about MEpedia and its principles.

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Five minute tasks[edit]

Only have a five minute spoon to give? Here is a list of small tasks you can help us with in roughly one to ten minutes of time.

Priority pages for expansion[edit]

Science: Citric acid cycle, Mitochondria, Exercise, Natural killer cell, Central nervous system, Nitric oxide hypothesis, Brain, Brain imaging, Microbiome hypothesis, Primer for journalists (Prognosis section), PACE trial

A note on ME v. CFS[edit]

We have separate pages for Myalgic Encephalomyelitis, ME/CFS and Chronic Fatigue Syndrome as well as SEID. The convention is that the terminology used in an ME-pedia article should match the terminology used in the underlying source. Where there is a tension between the term used in the source and the definition (e.g., ME defined by the Oxford criteria or CFS defined by the Canadian Consensus Criteria), it may be useful for clarity to mention the definition used.

Primers[edit]


The Disease[edit]

Infectious agents: Borrelia, Babesia, Bartonella, Borna Disease Virus, Chlamydia pneumoniae, Coxsackie A, Coxsackie B, Cytomegalovirus, Ebola virus, Echovirus, Enterovirus, Epstein-Barr virus, H1N1, Herpesvirus, HHV-6, HHV-7, HSV-1, HSV-2, Influenza, Parvovirus B19, Q Fever, Ross River Virus, Mycoplasma pneumoniae, Streptococcus, Fungal infection

Triggers and risk factors: Blood donation, Candidiasis, Causes of death, Epidemiology, Genetics, Menstrual cycle*, Mold, Pediatric*, Pregnancy, Stress*, Toxic exposure*, Trauma, Vaccine, Viral onset, Bacterial disease onset, Fungal disease onset

Signs and symptoms: Ataxia, Attention deficits, Auditory sequencing problems, Balance problems, Cognitive dysfunction, Chronic pain, Chronic fatigue, Concentration problems, Difficulty comprehending social cues, Dyslexia, Executive function problems, Fatigue, Food intolerance, Hypermobility, Irritable bowel syndrome, Low motivation, Migraine, Multi-tasking problems, Muscle fatigability, Neurally mediated hypotension, Nonepileptic seizure, Optical dysfunction, Orientation in space problems, Orthostatic intolerance, Planning problems, Post-exertional malaise, Postural orthostatic tachycardia, Receptive language problems, Seizure, Sleep disturbance, Slowed thought, Telomere shortening, Unrefreshing sleep, Word-finding problems*

Medical hypotheses: Amygdala hypothesis*, Autoimmune hypothesis, Encephalitis, Autoimmune encephalitis, Fatty acid hypothesis, Hygiene hypothesis*, Immune exhaustion hypothesis*, Infectious disease hypothesis, Ken Lassesen's model, Methylation cycle hypothesis, Microbiome hypothesis, Mold hypothesis*, Patricia Kane protocol, Vagus nerve hypothesis, Viral onset hypothesis, Hypercoagulation hypothesis, Acquired immune and mitochondrial dysfunction hypothesis

Body systems: Antibody, Autoantibody, Blood, Brain, B cell, Central sensitization, Cytokine, Chemokine, Cardiovascular system, Gastrointestinal system, Glutamate excitotoxicity, HPA axis*, Immune system, IL-1, IL-2, IL-6, IL-8, IL-10, IL-16, IL-17, IL-18, Interferon, Leaky brain, Leaky gut, Macrophage, Microglia, Microbiome, Mucosal immune system, Nervous system, Natural killer cell, Neuroinflammation, Ribonuclease L, Spinal cord, Tumor necrosis factors, VEGF, T cell

Tests: Brain imaging, Cardiopulmonary exercise test, CellTrend diagnostic test, C reactive protein*, qEEG/LORETA, Erythrocyte sedimentation rate, Exercise, NCNED Griffith University diagnostic test, MRI, Orosomucoid, qEEG, SF-36, SPECT, Tilt table test, Two day exercise test, Natural Killer Cell (NKC) Function, Arginine vasopressin, MTHFR and other methylation mutations, infectious diseases

Citizen science: 23andMe, American Gut, Any Treatment, Mendus, Phoenix Rising, UBiome, Know Your Genetics: Dr. Amy Yasko, WellnessFX, CH3Nutrigenomics; Dr. Amy Yasko, MTHFR.net, Genetic Genie, LiveWello

Biochemistry and cell biology: ATP, Cellular respiration, Citric acid cycle, D lactate*, Endocannabinoid, Glucocorticoid, Glutathione*, Histamine, Methylation cycle, Mitochondria, Nitric oxide, Oxidative phosphorylation, Phenylalanine, Tyrosine

Nutrients: Copper, Deadlock quartet, Folate, L-carnitine, Magnesium, Sam-e, TMG, Vitamin B2, Vitamin B6, Vitamin B12*, Vitamin C*, Vitamin D, Zinc

Neurotransmitters and hormones: Acetylcholine, Alpha-Melanocyte-stimulating hormone, Calicitriol, Calcidiol, Cortisol, Dopamine, Endorphin, Estriadol, Epinephrine, Estrogen, Glucocorticoid, Glutamate, Histamine, Hormones, Leptin, Melatonin, Neurotransmitters, Norepinephrine, Oxytocin, Progesterone, Prolactin, Prostaglandins, Serotonin, Testosterone, Vasopressin, Thyroid, MSH, HGH

Blood donation

Disease Names & Definitions[edit]


Research[edit]

Researchers

Research initiatives

Studies, biobanks, registries, mailing lists

Disclaimer: The following is a range of some of the interventions (including anecdotal) that have been used by patients to try to treat both individual symptoms and the disease as a whole, some of which have been researched and many which have not. The vast majority lack ANY reliable evidence of efficacy. Many carry significant side-effects and risks. This content is provided for information ONLY. MEpedia is not to be used to diagnose or treat any illness. Patients must consult a clinician before embarking on treatment.

Pharmaceuticals[edit]

Anti-fungal drugs: Fluconazole, Itraconazole

Other drug treatments: Chelation, Cyclophosphamide, Prednisone, Trazodone, Tramadol

B-cell depletion: Rituximab

Immunomodulators and immunostimulants: Ampligen, Low dose naltrexone, Intravenous immunoglobulin, Staphylococcal vaccine, Interferon

Antivirals: Valganciclovir, Famciclovir, Valaciclovir, Acyclovir

Anti-inflammatory drugs: Sulfasalazine

Herbs, Supplements and Nutraceuticals[edit]

Supplements: Probiotics, AHCC, CoQ10, L-carnitine, MitoQ, NADH, PrescriptAssist, Mutaflor, GcMAF, Colostrum, Transfer factors, Fish oil, EPA, DHA, Taurine, L-Glutamine, Glutathione, Niacinamide, B Vitamin Complex, Adaptogens (Eleuthro, Ginseng, Ashwaganda, Rhodiola, Licorice), Mangosteen, Vegan/non-whey Protein Powders with Amino Acid Complex, Greens Powders, D-Ribose, Quercetin, Nexavir, 5-Hydroxytryptophan, Melatonin

Supplement sources: Pure Formulas, Be Well By Dr Frank Lipman, Seeking Health, MITOQ, Aloha, ProHealth, Thrive Marketplace, HolisticHeal, Vitacost.com

Herbs: Medical marijuana, Kampo, Equilibrant

Immunovir, Medicinal mushrooms

Alternative interventions[edit]

Diets: GAPS diet, Ketogenic diet, Low FODMAP Diet, Low Histamine Diet, Paleo diet, RPAH Elimination Diet, Specific carbohydrate diet, Vegan diet, Vegetarian diet, Fasting

Foods: Cocoa (Dark chocolate)

Uncategorized interventions: Traditional Chinese medicine, Cold immersion, Fecal matter transplant/Faecal bacteriotherapy, Helminthic therapy, Pacing, Energy envelope, Hyperbaric oxygen, Exercise, Vagus nerve stimulation, Exercise based on 2-day CPET

Category page: Potential treatments

Clinicians[edit]

Australia: Rashmi Cabena (VIC), Donald P Lewis (VIC), Richard Schloeffel (NSW), John Whiting

Canada: Alison Bested, Byron Hyde

Belgium: Kenny de Meirleir, Annemie Uyttersprot (GP)

Germany: Anna Dorothea Hoeck, Carmen Scheibenbogen

Italy: Lorenzo Lorusso, Eligio Pizzigallo, Umberto Tirelli

New Zealand: Rosamund Vallings

South Africa: Cecile Jadin

Sweden: Carl-Gerhard Gottfries

United Kingdom: Amolak Bansal, Peter Behan, Breakspear Medical, Abhijit Chaudhuri, Gabrielle Murphy, Sarah Myhill, Vinod Patel, Raymond Perrin, Basant Puri, Charles Shepherd, Nigel Speight, William Weir, Andrew Wright

United States:

Benjamin Natelson, Courtney Craig, Derek Enlander, Maureen Hanson, Patricia Fennell, Susan Levine

Management guides: Taming the Gorilla (Action for ME), Notes for Carers (Greg Crowhurst), The Purple Booklet (ME Association), Spoon theory, Dental Leaflet for ME Sufferers (The Grace Charity for M.E.), CFS - A Roadmap for Testing and Treatment, Information for Patients and Hospital Staff Regarding Treatment of Patients with M.E. (The Grace Charity for M.E.)

Psychological Paradigm[edit]

Psychological paradigm, mind-body approaches and related interventions: FINE trial, PACE trial, Graded Exercise Therapy, Cognitive Behavioral Therapy, Biopsychosocial model, Deconditioning, Mickel therapy, Lightning process, Reverse therapy, Gupta programme, Psychoneuroimmunology, Meditation, Bodily distress syndrome, Functional somatic syndrome, Psychosomatic illness, Neurasthenia, Medically unexplained symptoms

Psychological paradigm proponents: Simon Wessely, Michael Sharpe, Peter White, Trudie Chalder, Rona Moss-Morris, Jessica Bavinton, Esther Crawley, Anthony Cleare, Ben Goldacre, Peter Manu, Brian Walitt, Edward Shorter, Per Fink

Psychological paradigm critics: James Coyne, Keith Laws, David Tuller, Ronald Davis, Bruce Levin, Arthur Reingold, Jonathan Edwards, Leonard Jason, Ellen Goudsmit, Angela Kennedy, Mark Zinn, Marcie Zinn

Patient mental health

By country: Diagnosis, treatments, insurance, disability, etc.[edit]

  • Africa:

Kenya, Nigeria

  • Asia:

China, India, Indonesia, Iran, Israel, Japan, Russia

  • Europe:

Austria, Belgium, Bulgaria, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Netherlands, Norway, Poland, Romania, Slovakia, Slovenia, Spain, Sweden, Ukraine, United Kingdom, Category:Belgium, Category:Germany, Category:United Kingdom

  • Oceania:

Australia, New Zealand, Category:Australia

  • North America:

Canada, Mexico, United States, Category:Canada

  • South America:

Argentina, Brazil


History[edit]

Important events timeline

Historical records: Osler's Web, Thirty Years of Disdain

Outbreaks: Outbreaks: Incline Village 1984, Lyndonville 1985, Akureyri, Los Angeles 1934, Royal Free Hospital 1955, Dalston 1955, Adelaide 1949, Ayrshire 1980, Sacramento 1975, Bergen Norway 2004

Deceased patients: Sophia Mirza, Thomas Hennessy, Jr., Vanessa Li, Lynn Gilderdale, Emily Collingridge, Chardale Dotson Irvine, Oliver Coles, Brynmor John, Victoria Elsbury-Legg, Roger Cicero, Jodi Bassett, Memorial Lists

Major developments/controversies: PACE trial, XMRV

ME and CFS in popular culture

Patient Advocacy[edit]

Patient groups

How To Advocate: Community and System Change

Advocacy/Fundraising Initiatives: Chilli ME Challenge, ME Foggy Dog, Mike's EU Marathons

Famous patients: Michelle Akers, Glenn Beck, Roger Cicero, Neil Codling, Shirley Conran, Michael Crawford, Charles Darwin, Oriah Mountain Dreamer, Blake Edwards, Laura Hillenbrand, Keith Jarrett, Martine McCutcheon, Stuart Murdoch, Florence Nightingale

Notable patients: Karina Hansen, Joanne, Sophia Mirza, Thomas Hennessy, Jr., Vanessa Li, Lynn Gilderdale, Emily Collingridge, Whitney Dafoe, Tom Kindlon, Graham McPhee, Jennie Spotila, Naomi Whittingham, Jane Colby, Countess of Mar, Brian Vastag, Jennifer Brea, Ryan Prior, Hillary Johnson, Julie Rehmeyer, Leonard Jason, Charles Shepherd, Nasim Marie Jafry, Ken Lassesen, Cort Johnson, Valerie Eliot Smith, Doctor Speedy, Tanya Marlow, Deborah Waroff, Catherine Hale, Mary Schweitzer, Toni Bernhard, Guido den Broeder, Frank Twisk, Steven Lubet, Giada Da Ros, Roberta Pelletta, Carol Head, Ean Proctor, Jessica Taylor, Clark Ellis, Alem Matthees, Peter Kemp, Mindy Kitei, Jeannette Burmeister, Giles Meehan, Erik Johnson, Lisa Petrison, Mary Ann Kindel, Gabby Klein, Eileen Holderman, Susan Kreutzer, Maryann Spurgin, Wendy Boutilier, L.A. Cooper, Donna M. Pearson, Mary Gelpi, James David Chapman

Notable healthy advocates: Angela Kennedy, Mary Dimmock, Greg Crowhurst, Malcolm Hooper, Nicole Castillo, Llewellyn King, Erica Verrillo, Tom Whittingham, Mike Harley, Ian Gibson, Scott Ludlam, Linda Tannenbaum, Don Tannenbaum, Jon Campling, Charmian Proskauer

Notable Quotes: List of Quotes, Individual Quotes

Illuminated landmarks

Journals, TV, Articles, Books, Film, Interviews, Blogs, Discussion Forums[edit]

Journals: Fatigue: Biomedicine, Health & Behavior, Journal of Chronic Fatigue Syndrome, PLOS ONE, The BMJ, The Lancet, The Lancet Psychiatry


TV: House, I Remember Me, Inside Out: Six years in bed, Sick and Tired, Sick and Tired - BBC, Susan Harris, The Golden Girls, The Middle, Toxic Tiredness


Articles: List of news articles on ME and CFS, In the Expectation of Recovery

Books (Deutsch): ME - Myalgische Enzephalomyelitis vs. Chronic Fatigue Syndrom - Fakten Hintergründe Forschung


Books (English): A Beginner's Guide to ME/CFS (ME/CFS Beginner's Guides Book 1), America Exhausted: Breakthrough Treatments of Fatigue and Fibromyalgia, America's Biggest Cover-Up, Authors of our Own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses, Body by Science, Chronic Fatigue Syndrome (book), Chronic Fatigue Syndrome: A Biological Approach, Chronic Fatigue Syndrome: A Treatment Guide, Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, Encounters with the Invisible, Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies, Living with ME, Love and Fatigue in America, ME - The New Plague, ME/CFS: A Primer For Clinical Practitioners, My A-Z of M.E. (Myalgic Encephalomyelitis), Myalgic Encephalomyelitis and Postviral Fatigue States: The Saga of Royal Free Disease, One Last Goodbye, Osler's Web, Plague, Post Viral Fatigue Syndrome (book), Ramsay's Disease - Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of 'CFS', Reviving the Broken Marionette, Severe ME - Featuring: "Justice for Karina Hansen", Severe ME/CFS: A Guide to Living, Severe ME: Notes for Carers, The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome, The Hidden, The State of Me, Thirty Years of Disdain, Why ME, Zoe's Win


Books (Italiano): Stanchi: Vivere con la Sindrome da Fatica Cronica


Books (Nederlands): Heden ik


Books (Norsk): De Bortgjemte, The Hidden


Books (Suomi): CFS:n ja fibromyalgian hoito


Books (Svenska): Trött är fel ord: Om att leva med den osynliga sjukdomen ME/CFS


Film: Canary in a Coal Mine, Forgotten Plague, I Remember Me, Invisible Illness - Stories of Chronic Fatigue Syndrome, Living with M.E., ME The Hidden Truth, Perversely Dark, The Last Great Medical Cover Up, Voices from the Shadows, What About ME


Interviews: ME/CFS Alert, Science for Patients

Blogs: 25pillsaday, A Dream Deferred, About.com Health FMS/ME/CFS, Cell Fatigue, CFS Central, CFS Patient Advocate, CFS Remission, CFSGraphics, Constant F****** S***, Courtney Craig, Disabled in Tory Britain, Get Well From ME, Health Rising, JayTay, Just ME, Limited Capability, Living With Chronic Fatigue Syndrome, ME Advocacy, ME Association, ME/CFS Alert, ME/CFS Ghost, Nice Guidelines, Occupy M.E., Onward Through the Fog, Quixotic My ME Blog, Science for Patients, Shoutout About ME, Spoonie Radio, Spoonseekerdotcom, The Blue Ribbon Fellowship, The Blue Ribbon Foundation, The MEAction Network, The Self-Taught Author, The World of One Room, Thoughts About M.E., Utting-Wolff Spouts, Valerie Eliot Smith Blog, Virology blog


Discussion forums: CFSItalia, Health Rising, MDJunction, Phoenix Rising, ProHealth


Open Letters[edit]


The information provided at this site is not intended to diagnose or treat any illness.

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history