MEpedia:Contents

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.

Want to take a look around? See our most popular pages, check our newest pages, or visit a random page. You can also browse a list of all pages or see a condensed version of this page.

Please contribute
Anyone can create pages, write content, add links/citations, fact-check, or even just fix typos. Get involved and help the patient community identify all of the best and most important resources for our disease and its research, treatment and history. Start now, read Editorial Guidelines and How to contribute. Please join the MEpedia online forum, Facebook group, follow us on Twitter and subscribe to us on Reddit.

Pages that are a Red link or with Blue link* need to be populated or further populated. (This has nothing to do with a page cleanup note.) At times there will be a Blue link but the page is not populated as a Category may create a blue link or the page could use more information especially as to how it pertains to ME/CFS. If a page is populated please make sure page is a Blue link and/or  *  removed.

Five minute tasks
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
Science: Citric acid cycle, Mitochondria, Exercise, Ampligen, Natural killer cell, Central nervous system, Nitric oxide hypothesis, Brain, Brain imaging

History and politics:

A note on ME v. CFS
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.

The Disease
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 Syndrome, 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, Estriadol, Epinephrine, Estrogen, Glucocorticoid, Glutamate, Histamine, Hormones, Leptin, Melatonin, Neurotransmitters, Norepinephrine, Oxytocin, Progesterone, Prolactin, Prostaglandins, Serotonin, Testosterone, Vasopressin, Thyroid, MSH, HGH

Blood donation

Potential treatments
Category page: Potential treatments

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

Foods: Cocoa (Dark chocolate)

Herbs: Medical marijuana, Kampo, Equilibrium

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

Antivirals: Valgancyclovir, Famciclovir, Valaciclovir, Acyclovir

Immunomodulators and immunostimulants: Ampligen, Low dose naltrexone, Equilibrant, Intravenous immunoglobulin, Staphylococcal vaccine, Immunovir, Medicinal mushrooms, Interferon

Anti-inflammatory drugs: Sulfasalazine

Anti-fungal drugs: Fluconazole, Itraconazole

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

Toxin avoidance/removal: Fasting, Mold avoidance, Coffee enema

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

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

Doctors
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, Gabrielle Murphy, Sarah Myhill, Vinod Patel, Charles Shepherd, Nigel Speight, William Weir

United States:


 * California: Phillipe Bottello, John Chia, Kent Holtorf, David Kaufman, Andreas Kogelnik, Jose Montoya, Garth Nicolson, OMI Clinic, Amy Yasko, Holtorf Medical Group
 * Florida: Daniel Dantini, Nancy Klimas, Irma Rey, Maria Vera
 * Georgia: Holtorf Medical Group
 * Hawaii: Jacob Teitelbaum
 * Maryland: Alan Weiss, Alan Pocinki, Peter C. Rowe, Ritchie Shoemaker
 * Michigan: A Martin Lerner
 * Missouri: Joseph Brewer
 * Nevada: Courtney Craig, Kenny de Meirlier, Daniel Peterson
 * New Jersey: Richard Podell
 * New York: Derek Enlander, Susan Levine, Benjamin Natelson, Maureen Hanson
 * North Carolina: Laura Black, Paul Cheney, Charles Lapp
 * Pennsylvania: Joseph Garabedian, Garabedian Clinic, Holtorf Medical Group
 * Utah: Lucinda Bateman

Research
Researchers
 * Australia researchers
 * Canada researchers
 * Denmark researchers
 * Germany researchers
 * Norway researchers
 * UK researchers
 * USA researchers

Research initiatives Studies, biobanks, registries, mailing lists
 * American research initiatives
 * Australian research initiatives
 * Belgian research initiatives
 * British research initiatives
 * Canadian research initiatives
 * European research initiatives
 * German research initiatives
 * Notable studies
 * Biobanks & patient registries*
 * Researcher mailing lists

Psychological Paradigm
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, 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.

 * Africa:
 * Asia:
 * Australia:
 * Europe:
 * North America:
 * South America:

History
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

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
Patient groups
 * American patient groups
 * Australian patient groups
 * Belgian patient groups
 * British patient groups
 * Canadian patient groups
 * Dutch patient groups
 * Irish patient groups
 * Italian patient groups
 * New Zealand patient groups
 * Norwegian patient groups
 * Swedish patient groups

Advocacy/Fundraising Initiatives: Chilli ME Challenge, ME Foggy Dog

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, Ruddy Red, Maryann Spurgin, Wendy Boutilier, L.A. Cooper

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

Journals, TV, Articles, Books, Film, Interviews, Blogs, Discussion Forums
Journals: The Lancet, Lancet Psychiatry, The BMJ, Journal of Chronic Fatigue Syndrome

TV: Sick and Tired (US), Sick and Tired - BBC (UK), Toxic Tiredness, I Remember Me, BBC Documentary on life with severe ME/Chronic Fatigue Syndrome (UK)

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): America's Biggest Cover-Up, Authors of our Own Misfortune? The Problems with Psychogenic Explanations for Physical Illnesses, Chronic Fatigue Syndrome, Chronic Fatigue Syndrome: A Biological Approach, Chronic Fatigue Syndrome: A Treatment Guide, Chronic Fatigue Syndrome: A Treatment Guide - 2nd Edition, The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome, Encounters with the Invisible, Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies, The Hidden, Lighting Up a Hidden World: ME/CFS, Living with ME, Love and Fatigue in America, ME - The New Plague, 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, Ramsay's Disease - Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of 'CFS', Reviving the Broken Marionette, Severe ME/CFS: A Guide to Living, Severe ME - Featuring: "Justice for Karina Hansen", Severe ME: Notes for Carers, The Sound of a Wild Snail Eating, The State of Me, Why ME

Books (Italiano): Stanchi: Vivere con la Sindrome da Fatica Cronica, Stanchi si diventa, Frammenti di ME

Books (Nederlands): Heden ik

Books (Norsk): De Bortgjemte

Books (Suomi): CFS:n ja fibromyalgian hoito

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

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

Interviews: ME/CFS Alert, Science for Patients

Blogs: Health Rising, Occupy CFS, MEAction, ME Advocacy, Courtney Craig, Cell Fatigue, CFS Patient Advocate, Constant F****** S***, ME Association, Onward Through the Fog, Nice Guidelines, Valerie Eliot Smith Blog, CFS Remission, About.com Health FMS/ME/CFS, Just ME, ME/CFS Ghost, Utting-Wolff Spouts

Discussion Forums: Phoenix Rising, CFSItalia, MDJunction