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.

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Five minute tasks
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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, Chlamydia Pneumonia, Mycoplasma Pneumonia, 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, Two day exercise test, Natural Killer Cell (NKC) Function, arginine vasopressin, MTHFR and other methylation mutations, infectious disesases

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

Doctors
Clinical Doctors, USA: Lucinda Bateman (UT) Derek Enlander; Susan Levine (NY) Nancy Klimas (FL) Courtney Craig; Daniel Peterson (NV) Phillipe Bottello; John Chia; OMI Clinic: David Kaufman and Andy Kogelnik (CA) Jacob Teitelbaum; Richard Podell (NJ) Laura Black (NC); Amy Yasko; Jose Montoya (CA)

Clinical Doctors, UK: Sarah Myhill, William Weir, Nigel Speight, Peter Behan, Charles Shepherd, Gabrielle Murphy, Amolak Bansal, Breakspear Medical

Clinical Doctors, Germany: Anna Dorothea Hoeck, Carmen Scheibenbogen

Clinical Doctors, Belgium: Kenny de Meirleir, Annemie Uyttersprot (GP)

Clinical Doctors, South Africa: Cecile Jadin

Clinical Doctors, Sweden: Carl-Gerhard Gottfries

Clinical Doctors, Italy: Umberto Tirelli, Lorenzo Lorusso, Eligio Pizzigallo

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

Research
Researchers and Intiatives
 * Researchers Australia
 * Research initiatives Australia


 * Researchers Canada
 * Research initiatives Canada


 * Researchers Germany


 * Researchers Norway


 * Researchers USA
 * Research initiatives USA

Studies, biobanks, registries, mailing lists
 * Researchers UK
 * Research initiatives Europe
 * 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 & New Zealand:
 * 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, Memorial Lists

Major developments/controversies: PACE trial, XMRV

ME and CFS in popular culture

Patient Advocacy
Patient Groups Australia: Emerge Australia, ME/CFS Australia (SA) Inc, ME/CFS Society of Western Australia, ME/CFS Society of NSW, ME/CFS Society of ACT

Patient Groups Belgium: Wake Up Call Beweging

Patient Groups Canada: National ME/FM Action Network, May12th.org, Action CIND

Patient Groups Ireland: Irish ME/CFS Association, Irish ME Trust

Patient Groups Italy: Associazione Malati CFS onlus, CFS Associazione Italiana onlus, CFS Italia

Patient Groups Netherlands: ME Vereniging Nederland

Patient Groups New Zealand: Associated New Zealand ME Society (ANZMES)

Patient Groups Norway: ME-Forskning

Patient Groups Sweden: Riksföreningen för ME-patienter

Patient Groups UK: Action for ME, Invest in ME, Change For M.E. Change For Us, Norfolk & Suffolk ME, ME Association, Tymes Trust, MEActionUK, Forward-ME, Hope 4 ME & Fibro NI, Welsh Association of ME & CFS Support, Sussex & Kent ME/CFS Society, Association of Young People with ME, Tyne & Wear ME/CFS Support Group, Edinburgh MESH, Leeds ME Network, The York ME Community, 25 Percent ME Group

Patient Groups USA: #MEAction, MEadvocacy, National Alliance for Myalgic Encephalomyelitis, Massachusetts CFIDS/ME & FM Association, May12.org, Wisconsin ME/CFS Association

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

Famous patients: Laura Hillenbrand, Martine McCutcheon, Stuart Murdoch, Charles Darwin, Florence Nightingale, Roger Cicero, Shirley Conran, Michael Crawford, Keith Jarrett, Glenn Beck

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 Matthews, Peter Kemp, Mindy Kitei Jeanette Burmeister, Giles Meehan, Erik Johnson, Lisa Petrison, Mary Ann Kindel, Gabby Klein, Eileen Holderman, Susan Kreutzer, Maryann Spurgin, Wendy Boutiler, 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

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

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