MEpedia:Contents

Welcome to MEpedia

We are co-creating a knowledge base on the history, science and medicine of ME and CFS. MEpedia.org is a project of #MEAction and the patient community. Read more about MEpedia and its principles.

Please Contribute
You 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 How to contribute. Please join the MEpedia online forum, Facebook group, and follow us on Twitter.

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: Babesia, Bartonella, Borna Disease Virus, Chlamydia pneumoniae, Coxsackie A, Coxsackie B, cytomegalovirus, 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

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

Signs and symptoms: Ataxia, Cognitive dysfunction, Fatigue, Food intolerance, Irritable bowel syndrome, Migraine, Muscle fatigability, Neurally mediated hypotension, Nonepileptic seizure, Optical dysfunction, Orthostatic intolerance, Post-exertional malaise, Postural orthostatic tachycardia, Seizure, Sleep disturbance

Medical hypotheses: Amygdala hypothesis,  Autoimmunity Hypothesis, Fatty acid hypothesis, Hygiene 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

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-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

Tests: Brain imaging, Cardiopulmonary exercise test, CellTrend diagnostic test, C reactive protein, EEG, Erythrocyte sedimentation rate, Exercise, MRI, Orosomucoid, qEEG, SF-36, SPECT, Tilt Table, Two day exercise test

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, Calicitriol, Calcidiol, Cortisol, Dopamine, Estriadol, Epinephrine, Estrogen, Glucocorticoid, Glutamate, Histamine, Hormones, Melatonin, Neurotransmitters, Norepinephrine, Oxytocin, Progesterone, Prolactin, Prostaglandins, Serotonin, Testosterone, Vasopressin

Blood donation

Names & Definitions
Names: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, ME/CFS, Systemic Exertion Intolerance Disease, Chronic Fatigue Immune Deficiency Syndrome, Chronic epstein barr, Neuro-Inflammatory and Oxidative Fatigue

Related conditions: Chronic lyme disease, Mold illness, Biotoxin illness, Environmental illness, Multiple Chemical Sensitivity, Gulf War Illness, Mast cell activation disorder, Mastocytosis, Ehlers Danlos Syndrome, Fibromyalgia, Small intestine bacterial overgrowth, Lactic acidosis, Autoimmune disease, Cancer, Thyroid disease, Non-Hodgkin's lymphoma, Multiple Sclerosis, Dysautonomia, Mitochondrial Disorders, Chronic Epstein Barr, Raynaud's Syndrome

Definitions: Definitions of ME and CFS, Canadian Consensus Criteria, International Consensus Criteria, Oxford criteria, Fukuda criteria, Holmes criteria, Empirical definition, Ramsay definition, London criteria, Nightingale definition, Reeves criteria

Acronyms: List of acronyms

Category page: Potential treatments

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

Supplement Sources: Pure Formulas, Be Well By Dr Frank Lipman, Seeking Health, MITOQ, Aloha, ProHealth, Thrive Marketplace, HolisticHeal

Foods: Cocoa (Dark chocolate)

Herbs: Medical marijuana

Diets: Vegan diet, Vegetarian diet, Paleo diet, Ketogenic diet, GAPS diet, Specific carbohydrate diet, Low Histamine 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:

Other drug treatments: Rituximab, Trazodone, Prednisone, Chelation

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

Uncategorized interventions: Cold immersion, Fecal matter transplant/Faecal bacteriotherapy, Helminth therapy, Pacing, Energy envelope, Hyperbaric oxygen, Ozone, Altitude, Exercise, Vagus nerve stimulation

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 Kogelnick (CA) Jacob Teitelbaum; Richard Podell (NJ) Laura Black (NC); Amy Yasko

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

Clinical Doctors, Germany: Anna Dorothea Hoeck, Carmen Scheibenbogen

Clinical Doctors, Belgium: Kenny de Meirleir

Clinical Doctors, South Africa: Cecile Jadin

Clinical Doctors, Sweden: Carl-Gerhard Gottfries

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

Research
Notable studies

 Research initiatives USA: Open Medicine Foundation, Chronic Fatigue Initiative, Stanford ME/CFS Initiative, Microbe Discovery Project, Bateman Horne Center, Workwell Foundation, Center for Infection & Immunity, Solve ME/CFS Initiative, Simmaron Research

 Researchers USA: Ronald Davis, Jarred Younger, Alan Light, Kathleen Light, Andreas Kogelnik, Jose Montoya, David Bell, Mady Hornig, Eric Schadt, Ian Lipkin, John Chia, Rosemary Underhill, Suzanne Vernon, David Berg, Nancy Klimas, Dane Cook, Staci Stevens, Mark VanNess, Christopher Snell, Zaher Nahle, Rich Van Konyenburg, Judy Mikovits, Paul Cheney, Michael Van ElZakker, Zaher Nahle, Michael Zeineh

 Research initiatives Europe: ME Research UK, Cure ME (UK), Invest in ME (UK), UK CFS/ME Collaborative, Invest in ME Conference (UK), Ramsay Research Fund (UK), European ME Research Group, Charité Berlin (Germany), Wake-Up Call (Belgium)

Research initiatives Australia: National Centre for Neuroimmunology and Emerging Diseases

Research initiatives Canada: Nightingale Research Foundation

 Researchers UK: Melvin Ramsay, Donald Acheson, Gordon Parish, Jonathan Kerr, Amolak Bansal, Julia Newton, Elizabeth Dowsett, Simon Carding, James Mowbray, John Richardson, Luis Nacul, Derek Pheby, Jonathan Edwards, Geraldine Cambridge, George Davey Smith

 Researchers Australia: Elaine DeFreitas, Sonya Marshall-Gradisnik, Donald Staines, Michael Maes

 Researchers Germany: Carmen Scheibenbogen

 Researchers Norway: Olav Mella, Øystein Fluge

 Researchers Canada: Byron Hyde, Patrick O. McGowan

Biobanks & patient registries: CURE-ME (UK), OMI OpenMedNet (US), CFI CFS BioBank (US), SolveCFS BioBank (US), Simmaron Research BioBank (US)

Psychological Paradigm
Psychological paradigm, mind-body approaches and related interventions: PACE trial, graded exercise therapy, cognitive behavioral therapy, biopsychosocial, 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

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

Primers

 * Primer for doctors and researchers
 * Primer for patients
 * Primer for family, friends and care providers
 * Primer for science journalists

Politics, Government & Insurance
United States: Centers for Disease Control & Prevention (CDC), Institute of Medicine report (IOM), National Institutes of Health (NIH), Pathways to prevention report, Trans-NIH Working Group, UNUM

United Kingdom: Chief Medical Officer Report 2002, Medical Research Council (MRC), National Health Service (NHS), NHS Scotland, National Institute for Health and Care Excellence (NICE, England & Wales), Science Media Centre (SMC), Secret files, Sense About Science, UNUM

ME Around the World: Belgium, Canada, Denmark, Finland, France Germany, Ireland, Italy, Norway, Spain, Sweden, United Kingdom, United States

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

Outbreaks: List of outbreaks: Incline village, Lyndonville, Akureyri, Los Angeles, Royal Free Hospital, Dalston, Adelaide, Ayrshire

Deceased patients: Sophia Mirza, Vanessa Li, Lynn Gilderdale, Emily Collingridge, Chardale Dotson Irvine, Oliver Coles, Brynmor John In Memoriam, The HFME memorial lists

Major developments/controversies: PACE trial, XMRV, Important events timeline

Patient Advocacy
Patient Groups USA: #MEAction, ME Advocacy, National Alliance for Myalgic Encephalomyelitis

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

Patient Groups Australia: Emerge Australia

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

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

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

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

Patient Groups Norway: ME-Forskning

Patient Groups Sweden: Riksföreningen för ME-patienter

Notable patients: Karina Hansen, Joanne, Sophia Mirza, 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, Beth Mazur, Catherine Hale, Mary Schweitzer, Toni Bernhard, Guido den Broeder, Frank Twisk, Steven Lubet, Giada Da Ros, Roberta Pelletta Carol Head, Ean Proctor

Patient Groups Netherlands: ME Vereniging Nederland

Celebrity patients: Laura Hillenbrand, Martine McCutcheon, Stuart Murdoch

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 and Don Tannenbaum

Notable Quotes: Quotes

Advocacy/Fundraising Initiatives: ChilliMEChallenge

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, Toxic Tiredness, I Remember Me

Articles: List of news articles on ME and CFS

Books: Plague, The State of Me, Love and Fatigue in America, Osler's Web, America's Biggest Cover-Up, Authors of our own misfortune, Reviving the Broken Marionette, Why ME?, Stanchi: Vivere con la Sindrome da Fatica Cronica, Stanchi si diventa, Frammenti di ME, Encounters with the Invisible, 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

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

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

Discussion Forums: Phoenix Rising, CFSItalia, MDJunction