MEpedia:Contents

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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.

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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

Triggers and risk factors: Blood donation, Candidiasis, Causes of death, Epidemiology, 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, Erythrocyte sedimentation rate, Exercise, MRI, qEEG, SPECT, Tilt Table, Two day exercise test

Citizen science: 23andMe, American Gut, Any Treatment, Mendus, Phoenix Rising, UBiome

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

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

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

Acronyms: List of acronyms

Potential treatments
Supplements: Probiotics, AHCC, CoQ10, L-carnitine, MitoQ, NADH, PrescriptAssist, Mutaflor, GcMAF, Colostrum, Transfer factors, Fish oil, EPA, DHA, Taurine

Foods: Cocoa (Dark chocolate)

Herbs: Medical marijuana

Diets: Vegan diet, Vegetarian diet, Paleo diet, Ketogenic diet, GAPS diet, Specific carbohydrate 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, Prednisone, Chelation

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

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

Doctors
Clinical Doctors, USA: Lucinda Bateman, UT; Derek Enlander, NY; Nancy Klimas, FL; Courtney Craig; Daniel Peterson, NV; Phillipe Bottello;  John Chia, CA; Jacob Teitelbaum, HI; Richard Podell, NJ; Susan Levine, NY; Laura Black, NC; Norton Fishman, MD;

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 Invest in ME UK CFS/ME Collaborative Invest in ME Conference Ramsay Research Fund European ME Research Group

 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

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: Institute of Medicine report Pathways to prevention report Trans-NIH Working Group National Institutes of Health Centers for Disease Control & Prevention UNUM

United Kingdom: National Institute for Health and Care Excellence (England & Wales) National Health Service Science Media Centre UNUM NHS Scotland Secret files

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

History
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

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

Patient Advocacy
Patient Groups USA: #MEAction, ME Advocacy

Patient Groups UK: 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

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

Patient Groups Ireland: Irish ME/CFS Association

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

Notable patients: Karina Hansen, Joanne, Sophia Mirza, Lynn Gilderdale, Emily Collingridge, Whitney Dafoe, Tom Kindlon, Graham McPhee, Jennie Spotila, Laura Hillenbrand, Martine McCutcheon, 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, Stuart Murdoch, Mary Schweitzer, Toni Bernhard, Frank Twisk, Steven Lubet, Giada Da Ros, Roberta Pelletta Carol Head

Notable healthy advocates: Angela Kennedy, Mary Dimmock, Greg Crowhurst, Malcolm Hooper, Nicole Castillo, Llewellyn King, Erica Verrillo, Tom Whittingham, Mike Harley

Notable Quotes: 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 Toxic Tiredness

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

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 Unbroken' author's personal story of courage and resilience

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

Discussion Forums: Phoenix Rising CFSItalia

Open Letters
List of open letters from researchers List of open letters from patient advocates and advocacy organizations