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'''Famous patients''': [[Laura Hillenbrand]], [[Martine McCutcheon]], [[Stuart Murdoch]], [[Charles Darwin]], [[Florence Nightingale]], [[Roger Cicero]], [[Shirley Conran]], [[Michael Crawford]], [[Keith Jarrett]], [[Glenn Beck]] | '''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 | '''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 Boutillier]], [[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 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]] |
Revision as of 03:46, June 10, 2016
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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Please contribute[edit | edit source]
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, and follow us on Twitter.
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[edit | edit source]
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 | edit source]
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[edit | edit source]
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 | edit source]
- Primer for doctors and researchers
- Primer for doctors and researchers/he
- Primer for family, friends and care providers
- Primer for journalists
- Primer for patients
- Primer for the public
The Disease[edit | edit source]
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
Disease Names & Definitions[edit | edit source]
No pages meet these criteria.
Potential treatments[edit | edit source]
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[edit | edit source]
Australia: Rashmi Cabena (VIC), Donald P Lewis (VIC), Richard Schloeffel (NSW), John Whiting
Belgium: Kenny de Meirleir, Annemie Uyttersprot (GP)
Germany: Anna Dorothea Hoeck, Carmen Scheibenbogen
Italy: Lorenzo Lorusso, Eligio Pizzigallo, Umberto Tirelli
South Africa: Cecile Jadin
Sweden: Carl-Gerhard Gottfries
United Kingdom: Amolak Bansal, Peter Behan, Breakspear Medical, Gabrielle Murphy, Sarah Myhill, Charles Shepherd, Nigel Speight, William Weir
United States:
- California: Phillipe Bottello; John Chia; Jose Montoya; OMI Clinic: David Kaufman and Andy Kogelnik; Amy Yasko
- Florida: Nancy Klimas
- Nevada: Courtney Craig; Kenny De Meirlier; Daniel Peterson
- New Jersey: Richard Podell; Jacob Teitelbaum
- New York: Derek Enlander; Susan Levine
- North Carolina:Laura Black
- Utah: Lucinda Bateman
Research[edit | edit source]
Researchers and Intiatives
Studies, biobanks, registries, mailing lists
Psychological Paradigm[edit | edit source]
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
By country: Diagnosis, treatments, insurance, disability, etc.[edit | edit source]
- Africa:
Kenya, Nigeria, Sierra Leone, South Africa, Category:Kenya, Category:Nigeria, Category:Outbreaks in Sierra Leone, Category:Outbreaks in the Republic of South Africa, Category:Sierra Leone, Category:South Africa
- Asia:
China, India, Indonesia, Iran, Israel, Japan, Russia, South Korea, Category:China, Category:Hong Kong, Category:India, Category:Indonesia, Category:Iran, Category:Israel, Category:Japan, Category:Philippines, Category:Russia, Category:South Korea
- Australia & New Zealand: No pages meet these criteria.
- Europe:
Austria, Belarus, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Latvia, Lithuania, Netherlands, Norway, User:Notjusttired, Poland, Portugal, Romania, Russia, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, Ukraine, United Kingdom, Category:Austria, Category:Belarus, Category:Belgium, Category:Bulgaria, Category:Croatia, Category:Czech Republic, Category:Estonia, Category:European research initiatives, Category:Latvia, Category:Lithuania, Category:Netherlands, Category:Russia
- North America:
Belize, Canada, Mexico, United States, Category:Belize, Category:Canada, Category:Central America, Category:Cuba, Category:Dominican Republic, Category:Mexico, Category:The Caribbean, Category:United States
- South America:
Argentina, Bolivia, Brazil, Chile, Colombia, Ecuador, French Guiana, Guyana, Paraguay, Peru, Suriname, Uruguay, Venezuela, Category:Argentina, Category:Bolivia, Category:Brazil, Category:Chile, Category:Colombia, Category:Ecuador, Category:Guyana, Category:Paraguay, Category:Peru, Category:Spanish-language articles, Category:Suriname, Category:Uruguay, Category:Venezuela
History[edit | edit source]
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
Patient Advocacy[edit | edit source]
Australia: Emerge Australia, ME/CFS Australia (SA) Inc, ME/CFS Society of Western Australia, ME/CFS Society of NSW, ME/CFS Society of ACT
Belgium: Wake Up Call Beweging
Canada: National ME/FM Action Network, May12th.org, Action CIND
Ireland: Irish ME/CFS Association, Irish ME Trust
Italy: Associazione Malati CFS onlus, CFS Associazione Italiana onlus, CFS Italia
Netherlands: ME Vereniging Nederland
New Zealand: Associated New Zealand ME Society (ANZMES)
Norway: ME-Forskning
Sweden: Riksföreningen för ME-patienter
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
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 Boutillier, 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[edit | edit source]
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