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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Primers
Choose a Primer to learn about the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Please contribute
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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, Natural killer cell, Central nervous system, Nitric oxide hypothesis, Brain, Brain imaging, Microbiome hypothesis, Primer for journalists (Prognosis section), PACE trial

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:, Brucella, Coxsackie A, Fungal infection,Giardia lamblia, Human T-lymphotropic virus, Influenza, Ross River Virus,

Triggers and risk factors:, Candidiasis, Bacterial disease onset, Fungal disease onset

Signs and symptoms:, Auditory sequencing problems, Balance problems, Difficulty comprehending social cues, Dyslexia, Executive function problems, Food intolerance, Hypermobility, Low motivation, Orientation in space problems, Planning problems, Receptive language problems, Slowed thought

Medical hypotheses: Acquired immune and mitochondrial dysfunction hypothesis, Amygdala hypothesis*, Autoimmune hypothesis, Encephalitis, Autoimmune encephalitis, Cell danger response, Fatty acid hypothesis, Hygiene hypothesis*, Hypercoagulation hypothesis, Immune exhaustion hypothesis*, Infectious disease hypothesis, Ken Lassesen's model, Methylation cycle hypothesis, Microbiome hypothesis, Mold hypothesis*, Nitric oxide hypothesis, Omega 3 fatty acid hypothesis, Patricia Kane protocol, Vagus nerve hypothesis, Viral onset hypothesis,

Body systems:, Tumor necrosis factors, VEGF, Leaky gut, Antibody, Autoantibody, Chemokine, Glutamate excitotoxicity, IL-2, IL-10,IL-17, Interleukin 18, Leaky brain, Macrophage

Tests:, qEEG/LORETA, Erythrocyte sedimentation rate, MRI, Natural Killer Cell (NKC) Function, infectious diseases

Citizen science: 23andMe, American Gut, Any Treatment, British Gut Project,Mendus, Phoenix Rising, UBiome, Know Your Genetics: Dr. Amy Yasko, WellnessFX, CH3Nutrigenomics; Dr. Amy Yasko, MTHFR.net, Genetic Genie, LiveWello

Biochemistry and cell biology:, Endocannabinoid, Glucocorticoid, Nitric oxide, Oxidative phosphorylation, Phenylalanine

Nutrients:, Deadlock quartet, Sam-e, TMG

Neurotransmitters and hormones: Acetylcholine, Alpha-Melanocyte-stimulating hormone, Calicitriol, Calcidiol, Cortisol, Dopamine, Endorphin, Estriadol, Epinephrine, Estrogen, Glucocorticoid, Glutamate, Histamine, Hormones, Leptin, Melatonin, Neurotransmitters, Norepinephrine, Oxytocin, Progesterone, Prolactin, Prostaglandins, Serotonin, Testosterone, Vasopressin, Thyroid, MSH, HGH

Blood donation

Research
Researchers
 * Australia researchers
 * Belgium researchers
 * Canada researchers
 * Chile researchers‎
 * Croatia researchers‎
 * Denmark researchers
 * Germany researchers
 * Italy researchers
 * Israel researchers
 * Japan researchers‎
 * Latvia researchers‎
 * Netherlands researchers
 * New Zealand researchers
 * Nigeria researchers
 * Norway researchers
 * South Korea researchers‎
 * Spain researchers‎
 * Sweden 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

Disclaimer: The following is a range of some of the interventions (including anecdotal) that have been used by patients to try to treat both individual symptoms and the disease as a whole, some of which have been researched and many which have not. The vast majority lack ANY reliable evidence of efficacy. Many carry significant side-effects and risks. This content is provided for information ONLY. MEpedia is not to be used to diagnose or treat any illness. Patients must consult a clinician before embarking on treatment.

Pharmaceuticals
Anti-fungal drugs: Fluconazole, Itraconazole

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

B-cell depletion: Rituximab

Immunomodulators and immunostimulants: Ampligen, Low dose naltrexone, Intravenous immunoglobulin, Staphylococcal vaccine, Interferon

Antivirals: Valganciclovir, Famciclovir, Valaciclovir, Acyclovir

Anti-inflammatory drugs: Sulfasalazine

Herbs, Supplements and Nutraceuticals
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, L-arginine, L-citrulline, n-acetylcysteine

Supplement sources: Pure Formulas, Be Well By Dr Frank Lipman, Seeking Health, MITOQ, Aloha, ProHealth, Thrive Marketplace, HolisticHeal, Vitacost.com

Herbs: Medical marijuana, Kampo, Equilibrant

Immunovir, Medicinal mushrooms

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

Foods: Cocoa (Dark chocolate)

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

Category page: Potential treatments

Clinicians
Australia:, John Whiting

Belgium:, Annemie Uyttersprot (GP)

Canada: Chile: Denmark: Finland: Germany: Ireland: Italy:, Lorenzo Lorusso, Eligio Pizzigallo, Umberto Tirelli

Japan: New Zealand: Norway: South Africa:, Peter Tarbleton

South Korea: Sweden: United Kingdom:, Breakspear Medical,   Vinod Patel, Raymond Perrin, Andrew Wright

United States: Holtorf Medical Group Joseph Brewer
 * California:, Phillipe Bottello, Kent Holtorf, Open Medicine Foundation, Amy Yasko, Holtorf Medical Group
 * Colorado:
 * Connecticut:‎
 * Florida:, Daniel Dantini
 * Georgia:
 * Hawaii:
 * Illinois:
 * Iowa:
 * Louisiana :
 * Maryland:, Alan Weiss
 * Massachusetts:
 * Michigan:‎
 * Minnesota:‎
 * Mississippi:‎
 * Missouri:‎
 * Nevada:‎, Robert Fredericks
 * New Jersey:
 * New York:
 * North Carolina:
 * Pennsylvania: Joseph Garabedian, Garabedian Clinic, Holtorf Medical Group
 * Texas:
 * Utah:
 * Virginia:
 * Washington:

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, Information for Patients and Hospital Staff Regarding Treatment of Patients with M.E. (The Grace Charity for M.E.)

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, Reverse therapy, Gupta programme, Psychoneuroimmunology, Meditation, Bodily distress syndrome, Functional somatic syndrome, Psychosomatic illness, Neurasthenia, Medically unexplained symptoms

Psychological paradigm proponents:

Psychological paradigm critics:

Patient mental health

By country: Diagnosis, treatments, insurance, disability, etc.

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

History
Important events timeline

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

Outbreaks: Outbreaks: Akureyri; Los Angeles 1934; 1937 - Erstfeld, Switzerland; 1937 - St. Gallen, Switzerland; 1939 - Degersheim, St. Gallen, Switzerland; Adelaide 1949; 1953 - Rockville, Maryland, USA; 1954 - Seward, Alaska; 1954 - Dalston, Cumbria, England; Royal Free Hospital 1955; 1955 - Durban and Durban City, South Africa; 1956 - Punta Gorda, Florida, USA; 1958 - Athens, Greece; 1970-71 - London, England; Sacramento 1975; Ayrshire 1980; 1984 - Tapanui & West Otago, New Zealand; Incline Village 1984; 1984 - Chapel Hill, North Carolina, USA; 1985 - Lyndonville, New York, USA; Bergen Norway 2004

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

Psychosomatic explanations for disease - History of misdiagnosis of illnesses []

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

How To Advocate: Community and System Change

Advocacy/Fundraising Initiatives:

Famous people with ME, CFS, and/or FMS:

Notable people with ME, CFS, and/or FMS: 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, Margaret Williams, 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, Maryann Spurgin, Wendy Boutilier, L.A. Cooper, Donna M. Pearson, Mary Gelpi

Notable advocates: Angela Kennedy, Carol Head, 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, Courtney Miller

Notable Quotes: List of Quotes, Individual Quotes

Illuminated landmarks

Journals, TV, Articles, Books, Film, Interviews, Blogs, Discussion Forums
Journals:

TV:

Articles: List of news articles on ME and CFS, In the Expectation of Recovery

Books (Deutsch):

Books (English):

Books (Italiano):

Books (Nederlands):

Books (Norsk):

Books (Suomi):

Books (Svenska):

Film:

Interviews: ME/CFS Alert, Science for Patients

Blogs:

Discussion forums: