Contents (condensed)

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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 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]

The Disease[edit | edit source]

Disease Names & Definitions[edit | edit source]

Potential treatments[edit | edit source]

Category page: Potential treatments

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

Clinical doctors worldwide[edit | edit source]

Clinical doctors worldwide are listed by country.

Research[edit | edit source]

Studies, biobanks, registries, mailing lists

Psychological Paradigm[edit | edit source]

By country: Diagnosis, treatments, insurance, disability, etc.[edit | edit source]

  • Africa:

Kenya, Nigeria, 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:India, Category:Indonesia, Category:Iran, Category:Israel, Category:Japan, Category:Philippines, Category:Russia, Category:South Korea

  • Europe:

Austria, Belarus, Belgium, Bulgaria, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Netherlands, Norway, 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:Denmark, Category:European research initiatives, Category:Finland, Category:France, Category:Germany, Category:Hungary, Category:Iceland, Category:Ireland, Category:Italy, Category:Latvia, Category:Netherlands, Category:Norway, Category:Poland, Category:Portugal, Category:Romania, Category:Russia, Category:Serbia, Category:Slovakia, Category:Slovenia, Category:Spain, Category:Sweden, Category:Switzerland, Category:Ukraine, Category:United Kingdom

  • Oceania:

Australia, New Zealand, Category:Australia, Category:New Zealand

  • North America:

Canada, Mexico, United States, Category:Canada, Category:Mexico, Category:United States

  • South America:

Argentina, Brazil, Category:Argentina, Category:Brazil, Category:Chile

History[edit | edit source]

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[edit | edit source]

Media[edit | edit source]

Many categories have multiple languages. Books and Discussion Forums are an example. Example of multiple countries are Film.

Open Letters[edit | edit source]

The information provided at this site is not intended to diagnose or treat any illness.

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history