MEpedia

MEpedia is a crowd-sourced, Wikipedia-style encyclopedia of the news, history, and science of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS).

Aims

MEpedia aims to collect, in one place, the diverse knowledge scattered throughout the medical, scientific, and patient communities concerning ME, CFS, and related conditions. Addressing the patient community at its outset, MEpedia announced the following core principles:

A commitment to evidence: That means letting go of certainty and grappling with complexity and contradiction, reporting negative and null results, not simply those that support a given theory.

A commitment to transparency: Transparency means citing every fact – whether a fact is one that has existed in high school biology textbooks dating back to 1930s or is an observation made by “some patients,” it can and should be cited. It also means contextualizing it so that it is easy for a reader to discern the quality of the information. There are differences in the quality of information gleaned from a small study versus a large one; a study that used subjective versus objective measures; a study that used the Oxford Criteria or the Canadian Consensus Criteria; a finding that was found only once or is supported by several studies. That our evidence base is weak after decades of underinvestment in research does not mean that we can’t use it – simply that the limitations must be made abundantly clear.

A broad view: Fortunately, we know a lot more about the immune system, the brain, the gut, the microbiome, the mitochondria, our cell membranes and the role that all of these play in other inflammatory or autoimmune diseases, at least compared to ME or CFS. We can assemble that information and relate it to the studies about ME and CFS we do have.

Room for debate and speculation: That said, so much of what we observe in our own bodies has not been scientifically proven or explained, not in small part because there has been so little research. ... Anecdote has gotten a bad name but an anecdote is a single observation and observations are how we generate testable hypotheses. ... So to allow us to discuss what has not been proven in a way that is difficult to do in a traditional Wikipedia article, we’ve created a category of pages called Medical hypotheses.

Balancing the technical with the basics: While the dream is to have a literature review so accurate, comprehensive, and technical that it can serve as a launching point for new scientists entering the field, those pages on basic science should live alongside pages that any patient at any level of exposure to science can find useful and accessible. 

Notable people

• Jen Brea
• Jaime Seltzer

History

MEpedia was launched by Jen Brea of MEAction on December 6, 2015. On May 19, 2018, MEpedia announced that over 30,000 edits had been made to pages. On July 19, 2018, MEpedia announced that the site had reached 5 million views. On June 4, 2019, MEAction announced that the site had surpassed 1000 registered editors.

Funding

As a project of the non-profit group MEAction, MEpedia is supported by donations made to MEAction.

Online presence

• Website
• Facebook Page
• Facebook Group
• Twitter

See also

• How to contribute

Learn more

• MEaction MEpedia site
• Jo Moss Blog Post

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

Oxford criteria A set of diagnostic criteria for chronic fatigue syndrome. These criteria focus on "fatigue" as the defining symptom.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

microbiome The full collection of microscopic organisms (especially bacteria and fungi) which are present in a particular environment, particularly inside the human body.

cell membrane A very thin membrane, composed of lipids and protein, that surrounds the cytoplasm of a cell and controls the passage of substances into and out of the cell.