AimsMEpedia 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.
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.
As a project of the non-profit group MEAction, MEpedia is supported by donations made to MEAction.
Interviews and articles
- consumed, What if we could take all of the information we have; Massive, Create One; interlinked; Base?, Structured Knowledge (Dec 6, 2015). "Announcing MEpedia: a knowledge base for ME science and history". #MEAction. Retrieved Mar 30, 2019.
- "MEpedia". www.facebook.com. Retrieved Mar 30, 2019.
- "MEpedia". www.facebook.com. Retrieved Mar 30, 2019.
- "The #MEAction Network". www.facebook.com. Retrieved Jun 4, 2019.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.
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.
mitochondria - Important parts of the biological cell, with each mitochondrion encased within a mitochondrial membrane. Mitochondria are best known for their role in energy production, earning them the nickname "the powerhouse of the cell". Mitochondria also participate in the detection of threats and the response to these threats. One of the responses to threats orchestrated by mitochondria is apoptosis, a cell suicide program used by cells when the threat can not be eliminated.