What could happen if we aggregated all of our knowledge?
When I first got sick in 2011, my primary care doctor and specialists had no idea what was wrong with me. The internet was my salvation, as it has been for so many of us. There was a huge learning curve, especially since the traditional sources of information are often inaccurate, misleading, and sometimes dangerous.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]What if we could take all of the information we have consumed and create one massive, interlinked, and structured knowledge base?[/pullquote] My salvation was websites like Phoenix Rising, Health Rising and the Hummingbirds’ Foundation for ME and countless blogs. And later, Heal Click (now AnyTreatment).
What if we could take all of the information we have consumed from all of those years of hundreds of people reading and writing about thousands of news and research articles across all of our forums and blogs and Facebook pages, and create one massive, interlinked, and structured knowledge base?
What if from now on all of us, every time we read or learn something new, could contribute that new piece of knowledge, one sentence at a time, to a central space that could remember and relate it to other knowledge?
We don’t really need to imagine; this is what thousands of Wikipedians around the world have been doing for over a decade. It’s my dream to use these same tools to harness the logics and intelligence of crowdsourcing for our tiny sliver of knowledge, going deep on the topics and ideas that matter to us.
To that end, we have launched ME-pedia.org, a wiki encyclopedia for the ME and CFS community.
If you would like to contribute, we also recommend you also join our group of MEpedia authors on #MEAction. Members there can also help you get started. (See also: How to Contribute.)
We are still writing our editorial policies, developing the site’s tools, and working out technical kinks.
That said, here are some of the principles that I think are crucial for making this project a success:
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.
We need to find ways – on pages distinct from the general knowledge base – to collate our observations and hypotheses, allow a little more room for speculation, while summarizing the literature that both supports and contradicts those same observations and hypotheses. Anecdote has gotten a bad name but an anecdote is a single observation and observations are how we generate testable hypotheses. We are at the very beginning of this field and have more access to ourselves (the test subjects) than anyone.
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. (We haven’t figured out how to balance those two goals yet but would love your help figuring it out!)
A multilingual future: Most of the scientific and medical information about this disease is in English. This is a huge barrier for patients in countries where English is not widely spoken.
Once the ME-pedia.org project has reached a certain maturity in terms of regular contributors and quality and quantity of content, we hope to open it up to other languages, to allow patients to translate content from English ME-pedia and write content in their own languages. MediaWiki, the software that powers Wikipedia, makes this easy. Wikipedia has already done this brilliantly.
We’re at the very beginning – we’d welcome your feedback, your support, and your contributions. Let’s see what we can build together!
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