MEpedia is a crucial tool for advocates, researchers, doctors, policy makers, and even the general public, that will allow them to find all current information on myalgic encephalomyelitis in one place.
When I first heard about MEpedia, I thought that since we already had Wikipedia, a fantastic group of patient forums, blogs and video channels, why do we need MEpedia? I realised fairly quickly that there is a long list of powerful reasons why MEpedia is not just valuable but critical to ME patients around the world.
1) More comprehensive, less conservative
First of all Wikipedia, although amazing, is incredibly conservative. The ME/CFS coverage is too limited, too simplistic, and does not always serve patients well. There’s no mention of most of the studies into the disease, and no coverage of critical subjects like the two-day exercise test. In theory patients could simply edit Wikipedia to cover these subjects, but Wikipedia has its own rules that mean we could never use it to do what we need and energy would be wasted fighting Wikipedia editors outside our community. We need to document the disease comprehensively but far beyond the conservative status quo that Wikipedia covers.
“There is clearly a benefit in collecting the very best information from these various sources and collating it in one place…”
2) Potential to reach outside audiences
Secondly, I initially thought MEpedia would just be a place to put information for patients, but soon started to wonder about other audiences. What if MEpedia covered the science and history of the disease to such a degree that it became the primary place that not only patients went to look for information, but also doctors, researchers (especially those new to the field), caregivers, family members, and journalists. Where can each of these groups go to find out about key aspects of the disease? Where can they read about the outbreaks, the latest science, the misconceptions,the problems with disease definitions, the two-day exercise test, ongoing and planned studies, and government policy and research in each country in the world? Where can they go to read about a specific researcher, see a list of their ME/CFS studies, read about them, watch public talks they have given, and contact them? Where can they go to see all the key information about and criticisms of the PACE study? The answer is that a place like that has not existed, but MEpedia has the potential to fill that gap.
3) A layer over the ME-web that pools information in one place
Related to that is the third benefit, which is that although our community is very effective at disseminating information online, it is a real problem that these studies, articles, interviews and other resources are then lost, abandoned in old forum posts, blog posts and on social media, where they are extremely hard to find later. Those outside the patient community don’t even know where to start looking. So for example why can’t people find all the published papers, talks, interviews & blogs about exercise, post-exertionl malaise (PEM), to quickly get up to speed on what we know, in one place? Why do they need to search PubMed, then search social media, then search YouTube, then search patient forums, then search for articles? Doing that is incredibly time-consuming which means busy people (especially professionals) will simply not do it. There is clearly a benefit in collecting the very best information from these various sources and collating it in one place, which makes it easier for everyone to find and link resources together that are related. Any patient who has seen an interesting quote, study or article mentioned on social media and failed to find it again later is aware of the problem that needs solving.
4) Flexible activism: anyone can contribute, anytime
Fourthly, patients are all sick to varying degrees and dealing with daily living is often incredibly hard, let alone contributing to activism and advocacy to improve the situation. But it turns out that wiki systems like MEpedia, are almost perfectly designed for us. They are incredibly flexible & collaborative. There are no editors, no managers, no plans, no hierarchy, and all contributors do what they can when they can – crucially using their own sense of what needs improving and how much or how little they can do, without asking for permission or being told what to do (we’re all too sick). MEpedia makes it possible for patients to contribute as little as five minutes a week or as much as ten hours a week, to moving the project forward, without needing to work with others or make any commitments. You can edit a page, any page, right now without even discussing it with others.
5) A common resource for advocacy and awareness
The fifth crucial aspect of MEpedia is that we are building a community asset, a castle for our community that we can use to defend ourselves from attacks, and to provide the strength and resources we need to act collectively. It is a powerful weapon forged from our shared knowledge. It is an investment in our future, to grow it and improve it so it is more useful and more valuable. As a practical example if a journalist expresses a misunderstanding about the disease on social media, which is better? For patients to respond and tell them they are wrong, or for those same patients to do that but including links to relevant MEpedia pages that clearly correct their misunderstanding in detail, with cited studies, references, and links to more reading, and contact details for the relevant people for them to contact?
“By each making small contributions to the MEpedia project, one mouse-bite at a time, we become better able to defend ourselves and lobby for more & better research & treatment.”
MEpedia is a new and unique tool in our belts, that makes all of us stronger and more able to defend ourselves. Posting information on social media lasts for a day, but posting it to social media AND MEpedia means that information is available not just for now, but for the long-term. As these community assets grow, they amplify our efforts and give us a louder voice.
Patients cannot march, we cannot protest, but by each doing “micro advocacy”, which might be less than hour a week, a few minutes a day, we can lock arms and work together, using technology to do it within the limits of our health. Our strength is not in what any one of us can do, we’re either too sick or just trying to survive, but it is in our numbers. There are a lot of us, trapped in beds and homes around the world, but there are a lot more ME/CFS patients than many other disease including Multiple Sclerosis, HIV, lupus and others. By each making small contributions to the MEpedia project, one mouse-bite at a time, we become better able to defend ourselves and lobby for more & better research & treatment.
MEpedia has a page to introduce you to basic editing which shows you how to edit, to do bullet lists, links, and references, and with that knowledge you can do over 80% of the editing work that needs doing. Science pages need improving, but also adding photos of doctors & researchers to their pages, finding their talks & interviews on YouTube, their web sites, twitter accounts, and adding information about patient groups & charities, the situation in each country (politics, policy, public & private healthcare, insurance, welfare support, research). Recently we started a page on ME in popular culture and many people contributed cartoons, TV shows etc that refer to the disease.
Please, today, open a page on MEpedia on a subject you know about (a treatment, your doctor, your country, a topic area, etc), click Edit, and improve it – even if just by modifying a single sentence or by fixing a typo. Every edit moves a page forward. Yes, you may add a link and not do it perfectly, you may not know how to make it look exactly right, but adding a link or a sentence does move the page forward. Editing has a “Preview” option so you can freely edit knowing you can Preview before saving it, so it is safe and you can relax. All edits can be quickly reversed, so there’s no such thing as a mistake as nothing is ever lost.