What can you do for ME activism today?
Many patients, caregivers, physicians and educators would like to contribute to ME activism in a meaningful way, but patients have limited resources and energy.
ME patients aren’t working alone, however: if even a small percentage of the ME population were to work together, we would still be millions strong. Let’s come together to work on MEpedia, a crucial tool for advocates, researchers, clinicians, and policy-makers that will provide accurate information on myalgic encephalomyelitis — all in one place.
This is an ideal path to advocacy for patients, because we can work together in small bursts that don’t push our energy envelopes. You might be able to help out if you:
- Know a lot about the advocacy and history of ME
- Have a science background
- Are a good researcher
- Are great at summarizing news and media
- Are familiar with important posts on patient forums (where essential data is gathered, then lost forever)
- Have community organizing skills
- Are familiar with the work of a particular researcher or clinician
- Are great at gathering resources for others
- Are ready to lend a helping hand!
Programming knowledge is not required to help out — MEpedia has a page to introduce you to basic editing which shows you how to edit, to do bullet lists, links, and include references. The pages have preview buttons so that you can check your work, but we value information over formatting. If it doesn’t end up looking ‘just right’, another editor will come along and tweak any issues, so don’t be afraid to get your hands dirty! You can even gather resources for those who are more comfortable with editing.
Chat with us online this Thursday, July 7, at 12pm ET, to learn more about this vital activism project and how you can contribute! Click here to find out when that is in your time zone.
RSVP by clicking on the button below!
“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 higher-quality research and treatment.”
MEpedia 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. For example, if a journalist expresses a misunderstanding about ME, wouldn’t it be useful to have a place to direct them, where there are multiple resources they can see for themselves?
As these community assets grow, they amplify our efforts and give us a louder voice. By 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 provoke change within the limits of our health.
The only way that misinformation about ME will disappear is if more genuine, verifiable knowledge takes its place.
Click here to learn more about the potential and value of the MEpedia project.
Please follow MEpedia on Twitter and Facebook and send us an email at [email protected], if you have any questions about the process.