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.
7 thoughts on “Attend the MEpedia online meet-up this Thursday!”
Jaime, the piece above says the meeting is on Thursday ET, but the time converter has the meeting on Wednesday ET.
Would you please confirm which one it is?
Hmm, definitely the 7th Penelope! I think that the person who did the time converter was really just checking time of day. 🙂
Here is a time converter with the correct date.
Thank you for letting us know!
Thank you! 🙂
PEOPLE have obtained proclamations for Cities including Los Angeles (2nd largest in UIS) + Phoenix (Mark C), Houston + Anaheim (Harvey Carden) Sacramento (Marilyn Yu), and many others. Rather than let these sit and be of limited use, request they call be posted for USA, Ideally first by State, then City then date so you can see if current, and not bother cities/mayors if already done, but chase them down if not.
Having City proclamations of awareness are very valuable when you then approach a congress person or senators or healthcare professional, to get get local support or legislatiion. I am sitting on 4 and would love for you to post, since I have no website and know of at least 3 others I would be happy to send to anyone who can post these, just e-mail me at [email protected] I am happy if these are posted at more than one site, also including MEAdvocacy, SolveCFS, OMF or any other that might find this useful. If we get commitments from 50 states, 50 largest cities and others, we will be much further down the path to diagnose and cure ME.
I’m not able to take part in the online meeting today. In huge crash. will this meeting be recorded and available to view after today’s meeting time? Kathryn Mullins
Not that I’m aware of Kathryn, but someone will contact you shortly. 🙂
trying to get on to listen to meeting through BlueJeans as participant. dont know my meeting ID. in crash but just thought I could listen?
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