May 12 is International ME/CFS Awareness Day, and the entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month). You can do a number of easy things from home to help raise awareness all month long, including:
- Check out the #MEAction website
for their #MillionsMissing2023, with links to different ways
that you can help to build awareness, from home, by posting on social
media, joining virtual events online, downloading graphics (like the one above), and more.
Check out all the options at the link, including the Activism at Home page and its toolkit.
- Post a personal message on social media (or e-mail it) to your friends and family to help them better understand what ME/CFS is and how it affects you (see mine, below).
- Edit your profile pics on social media with a #millionsmissing frame. Here is the #MillionsMissing profile pic frame. Twibbon also has a bunch of other options, including blue ribbons, from previous years.
As mentioned, I also use this day/month to tell my friends and family about ME/CFS, too. I use my main Facebook account for just friends and family (though you can follow my blog on Facebook), so I rarely mention my illness there, but May is the exception each year. Here is what I am posting on my Facebook wall for my friends and family:
"Today is ME/CFS Awareness Day & May is ME/CFS Awareness Month (and Lyme Disease Awareness Month). We've gone from 2 million with ME/CFS in the U.S. in 2019 to more than 20 million (including many children) with the addition of long-COVID. Most of you know that my son and I both have ME/CFS and Lyme, but you may not know what that means. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 21 years. If you see me out in the world or even just look at my photos on Facebook, you may think we live pretty normal lives ... but that's why this is called an Invisible Illness. In reality, you only see me out and about when I am having a good day, and even then, I need a LOT of extra sleep, I can't get through the day without a nap, I almost always have symptoms, and I have to carefully monitor and limit my activity. One of the main characteristics of ME/CFS is that exercise or exertion makes us sicker, so our lives are defined by limits and restrictions. Even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks afterward. But, we are the lucky ones. About 25% of those with ME/CFS are housebound or even bedridden. Worst of all, few people--and very few doctors--understand ME/CFS, so Awareness Month is really important. We don't want pity, just understanding. You can help to spread the word by sharing this post or clicking the link to learn more. If you know a friend or family member who has or might have ME/CFS or long-COVID (or tick infections which have similar symptoms), I would be glad to help them find the right doctors, accurate diagnoses, and/or effective treatments. We are always glad to share our experiences and help others, and we are happy to answer questions. Thanks for reading this far.
https://solvecfs.org/me-cfs-long-covid/about-the-disease/ "
- Learn more about ME/CFS. Here are some sources of information you can share with others:
- What is ME/CFS? by Solve ME/CFS Initiative
- Facts About ME/CFS by Phoenix Rising
- The CDC's information on ME/CFS
- You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know inflation has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities. I also set up a recurring donation for one of these of just $5 a month - easily affordable but not noticeable day by day!
- You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
- You can even earn money for CFS research when you use a search engine:
Happy Awareness Day/Month! Help to spread the word!
(feel free to link to this page or share its information)
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