Tuesday, May 12, 2020

What YOU Can Do for ME/CFS (and Lyme) Awareness Day/Month!


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.

There are lots of easy ways for you to help spread the word, including:

  • Check out the #MEAction website for their virtual #MillionsMissing2020, 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, and more. Check out all the options at the link.
  • 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 frame or a #millionsmissing filter. I am changing my Facebook profile to this one below, with an explanation of the things I am missing due to ME/CFS (including backpacking!). Here is this year's #MillionsMissing profile pic frame or this frame from a few years ago. Twibbon also has a bunch of other options, including blue ribbons, from previous years (I couldn't find the one I used still available).

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 close 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). Most of you know that my son and I both have ME/CFS and Lyme, plus he has 2 other tick infections, but you may not know what that means, since the U.S. name, Chronic Fatigue Syndrome, is misleading. ME/CFS is a debilitating immune disorder that has dramatically changed our lives the past 18 years. If you see either of us out in the world or even just look at our 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 us out and about when we are having a good day, and even then, we need a LOT of extra sleep, I can't get through the day without a nap, we almost always have symptoms, and we have to carefully monitor and limit our activity levels. 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. Crashes are often unpredictable - I am badly crashed today (flu-like aches, sore throat & exhaustion) from a 1-hour Zoom meeting and a short walk yesterday! A simple infection like bronchitis can knock us out for weeks. 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 to us. 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 (you can also donate to ME/CFS research on that page). If you know a friend or family member who has or might have ME/CFS (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."
Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask), here are some other ways to help further ME/CFS education and research - share these resources widely!
  • Learn more about ME/CFS. Here are some sources of information you can share with others:
  1. What is ME/CFS? by Solve ME/CFS Initiative
  2. An Overview of ME/CFS by Phoenix Rising
  3. The CDC's information on ME/CFS
  4. Our public testimony on pediatric ME/CFS at the 2011 CFSAC meeting.
  • You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy 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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