Thursday, May 10, 2018

What YOU Can Do for ME/CFS Awareness Day/Month

May 12 is International ME/CFS Awareness Day, which unfortunately falls on Mother's Day weekend again this year when we are always away visiting my mom, so I am posting this information today to help you prepare. The entire month of May is ME/CFS Awareness Month (and also Lyme Disease Awareness Month), so you can do a number of easy things to help raise awareness all month long.

There are lots of easy ways for you to help spread the word, including:
And I 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:
"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 he has Lyme plus 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 16 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 after lunch, we almost always have symptoms, and we both 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 afterward. 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. 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)

2 comments:

  1. Very informative, thank you Sue. I didn't know about May 12th until this year and decided to do a blog post awareness on it too. Even though my blog has nothing to do with chronic illness and I don't usually post personal stuff, especially not personal health stuff! I'm sorry you've had to deal with this horrid illness and thanks for sharing all of your wisdom on it.

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    1. That's wonderful, Amanda! As I mentioned here, I also posted on Facebook to bring more awareness to my friends and family.

      Thanks for helping to spread the word!

      Sue

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