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). Read about the
history of Awareness Day here. You can do a number of easy things from home to help raise
awareness all month long, including:
Check out the #MEAction website:
There's more information on this ME Awareness Day Facebook page.
Join in Blue Sunday Tea Party for ME on May 18, 2025, by wearing blue, donating to ME/CFS causes, having tea and cake, and sharing on social media. Details here.
As mentioned, I also use this day/month to tell my friends and family about ME/CFS. 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 23 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 need piles of pills to be able to function, 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. COVID or even a simple cold can knock me out for months. 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/ "
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:
- What is ME/CFS? by Solve ME/CFS Initiative
- What Is 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)
