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 12th is the exception each year. Here is what I am posting on my Facebook wall today for my friends and family:
"Today is International ME/CFS Awareness Day. Most of you know that Jamie and I both have ME/CFS, but you may not know what that means, especially since the U.S. name, Chronic Fatigue Syndrome, is very misleading. ME/CFS is actually a serious & debilitating immune disorder that has dramatically changed our lives the past 14 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 to get a LOT of extra sleep, I can't get through the day without a nap after lunch, 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. We have found some treatments that each help a little, but nothing helps a lot. We each take 60-70 pills a day, at 6 different times of day. And even with all that care and caution, we still sometimes overdo and "crash" and feel like we have the flu for days or weeks at a time. A simple infection like bronchitis can knock us out for months. But, we are the lucky ones. Many people with ME/CFS are housebound or even bedridden. Worst of all, few people - and very few doctors - even understand what ME/CFS is, so this Awareness Day 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 Lyme which Jamie also has & has 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!"
Feel free to copy that, edit it to fit your own situation, and share it with your own friends and family.
Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask you), here are some other ways to help further ME/CFS education and research:
- 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
- An Overview of ME/CFS by Phoenix Rising
- The CDC's information on CFS
- Our public testimony on pediatric 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:
- Solve ME/CFS Initiative
- Open Medicine Institute (click in the upper right corner to donate)
- Simmaron Research
- ME Research UK
- 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:
(feel free to link to this page or share its information)