Wednesday, May 12, 2010

International ME/CFS Awareness Day

Today is International CFS/ME Awareness Day. Whether you have CFS or have a friend or family member with CFS, here are some simple things you can do to help educate the world and help promote research for CFS, even if you can't leave your house:
  • Participate in the CFIDS Association's Virtual Lobby Day. This helps to spread the word about CFS to your local media and your elected officials. There are 4 actions listed right now, and it only takes about 10 minutes to do them all (you can also choose to just do 1 or 2 of the actions). I do this every year, and it really works! Two years ago, both our local town newspaper and our city newspaper published the letters I sent through the CAA's Action center. I also received responses from my Senators and Representative, as well as a thank you note from a local representative who has a family member with CFS. It works and it's easy - try it!  I'm headed there next.
  • Tell your friends and family about CFS. I plan to post a link to this blog post on Facebook today. During the first few years after I was diagnosed, I e-mailed my family and friends to tell them more about CFS and how they could help. Several of my friends thanked me and said they wanted to know more. Here are some sources of information you can provide to others:
  1. About CFIDS by the CFIDS Association
  2. ME/CFS Facts by Phoenix Rising
  3. The CDC's information on CFS
  4. My own article, CFS: An Invisible Illness, published last fall on Lively Woman
You and your friends and family can also donate money to help fund badly-needed 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 the CFIDS Association or the Whittemore-Peterson Institute.

You can also donate to 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:
I've made iSearchiGive my homepage so that all of my searches earn money for the CFIDS Association.

If you have CFS, take a few minutes to fill out the research questionnaire at the Whittemore-Peterson Institute - your answers can help them create a comprehensive database that will help future CFS research and will also allow you to be considered for their studies, if you want.

Do what you can to help and spread the word!


deserella said...

Thanks for the post and the ideas on how to get involved. I think I am going to send a message about CFS to all my facebook friends too. Good luck.

Sue Jackson said...

I did my Virtual Lobby Day and made small donations to both WPI and CFIDS Association - all from the couch!

It's never too late!


Dominique said...

Great suggestion, Sue. I especially like the iGive search site. Awesome idea.

Happy CFS/ME Awareness Day!