Tuesday, May 12, 2009

International CFS/ME Awareness Day

Today is International CFS/ME Awareness Day. Here are some simple things you can do to help educate the world about 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. I just finished all 3 of the actions listed, and it only took about 10 minutes (you can also choose to just do 1 or 2 of the actions). This really works! Last year, 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!
  • Tell your friends and family about CFS. I plan to post a small note about Awareness Day 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:
  • About CFIDS by the CFIDS Association
  • ME/CFS Facts by Phoenix Rising
  • The CDC's information on CFS
  • 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 people worried right now, 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 another organization that supports CFS research (like the IACFS/ME, though their research fund link doesn't seem to be working at the moment).

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.

Spread the word!


  1. Sue, What comprehensive info. Great post. I'm off to the CFIDS action page to email.

  2. Fabulous information!!! Thank you for sharing. I especially like the idea of iSearchiGive.

  3. Good for you, Kerry!

    Thanks, Shelli! iSearch only earns a cent or two per search but if everyone with CFS (plus our friends and family) do it, just think of all that extra money for research!

  4. So much information here Sue! Thanks for this...I am going to add it to my little blurb on it.

  5. You might also spread the word that maca root powder is excellent for treating CFS - my sister; 3 close friends, a cousin and I have all used this successfully.

    You can buy it at:


  6. Sue, I would like to include this information, including the links, on my website. Only, instead of having it specifically for International Awareness Day, I'd like to adapt it for being an activist any day! I would like your permission to reproduce it (I can submit changes before I publish it), and I'd love to credit you with the article, complete with a link to your website. Let me know if this would be OK! Thanks, Shelli

  7. Yes, that would be great to reprint this info on your website, Shelli. Thanks!


  8. One more thing (sorry!) -- what web address would you like me to use? Your writing website or your blog?

  9. Anonymous4:32 AM

    Hi Sue

    It would be great to see you blogging for ME/CFS Awareness again in May 2010.

    Remember to sign up to the list at http://meaware.wordpress.com so we can collate a list of those who are blogging for ME/CFS Awareness this year.