Monday, May 13, 2013

International ME/CFS Awareness Day 2013

I realize I am a day late, but I was away all weekend visiting my mom for Mother's Day and her birthday (I hate how Awareness Day always falls near Mother's Day weekend!). I figure we can use all the awareness we can get 365 days a year, so better late than never...

For starters, here is what I am posting on my Facebook wall for my friends and family (to keep it manageable, I only friend my family and in-person friends on Facebook), along with a link to this post:

"Yesterday, May 12, was International ME/CFS Awareness Day. ME stands for Myalgic Encephalomyelitis, the name by which this devastating illness has been historically known throughout the world, and CFS stands for Chronic Fatigue Syndrome, the silly-sounding misnomer the CDC saddled us with in the 1980's. I have had ME/CFS since March 2, 2002, and both of my sons have had it since 2004. Scientists have confirmed that this disabling illness has both genetic and infectious components, though they have not yet pinpointed the cause(s) or cure. At its heart, ME/CFS is an immune system disorder, causing parts of the immune system to over-react and parts of it to under-react. In a devastating cascade of effects, it causes problems with the immune, endocrine, and nervous systems. The mitochondria (i.e. energy producers) in our cells don't work properly and don't process oxygen normally so that even mild exertion - like a short walk or going up the stairs - can result in suddenly feeling as if we have the flu, and those effects can last days or even weeks. Jamie, Craig, and I have all improved somewhat with various treatments (mostly lots of medications), but not everyone is so lucky. Many people with ME/CFS are housebound or even bedridden. For more information and to learn how to help, check out this blog post." (with a link to here)

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:
  1. About CFIDS by the CFIDS Association
  2. An Overview of Chronic Fatigue Syndrome by Phoenix Rising
  3. The CDC's information on CFS
  4. My own article, CFS: An Invisible Illness, published last fall on Lively Woman
  5. Our public testimony on pediatric CFS at last year's CFSAC meeting.
Happy (belated) Awareness Day!  Help to spread the word!

(feel free to link to this page or share its information)


  1. Very informative and easily understood! Will be sharing.

  2. Anonymous8:50 PM

    I am putting an email out to my family and friends for May 12th (yes I know a little late) I was wondering if you would be okay with me putting the link to your post in my email? It is very informative especially with the resources and research groups. Please let me know if you are okay with that. Thank you!!

  3. Anonymous8:51 PM

    and never mind i see the note on the bottom of this post. oops! Thank you!