Tuesday, May 12, 2015

Today is International ME/CFS Awareness Day

It's International ME/CFS Awareness Day!

Looking for ways to help spread the word? 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:

"I don't normally say much here about our illnesses, but today is International ME/CFS Awareness Day. ME is Myalgic Encephalomyelitis, the name by which this devastating illness has been historically known throughout the world, and CFS stands for Chronic Fatigue Syndrome, the cringe-worthy name the CDC saddled us with in the 1980's. I have had ME/CFS since March 2, 2002, and my sons have had it since 2004, though one is now recovered after 10 years of mild illness. 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. We have had some success with treatments, though we take piles of pills every day and our lives are still dramatically different than they were before ME/CFS. We are the lucky ones; 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)

I also plan to post other Awareness Day posts today - the Solve ME/CFS Initiative has lots of them to share, from the past week or so. Like my Facebook Page for this blog to see what I post today so you can share to your own wall.

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. What is ME/CFS? by Solve ME/CFS Initiative
  2. An Overview of ME/CFS by Phoenix Rising
  3. The CDC's information on CFS
  4. My own article, CFS: An Invisible Illness, published on Lively Woman (now BlissTree)
  5. Our public testimony on pediatric CFS at last year's 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:
  • 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!  Help to spread the word!

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


Tanya @ Moms Small Victories said...

Thanks for sharing this valuable information about ME/CFS. Sorry I didn't get to sharing it sooner. Thanks for sharing with Small Victories Sunday linkup and raising awareness to help others in the same boat.

Brandi Clevinger said...

Thank you for sharing information about ME/CFS and Fibromyalgia Awareness Day! I'm having giveaways for the entire month of May (all giveaway winners are drawn on June 1) to support awareness month. Here's the link to all of the giveaways (they are towards the bottom of the page) - http://www.beingfibromom.com/fibromyalgia-awareness-month/

I will be sharing your post on Twitter and Facebook. Thanks for sharing! I found your post at Small Victories Sunday Linkup!

Sue Jackson said...

Thanks, Tanya. And no worries....better late than never is pretty much my life motto :)

Sue Jackson said...

Hi, Brandi!

Thanks for sharing my post and for the Giveaways link! I will share that, too.