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International ME/CFS Awareness Day 2014

Posted May 12 2014 4:35pm
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
"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 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. Thankfully, Craig's ME/CFS is mild and easily controlled with medication. Jamie and I have both had some mild success at reducing symptoms though we take piles of pills every day and our lives are still dramatically different than they were before ME/CFS (Jamie also has Lyme and 2 other tick infections, too). 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)

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 the CFIDS Association at Solve CFS
  • An Overview of Chronic Fatigue Syndrome by Phoenix Rising
  • The CDC's information on CFS
  • My own article, CFS: An Invisible Illness , published on Lively Woman (now BlissTree)
  • 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)
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