Severe ME/CFS Awareness Day

August 8th is the awareness day for severe ME/CFS. At its worst, ME/CFS can mean being so sick and so sensitive to stimulation that you are in a dark room by yourself all day.

There is some good news, though. My sister Isabella sent me a link about progress that is being made on ME/CFS research at Stanford University. It may enable a diagnostic test, the lack of which has been a big obstacle to doctors in identifying patients with ME/CFS and giving them the care they need. It may even point the way toward new treatment! The basic gist of the news is that ME/CFS patients have a much greater amount of certain cytokines that are linked to causing inflammation than the healthy control subjects do.

As always, I am excited when ME/CFS is given publicity and researchers move forward. I’ll be keeping my eye Stanford’s ME/CFS site.

#MillionsMissing: ME/CFS Protest!

Today is the day: an international protest/awareness event for ME/CFS! Because I cannot attend in person, I am doing what I can with the platform available to me: the Internet.

The empty shoes symbolize the people missing from society because of ME/CFS. Many people in my family suffer from this disease, and I asked them to contribute their photos to help us raise awareness.

If you would like to help spread awareness, there are suggestions in that link. Also, feel free to like or reblog this post, or put it on facebook. You can sign this petition for increased funding for research. I think we need to reach some sort of critical mass in public consciousness before we will get the funding we so desperately need.

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My shoes
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My sister Isabella’s rainboots
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My sister Jane’s sandals
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My sister Lizzy’s shoes
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My mother’s photo and her message: “ME/CFS affects everybody in the family.”

ME/CFS Awareness Day

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Today is, as you may have guessed, ME/CFS Awareness day. This disease has been known by many names over the years, but is currently known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS for short).

This is a devastating disease that affects many millions of people throughout the world, many of whom live alone and in poverty, because they are often too sick to support themselves and are not infrequently abandoned by friends and family.

Yet recognition has been slow and funding scarce, in defiance of good sense and of compassion (billions of dollars are lost to the US economy each year because of ME/CFS; researching a cure would be a sound investment!).

*I will update this post with more information on ME/CFS and what you can do to raise awareness when I can get to a computer. My phone is difficult to write on.