Understanding Chronic Fatigue Syndrome/ME

Nora and gang 300x300Nora Gayer, a member of the MEActionCO team, was interviewed on air with KGNU radio (88.5 FM and 1390 AM) in a segment broadcast on May 10, 2018, just 2 days before our #MillionsMissing rally. Nora is a smart, articulate, and knowledgeable patient who represented us well. The recorded version can be heard at this link.

An important point that she addressed is one concern that isn’t mentioned often; the early characterization of ME/CFS as Yuppie Flu, an ailment of only well off white women. This characterization did so much damage. While it is true that women are more likely to get ME, the Yuppie Flu narrative  continues to do a lot of damage to people who aren’t well off and/or aren’t white, especially when combined with how ridiculously difficult it is to be diagnosed, so such people are left underrepresented and less likely to be believed.

Thanks a million to Nora for a spot-on interview!

May 12th Backup Plan – Go Virtual

We would love as many as possible to attend our #MillionsMissing Visibility Action on May 12th. But your health comes first. If you don’t know if you will be well enough to attend the public event, a few days ahead of time prepare an individual event in your home. Put on your MEAction shirt and make up a sign and have a picture or short video taken of yourself.

Then on May 12th if you’re not feeling well enough to go to the public event you can post your picture/video to Facebook and/or Twitter or Instagram. Use the hashtag #MillionsMissing so the MEAction Network folks can find and count it. Every event big or small helps build our community.  Click here for more on Individual/Virtual events.

 

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Let’s Get the Word Out !

There are AT LEAST 14 THOUSAND people in Colorado affected by Myalgic Encephalomyelitis, by some calculations AS MANY AS 60 THOUSAND!
 
We want to reach as many as possible. We want them to know that even if they are alone in their homes, we are here advocating for VISIBILITY for them and ACTION to demand funding for research and treatment.
 
Won’t you help! Look for MEActionCO on Facebook, Twitter, Instagram and at MEActionCO.net. Please share, repost,  retweet and email our posts about the May 12th event.
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Let’s get the word out!

Grand Junction Fundraiser

unrest450x300ME/CFS sometimes strikes multiple members of a family suggesting that there may be a genetic component to the disease.

Such is the case with Candi Pastorek, and her daughters, Amelie Hicks and Mary Gelpi.

On April 22, the documentary “Unrest” was shown as a fundraiser for the Open Medicine Foundation that is dedicated to research for into ME/CFS.

The family, formerly from Grand Junction, returned to their hometown for the fundraiser featuring a showing of the Sundance prize winning documentary “Unrest.” Their story, titled “Tortured Pathway” is featured in the April 8, 2018 Sunday edition of the Grand Junction Sentinel.