Representing ME at the Womxn’s March

Kristen Aguirre from 9News Denver did a very nice segment on MEAction Colorado’s planned participation in the Womxn’s March providing some visibility that is greatly appreciated by those whose lives are so badly impacted by this ‘invisible disability’.

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Group photo courtesy Tom Strobel

Our small but mighty team grew a little bigger with the addition of some last minute volunteers who braved the below freezing weather and helped represent those fighting ME who can’t physically make it through the march.

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Some of our members who are too ill with ME to march – photo courtesy Sue Cunningham

We marched to draw attention to the fact that 75 to 80 percent of the people that are affected by ME are women and historically diseases that predominately affect women don’t get enough attention and research funding.

The Women’s March is a very public inclusive venue and we hoped that we could achieve a lot of awareness by being there.

Several marchers told us they had seen us on TV the night before. And we were able to share information with other people on the route. Altogether a successful event.

Photos of our May 12th #MillionsMissing Visibility Action

There will be more and possibly better photos to come, but I couldn’t wait to share this photo link with you. It was a drizzly, windy, and then brilliantly sunny Saturday morning, typical of springtime in the Rockies.  A warm and supportive crowd of over 60 Chronic Illness Warriors, friends, families and allies graced the steps of the Colorado State Capitol in Denver.

Were you there? What were your impressions?

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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!

GOOD NEWS – PARKING at the Capitol

Capitol circle parkingIf you have ME (or are otherwise disabled) and are planning to attend the May 12th event in Denver we have arranged for handicapped parking in the circle in front of the Capitol building. So you don’t have to walk or have your wheelchair pushed from a parking lot.

I need to give them a count of how many vehicles will be needing handicapped spaces. So please let us know if you are planning to come (if you are feeling up to it that day of course). You can leave a comment here or on the Facebook event or just Email us.

Our able bodied allies will have to park in one of the nearby lots.

We will post more details next week about both Capitol circle parking and lot parking.

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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