Again this year, the Governor’s office has graciously agreed to allow us to use their parking spaces in the circle around the Capitol building.
If you have ME (or are otherwise disabled) and are planning to attend #MillionsMissing on May 11th in Denver, we have arranged for handicapped parking in the circle in front of the Capitol building. You won’t have to walk far or have your wheelchair pushed from a parking lot. Continue reading
Soon after my wife Julie was diagnosed with ME, I got involved organizing our Facebook group and working on MillionsMissing and then with helping MEAction’s Colorado group ever since. Julie has a “mild” case of ME, for what that’s worth. Mild in that she isn’t housebound and has periods of activity almost every day. But ME being ME, our lives were still turned upside down and she cannot work even part time or be in large groups for long.
John at #MissingMillions in Denver 2018
Julie and son Xander
I didn’t do all this work for Julie though. We thought for years she had MS and, other than small donations for MS fund raisers as thanks for the help their support groups gave her, I didn’t do any grand support or organizing. My immediate family has a lot of conditions: we have people with autism, depression, OCD, degenerative disk disorder and Tourette’s Syndrome. But I do not organize or advocate on behalf of any of those conditions.
When I watched Unrest and learned the severity of ME and the incomprehensible neglect by the CDC and NIH, I decided I needed to organize and help the #MillionsMissing as this is truly a fight for social justice. Continue reading
“It just changed her life” Jim said. “She couldn’t do much more than get dressed and we’d go out and get a bite to eat and that would be about it.”
Pam Lutey, and her husband Jim who are members of MEAction Colorado, tell the story of how ME/CFS has severely limited the life of an active northern Colorado woman.
Their story is featured in the May 27 2018 edition of the Sunday Tribune.
Although their health concerns kept them form attending the May 12th #MillionsMissing rally in Denver, Pam and Jim joined the planning team and offered advice and assistance.
Read the entire story of their experience with ME/CFS at this link.
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?
Nora 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!
If 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.
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.
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.
Let’s get the word out!
Saturday May 12th is the date when #pwme (People with ME) and their caregivers and allies will be in Action all over the world to bring attention to this debilitating illness.
Colorado folks and neighbors, please join us at the Colorado state Capitol in Denver 10am-11:30.
Here’s the link to RSVP on Facebook.
Please join us – The #MEAction network day of Action is May 12, 2018 at locations all over the world and for the first time here in Colorado. Please join us at 10am at the State Capitol in Denver for a rally to raise awareness and support for those who suffer from ME/CFS Myalgic encephalomyelitis/chronic fatigue syndrome).
Good company in a journey makes the way seem shorter. — Izaak Walton