This article was first published on the MEAction Global Network website.
Congressmembers Zoe Lofgren and Anna Eshoo, are currently asking for support from their fellow House Members for TWO requests that can increase funding for ME!
These requests would include:
1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee)
2) Add ME to the Peer-Reviewed Medical Research Program (Defense committee)
What our Hill champions are fighting for will take efforts for ME to the next level and in a direction that can be built and expanded upon – something we desperately need. The potential of increasing funding for ME programs by millions of dollars is a huge step. We ask you to urge your elected officials to sign on to the letters that our champions are fighting for! Continue reading
Jillian McQuitty Webb – Facebook photo
Unfortunately it’s not uncommon for someone to struggle for years before finally getting diagnosed with ME. Jillian from Pueblo went to more than 30 doctors and medical specialists and underwent more than 60 medical tests in 3 years before getting diagnosed at the Mayo clinic in Scottsdale.
Jillian suffers from severe fatigue, dizziness, cognitive issues and other debilitating symptoms. But the former cosmetologist looks well so people often don’t take her illness seriously.
Reluctantly, she went public with her diagnosis and turned to crowd funding to help pay for a trip to Salt Lake City. Jillian will be treated at the Bateman Horne Clinic, one of the ME specialist clinics in the country and the closest to Colorado. In addition to education and treatment and, more importantly to her, engage in research that could help lead to a cure for ME/CFS.
MEAction Colorado welcomes Jillian to our community and wishes her well on her journey.
Here’s the link to the full story in the Pueblo Chieftain by Zach Hillstrom.
Julie and son Xander
Mark your calendars for Saturday, May 11th! As we start planning for the 2019 #Millions Missing rally, here’s a recap of last year’s event.
May 12th 2018 saw our first #MillionsMissing event. We held the rally at the state Capitol in Denver late morning to avoid a hot afternoon. So, of course, the morning started gray and drizzly. We had plastic sheets to cover our display boards and flyers on the tables.
The weather improved by the time our scheduled activities started. Several members told their stories about living with ME. Two people who were unable to attend sent their stories to be read by volunteers. Continue reading
We are thrilled to share this Letter to the HHS that Sen. Bennet, and Reps. DeGette, Perlmutter, Neguse and Crow sent to the HHS regarding the CFSAC (CFS Advisory Committee). The letter demands answers after the committee was disbanded. Please see below for how to thank them on social media.
Last year, over 40 members of Congress including 2 from Colorado, signed a letter to the HHS. Not content to just do that, the staff of Sen. Bennet worked with us to craft a Colorado-specific letter which was signed by 11 of us from MEAction CO plus Diane Bean from the Solve ME/CFS Initiative Board of Directors. Sen. Bennet’s office added a cover letter and contacted all Colorado Members of Congress to come up with support from 5 of them.
This comes as a direct result of your support for our advocacy. All your emails and calls truly made a difference in catching Congressional attention in a big way. Continue reading
Update as/of 1:25 pm Thursday March 1:
Unrest is still on for tomorrow but stay tuned for any last minute weather updates.
MEAction of Colorado is proud to present a screening of Unrest, a Sundance award-winning film by Jennifer Brea, with a panel discussion. Invite your friends, family, and doctors to join us!
The event will be held at 1:30 pm on March 2,2019 at the Co-Op at 1st at 5045 W 1st Ave, Denver, CO 80219-1005. Doors open at 1:00. Refreshments will be served after. Come early to check out the indoor farmer’s market! Continue reading
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’.
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. Continue reading
Got some visibility for MEAction Colorado ahead of the March.
Pictures and story to follow.
UPDATE: Jan 15,2019 – Here is the updated map for the Womxn’s March showing our meeting place and the shorter, alternate ADA route that we will be following.
Raise ME awareness in a big way at the 3rd annual Women’s (Womxn’s) March!
We invite anyone with ME who is willing and able, to meet and walk the shorter ADA route, along with our healthy allies, friends and families who can push wheelchairs to represent the #pwME that we love who are too ill to participate.
In February 2018, MEActionCO started as a FaceBook group with a handful of members. With guidance from MEAction’s national team, we managed to organize and plan for the first Millions Missing event in Denver. As the group grew slowly to about 35 members we pulled together to organize the event.
May 12th – We pulled it off. It was a drizzly cool day at the state Capitol when we got together for the first time for a morning of speakers and live music and mutual support. We scored a little media coverage with stories about Pam and Nora. Continue reading
Biff Gore sings at IDA Gala
We would like to thank Lee-Anne Du Plooy of Highlands Ranch, CO for attending the 2018 Invisible Disabilities Association’s Award Gala. IDA was a proud supporter of us at the 2018 MillionsMissing. Their mission resonates with many PWME – not being believed about their disease simply because it’s not as visible as many other diseases. The organization promotes believing patients, disease awareness, education and connection for people with invisible disabilities. Two of their key missions are having invisible disabilities recognized by a new symbol that does not represent visible challenges only; as well as their “Cleaner Indoor Air Campaign” which strives to help so many of us with environmental sensitivities.
In addition to being a great fundraiser, the Gala featured live music, headlined by Biff Gore from Season 6 of The Voice, and many awards for activists of invisible diseases. The event was live streamed and I believe that videos of it will be made available at some point. Lee-Anne said she had a great seat up front and that the event was festive, uplifting and inspiring, with lots of good food, and that it was incredible to hear Biff up close like that. You can check out a recap of much of the night’s events at https://www.facebook.com/InvisibleDisabilities/videos/331493710731521/ .