#MillionsMissing Denver 2019

#MillionsMissing is a global day of action for health equality for people with Myalgic Encephalomyelitis (sometimes called chronic fatigue syndromeME or ME/cfs).

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We bring attention to the Millions across the globe who are Missing from their careers, their hobbies, their social networks and their former lives due to this extremely debilitating disease.

Last year was MEAction’s largest global protest ever with 100 cities around the world demonstrating, and even more participating virtually. This year will be even larger as  #MillionsMissing events will take place around the world over the course of an entire week from Sunday, May 5 to Sunday, May 12.

MM Denver 2019 collage crop v2In Denver our event is on Saturday May 11th.

We’ll have:

  • Guest Speakers
  • Live Music
  • Personal Stories from our Members
  • A Call to Action 

You can:

  • Meet others in the ME community
  • Share stories and advice with other Caregivers and Allies
  • Let Colorado know that ME exists in all our neighborhoods
  • Learn to make your voice heard in Congress to  support #pwME

RSVP on Facebook  or at MEAction.

Please consider making a donation to support us in our advocacy work for Colorado’s thousands of people with ME.

We hope to see you there!

 

INCREASED FUNDING FOR ME RESEARCH AND EDUCATION

This article was first published on the MEAction Global Network website.

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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

Pueblo Woman’s 3 year Road to Diagnosis

Jillian WEBB

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.

Look Back at #MillionsMissing 2018

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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

Colorado Members of Congress send letter to HHS

Colo letter 2019 on 1 page 300pxWe 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

UNREST in Denver March 2nd

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Update  as/of 1:25 pm Thursday March 1:

Unrest is still on for tomorrow but stay tuned for any last minute weather updates.

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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

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. Continue reading

MEAction at Denver’s Womxn’s March

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.

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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.

Continue reading