#MillionsMissing Denver Draws a Crowd

It was a very Colorado day with warm sunshine, then dark clouds threatening rain and then changing their minds, followed by sudden gusts of wind blowing our handout brochures around and knocking over the display boards. But it all worked out fine.

The shoes on the stairs, the ‘Ally Team Photos’ and MillionsMissing shoe story signs drew a lot of attention from passersby on Lincoln Ave. We had interesting conversations and shared some ME flyers with Capitol visitors.

Eric Moon and the Prairie Band from Parker started off the event with a musical set including Rob Thomas’ emotional ballad, ‘Her Diamonds’ bringing tears to some.

John debuted Facebook live for the first portion of the event. We were excited to have an international following.

We heard moving stories from several members about the challenges of living with ME. Jillene Moore told her own story. Alida Gowan read stories for Kris Paige of Livermore, CO and Wilhelmina Jenkins story about being a black woman seeking care for ME.

Our guest speakers included: Dr. Lila Rosenthal, Dr. Theodore Henderson, Wayne Connell and Jordana Griff Gingrass.

Dr. Lila Rosenthal spoke meaningfully  about learning about the disease from her patients. She provided advice about how to work effectively with your doctor for mutual benefit.

Dr. Theodore Henderson is a psychiatrist who also treats Biological illnesses that present with psychiatric symptoms, including ME/cfs.  He is also founder of the Neuro-Laser Foundation. He spoke about the effects of viruses on the brain and about treating infection triggered ME.

Wayne Connell, the Founder and President of the Invisible Disabilities Association (IDA), updated us on progress with the National Disability ID Initiative. The primary purpose of this designator is to alert law enforcement to a person’s non-apparent disability during a traffic stop, or other routine contact.

Xander Kelty on viola

Jordana Griff Gingrass is an attorney in Denver. After her long-time best friend became ill with ME, Jordana organized successful fundraisers to benefit Open Medicine Foundation, an organization which funds ME research.

Xander Kelty performed two lovely pieces on the viola.

Several posters displayed information about ME, stories from more of our members, and showed the MEAction Colorado activities of the past year .

Thank you to all who participated. And our thoughts went out to all our members who were unable to come. You were represented on shoe tags and stories on the story boards, and in our hearts.

More photos at this link.

What To Expect At #MILLIONSMISSING DENVER 2019 ?

WHEN – Saturday May 11, 1:00 to 4:00 pm

WHERE – Colorado State Capitol, 200 E. Colfax Ave, Denver

WHY – We are part of a global campaign (At least 93 events will be held during this week in USA, Canada, Mexico, Europe, UK, Australia, Japan and South Africa) for health equality for Myalgic Encephalomyelitis. These events  bring attention to the need for huge increases in investment in medical research and medical training to treat ME.

#MillionsMissing Denver 2019

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

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.

In 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!

 

Do You have a #MillionsMissing Shirt?

#MillionsMissing Red looks great on everyone!

If you come to the Visibility Action on Saturday May 11th at the State Capitol, you will want to wear one of these.

If you are doing your own Action at home, then you will definitely want one.

Click HERE to order.

Pueblo Woman’s 3 year Road to Diagnosis

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.

Colorado Members of Congress send letter to HHS

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.

UNREST in Denver March 2nd

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!