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.

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’.

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.

More to ME/CFS than Fatigue

“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.

Understanding Chronic Fatigue Syndrome/ME

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!

Grand Junction Fundraiser

ME/CFS sometimes strikes multiple members of a family suggesting that there may be a genetic component to the disease.

Such is the case with Candi Pastorek, and her daughters, Amelie Hicks and Mary Gelpi.

On April 22, the documentary “Unrest” was shown as a fundraiser for the Open Medicine Foundation that is dedicated to research for into ME/CFS.

The family, formerly from Grand Junction, returned to their hometown for the fundraiser featuring a showing of the Sundance prize winning documentary “Unrest.” Their story, titled “Tortured Pathway” is featured in the April 8, 2018 Sunday edition of the Grand Junction Sentinel.