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.
We accomplished more than just 5 more voices in support: now every single CO Member of Congress is aware of our concerns!
Regardless of what happens with HHS and the CFSAC, when there is legislation introduced before Congress, we can count on strong support from most of our delegation, and awareness from them all.
We are deeply grateful to the four representatives who signed and especially to Sen. Bennet and his health staff for their extreme dedication and for going the extra mile for us.
Please thank our congressional supporters on Social Media. Personalize or use a minimal text for the Reps: “Thank you for supporting people with ME/CFS by signing the letter to HHS regarding the CFSAC.” And for Sen. Bennet: “Thank you for supporting people with ME/CFS by writing a cover letter to the HHS regarding the CFSAC and by contacting the rest of Colorado’s Members of Congress. I deeply appreciate your support.”
Here are their contacts on Facebook and Twitter:
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.
Some of our members who are too ill with ME to march – photo courtesy Sue Cunningham
We marched to draw attention to the fact that 75 to 80 percent of the people that are affected by ME are women and historically diseases that predominately affect women don’t get enough attention and research funding.
The Women’s March is a very public inclusive venue and we hoped that we could achieve a lot of awareness by being there.
Several marchers told us they had seen us on TV the night before. And we were able to share information with other people on the route. Altogether a successful event.
“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.
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!
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.