Check out our February 2020 newsletter at this link! If you prefer audio versions of the recordings are here:
Congressional Update:
How to Help and Get Help:
Book Review: The Return of Polio
ME-International Update
This year our biggest event will be Chronic Care Collaborative (CCC)’s Day of Advocacy at the State Capitol on Thursday March 19th.
For those who cannot make March 19th or for those who can attend two events, we’ll also be going to a Day at the Capitol with Colorado Consumer Health Initiative (CCHI) on Thursday, Feb. 20. Information on that event is at the bottom of this post.
These events are instead of a Denver #MillionsMissing rally.
We need to start making ourselves known in a big way to the Colorado state legislature and CCC provides us the perfect opportunity. I encourage everyone–PWME who are healthy enough, friends, family, caregivers, and healthy allies–to attend. For those PWME who are too sick, we’ll provide some way of being there in spirit. We’ve had some good turn outs for our MillionsMissing, and I’d like this to be even bigger so we can talk to as many state lawmakers as possible. This is the best kind of advocacy–face to face interaction with decision makers!
We will be asking our state Senators and Representatives to support a resolution of awareness in honor of ME. That’s the short term goal but the real goal is longer term–a working relationship with elected officials that will lead to more substantial ME legislation, and to develop allies who may get elected to higher offices.
No experience or special skills are needed. Before the event, we will have an online training to walk people through the process and get everyone ME materials. CCC will provide further training and materials on the 19th before we head over to the capitol. Additional information including registration will be provided soon. It will be from about 8:00 to about 1 including meals. After learning all we need to know from CCC in the morning, we’ll be grouped by district and head over to the capitol.
If it sounds scary, it isn’t–it is leading up to a short and friendly conversation with someone who was elected to serve you, and is incredibly rewarding. As a disclaimer, our elected officials are very busy so sometimes it is not possible to arrange a meeting with them.
The Feb. 20 CCHI Day at the Capitol will be very similar. Find out more about it and register at cohealth.co/HCDA2020 . If you sign up email me at john.kelty@meaction.net so we can coordinate and make sure you have training and material.
MEAction of CO has been a member of CCC since 2018. Neither MEAction nor MEAction of CO has officially endorsed CCHI or any of its policies.
Be on the look out for more info and plan now to take Feb 20 and/or March 19th off if you need to, and we’ll look forward to seeing you there!
Check out our December newsletter! If you prefer an audio version, you can listen at the following links. Our Newsletter volunteers are taking the month off and our next edition will be in early February. Happy Holidays!
My Patient Rights.org:
Colorado Consumer Health Initiative:
MEAction of CO Meets with Colorado Department of Health:
ME-International New Website:
Please check out our November newsletter! If you prefer an audio version, the stories have been recorded:
#NotEnoughForME:
A Member’s Life with Ehlers-Danlos Syndrome and ME:
Invisible Disabilities Gala: [/audio]
ME International:
(Photo courtesy of Colin D. Young)
Check out our October newsletter for the latest news on the Rotary Resolution, and state and US advocacy and to learn about our partnership with Colorado’s Center for Health Progress.
Check out our second edition at https://conta.cc/2UAXXo2 
Thanks to long-time activist Jim Lutey and new volunteer Lara Heisler (a healthy ally, yay!!) for making the #MEAction CO e-newsletter happen. Check out our first issue: https://conta.cc/2SZqK51
We’ve already got some great ideas for stories for upcoming issues, so be sure to stay tuned and send an email to john.kelty@meaction.net if you want to subscribe to it.
Colorado activist Jim Lutey has introduced a Rotary Club resolution to encourage research, education and funding for ME! ME-CFS RESOLUTION Proposed by Dist. 5440 3-13-2019-4
The resolution’s purpose is to “leverage Rotary’s worldwide reputation and expertise on polio eradication to raise awareness on the need to educate the public and medical practitioners on the importance of treating and ultimately finding a cure for those suffering from ME/CFS.”
Jim (in the MillionsMissing shirt) proposed it at his and Pam Lutey’s local chapter and then took it to District 5440 which includes all of Wyoming, north central Colorado, and a bit of Nebraska and Idaho. The resolution passed within District 5440 unanimously with the 55 member chapters.
Now, the District will submit the Resolution to the Rotary International Council on Resolutions and there should be a final outcome in November.
This has already been a long process and we give our heart-felt thanks to Jim and Pam Lutey for their long hours and leadership on this.
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
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/ .
