Hello everyone, I hope you are all staying safe!  Here’s our April newsletter with some thoughts on living through the COVID-19 pandemic.

https://conta.cc/2WUalCR

(Here are Newsletter Editor Lara Heisler’s daughters Olivia and Emma as featured in the April story).

And I see that the March newsletter didn’t get posted here yet, so although some of it refers to events that were cancelled, it is at https://conta.cc/2wsFcuX.

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.