Join MEAction at the State Capitol

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.

denver_capital_0

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!

December Newsletter

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:

MyPatientRights

November Newsletter

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: 

Niki_fall

(Photo courtesy of Colin D. Young)

Biking across USA for ME/cfs

Colorado route 2Bertus Geertsema is riding the 4233 mile Transamerica Bicycle Trail from Astoria, OR to Yorktown,VA to raise awareness and research funding for ME/cfs (Myalgic Encephalomyelitis/chronic fatigue syndrome). He will be crossing into Colorado in a day or two. The route follows mostly rural two-lane highways. So far, he has ridden through Oregon, Idaho, Montana and Wyoming posting spectacular photos of his trip on his Instagram account @MultiVenturist.

“The TransAmerica Bicycle Trail was the first bicycle touring route to cross the U.S. It was developed and mapped by Adventure Cycling Association, and travels between Astoria, Oregon, and Yorktown, Virginia, along mostly rural, two-lane highways. The TransAmerica Bicycle Trail began as the route for Bikecentennial, a mass bicycle tour across the country to celebrate the U.S. Bicentennial in 1976. The route was developed and mapped in the years preceding the event by volunteers and staff members of the organization Bikecentennial, which changed its name to Adventure Cycling Association in 1993. Over 4,100 cyclists rode at least part of the route during Bikecentennial, with 2,000 riding the entirety of the TransAmerica Bicycle Trail.” Continue reading

Your Doctors as ME Allies

Remarks at the Denver Millions Missing Event for ME, May 11, 2019
By Lila Rosenthal, MD

Dr Lila with members 300x300

Dr. Rosenthal (center) at MM2019

Thank you for the warm welcome and kind introduction. It’s an honor to be here with you today to raise our voices to raise awareness about ME. It was difficult for me to figure out what I could say to you long-suffering patients and caregivers, who have been marginalized and at times dismissed by my colleagues. If I’m honest, if you would have seen me before I became “educated”, I might have treated you without the respect and validation you deserve. Today I want to tell you, from the bottom of my heart, that I am sorry on behalf of myself and my peers.

Most of what I know about ME I have learned from my patients. And so in light of today’s theme, Finding your Allies, I want to say some words about how you can best educate your practitioners to be able to get the best possible care while we wait for new data and new treatments to emerge.

Find your Allies: Try not to see busy, harried, uninformed doctors as the enemy.

Continue reading

CO Activist introduces resolution to Rotary International

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.

Rotary_MEAction.jpg

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.

#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.

MM2019 Group 1920x1080

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.

Signs and Shoes Millions Missing 300x300We 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.

ViolaMan sq

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.