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: 

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(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

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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.

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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.

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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.

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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.

What To Expect At #MILLIONSMISSING DENVER 2019 ?

WHEN – Saturday May 11, 1:00 to 4:00 pmcapitol decor

WHERE – Colorado State Capitol, 200 E. Colfax Ave, Denver

WHY – We are part of a global campaign (At least 93 events will be held during this week in USA, Canada, Mexico, Europe, UK, Australia, Japan and South Africa) for health equality for Myalgic Encephalomyelitis. These events  bring attention to the need for huge increases in investment in medical research and medical training to treat ME. Continue reading

#MillionsMissing 2019 PARKING

Capitol circle parkingAgain this year, the Governor’s office has graciously agreed to allow us to use their parking spaces in the circle around the Capitol building.

If you have ME (or are otherwise disabled) and are planning to attend #MillionsMissing on May 11th in Denver, we have arranged for handicapped parking in the circle in front of the Capitol building. You won’t have to walk far or have your wheelchair pushed from a parking lot. Continue reading