Biking across USA for ME/cfs

Bertus 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.”

Your Doctors as ME Allies

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

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.

#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.

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.

We 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.

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 pm

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.

#MillionsMissing 2019 PARKING

Again 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.

#MillionsMissing Denver 2019

#MillionsMissing is a global day of action for health equality for people with Myalgic Encephalomyelitis (sometimes called chronic fatigue syndrome, ME or ME/cfs).

We bring attention to the Millions across the globe who are Missing from their careers, their hobbies, their social networks and their former lives due to this extremely debilitating disease.

Last year was MEAction’s largest global protest ever with 100 cities around the world demonstrating, and even more participating virtually. This year will be even larger as  #MillionsMissing events will take place around the world over the course of an entire week from Sunday, May 5 to Sunday, May 12.

In Denver our event is on Saturday May 11th.

We’ll have:

• Guest Speakers
• Live Music
• Personal Stories from our Members
• A Call to Action 

You can:

• Meet others in the ME community
• Share stories and advice with other Caregivers and Allies
• Let Colorado know that ME exists in all our neighborhoods
• Learn to make your voice heard in Congress to  support #pwME
  

RSVP on Facebook  or at MEAction.

Please consider making a donation to support us in our advocacy work for Colorado’s thousands of people with ME.

We hope to see you there!

 

Do You have a #MillionsMissing Shirt?

#MillionsMissing Red looks great on everyone!

If you come to the Visibility Action on Saturday May 11th at the State Capitol, you will want to wear one of these.

If you are doing your own Action at home, then you will definitely want one.

Click HERE to order.

INCREASED FUNDING FOR ME RESEARCH AND EDUCATION

This article was first published on the MEAction Global Network website.

Congressmembers Zoe Lofgren and Anna Eshoo, are currently asking for support from their fellow House Members for TWO requests that can increase funding for ME!

These requests would include:

1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee)

2) Add ME to the Peer-Reviewed Medical Research Program (Defense committee)

What our Hill champions are fighting for will take efforts for ME to the next level and in a direction that can be built and expanded upon – something we desperately need. The potential of increasing funding for ME programs by millions of dollars is a huge step. We ask you to urge your elected officials to sign on to the letters that our champions are fighting for!

Pueblo Woman’s 3 year Road to Diagnosis

Jillian McQuitty Webb – Facebook photo

Unfortunately it’s not uncommon for someone to struggle for years before finally getting diagnosed with ME. Jillian from Pueblo went to more than 30 doctors and medical specialists and underwent more than 60 medical tests in 3 years before getting diagnosed at the Mayo clinic in Scottsdale.

Jillian suffers from severe fatigue, dizziness, cognitive issues and other debilitating symptoms. But the former cosmetologist looks well so people often don’t take her illness seriously.

Reluctantly, she went public with her diagnosis and turned to crowd funding to help pay for a trip to Salt Lake City. Jillian will be treated at the Bateman Horne Clinic, one of the ME specialist clinics in the country and the closest to Colorado. In addition to education and treatment and, more importantly to her, engage in research that could help lead to a cure for ME/CFS.

MEAction Colorado welcomes Jillian to our community and wishes her well on her journey.

Here’s the link  to the full story in the Pueblo Chieftain by Zach Hillstrom.

Look Back at #MillionsMissing 2018

Julie and son Xander

Mark your calendars for Saturday, May 11th! As we start planning for the 2019 #Millions Missing rally, here’s a recap of last year’s event.

May 12th 2018 saw our first #MillionsMissing event. We held the rally at the state Capitol in Denver late morning to avoid a hot afternoon. So, of course, the morning started gray and drizzly. We had plastic sheets to cover our display boards and flyers on the tables.

The weather improved by the time our scheduled activities started. Several members told their stories about living with ME. Two people who were unable to attend sent their stories to be read by volunteers.