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.”

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 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!

 

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.

UNREST in Denver March 2nd

Update  as/of 1:25 pm Thursday March 1:

Unrest is still on for tomorrow but stay tuned for any last minute weather updates.

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MEAction of Colorado is proud to present a screening of Unrest, a Sundance award-winning film by Jennifer Brea, with a panel discussion. Invite your friends, family, and doctors to join us!

The event will be held at 1:30 pm on March 2,2019 at the Co-Op at 1st at 5045 W 1st Ave, Denver, CO 80219-1005. Doors open at 1:00. Refreshments will be served after. Come early to check out the indoor farmer’s market!

Representing ME at the Womxn’s March

Kristen Aguirre from 9News Denver did a very nice segment on MEAction Colorado’s planned participation in the Womxn’s March providing some visibility that is greatly appreciated by those whose lives are so badly impacted by this ‘invisible disability’.

Group photo courtesy Tom Strobel

Our small but mighty team grew a little bigger with the addition of some last minute volunteers who braved the below freezing weather and helped represent those fighting ME who can’t physically make it through the march.

1st Outreach Presentation in Colorado

Jim Lutey explains Myalgic Encephalomyelitis

One of the big goals of MEAction is to raise visibility for People with ME (#pwME). Last Tuesday, August 28, one of our Northern Colorado members, did just that. Jim Lutey’s presentation ‘What about ME’ for the Greeley After Hours Rotary Club, was the first such presentation by a member of MEAction Colorado. Jim talked about the disease symptoms and its impact on people’s lives. He told how ME has disabled his wife Pam who became ill 2 years ago. Pam was a member of the Rotary Club but is now too ill to attend meetings.

Jim stressed the need for research funding, medical education, standard diagnostic guidelines and coordination among the groups who are working to raise awareness for this dreadful disease. I had the privilege of attending and adding comments to the discussion. We covered the MEAction organization here in Colorado, and the national and global organizations.

Jim’s presentation was well received. The club members were attentive and asked thoughtful questions. One gentleman raised the issue of disability insurance and we discussed the problems that many #pwME face in trying to get approved for disability when it is so difficult to get diagnosed.

Greeley After Hours Rotary welcomes Jim and Diane

Members of the club expressed appreciation for the presentation and said they had learned a lot. They were interested in how they could help. They are hopeful that Rotary International will be open to supporting MEAction.

While Jim plans to give a few more presentations on ME for Rotary groups in the Greeley/ Loveland area, he can’t be everywhere. He will make his PowerPoint available for anyone who wants to give a similar talk. If you have contacts with Rotary clubs or other service or community organizations that would be interested, please let us know. If you would like to give a talk, let us know what info you require.

We need to educate Colorado. You can help.

 

– Diane for MEAction Colorado

 

 

Lobbying for S.R. 508*

On May 15th, 2018 we had a positive meeting with Mr. Kwan Atlas, Constituent Advocate in Senator Michael Bennet’s Denver office. We explained about the impact of ME on the tens of thousands of Coloradoans affected by this illness and asked that Senator Bennet support Senate Resolution 508* and hopefully encourage Senator Gardner to do so as well.

Hey, we are Congressional Lobbyists!

Here’s the MEActionCO team* in front of Senator Cory Gardner’s office building on May 29,2018. We had a positive meeting with his Regional Coordinator, Steven Emmen. We are encouraging Sen. Gardner to co-sponsor Senate Resolution 508 (SR508) to raise awareness of Myalgic Encephalomyelitis.

In summary, SR508 

• supports the goals of ME/CFS International Awareness Day and
• recognizes and affirms the commitment of the United States to discovering the cause of, and a cure for ME/CFS and
  improving the availability and quality of medical care for individuals with ME/CFS.

More to ME/CFS than Fatigue

“It just changed her life” Jim said. “She couldn’t do much more than get dressed and we’d go out and get a bite to eat and that would be about it.”

Pam Lutey, and her husband Jim who are members of MEAction Colorado, tell the story of how ME/CFS has  severely limited the life of an active northern Colorado woman.

Their story is featured in the May 27  2018 edition of the Sunday Tribune.

Although their health concerns kept them form attending the May 12th #MillionsMissing rally in Denver, Pam and Jim joined the planning team and offered advice and assistance.

Read the entire story of their experience with ME/CFS at this link.