UNREST in Denver March 2nd

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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!

Medical providers can earn CME credits. Click here for details.

Donations to cover the cost of the event and to support the work of MEAction may be made online at our GoFundMe page or in cash at the event.

RSVP at MEAction or on Facebook.

Twenty-eight year-old Jennifer Brea is working on her PhD at Harvard and months away from marrying the love of her life when she gets a mysterious fever that leaves her bedridden and looking for answers. Disbelieved by doctors yet determined to live, she turns her camera on herself and discovers a hidden world of millions confined to their homes and bedrooms by ME, commonly known as chronic fatigue syndrome.

Myalgic Encephalomyelitis (ME) is a systemic neuroimmune condition characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients fully housebound or bedbound. At least 75% cannot work or go to school even part time. An estimated 15-30 million people around the world are suffering from ME.

View the trailer here.

Our First Year!

our first year 2018 300x meacIn February 2018, MEActionCO started as a FaceBook group with a handful of members. With guidance from MEAction’s national team, we managed to organize and plan for the first Millions Missing event in Denver. As the group grew slowly to about 35 members we pulled together to organize the event.

May 12th – We pulled it off. It was a drizzly cool day at the state Capitol when we got together for the first time for a morning of speakers and live music and mutual support.  We scored a little media coverage with stories about Pam and Nora.

We had barely caught our breath from the Missing Millions event when the word came from the MEAction Global network that Sen Ed Markey of Massachusetts had introduced Senate Resolution 508: A resolution supporting the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day.

We got to work and donned our red T-shirts again to meet with a staffers at the offices of our Senators, Cory Gardner and  Michael Bennet.

While we continued to push for sponsorship from our senators for SR 508, the US Department of Health and Human Services (HHS) threw a monkey wrench into the works. HHS had sponsored the CFS Advisory Council (CFSAC). Since its inception CFSAC’s charter had been automatically renewed every two years as its charter expired. But in September, without notice, HHS decided not to renew. Even the members of the Council were not informed.

We immediately renewed our discussions with our senators’ staffers.  As a direct result of our efforts, Sen. Bennet’s office joined Sen. Markey’s and others to contact the HHS on our behalf to demand answers.

MEAction’s National Congressional working group, with a coalition of other ME advocacy groups, drafted a letter to the HHS demanding an explanation and a plan to continue the work left unfinished when CFSAC was abruptly terminated.

MEActionCO members have been meeting in person and via phone calls with staffers from the offices of both Senators and 5 of our US representatives to ask for their support and signatures on the HHS CFSAC letter.  (Look for an update here on that campaign very soon).

While getting a baptism by fire in the workings of congressional lobbying, other actions were being initiated by MEActionCO members:

  • In July Holly Heiman volunteered to start the Doctor list. She collated feedback from members’ experiences with Colorado doctors who seem knowledgeable or willing to learn. The list is available to MEActionCO Facebook members.
  • On August Jim Lutey, husband and caregiver of his wife Pam, organized a presentation for the Greeley After Hours Rotary Club to raise awareness and understanding about ME. Jim is willing to share his slides with anyone else who would like to present to a group.

As we approach the end of the year our member list has grown to 120. Our To-Do list has grown as well. We commend all the efforts of our members in 2018 and invite everyone to participate according to their abilities and interests. There are lots of opportunities and we are all in this together.

 

1st Outreach Presentation in Colorado

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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.

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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