Pueblo Woman’s 3 years to Diagnosis

Jillian WEBB

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

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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.

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’.

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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.

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Some of our members who are too ill with ME to march – photo courtesy Sue Cunningham

We marched to draw attention to the fact that 75 to 80 percent of the people that are affected by ME are women and historically diseases that predominately affect women don’t get enough attention and research funding.

The Women’s March is a very public inclusive venue and we hoped that we could achieve a lot of awareness by being there.

Several marchers told us they had seen us on TV the night before. And we were able to share information with other people on the route. Altogether a successful event.

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

 

 

Hey, we are Congressional Lobbyists!

Lobbyists at Gardners office 300x300Here’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.

Continue reading

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.

Understanding Chronic Fatigue Syndrome/ME

Nora and gang 300x300Nora Gayer, a member of the MEActionCO team, was interviewed on air with KGNU radio (88.5 FM and 1390 AM) in a segment broadcast on May 10, 2018, just 2 days before our #MillionsMissing rally. Nora is a smart, articulate, and knowledgeable patient who represented us well. The recorded version can be heard at this link.

An important point that she addressed is one concern that isn’t mentioned often; the early characterization of ME/CFS as Yuppie Flu, an ailment of only well off white women. This characterization did so much damage. While it is true that women are more likely to get ME, the Yuppie Flu narrative  continues to do a lot of damage to people who aren’t well off and/or aren’t white, especially when combined with how ridiculously difficult it is to be diagnosed, so such people are left underrepresented and less likely to be believed.

Thanks a million to Nora for a spot-on interview!

May 12th Backup Plan – Go Virtual

We would love as many as possible to attend our #MillionsMissing Visibility Action on May 12th. But your health comes first. If you don’t know if you will be well enough to attend the public event, a few days ahead of time prepare an individual event in your home. Put on your MEAction shirt and make up a sign and have a picture or short video taken of yourself.

Then on May 12th if you’re not feeling well enough to go to the public event you can post your picture/video to Facebook and/or Twitter or Instagram. Use the hashtag #MillionsMissing so the MEAction Network folks can find and count it. Every event big or small helps build our community.  Click here for more on Individual/Virtual events.

 

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Let’s Get the Word Out !

There are AT LEAST 14 THOUSAND people in Colorado affected by Myalgic Encephalomyelitis, by some calculations AS MANY AS 60 THOUSAND!
 
We want to reach as many as possible. We want them to know that even if they are alone in their homes, we are here advocating for VISIBILITY for them and ACTION to demand funding for research and treatment.
 
Won’t you help! Look for MEActionCO on Facebook, Twitter, Instagram and at MEActionCO.net. Please share, repost,  retweet and email our posts about the May 12th event.
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Let’s get the word out!