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.

Colorado Members of Congress send letter to HHS

Colo letter 2019 on 1 page 300pxWe are thrilled to share this Letter to the HHS that Sen. Bennet, and Reps. DeGette, Perlmutter, Neguse and Crow sent to the HHS regarding the CFSAC (CFS Advisory Committee). The letter demands answers after the committee was disbanded.  Please see below for how to thank them on social media.

Last year, over 40 members of Congress including 2 from Colorado, signed a letter to the HHS.  Not content to just do that, the staff of Sen. Bennet worked with us to craft a Colorado-specific letter which was signed by 11 of us from MEAction CO plus Diane Bean from the Solve ME/CFS Initiative Board of Directors.  Sen. Bennet’s office added a cover letter and contacted all Colorado Members of Congress to come up with support from 5 of them.

 

This comes as a direct result of your support for our advocacy.  All your emails and calls truly made a difference in catching Congressional attention in a big way.

We accomplished more than just 5 more voices in support:  now every single CO Member of Congress is aware of our concerns!

Regardless of what happens with HHS and the CFSAC, when there is legislation introduced before Congress, we can count on strong support from most of our delegation, and awareness from them all.

We are deeply grateful to the four representatives who signed and especially to Sen. Bennet and his health staff for their extreme dedication and for going the extra mile for us.

Please thank our congressional supporters on Social Media.  Personalize or use a minimal text for the Reps: “Thank you for supporting people with ME/CFS by signing the letter to HHS regarding the CFSAC.”  And for Sen. Bennet: “Thank you for supporting people with ME/CFS by writing a cover letter to the HHS regarding the CFSAC and by contacting the rest of Colorado’s Members of Congress.  I deeply appreciate your support.”

dems who signed letter 500 x210Here are their contacts on Facebook and Twitter:
facebook.com/senbennetco/
facebook.com/degette/
facebook.com/RepJoeNeguse/
facebook.com/RepPerlmutter/
facebook.com/RepJasonCrow/

@SenatorBennet
@RepDianaDeGette
@RepJoeNeguse
@RepPerlmutter
@RepJasonCrow

 

UNREST in Denver March 2nd

unrest film poster (7) 300x300

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.