May 2021 Newsletter

Greetings! 

Welcome to our #MEAction Colorado newsletter. We hope you find some valuable information in these newsletters. If you want to contribute to our next newsletter or have comments and suggestions, please let us know. 

Sincerely,
Jim Lutey, Editor      jimlutey@gmail.com 
#MillionsMissing 2021
by John Kelty, Chair, ME Action Colorado

#MillionsMissing 2021 features a week of virtual events… from our local event on May 13 to community building events and opportunities to share our art. You can find out more at HERE
and by signing up for emails from MEAction national HERE

#MillionsMissing will be as great as the ME community makes it! Take action now by sending a letter to the editor and emailing your doctor to learn about ME and post-viral illnesses. Sign up for our Colorado event which is May 13th 6:00-7:30 PM. And help us spread the word! Our virtual event is a townhall that is ideal for friends, families, allies, supporting organizations and even random strangers you know on social media. We’ll hopefully be able to feature a video of a Tribute to ME that the Colorado House of Representatives will be reading in Denver earlier the week!

We’ll have speakers with ME, Long COVID, and other comorbid diseases telling their stories and hearing from some of our allied organizations, like Invisible Disabilities Association. There will be a question & answer time, a walk through our advocacy tasks, and an open forum discussion.

We hope that you’ll act, spread the word and join the Colorado event and other events going on the week of May 10th.

Colorado State House to Read Tribute to People with ME
By John Kelty, Chair, ME Action Colorado

On May 12th, in the Colorado House of Representatives, State Rep. Alex Valdez will read a Tribute to People with ME! Thanks to Tom Strobel who has been working with Rep. Valdez for more than a year to make this happen! You can attend in person at the Capitol or hopefully watch it live! Stay tuned for more details and be aware that the schedule can change right up to the very last minute.
Colorado State Representative Alex Valdez
The Puzzle Solver
By Tracie White with Ron Davis, PhD

As a PWME I read The Puzzle Solver with anticipation; eager to see how a highly motivated research scientist would deal with a bedbound family member with ME/CFS. The story is well written but as you may expect a bit depressing as we follow his son’s gradual decline from a vibrant young man to a shell of himself. We hear from his father Ronald Davis, mostly through conversations with his ghost writer Tracie White. That is really my only complaint, I would like to hear his personal thoughts directly from him. 

The Puzzle Solver is a fairly easy read with a few technical sections for us citizen scientists to enjoy and ends as his son begins to slightly improve (who knows why) and his father, Ron Davis, concludes that he may have found a way to reliably diagnose ME/CFS. I can easily recommend this book as it is lovely to read about such a qualified scientist taking on ME/CFS. 

I have a copy that I would be happy to donate. If interested contact my partner, Tom Strobel at strobeltom09@gmail.com.

Susan E. Cunningham

Upcoming Calendar of Events in Colorado

May 6 12-1:30 PM Writing from our ME Lives

May 10 1-2 PM MillionsMissing Virtual Artists Salon

May 12 around 9:00 AM Tribute to People with ME will be read in the Colorado House of Representatives. Attend in-person or watch online, stay tuned for details.

May 12 1-3 PM MillionsMissing Global Event


May 13 6-7:30 PM MillionsMissing Colorado Townhall

May 15 1-2 PM MEAction Caregiver Call

May 20 12-1:30 PM Writing from our ME Lives

May 27 12-1:30 PM Writing from our ME Lives


If you have any questions or have any upcoming events for next month's calendar, please contact John Kelty at john.kelty@meaction.net.  

Keep the Advocacy Day Spirit Every Day
By John Kelty, Chair, ME Action Colorado
On April 21st, several of our members joined forces with COVID-19 Longhaulers at our annual Advocacy Day, organized by Solve M.E. People told their ME stories, how they have been "longhauling" for decades, how we must use the attention to COVID-19 to push NOW for more funding and attention and research and education into post-viral illnesses like ME. 

Advocating for $93 million takes more than a few days of action. Please click HERE to see what you can do to help with the fight today. 

Fifteen to thirty minute meetings were organized with the health policy experts of 6 of 9 Colorado members of Congress. 
Nationwide, over 900 people took part. It was incredibly moving to hear so many stories through the day and see so many advocates giving everything they had. We asked for support of the COVID-19 Longhaulers Act (summary), which would fund $93 million for: 

  1. Acceleration of Long COVID Research, including ME/CFS and other post-infectious illnesses
  2. Research into Long COVID Treatment Efficacy and Disparities, including ME/CFS and other post-infectious illnesses
  3. Education for Long COVID Patients and Medical Providers, specifying ME/CFS and related post-infectious illnesses

We also asked Representatives to sign a letter asking for ME/CFS funding in the Centers for Disease Control and Defense Department research programs. It is too early to know which of our elected officials have helped us this time.

We all have incredible power when we use it. Our voices and stories ring loud and clear when we speak truth to power and we can all make collective and individual differences. A grand example is telling emotionally charged stories to people who help decide our nation's health policy and telling them that they need to take bold action. But you have power every time you choose to use it even in the smaller things too, sending a tweet, calling Congress even if it may be outside your comfort zone.

Perhaps ending with a quote from Amanda Gorman's "The Hill We Climb" is appropriate: "When day comes, we step out of the shade aflame and unafraid. The new dawn blooms as we free it. For there is always light. If only we’re brave enough to see it. If only we’re brave enough to be it."
Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO. Follow us on
Twitter and Instagram @MeactionCO
Disclaimer: 
 
Newsletter volunteers are NOT medical professionals; we are patients, allies and caregivers sharing our own experiences. What you do with the information offered is at your own risk and is your responsibility. Always try to work with a good doctor and/or medical professional and please consult him/her for your personal medical decisions. Please note that none of the information on this site has been evaluated by the FDA. It is shared for support and educational purposes only and is not intended to diagnose, treat, cure or prevent any disease or illness. Please do not make major changes in diet or exercise without discussing them with your physician and/or medical professional. Never begin taking any supplement without discussing it with your physician and/or medical professional, and never stop taking any prescription medications unless directed to do so by your physician and/or medical professional. The opinions expressed in this newsletter are those of the submitter and not of the newsletter volunteers or MEAction.