February 2022 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
John Kelty, Contributor john.kelty@meaction.net
Tom Strobel, Contributor strobeltom09@gmail.com

Colorado Activists in the News
By John Kelty, Chair, MEAction Colorado

Recently there's been some amazing stories of ME and Long COVID in the news in Colorado: 
  • Alison Sbrana is a long time active member of our group, a member of Body Politic's board of directors and also runs a Long COVID support group. She was featured on NPR's All Things Considered.
  • Dr. Gallagher is an Orthopedic Surgeon and former marathoner who now has ME. He has a book coming out around April. He was featured on CPR's Colorado Matters and has a blog with a summary of his journey. You'll hear more about the book once it's available.
  • A Mom of an 11 year old with Long COVID in Yampa was on Channel 7

Dr. Michael Gallagher running the Boston
Marathon in 2014. Courtesy of cpr.org.
MEAction Colorado working towards a Long COVID & Post-viral Conditions Taskforce
By John Kelty, Chair, MEAction Colorado

You may recall that last year our group tried unsuccessfully to get the Colorado legislature to propose a bill to create a Taskforce that would study Long COVID and post-viral conditions (like ME!) in Colorado.

We're back at it this year with renewed optimism. We have support from Representatives Bird (D), Larson (R), Titone (D) and Senator Priola (R).  These wonderful and bipartisan members of Colorado's Congress will sponsor and support such a bill assuming the Governor's office will approve of it. Generally, Governor Polis doesn't like Task Forces (and in my opinion that's a good thing) but we are optimistic they will make an exception for this one and we have a meeting later this month to secure their okay at which point we'll hope to soon have a bill to fight for!

Our efforts have been endorsed by Solve ME/CFS Initiative and the Invisible Disabilities Association and others including Long COVID groups that are aware and considering sending an endorsement.

Stay tuned for more information and hopefully some calls to action. Your participation will be doubly important in this effort as it will be state-wide and so there won't be anyone to fall back on to make it happen but us activists in Colorado. There will be chances to call and email your State Senator and Representative and chances to testify in person or virtually at committee hearings. As always, we'll tailor the actions so they include steps that even those most affected by ME or Long COVID can take part.
John Kelty and State Rep. Alex Valdez before Rep. Valdez reads the Tribute to People with ME and Long COVID, May 12, 2021.
Epstein-Barr in the News
By John Kelty, Chair, MEAction Colorado

Epstein-Barr has long been known to be a major cause of ME and probably many of you or your loved ones are no doubt here courtesy of the Epstein-Barr virus. In my opinion, this trio of articles is nothing short of jaw-droppingly amazing:




Perhaps such a vaccine will reduce the number of people who get ME, MS, and Longhaul post-viral conditions in general.
Katherine Luzuriaga, MD, principal investigator of the UMass study. Photo courtesy of umassmed.edu
In Memorium
by John Kelty, Chair, MEAction Colorado

We'd like to take a minute to honor a couple of heroes for the ME community who passed away last month.

Lily Siver, author of the How to Get On blog, passed away in early January. Her articles have helped people around the globe with ME in so many ways, and I know they will be useful and definitive guides for ages to come.

Open Medicine Foundations's beloved Chief Medical Officer, Ronald G. Tompkins, MD, ScD, passed away a couple weeks ago. Among many career highlights, in 2014 Dr. Tompkins joined Open Medicine Foundation’s Scientific Advisory Board, and in 2018, he launched The Harvard ME/CFS Collaboration with Dr. Wenzhong Xiao. In addition to critical ME/CFS research, he worked in inflammation biology, genomics, proteomics, and computational biology.
Ronald G. Tompkins
Photo courtesy of Open Medicine Foundation
Upcoming Calendar of Events in Colorado
February 3, 12:00: Writing from our ME Lives

February 4, 1:00: Colorado Cross Disability Coalition's learning session on Long-term support services in Colorado to register and for and for more information click HERE.

February 10, 12:00: Writing from our ME Lives





February 17, 11:30: Bateman Horne Center Lunch & Learn

February 17, 12:00: Writing from our ME Lives

February 19, 1:30: ME Caregiver Support Call

February 24, 12:00: Writing from our ME Lives


March 3, 12:00: 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.  

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.