March 2021

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       [email protected] 
 
 
Colorado Advocacy Day   
By John Kelty, Chair, MEAction Colorado     
 
I invite you to join one of #MEAction Colorado's major annual events: Advocacy Day at the state legislature with Chronic Care Collaborative's Chronic Disease Awareness Week, starting March 8th!  This is a great chance to meet (virtually!) with your state Senator and Representative to discuss ME health equality and long COVID!   
 
No experience or special skills are necessary.  We'll provide all the information and help that you need including exactly what to say in your meetings.
 
If you are interested but find that this is too much energy to do alone or to do at all because of ME or other factors, this year we can have a healthy ally advocate with you.
 
   
There's an optional training on March 3rd at 12pm MST.  Once you register, you'll have online meetings set up sometime the week of March 8th  
with your state legislators.  
 
How to do this:
  • Register by March 2nd. 
  • Email me, [email protected], if you plan on attending and if you need a healthy ally.
  • Optionally attend the March 3rd 12pm training.
  • Watch for ME-specific instructions and practice your story a few times.
  • Stay tuned for your scheduled meetings week of March 8th.

Why it is important:

  • The Colorado government is not taking ME or long COVID seriously.
  • These meetings make an impact! Thanks to 2020 Advocacy Day, Rep. Alex Valdez will soon be reading a tribute to people with ME later this year.
  • We hope to expand on that support to introduce ME legislation.
  • We all have tremendous power and can unleash that power with just an hour or two of work.
  • It will be good practice for US Advocacy Day in April.
For more information, check out this flyer.

 
Upcoming Events in Colorado  
 
  • March 2 - CCC Chronic Disease Awareness Week registration deadline
  • March 3 - CCC Advocacy optional training at 12:00 pm
  • March 4 - #MEAction (national) presents Writing From our ME Lives at 12:00 pm.  Click HERE.
  • March 8-12 - Meetings with state legislators to be scheduled
  • March 11 - #MEAction (national) presents Writing From our ME Lives  at 12:00 pm.  Click HERE.
  • March 18 - #MEAction (national) presents Writing From our ME Lives  at 12:00 pm.  Click HERE.
  • March 25 - #MEAction (national) presents Writing From our ME Lives  at 12:00 pm.  Click HERE.
  • March 26 - #MEAction Colorado monthly planning meeting, all are welcome at 10:00 am.  Click HERE. 
  • March ??? - Launch of new #MEAction Colorado support group, stay tuned for details
  • April 18 - April 24 - Solve ME/CFS Initiative's Annual National ME/CFS Advocacy Week.  Click HERE.
If you have any questions or have any upcoming events for next month's calendar, please contact John Kelty at [email protected].   

 
2020 ME Advocacy Highlights in Colorado
Compiled by John Kelty, Chair, MEAction Colorado     

Here are highlights of ME activities in Colorado last year.  I thank everyone that participated in these great events.
  • 10 Coloradoans joined Solve's ME Advocacy Day and met with the offices of 8 out of 9 Colorado members of Congress.
  • Sen. Bennet signed a letter with 12 other senators asking for post-viral ME research.  Click HERE.
  • Rep. Perlmutter co-sponsored HR 7057 (Funding Research for COVID-19 subsets and ME/CFS) to fund $6 million/year in ME funding.  Click HERE.
  • Joined Rep. Buck's town hall and spoke to him directly about HR 7057.
  • Discussed ME Awareness with Sen. Bennet Grand Junction staffer.
  • Participated in Advocacy Day at the Capitol and meet with state Rep. Alex Valdex.
  • Had discussion with state Rep. Soper on ME.
  • Tribute to people with ME was due to be read in the State House by Rep. Alex Valdez.  It was postponed at the last minute due to a legislative all-nighter, then cancelled due to the whole pandemic thing.
  • Governor Polis sent Proclamation of May 12 as ME Awaress Day.  Click HERE.
  • Virutal town hall with State House candidate Kyra Storojev to discuss the lack of ME support in Colorado.  Click HERE.
  • MEAction launched CO emergency fund for people with ME as a pilot program.  Click HERE.
  • Joined Healthcare Policy & Finance stakeholder meetings to provide input into a medical Centers of Excellence program.
  • Participated in Invisible Disabilities Association annual gala.  Click HERE.
  • Discussed differing outcomes that people of color have related to COVID-19, ME and healthcare in general.  Click HERE.
  • Took part in a virtual #MillionsMissing.
  • Gave interviews to Chronic Care Coalition for potential press/testifying stories.
  • Participated in the Postcards to Doctors program.
  • Supported each other in numerous ways, worked through medical and legal questions, COVID-19 questions, hurt, cared, and grew.
  • Had a member complete second visit to NIH for the post infectious ME/CFS study.
  • Marched at the Woman's March with support from Prairie Unitarian Universalist.

Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO.  Follow us on Twitter and Instagram @MeactionCO
  
 
 #MEAction Colorado
 
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.