April 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 
ME Action Colorado and the Colorado Legislature 2021
by Tom Strobel, ME Action Colorado Steering Committee Member

We’ve been busy this March and we’ve gotten quite close to actually accomplishing something in the Colorado Legislature. We are already in line to receive a tribute, sponsored by Rep. Alex Valdez, that would call for taking ME more seriously in Colorado. We almost got that last year but COVID struck and it was sidelined. But this year, we are pursuing a more ambitious goal: to set up a Long COVID/ME Task Force within Colorado State government. We are attempting this with a late bill, to be possibly sponsored by Sen Jacquez Lewis and Reps. Yadira Caraveo, Colin Larson and Shannon Bird. But how did we get here?
 
The week of March 8-12 was Chronic Illness Awareness Week in the Legislature-an opportunity for the state’s constituents to connect with their legislators and raise awareness with them about living with a chronic disease. We at ME Action Colorado have used that week to persuade legislators and members of both the Department of Health Care Policy and Financing (HCPF) and the Department of Public Health and Environment (CDPHE) that there are a lot of patients with Long COVID that are in the pipeline to be deposited in the state’s health care system that need continuing, competent care and that the state is not prepared for it. Some of these patients will end up with ME or similar post viral syndromes. How do we know this? Because we know that the medical resources for ME are virtually non-existent and the Long COVID patients are facing a similar environment.
 
We pitched this message at an Appropriations Committee Hearing where we asked for more money to address Long COVID and we’ve talked to several Senators and a number of Representatives in meetings set up by the Chronic Care Collaborative.
 
Some have enthusiastically embraced the cause, others less so but more often as a result of not being in a Health Committee and no Senators or Representatives have discouraged us from pursuing this legislation that would create a task force to implement education and research in the state for Long COVID and ME. Interestingly, when we talked to the people at HCPF, they were quite supportive of our efforts, though they thought that they were not the agency to spearhead such a task force, thinking instead that it should be in CDPHE. Also, a couple of people from the ME community testified at the Invisible Disabilities Disability ID program hearing to support their bill and introduce the House Transportation committee members to ME.
 
So we (John Kelty, Anneliese Steel and I) had a meeting with some CDPHE staff on Monday, March 29 and it went well. Well means, in this context, that staff seemed quite receptive to the idea of a task force and even suggested a solid framework with goals for such a task force. Though we got no definitive answer at the meeting we are hopeful that they will formulate a plan shortly to move ahead. THIS IS GREAT AND STAY TUNED! If this progresses, we WILL need YOUR advocacy to help your Senators and Representatives to see the wisdom in this plan. We will keep you informed and notify you when and how you can help. 

Legislators respond to their constituents!

Are You Having Trouble Finding The Vaccine?
From Alison Sbrana

Now that Colorado has just opened up the vaccines to the general public, I wanted to check in to see if anyone who wants to be vaccinated is having difficulty accessing the vaccine. I am in contact with state officials and a disability coordinator with FEMA who can help and want to know what barriers we are facing in trying to access the vaccine.

Will you please email me at alisonsale3@gmail.com if you want to access a vaccine and haven't been able to? And what issue is preventing you from accessing? (i.e. homebound, unable to find an appointment, no transportation, etc.).

COVID-19 Vaccines for City and County of Denver Residents Who Can't Leave Their Homes
From Colorado Cross-Disability Coalition


If you are age 18 or older with one or more high-risk conditions and are required to stay at home for health and safety reasons, you live within the City and County of Denver, and are eligible to receive your vaccine according to Colorado Department of Public Health and Environment (CDPHE) guidance, we can bring your vaccine to you! 

Sign up by calling Denver Department of Public Health and Environment at 720-865-3005 and press Option 4 for at-home vaccination. This service is available in English and Spanish, as well as other languages through a phone interpreter. 

Please note: This service is available for individuals who are required to stay at home for health and safety reasons, as well as one primary care-giver at the same address. The primary care-giver is eligible under Colorado’s Phase 1B as a home health provider, and does not need to present any credentials or certification.

Upcoming Calendar of Events in Colorado

ASAP: Register for Solve ME/CFS Initiative's Advocacy week. Click HERE.

Ongoing: Sign Open Letter to NIH & CDC demanding they pay better attention to ME. Click HERE.

April 8 at 12:00: #MEAction (national) presents Writing From our ME Lives. Click HERE

April 13 at 11:00: Congressional Meeting Training (registration needed).

April 15 at 12:00: #MEAction (national) presents Writing From our ME Lives. Click HERE.
 
April 17 at 1:00: #MEAction (national) Caregiver Support Call. Click HERE.

April 20: Remote Congressional Meetings (registration needed).

April 21: Solve's Social Media Advocacy Day (no registration needed).

April 22 at 12:00 #MEAction (national) presents Writing From our ME Lives. Click HERE.
 
April 23 time TBD: Monthly Support & Planning meeting. Click HERE.

April 29 at 12:00 #MEAction (national) presents Writing From our ME Lives. Click HERE.
 
May 9-15: Virtual MillionsMissing week.

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.