March 2020


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,

Lara Heisler, Editor   heisler.lara@gmail.com
Jim Lutey, Editor       jimlutey@gmail.com 
 

Advocacy Day at the State Capitol
by John Kelty, MEAction CO State Chair
 
Tom Strobel and I attended Colorado Consumer Health Initiative (CCHI)'s Day of Advocacy at the Capitol on  February 20 with the goals of talking to our state legislators about an ME Awareness Resolution and to learn the ropes of doing this.

Tom did in fact meet with his representative, Alex Valdez (pictured here).  Rep. Valdez is our biggest state supporter and will be reading a tribute in honor of people with ME to the state house.  This was scheduled for February 25 but has been postponed to some time in March.  
 
Tom couldn't meet his state senator and I was unable to meet either of my legislators.
 
So from a legislative point of view, it was at best a mixed success.
 
We learned a lot about the process:
 
  • General organized advocacy days are far too long for PWME and quite frankly for most healthy allies. 
  • The capitol was an absolute zoo.   CCHI leaders said this was by far the craziest day they'd ever seen but even at half the crowd, would be perhaps too much for many people.
  • At the same time, meeting legislators is in theory very easy.  All you have to do is present a business card with your name and your legislator's name at the entrance to the Senate or House, and the chamber's guard will see if they are available and pull them out if so.
  • With enough advanced notice, meetings can be scheduled in advance.
Based on this, we think that a shorter, very focused ME-specific day can make state advocacy accessible us, and that there is a lot of value in doing this.  Also, we heard from some PWME that without a Denver MillionsMissing, we need to have some central event where people come together as a community.
 
So we will be planning an ME-specific day in April along these lines:
  • There will be a meeting room very near the capitol for us to gather, prepare and generally hang out.
  • The only requirement will be a short 15-minute training that day or online a few days before.
  • We will keep the meeting room for several hours for those who want to stay longer for the community event side of it.
  • We have a stipend from MEAction HQ for community events so if you would like to apply for covering travel costs (gas and/or lodging depending on distance), please email john.kelty@meaction.net if you are interested.  Depending on volume of requests, we might not be able to reimburse everyone.
  • Our steering committee will try to organize meetings in advance so we can plan the timing and be more assured of a meeting.
  • We will walk with people in small groups to the capitol to their meetings and/or to try to pull legislators off the floor.
  • The whole process should be done in just a couple hours or less.
  • We hope that maybe we can have people who are too sick to attend be represented by a healthy ally.
  • We will ask our legislators to support an ME resolution and to tweet about us on May 12th.
Stay tuned for more details! 


National ME Advocacy Day
by John Kelty, MEAction CO State Chair
 
We'll be joining with ME advocates from around the country at the annual ME Advocacy Day in Washington, DC on April 20.  The annual event is organized by Solve ME/CFS Initiative.  According to Solve, "ME/CFS Advocacy Week brings people with Myalgic Encephalomyelitis (ME), their loved ones, advocates, scientists, clinicians and caregivers from across the country together to call for more action and research funding, meet other advocates, and share their unique stories with members of congress, together in one voice. The keystone event of ME/CFS Advocacy Week is Washington, DC ME/CFS Advocacy Day, a full-day Capitol Hill storm where hundreds of advocates meet face to face with members of Congress and their staff."

Last year, advocates from Colorado met with staffers from 8 of the 9 Colorado members of Congress and met in person with the very supportive Rep. Crow.  We hope to meet in all the offices of Colorado's members of Congress this year.  I found it an incredible chance to meet friends from the national ME community and to really make a difference in building relationships in Congress.

If you are interested in attending, you can find out more at http://lobby20.solvecfs.org/.  The week also features advocacy training, a summit on "Navigating Public and Private Disability Insurance" and meetings at the NIH.  There will be ways for you to participate from back home by contacting Congress in support of our time there.  The in-person meetings have a lot more power if they are backed by lots of calls and emails from the folks back home, so I encourage you to really take part in a big way in April and encourage your friends, families and supporters to do the same.

MEAction and Solve are evaluating the coronavirus situation and will continue to update as the situation unfolds.  The Colorado steering committee is doing the same for the Colorado advocacy day.


Individual Advocacy Services Through CCDC
by Lara Heisler

Although MEAction and MEAction of Colorado don't officially endorse CCDC or any of its positions, we encourage our members to consider joining, and that joining is free and easy.

Individual advocacy services offered through Colorado Cross-Disability Coalition (CCDC) are free to our members, therefore we ask that you become a member of CCDC by clicking HERE.

CCDC's Individual Advocacy work is the process of assisting a member in correcting a problem such as obtaining and/or maintaining a benefit or service or solving a problem with a service provider, landlord employer, etc.

Individual advocacy can include but is not limited to: representing people at administrative and informal hearings and appeals, attending meetings, or writing letters on behalf of individuals. Their trained non-attorney advocates may be able to provide limited individual advocacy services. They do not provide case management or direct services.

Some examples of available assistance CCDC advocates may be able to help with:

Medicaid: They will attempt to address issues you have with Medicaid such as eligibility, appeals, application issues, benefit options, waivers, or buy-in programs

Housing: Theye will attempt to help with complaints about section 8 rule violations, habitability issues, and code violations when disability is a factor.

--for housing discrimination anywhere in the state, contact the Denver Metro Fair Housing Center ( https://www.dmfhc.org/). Their direct phone number is 720-279-4291.

--if you are facing eviction, call the local office for Colorado Legal Services immediately or through their online application.  HERE is the link.

Employment:  They have peer advocates who may be able to talk you through employment and employment-related problems

Court Accommodations:  If you need a disability-related accomodation at court, our advocates may be able to assist you access through the courts. Examples: sign language interpreter, option to call into a court appearance rather than appear in person, allowances to wait for the court in a quiet room.

Education:  They can provide advice and in some cases help with school-based Medicaid health care issues. They may also assist students entering a 2 or 4 yr. degree program with obtaining reasonable accommodations.

Social Security:  They may be able to assist individuals on Social Security with issues related to employment options without the fear of losing benefits.  Click HERE for details.

Please note: The CCDC also has Civil Rights attorneys who handle civil rights claims and ADA claims. However, an individual may come to us but typically we don't always represent just them, our cases are designed to have systemic change. (excerpt from Shannon Secrest, Deputy Director at the CCDC)


MEAction in the Community
 
On March 27, John and Julie Kelty will be screening Unrest and having a short discussion with the First Universalist Church of Denver's Friday Discussion Group.  On May 28, John will be discussing ME with the Tamarac Optimist Club.  Keep an eye out for any religious or civic group that you belong to or have contacts with that might be interested in learning about ME! 


ME International Update
by Jim Lutey, President
 
ME International is not associated with MEAction or MEAction of Colorado and neither MEAction nor MEAction of Colorado endorses the viewpoints of ME International although they also don't stand in opposition either. 
 
The Board has developed branding for the organization including a new logo, banner for the website, banner for social media posts, colors, and fonts.  The Website Committee is working on putting our brand on the website and organizing the site to be more user friendly.  Pam Lutey has been designated Marketing Director and has ramped up social media activity.  The board is in the process of determining our focus areas to achieve our Mission Statement which is  "The purpose of ME (Myalgic Encephalomyelitis) International is to support ME organizations, educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, family and friends." 
 
ME International recognizes ME (Myalgic Encephalomyelitis) as described in the International Consensus Criteria (ICC) as a distinct disease and is separate from Chronic Fatigue Syndrome as described in the 1994 Fukuda definition and is also separate from ME/CFS-SEID as described by the IOM in 2015.
 
 
Current board members are:
  • Jim Lutey, President (Colorado)
  • David Steckel, Vice President (North Carolina) 
  • Mary Kelley, Treasurer (Colorado)
  • Colleen Steckel, Secretary (North Carolina)
  • Jennifeer Caldwell, board member (North Carolina)
  • Pam Lutey, board member (Colorado)
  
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Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO.  Follow us on Twitter and Instagram @MeactionCO
  
 
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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.