October 2019 Newsletter

Welcome to our third #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. 

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

Rotary Resolution to Support Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

What is Rotary?
For more than 110 years, Rotary members have been addressing challenges around the world. Rotary links 1.2 million members to form an organization of international scope. Rotary members believe that they have a shared responsibility to take action on the world's most persistent issues. Our 35,000+ clubs work together to: promote peace, fight disease, provide clean water, sanitation, and hygiene, save mothers and children, support education, and grow local economies.
Rotary provides service to others, promotes integrity, and advances world understanding, goodwill, and peace through the fellowship of business, professional, and community leaders. The Rotary Foundation helps fund humanitarian activities, from local service projects to global initiatives. Over 35,000 Rotary clubs unite dedicated people to exchange ideas, build relationships, and take action.

Background on the Proposed Rotary Resolution
Jim Lutey is a Rotarian and when he was with the Greeley After Hours Rotary Club in Greeley, Colorado, he proposed a resolution for ME/CFS in September 2018 that the board of directors and club members supported. Jim's wife, Pam Lutey, is mostly home bound due to a 3-year struggle with ME/CFS. Jim then worked with the Council on Legislation designate for the Rotary District 5440 (Wyoming, part of Idaho, part of Nebraska, and north central Colorado). They worked on a resolution in March and April 2019 that was presented at a District 5440 Conference in May 2019.  Rotary club delegates at the conference unanimously voted to approve the resolution.
Then, the resolution was submitted from the District Governor to Rotary International in early June 2019. Resolutions submitted by Rotary clubs and districts will be voted on by each Council on Resolution delegates from 535 districts worldwide between October 15 and November 15, 2019.  If the Rotary resolution is approved by these delegates, then it goes to the Rotary International (RI) board of directors for consideration.

The Proposed Rotary Resolution
This is the Resolution that will be considered by Council on Resolution delegates from 535 districts worldwide between October 15 and November 15, 2019. 
To request the RI Board to consider collaborating with those working on myalgic encephalomyelitis/chronic fatigue syndrome research
Proposer(s):     Rotary Club of Greeley-After Hours, District 5440, USA
Endorsed by:     District 5440 through an annual district conference, Gering, Nebraska, USA, 18 May 2019
WHEREAS, the virus that often triggers myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is closely related to the virus that causes polio, and
WHEREAS, an estimated 15 to 30 million people worldwide, predominantly women, have ME/CFS, and
WHEREAS, government and organizational funding for research and education to recognize and treat ME/CFS
is woefully inadequate    
IT IS RESOLVED by Rotary International that the Board of Directors of Rotary International consider using the vast knowledge and resources Rotary has already developed and implemented to eradicate polio for the support of, encouragement of, and collaboration with those working to fund myalgic encephalomyelitis/chronic fatigue syndrome research and education.
This resolution would leverage Rotary's worldwide reputation and expertise on polio eradication to raise awareness of the need to educate the public and medical practitioners on the importance of treating and ultimately finding a cure for those suffering from ME/CFS .
If implemented, this resolution would have a financial impact on RI which cannot be determined at this time. Cost would be dependent on the scope and extent of support provided by the RI Board for collaborating with those working on ME/CFS research.
Article Submitted by Jim and Pam Lutey, Johnstown, Colorado

ME Advocacy Update

When we last worked on Congressional advocacy, we were pressuring the Senate to consider a couple ME appropriations items, and celebrating Rep. Neguse's co-sponsorship of the House Resolution of ME awareness.  I would like to take a moment to update on these actions.

In the Senate, we are hoping the appropriations committee will consider increasing CDC funding by an extra $4.5 million, and that they will include ME as a disease that can receive Defense Department funding based on its similarity with Gulf War Disease.  Both of our Senators contacted the committees on our behalf to put in a good word for ME consideration.  As it turns out, the Senate has paused all appropriations considerations and passed a "continuing resolution" so that the current budget will be in place until November.  At that time, we'll try again to get our line items included.  In the meantime, there's nothing much anyone can do on the matter.

In the House, the Resolution now has 8 cosponsors, with a very bipartisan split of 4 Republicans and 4 Democrats.  Unlike the Senate, House rules do not allow any resolutions naming single diseases or dates to actually be voted on-not for ME, not for anything else-so this very open-ended as to when cosponsors can be added.  After turning our attention in CO to the State Resolution, you can expect to see a push to see if we can get the other 6 CO Representatives to co-sign the resolution.  While this seems to be entirely symbolic, it opens the door to having more support when we approach Congress for future concerns and might help us to pressure the State government for similar resolutions.

State Resolution Effort

This year we'd like to get a resolution of ME Awareness declaring May 12th to be "Myalgic Encephalomyelitis Awareness Day in the State of Colorado."  Several other states have done this and we'd like Colorado to join their ranks.  While a resolution is partly symbolic, there are several good reasons for us to focus on this:
  • Sometimes members of state legislature go on to more powerful positions.
  • Letters of the resolution can be sent to the Colorado Department of Health and the board of UCHealth.
  • When we want to do contacts in the state, such as with Kaiser, or when we talk to Senate Candidates or CU Regent Candidates or other politicians, we can reference the resolution to show backing of the entire State Government.
The process will go something like this-we ask our community to contact their state Senators and Representatives asking them to be the "Prime Sponsor" that introduces the resolution, meet with them or have calls with them as needed, and get it introduced to the floor.  Then we cycle back and ask for other legislators to co-sign the resolution, and then the Prime Sponsor will introduce it to the floor.  I look forward to a day when we can have a big group of people in red MillionsMissing shirts on present for the official signing of the Resolution... maybe we can even get a major press story out of it.
So stay tuned to the emails you've received on this and will receive, and if you have the mental energy and time for it, go for it...  Our Congress experts will be there with you along the way so no experience is needed.


Center for Health Progress (CHP)

Last year MEAction of Colorado joined Colorado's Center for Health Progress's Health Policy Committee.  This helps us have more visibility in the state legislature and with other health-minded groups, as well as gives us a voice in health issues that are of concern to people with ME.

The Center for Health Progress (CHP) was founded in 1997 with the mission to create opportunities and eliminate barriers to health equity in Colorado.  CHP hosts several annual education events for the community.

Here are some issues CHP deals with: 
-Health Equity-our health should not be determined by the color of our skin or size of our paycheck
-Equity Lab- we need health system insiders to be champions for health equity within their organization.  This is a 2 year leadership and learning program that will support cohort members in developing and implementing internal policy changes.
-Legislative--Need for policymakers to be champions for health equity at the Capitol.
-NEMT (non-Emergency Medical Transportation)-CHP with Together Colorado have a program that provides free transportation to and from covered non-emergency doctor appointments for Health First Colorado or Medicaid members.

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
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