Government moves slow. Any action requires lengthy processes – all of the checks and balances intended to create better, more deliberate legislation. Activists for Myalgic Encephalomyelitis (ME) across the country understand the sausage-making well as they have sought for their state legislators to recognize the urgent challenges facing ME, including the dearth of funding, complete lack of knowledge in the medical community and stigma keeping the illness from receiving serious and urgent attention.
We applaud the hard work and tenacity of activists who have gained Senate and House resolutions in their states over the past year, including California, Massachusetts, Illinois, Georgia, New Jersey and North Carolina.
The following cities have also achieved proclamations for ME/CFS Awareness Day this year: Four Massachusetts cities: Northampton, Pittsfield, North Adams and Cambridge, and one from the Commonwealth of Massachusetts; Dallas, TX; Washington, North Carolina; Walnut Creek, CA; and Knoxville, TN.
Even though state resolutions or city proclamations are non-binding (and so, relatively easy to achieve support from legislators), they can serve as a useful tool for advocacy.
“A resolution can raise awareness and reduce stigma with the lawmakers in your state,” said Timbre Livesay who worked to secure the resolution for ME in Georgia. “If a legislator has family with the disease or other experiences with ME/CFS, the resolution can help you identify that future ally.
“Remember, state lawmakers sometimes become federal ones, so getting a sympathetic ally on the ground floor is invaluable,” Timbre said. “Also, a resolution is a form of governmental validation. This is useful when courting Congress as you have proof that other legislators have taken the disease seriously.”
Timbre has created a “how-to” guide charting the steps necessary to getting a state resolution passed for ME. She has also catalogued her experience step-by-step in a case study. Read her “how-to” guide and case study here.
If you’re interested in pursuing a city proclamation, check out this how-to guide and case study here.
- In Chicago, the parent of a 12-year-old daughter with ME, Amy Mooney, talked to her state representative about her daughter’s illness and its lack of medical treatment at every chance she could. She cornered her state representative, Mike Zalewski, at her older daughter’s t-ball games or at the community pool. Eventually Zalewski would become an ally for ME and sponsor the state resolution as it made its way through the committees onto the senate floor for a vote. Read more about Amy and her fight for her daughter here.
- Not a day goes by that Bay Area resident, Mark Camenzind, is not fighting at every turn to save his son’s life, who is severely ill with ME/CFS, completely bed-bound and unable to eat or speak. From visiting rotaries to enlist their support for ME to attending talks at Stanford to network with philanthropists to giving blue ribbons to everyone he meets to tie on their doors in the hopes that even educating the postal worker will make a difference, Mark is fighting on all fronts. Most recently, Mark has worked to secure resolutions in the California Senate and House for ME. The California Senate just approved a resolution with the help of Senator Steve Glazer, and Assemblywoman Catharine Baker is sponsoring one in the House. Read more about the California resolution here.
Mark’s son, Tom, became very ill with ME/CFS three years ago during his sophomore year studying computer science at Stanford.
- Massachusetts passed a State House Resolution for ME at the helm of the Massachusetts CFIDS/ME & FM Association, which is a strong, active association that has been fighting for people with with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME and FM (Fibromyalgia) since 1985. A special shout-out to Bob and Kathy Robitaille, the association volunteers who coordinated the state-wide effort, and to the tenacious advocate, Rivka Solomon.
If we have missed one, please let us know!
We want to say thank you for the behind-the scenes efforts to update our Mepedia page on proclamations. Please go here to learn more. http://me-pedia.org/wiki/United_States_proclamations