Mike Munoz was helping out non-profits long before he became the leader of one – for two transformative years, as President of the Denver-based Rocky Mountain CFIDS and FMS Association (RMCFA).
In his former role as a Certified Financial Officer, Mike ensured that the non-profits he worked for had their t’s crossed and i’s dotted when it came to their finances. But the gradual progression of his ME/CFS eventually stopped his work in the professional arena. By 1997 he had to work at home, and in 2002 he had to quit the professional non-profit world altogether.
As it turned out, their loss was our gain, because despite his increasing debility Mike turned out to have the right blend of experience and passion to bring the venerable RMCFA to a new level. For 20 years, the RMCFA had done just fine as a local support group, but he had visions of more.
New Center of Activity in the West
Mike’s recent two-year stint as RMCFA President brought a veritable blizzard of change. His goal was to turn a local support group into a national and even international educational outlet.
• Recognizing that ME/CFS and FM patients are often homebound, and as he put it “starving for information,” he built a website that provides basic information, and an e-newsletter that supplies links to breaking news on research and treatment.
• An upgraded seminar program gave Denver area patients access to local health professionals including chiropractors, acupuncturists, herbalists and disability attorneys.
• Reaching out nationally, he helped bring in well-known ME/CFS/FM professionals. In October 2007 Kim McCleary first brought the CFIDS Association of America’s KNowMore program to town.
• It was in Denver that Dr. Suzanne Vernon, soon to be announced as the CFIDS Association’s first research director, gave her first address on the CAA ticket.
• In November 2007 long time CDC researcher Dr. Jim Jones gave an overview of the Centers for Disease Control’s findings on ME/CFS.
• The ME/CFS/FM community in Denver took note – and attendance at the monthly seminar programs soon quadrupled.
• The RMCFA now has a long list of donors and volunteers.
• The RMCFA’s visually striking website – which Mike, a talented web designer, created – now regularly gets hits from as far away as Europe and Japan, and the newsletter is sent all over the world.
Mike Munoz did indeed help bring the RMCFA into the Twenty-First Century.
The Challenges of a Patient-Powered Organization
Mike’s journey from the professional non-profit to the ME/CFS/FM non-profit world was enlightening. He expected that fundraising would be his greatest hurdle, but the Denver community has been generous. Instead, the RMCFA’s greatest need is simply for healthy capable volunteers. Running a non-profit on the backs of highly ill volunteers is difficult. Like ME/CFS and FM support group leaders everywhere, Mike found that “our volunteers are so ill they tend to burn out quickly.”
Despite the RMCFA’s new prominence, Denver ME/CFS & FM patients still face the same problems their counterparts do everywhere.
• Asked to describe their greatest needs, Mike quickly replied “finding a physician.”
• Asked to describe their overall mood, he replied “Frustration. Frustration at not being able to get well, frustration at not being able to find a knowledgeable physician, frustration at the low level of research, frustration that the train is moving so slowly, frustration deep enough that it sometimes evolves into depression.”
• Asked about the most important issues facing ME/CFS patients, he said “I could talk for an hour on that’ but he was clear that “What we really need is more money, a lot more money for research and more physician education.” If he could have just one thing it would be a good diagnostic test that would legitimize ME/CFS, attract more research funding to the disease, and make ME/CFS a regular part of every physician’s training.
Educating Patients, Doctors, and Government
With so many problems facing patients, Mike’s recognition of how easy it was for a support group session to turn into a complaint session led him to focus on support through education.
In his eyes, education equals empowerment on all levels – patient, physician, and government. The seminar program, for instance, is just as much about educating the health practitioners about the needs of ME/CFS and FM patients as it is about educating the patients. When he talks about education he is talking about advocacy as well, stating “Everything we do is a function of advocacy as well as education – the two go hand in hand. There really isn’t a clear line between the two.”
Given his commitment to empowerment through education, Mike’s decision to support the Fair Name Campaign was an obvious one. “It’s time to start the transition away from CFS,” he said, because “the CFS designation trivializes the illness and leads to public misinterpretation and patient diagnosis issues.”
A National Advocate
ME/CFS brought Mike Munoz’s talents to the members of the Denver ME/CFS/FM community and beyond. It’s ironic and saddening that the same disease has also taken this benefit away to some extent. The RMCFA’s increased visibility was not without its costs. It led to more work, and Mike’s health, in a gradual decline since he got the disease, forced him to relinquish the President’s post.
He intends to remain as active as possible, but his day-to-day input had to decline as he focused on improving his health. Nevertheless, as he took a step back he had the satisfaction of knowing he left a big mark.
* Cort Johnson, a noted research reporter, is founder of the website Phoenix Rising: A Guide to ME/CFS (http://www.phoenix-cfs.org) and publisher of the bi-monthly Phoenix Rising Newsletter.