A profile of visionary support group leader Mike Munoz – part of a series highlighting the accomplishments of ME/CFS Fair Name Implementation Committee (FNIC) members.
Mike Munoz was helping out non-profits long before he became the leader of one as President of the Denver-based Rocky Mountain CFIDS and FMS Association (RMCFA). In his role as Certified Financial Officer he ensured that the non-profits he worked for had their t’s crossed and i’s dotted when it came to their finances.
Mike’s gradual progression with ME/CFS eventually stopped his work on the professional level; by 1997 he had to work at home and in 2002 he had to quit the professional non-profit world altogether. But it turned out that their loss was our gain; 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 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.
n 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.
n An upgraded seminar program gave Denver area patients access to local health professionals including chiropractors, acupuncturists, herbalists and disability attorneys.
n Reaching out nationally, he helped bring in well-known ME/CFS/FM professionals; in October of last year Kim McCleary brought the CFIDS Association of America’s KNowMore program to town.
n 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.
n In November long time CDC researcher Dr. Jim Jones gave an overview of the Centers for Disease Control’s findings on ME/CFS.
n The ME/CFS/FM community in Denver took note - and attendance at the monthly seminar programs has quadrupled.
n The RMCFA now has a long list of donors and volunteers.
n 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 has indeed helped 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 has been 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 has been difficult. Like ME/CFS and FM support group leaders everywhere, Mike has found that “our volunteers are so ill they tend to burn out quickly.”
Despite the RMCFA’s new prominence, Denver ME/CFS & FM patients 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 the RMCFA’s commitment to empowerment through education, their decision to join the Campaign for a Fair Name (http://www.afairname.org) was an obvious one. Mike noted that the “CFS designation trivializes the illness and leads to public misinterpretation and patient diagnosis issues.” He believes it’s “time to start the transition away from CFS.” For himself, Mike stated he “personally wanted to support Rich Carson and the physicians and advocates who have signed on to the cause - for all that they do to help the patient community.”
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 is now taking them away to some extent. The RMCFA’s recent success has not been without its costs. Its increased visibility has led to more work, and Mike’s health, in a gradual decline since he got the disease, has forced him to relinquish the President’s post.
He will remain as active as possible; he will chair the RMCFA’s Board of Directors and be the RMCFA’s national advocate, but his day-to-day input will decline as he focuses on improving his health.
Mike Munoz can take a step back knowing, however, that in helping to put the RMCFA on the national scene he’s left a big mark.
* Cort Johnson - founder of the Phoenix Rising website and newsletter (“Bringing Opportunity to ME/CFS/FM Patients”) - is a “go-to” man for plain-language interpretation of the latest on treatment and research, and has a special interest in chemical sensitivities. Read his profile, and plan to join the Live Chat Q&A with Cort Johnson on Friday, March 7 from 3 to 4 pm Pacific Time in the ImmuneSupport.com Community Chat space. (If you’re new to chat, you can register there now, then use the scroll bar on the chat screen's right margin to scroll down and investigate more than a dozen condition-specific chat rooms.)