Mike Munoz of the Rocky Mountain CFS Association (2008)
“Mike Munoz has retired from his leadership role with
RMCFA. During his two year tenure, Mike began as our web site developer, became
President, and ended with a period as our Board Chair -- all the while continuing
as our webmaster. Mike truly brought RMCFA into the 21st Century with a fine
web site, upgraded e-mails, and a group phone line. While President, Mike
set up all the monthly events, attracted a few large corporate donations as well
as more individual donations, always kept our spending "in the black,"
and spent much of his own time, energy, and funds to attend out of state seminars
where he greatly improved RMCFA's image as seen across the country.
Thanks, Mike, for your dedicated service to RMCFA.
We wish the best possible health for you” - RMCFA
Interview
Can you tell us a bit of your story with
CFS
?
In 1997 I came down with an illness that was then diagnosed as a severe flu that
did not go away. After a year and a lengthy process of illumination, I was diagnosed
with gradual onset
CFS
. I was then working as a CPA/Certified Financial Officer (CFO) for a non-profit
organization managing large endowments and a large staff. It became apparent in
1998 that I could not continue to work full time and set up an office at home. In
2000, I had to stop work completely as the illness had progressed to the point that
made it impossible to keep up with my work even on a part time basis.
Support Group Interviews
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Can you give us some basic facts regarding
the RMCFA?
The RMCFA was created in 1985 as a
CFS
support group. We filed as a 501-3C non-profit organization in 1991 and became advocates
for fibromyalgia in 2000. We’re an all volunteer organization funded strictly by
donations. We adopted the mission “To promote and conduct activities which
further education, support awareness, advocacy and research for Chronic
Fatigue Immune Dysfunction Syndrome and Fibromyalgia” in 2006.
You became President of the RMCFA about
two years ago. What were your goals?
My goal was to increase our visibility and outreach. We created a website
and a monthly online newsletter (Infocus e-news) and have monthly seminars. The
website and e-newsletter has broadened our exposure and has enabled a lot more people
to use RMCFA resources. Since the beginning of last year, we have increased our
base by four times and get web inquiries from all over the world including Europe
and Asia. ME/CFS/FM patients are starving
for information and a lot are homebound and can’t always attend events. They depend
on the internet for information and support and hopefully we help fill that void.
Over the last few years RMCFA has come a long way and I’m really proud of what we’ve
done.
The RMCFA has gone through a lot of growth
in the past few years. Has the focus of the group changed?
The RMCFA in recent years has moved from a support group to more of an educational
focus with a web presence. We’re focused on support through education. Traditional
support groups in this area have had a tendency to be non-productive in our eyes
and disappear pretty quickly. We try hard to avoid a negative atmosphere and give
attendees something that they can take home and use to improve their situation.
Given your experience with managing non-profits
you must have had some expectations about the Rocky Mountain CFIDS Association.
Were there any surprises for you?
The most difficult challenge has been finding capable and qualified volunteers
that can stay the course. It wasn’t something that I had experienced with other
non profits. Our volunteers are so ill they can’t put in a lot of time and they
can burn out quickly. I anticipated more “well” volunteers from patient families
and health care professionals and that just hasn’t been the case. I still think
the lack of education and the present stigma concerning the two illnesses still
weighs heavily on recruiting volunteers.
The monthly seminars are an important part
of your educational outreach program. How easy or difficult has it been to get qualified
speakers for your seminars? o get speakers for your monthly meetings?
We have had good success finding qualified speakers for our events. We do our
best to mix the topics between traditional medical providers, alterative/naturopathic
practitioners, disability attorneys and cosponsoring events with other local and
national organizations. There is certainly no shortage of issues to cover with ME/CFS
and Fibromyalgia.
What’s the situation with capable ME/CFS
physicians in the Denver area. Are there many?
Most of the calls I get are for doctor referrals. It’s very hard to find doctors
in the Colorado area who are really knowledgeable about ME/CFS.
I think we’re just at the very beginning of physician education regarding these
illnesses. One of the goals with the seminar program and web resources is to increase
physician education directly which is a difficult task at this juncture. We also
encourage physician education through a bottom up approach. Educating patients and
giving them the tools and resources to help educate their physicians has been as
effective.
What about advocacy? Does the RMCFA engage
in advocacy?
I think everything we do is a function of advocacy as well as education – the
two go hand in hand. We do our share of telephone advocacy and advocacy is a major
function of the RMCFA website.
How about the local support groups? How
are they doing?
The local support groups have come and gone. It is very difficult for support
groups because of the inherent energy issues with the illnesses. We hope that as
the illnesses become more accepted that this trend reverses and we see more resources
for patients.
I noticed that the RMCFA is affiliated
with CFIDS Association of America (CAA).
What is your relationship with them?
We are a member of the CFIDS Association of America as well as the National Fibromyalgia
Association and try to work with any local or national organization with the same
mission. Last October, we worked closely with
CAA
to bring a “KNowMore” Conference and the photo exhibit to Denver. Kim McCleary and
Suzanne Vernon spoke at the conference which had a very nice turnout. We will continue
to work with
CAA
in the future in any way we can.
What are the most important issues facing
ME/CFS?
I could talk for an hour on that! There are so many needs for ME/CFS. If I was to narrow it down to few aspects, I would
say that we need a lot more funding for research and education. Diagnostic tests
and a
CFS
name change would be an important step verifying the illnesses and changing public
perception.
What is the mood of the Denver ME/CFS
patient?
The word frustration would seem to sum it up. Frustration at not being able to
get well, not being able to find a knowledgeable physician and at the lack of funds
available for research. I think that most patients feel a little helpless that the
train is moving so slowly.
How is your health right?
My health has been declining since I got ME/CFS
in 1997. I had to recently make the tough decision to step down as RMCFA president.
I need to concentrate on getting a little better right now but will continue as
a RMCFA board member and doing what I can to help education and advocacy of
CFS
and Fibromayalgia.
The RMCFA has grown a great deal in the
past few years. What’s next for the organization?
Our growth has been a little bit of a double-edged sword and right now we are
going through a growth digestion phase. 2007 was our best year and I expect that
to continue. Our biggest goal in 2008 will focus on recruiting volunteers and continuing
to find better ways to help educate patients, medical providers and the public about
these two devastating illnesses. We will also be looking to work with other organizations
that have the same mission.