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From The Desk of Kim McCleary 
The word advocacy is a deceptively simple term used to
describe complex human action and reaction. In the 20th century,
advocacy won women the right to vote, fueled Civil Rights legislation and
brought HIV/AIDS to light as a worldwide public health crisis. The root of these
historical accomplishments and others like them can often be traced to the
action of several spirited and courageous individuals. Individuals who decided
not to settle for the status quo, who chose instead to take a stand against it.
In this way, all advocacy is personal, even when it has international
impact.
In the CFIDS community, advocacy can mean something as basic
as helping family members and friends understand the disabling and often
unpredictable nature of the illness. It can mean finding and getting access to
community support services or appropriate medical care. For others, it means
forming and finding resources to conduct a local support group to provide a safe
environment for sharing the CFIDS experience. In New Jersey and Nevada, advocacy translated into state
legislation providing expanded
insurance coverage for CFIDS
treatment and
statewide medical
education about CFIDS.
On the national level, advocacy has produced a
Social Security Ruling (99-2p) that
identifies CFS as a disabling condition. It uncovered a
funding scandal at the Centers for
Disease Control that led to $12.9 million in restored research dollars and
findings of much greater
prevalence,
staggering economic
impact and severe functional disability (article at press). It produced
a formal forum, the Department of Health and
Human Services CFS Advisory Committee, where advocates and federal
public health officials meet to report on activities, voice concerns and
recommend policy change. Advocacy has also empowered thousands of individuals
through participation in 12 annual lobby days, six Congressional briefings and
sending more than 10,000 letters to legislators, public health officials and
media outlets through the Association’s
Grassroots
Action Center.
The CFIDS Association has led these national efforts since
1992 and has provided resources, support and counsel to others working on the
state and local levels.
Some say it’s not enough. I agree.
There are an overwhelming number and variety of unmet needs
among persons with CFIDS and those who care about them and advocacy is a means
of getting those needs met. At times, the passions that motivate action
sometimes ignite conflict over the relative priority of those needs and the
tactics used to meet them. Yet, diversity of views and strategies is essential
in any successful movement. Taking lessons from other health causes, multiple
complementary and parallel approaches can build strength, generate momentum and
speed progress. But in other communities, from HIV/AIDS to Parkinson’s to
cancer, there is a tendency to view those with shared goals as rivals rather
than partners. This has also been true within the CFIDS community. Rivalry
consumes precious resources, risks meaningful progress and deters potential new
partners from joining our fight to conquer CFIDS. Put simply, we can’t squander
the little capital we have.
In the 14 years that I have worked in this community, my
greatest disappointment is that, so far, we haven’t achieved the
critical mass necessary to vault our cause forward. We must recruit more
researchers to the study of CFIDS, more clinicians to care for patients, more
high-visibility spokespeople to educate the public, more advocates to influence
public and social policy and more financial resources to sustain it all. We’ll
only achieve this through partnership. My greatest hope is that we
will achieve critical mass, push beyond the tipping point and propel our common
cause in significant – and lasting – ways.
I am grateful to Marla McKibben, founder of
P.A.N.D.O.R.A , for telling me about a
book, Emerging Illnesses and Society: Negotiating the Public Health
Agenda. It’s packed with case studies of how various illnesses have come to
public recognition. CFIDS/CFS is featured throughout, and our history is
recounted, with a more generous “final grade” than we might give ourselves. In
the introductory chapter, the editors offer this commentary on the social
processes by which illnesses achieve prominence:
“Communities of suffering (COS)* (and those at risk)
deserve to have a ‘seat at the table’ of research and public health policy
decision making. There needs to be greater sensitivity to the etiological
understandings of COS . On the other hand, communities of
suffering also need to recognize that their etiological understandings may not
be correct. Adversarial actions taken primarily for media attention can impede
the process of getting new health problems on the agenda. Until we have all the
answers, each side needs to be willing to listen and adapt, and research agendas
need to be broadly based and not prematurely narrowed to meet the interests of
either party. Public health and medical research institutions can benefit in
their mission of improving society’s health from collaboration. Medical
researchers, public health officials and communities of suffering need to be
partners.”
Through this book, those outside of the CFIDS community may
learn what we, as advocates, have achieved so far, and how we’ve done it. In
turn, those of us still working in the trenches of CFIDS activism can learn to
strengthen collective efforts through diverse approaches, rather than weaken our
cause by competing with one another. In doing so, we can achieve historic impact
experienced at a national, even international, level.
K. Kimberly McCleary
President & CEO
The CFIDS
Association of
America
* The editors use this term to describe groups of people
coming together to help one another deal with their illnesses and other
afflictions. It was first used by anthropologist Victor Turner.
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