TO TABLE OF
My research wish list for year
By Terry Hedrick, PhD
we are starting the
next millennium, and as persons with chronic fatigue syndrome (CFS), we are faced with the same goals
we had 10 or 20 years ago: discover what causes this debilitating illness, identify effective treatments
and learn how to prevent others from becoming ill.
The Centers for Disease Control (CDC) scandal
has left us wondering whether the federal government is really committed to those same goals. In addition
to the normal politics that always occur in scientific research, we have been plagued with the added burden
of purposeful neglect. That is enough in and of itself to bring on the "blues" for PWCs, advocates and
physicians who have been working for so long to improve PWCs' quality of life.
To combat this feeling,
I decided to create my own "wish list"---a plan for how I propose that the CDC begin to make up for its
neglect and admitted betrayal of trust.
WISH #1: To
have a new, thoughtful strategic
plan for CFS research in place by the fall of the year 2000. A simple rehash of the advice CDC
has received over the past seven years will not help move us forward. The new plan should address the
direction, staffing and measurable goals for the program as well as key issues such as a name change for
the illness. The plan should be developed with the input of the CFS Coordinating Committee and other peer
groups as needed. It should take into account when deciding what warrants investigation the fact that
across the country desperate PWCs are already trying a variety of treatments, some of them expensive and
WISH #2: For the
CDC to hire someone with new
energy, intellectual curiosity and research management skills to oversee the launching of a reinvigorated
CFS research effort. I propose appointing a CFS Research Director who would report directly to
the head of the CDC for the next three years until the program is up and running. This has to be someone
who is able to think outside of the box and has the dedication and interest to tackle governmental bureaucratic
procedures. It could be a faculty member at a major university who takes a leave of absence or a prac-ticing
clinician with research skills. That person would have to be paired with experienced and dedicated CDC
staff in order to be successful at working his/her way through the proper procedures and cutting red tape.
This person would also counter erroneous characterizations of the illness in the press.
WISH #3: For the
CDC and NIH to identify and review
all the proposed hypotheses regarding the cause(s) of CFS. The literature has grown dramatically
over the past few years, and now is the opportune time to step back, put bias aside, and systematically
review all possibilities and the supporting evidence. This should not be limited to peer-reviewed articles.
We need to look at "fugitive literature" as well: information on the Internet, unpublished papers, early
stage research projects and theories previously regarded as junk science. The team of reviewers should
include scientists from the CDC, NIH, the NIH CFS Research Centers, practicing clinicians, specialists
from other relevant medical areas and CFIDS advocates.
WISH #4: To have
a list compiled of active researchers,
clinicians and institutions or other places where CFS research is underway. I would like
to see this include both government and non-government sources. It is crucial to know what is out there
and capitalize on resources that already exist so we do not waste precious funds. We also need to identify
valuable data sets that have been created in epidemiological studies.
WISH #5: For the
CDC to develop the ability to
respond quickly to new issues in CFS research. I would like to see additional staff hired, grant
notices written and widely publicized and flexible task order contracts developed in advance so that the
CDC can act in a timely fashion.
It is easy to become discouraged
by past events. Whether
trust is re-established between the CFS community and the CDC is going to depend on how effectively the
agency makes up for the decades of progress lost and the lives that were unnecessarily ruined. It
is too late to leave my wish list for Santa; so I'm sending it to CDC Director Koplan.
Terry Hedrick holds
a MA in clinical psychology and
a PhD in social psychology. Throughout a 20-year career, she conducted, directed and taught program evaluation
and applied research in graduate university programs, private research firms, federal evaluation offices
and a Congressional agency. Her last position was as Assistant Comptroller General for Program Evaluation
at the U.S. General Accounting Office.