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Winter 2000

Commentary

My research wish list for year 2000
By Terry Hedrick, PhD

Here 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 physically risky.

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.