December 10, 2003
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) that
provides advice to Secretary for Health Tommy Thompson on matters related to CFS
approved a position statement regarding the name change at its December 8, 2003
meeting. Their statement reads, "We feel that a change of this name to another
name should occur only when there is a better understanding of the
pathophysiology of the illness." The CFSACs statement continues, "Current
efforts should be increased in the area of understanding illness subtypes which
in itself may lead to a more appropriate name. Furthermore, the disrespect
experienced by patients from both general public and medical community should be
While the CFIDS Association of America understands the
rationale behind the CFSAC position on this issue, we are compelled to note
that the lack of scientific knowledge concerning the pathophysiology of this
illness is the direct result of inadequate federal support for CFS research.
This is especially inappropriate in light of its prevalence and chronicity and
the fact that the CDC has termed the illness "a major public health concern." We
also note the universal agreement both within and outside the CFIDS community
that the inappropriate name only adds to misconceptions about the illness.
Therefore, we urge the CFSAC to expeditiously propose to the Secretary
of Health a series of specific recommendations that would:
aggressively accelerate the breadth, depth and pace of
educate the medical community about diagnosing and
actively seek and find ways to address the disrespect
experienced by people with CFS.
We applaud the members of the Name Change Workgroup who
dedicated considerable time and talent to this issue. Our President and CEO, Kim
Kenney, participated fully in this effort.
Although the CFSAC has decided that it cannot act on the name
change now, it can greatly serve the CFS community and the public by propelling
research and public policy issues forward so that answers are found that would
satisfy its requirements to recommend a name change. To that end, we strongly
suggest that the CFSAC review its position on the name change as new
developments in CFS research arise.
For the past decade, The CFIDS Association of America has
actively supported efforts leading to a name change. We remain convinced that
a name change is necessary and we will continue to encourage and support the
CFSAC's efforts toward that goal.
Board of Directors
The CFIDS Association of