Name Change: Selection Criteria
Criteria By Which a New Name for CFS
Should be Judged
K. Kimberly Kenney for consideration by DHHS CFS Coordinating Committee, April 22, 1999
These criteria, along with a plan for
forming a Department of Health and Human Services Work Group to rename CFS, was
endorsed by the CFSCC and forwarded to DHHS Secretary Donna Shalala for action.
Prior to being presented to the CFSCC, it
was reviewed by 158 persons with CFIDS (PWCs), researchers, clinicians and other
interested parties and revised, based upon their comments.
A new name for Chronic Fatigue Syndrome
presently defined by the 1994 CDC criteria) must satisfy the following criteria:
1. It must have the support of prominent
members of the medical and research communities to encourage acceptance by the
medical and political communities as well as to promote its usage in the
medical and lay literature.
2. If the name is a scientific or
descriptive term, it must:
a. Be evidence-based and supported by
conventional, reproducible scientific methods.
b. Eliminate (or at
least substantially diminish focus on) the word "fatigue" because fatigue as
a symptom is vague, poorly defined, and not quantifiable or reproducible and
because of the trivializing nature of the word;
c. Provide a
description of prominent symptoms, clinical features and/or affected body
systems which are acceptable to the scientific, medical and patient
d. Imply causative factors only if "level 1" evidence
is available to imply causation1;
e. Not focus on any single
f. Not portray a medical condition so broad (meaningless)
as to define the illness out of existence (e.g., chronic multiple symptom
g. Not stigmatize or convey a pejorative impression
of those diagnosed with the illness.
3. If named after one or more
individual(s), each individual must2:
a. Have made a significantly
favorable and lasting contribution to the understanding of or awareness
b. Have an honorable and distinguished public reputation;
c. Give express permission for use of the name (in the event
that the individual is deceased, his/her heir(s) must be formally consulted
and must subsequently express no objections to use of the name).
4. It must not cause confusion or
a. sounding like other
previously named conditions that are fairly well-known (e.g., Gilliam
Syndrome, which might well be confused with Guillian Barre Syndrome);
b. forming an acronym that is similar to that of another medical
condition (e.g., Chronic Immune Dysregulation Syndrome or "CIDS" might well
be confused with SIDS -- Sudden Infant Death Syndrome); or
forming an acronym that spells a problematic word (e.g., the proposed
"multi-sensory sensitivity" or "MUSES").
5. It must be possible to use the
name internationally and good faith attempts must be made to build
international consensus about adopting the new name.3
1. "Level 1" criteria are defined
as: consistent evidence obtained from two or more independent, randomized and
controlled studies or from two or more independent, population-based
epidemiological studies. Studies included are characterized by sufficient
statistical power, rigorous methodologies and inclusion of representative
2. Names that imply a specific geographic location
are considered unacceptable.
3. Differences in language and cultural
meaning of words (that affect the name and possible acronyms) might pose
irreconcilable barriers to the uniform international adoption of any new name.
Observations based on responses to the
draft criteria by
an international review group of 156 physicians, researchers, CFS patients and
I. Most, but not all, of the
reviewers supported eliminating the word fatigue from the name. Numerous
patient advocates and doctors noted the challenge of simultaneously meeting
criteria 2b. and 2c., given that prolonged fatigue is the only symptom that
100% of those meeting the 1994 case definition are certain to have, by virtue
of that definition. However, based on comments received during this review
process and other name change-related surveys, it is unlikely that the
majority of the patient community would support or be satisfied with any name
that contains the word fatigue.
II. Many of those who reviewed
the draft criteria observed that the definition of the illness should change
with the name. Similarly, other reviewers noted that new research and/or
clinical case definitions would provide an excellent basis for a change in the
name. The considerable time required to convene a panel and then write and
refine a new definition made the option of pairing the name change with a new
definition unacceptable to those who advocate for immediate action on the name
III. Defining the illness more
narrowly or broadly than the current case definition raises many issues that
impact on renaming CFS. Defining the illness more broadly to represent a host
of similar disorders (such as fibromyalgia, multiple chemical sensitivities,
irritable bowel syndrome, etc.) could lead to different names than if CFS were
defined more narrowly (e.g., by requiring acute onset following a known viral
infection or by requiring positive tilt test as evidence of dysautonomia).
Several reviewers noted a preference for creating a unifying term for CFS and
related disorders, then defining (and naming) more homogeneous sub-groups
within the larger framework. The impact of this process on the speed with
which a change could be accomplished is noted above.
IV. Numerous reviewers expressed
a preference for an eponym (a name primarily meeting criterion 3) over a
premature decision on a medical term that might prove to be inaccurate with
time and more research. Others, however, discouraged use of an eponym, citing
the trend away from naming illnesses after people and/or the lack of an
obvious namesake, like the discoverer of the cause of the illness.
V. Many reviewers noted that a
change in the name of the illness must be accompanied by a widely disseminated
message from the Public Health Service announcing the name and simultaneously
conveying the seriousness and complexity of the illness. Many of these
individuals further recommended implementation of a sustained education
campaign to increase use of the new name and general awareness of the illness.
Many felt strongly that without a commitment to some type of educational
campaign, a change of name alone would do nothing to build understanding about
CFS or to diminish the stigma experienced by patients.
VI. Replacing CFS with M.E.
(Myalgic Encephalopathy or Myalgic Encephalomyelitis) was the specific name
change most often discussed; those in favor referred to its 40-year presence
in the medical literature and its use and relatively favorable acceptance in
countries outside the U.S. Of note is that of those writing in favor of M.E.,
only two were physicians or researchers. There were a substantial number of
comments against the use of either form of M.E. based on the present lack of
sufficient scientific evidence needed to gain support from the broader medical
community and confusion with respect to which case definition might apply;
nearly all were made by persons in the U.S. Comments about the possible misuse
of the acronym "M.E." (me) were split, with some expressing concern about
possible exploitation by the media and others dismissing this possibility as
not serious enough to discard a term with such a strong tradition. Still
others outside the U.S. conveyed concern that substitution of the term M.E.
for CFS would create greater confusion between M.E. (as defined by the Ramsay
and/or London criteria) and CFS (as broadly defined by the Oxford criteria,
still in use in the U.K.) in the medical literature and lay media.
VII. Although the intent of this
list of criteria is to provide more objective guidelines for judging
alternative names, some of the criteria remain inherently subjective. For
instance, in trying to identify possible candidates for whom the illness might
be named, evaluating whether an individual enjoys an "honorable and
distinguished reputation" is a relatively subjective matter.
VIII. A study under way at DePaul
University is attempting to objectively measure the "stigma" associated with
different labels for CFS. It is possible that various alternate names could be
"field tested" to ensure that the new label itself would not carry a stigma.
April 19, 1999
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