Submitted by 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.
Notes on the Criteria
Observations on the Criteria
A new name for Chronic Fatigue Syndrome (as presently defined by the 1994 CDC criteria) must satisfy the following criteria:
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.
If the name is a scientific or descriptive term, it must:
Be evidence-based and supported by conventional, reproducible scientific methods.
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;
Provide a description of prominent symptoms, clinical features and/or affected body systems which are acceptable to the scientific, medical and patient communities;
Imply causative factors only if “level 1” evidence is available to imply causation1;
Not focus on any single symptom;
Not portray a medical condition so broad (meaningless) as to define the illness out of existence (e.g., chronic multiple symptom syndrome); and
Not stigmatize or convey a pejorative impression of those diagnosed with the illness.
If named after one or more individual(s), each individual must2:
Have made a significantly favorable and lasting contribution to the understanding of or awareness about CFS;
Have an honorable and distinguished public reputation; and
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).
It must not cause confusion or difficulty by:
sounding like other previously named conditions that are fairly well-known (e.g., Gilliam Syndrome, which might well be confused with Guillian Barre Syndrome);
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”).
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
“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 patient samples.
Names that imply a specific geographic location are considered unacceptable.
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 advocates:
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.
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 change.
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.
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.
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.
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.
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.
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.
K. Kimberly Kenney
April 19, 1999