December 8, 2003

Position Statement Concerning the Name Change Proposal

Background: The term "Chronic Fatigue Syndrome" became widespread following the publication of the first CDC diagnostic criteria in 1988, revised in 1994. Despite the advances gained by having a term recognized by the Centers for Disease Control and the development and subsequent research stemming from specific diagnostic criteria, there has been widespread dissatisfaction with the name of this illness.

In 2001 the Department of Heath and Human Services Chronic Fatigue Syndrome Coordinating Committee (CFSCC) established a workgroup to study the many issues involved in changing the name ‘Chronic Fatigue Syndrome’ to a more suitable name. The CFSCC was dissolved prior to submitting its recommendations, but written recommendations of this workgroup were presented to the current CFSAC at the meeting of September 29, 2003. It was decided at that time that the current committee would review this issue for decision at the December 2003 meeting.

The Name Change Workgroup of the CFSCC noted that the vast majority of patients and physicians believe that the current name focuses too narrowly on the poorly defined symptom of fatigue, and because of this, has promoted misunderstanding of the illness. They further noted that the name ‘CFS’ contributes to the disrespectful view of persons affected with the illness by the general public and medical community. They reviewed research showing that the adverse perception of the illness is, in part, due to the name of the illness. They recommended a new umbrella term, "Neuroendocrineimmune Dysfunction Syndrome" along with suggestions for sub grouping the illness.

The current CFSAC has studied the issue of name change and has agreed on the following points:

1) In retrospect, the name ‘Chronic Fatigue Syndrome’, chosen for this illness in 1988 was an unfortunate choice.

2) It is inappropriate that the illness be associated solely with the symptom of fatigue, and the misunderstanding from this point has encouraged inappropriate trivializing of the illness.

3) The patient community has been injured by disrespect, apathy, and ignorance by the medical community, and this, in part, has been due to the inappropriate name of the illness.

4) The present committee members feel that a more suitable name for this illness should replace the term ‘chronic fatigue syndrome’ and we are optimistic that a better name will replace ‘CFS’.

5) However, the present committee feels that a change to a more appropriate name should not occur at the present time for the following reasons:

a) There is growing acceptance by the medical community of CFS, and this process would be hampered by a name change at the present time.

b) The term "Neuroendocrineimmune Dysfunction Syndrome" is nearly as vague as CFS, and a change at this time will not prevent the future change to a term or terms that more accurately represent the specific pathophysiology or pathophysiologies of the illness.

c) The current research criteria, flawed though they may be, are currently used in nearly every country and are responsible for a large body of knowledge gathered in an orderly manner. To change the name at this time would require new diagnostic criteria and disrupt this process prematurely.

d) Current funding through the NIH and CDC would be disrupted at a time when both organizations have announced a commitment to the scientific study of the illness.

e) Renaming the illness at the present time would require renaming education materials, professional organizations, committees, journals, funding announcements and websites. It would also make data retrieval in the medical literature more difficult.

f) The efforts involved in effecting a name change at the present time would detract from more pressing needs, such as the accurate identification and characterization of illness subtypes, and the identification and subsequent management of pressing patient population needs.

g) The ‘trivialization’ and disrespect for persons suffering from chronic fatigue syndrome will not be corrected solely by change the name of the illness; there is critical need for education of medical care professionals and increasing research.

In summary, the CFSAC agrees that the name "Chronic Fatigue Syndrome" is a poor name. However, we feel that a change of this name to another name should occur only when there is a better understanding of the pathophysiololgy of the illness. 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 aggressively addressed.

Respectfully submitted,
David S. Bell MD, Chairman
(Approved by a vote of members of the DHHS CFS Advisory Committee)