21 Aug 2002 "Chitty, Julie" Name Change Workgroup FAQ Since distributing the draft Name Change Proposal and Survey, we have been asked many questions by different constituent groups. Below are several of the most frequently asked questions, and a response to them from the Name Change Workgroup. 1. Is NDS being proposed as the new name for CFS? The term Neuroendocrineimmune Dysfunction Syndrome (NDS) is being recommended as the umbrella term, and this term is a broader category than the term CFS that was defined by the Fukuda et al. (1994) research criteria. In fact, the Fukuda Research Case Definition will be included as a sub-category under NDS, along with Myalgic Encephalomyelitis, the Canadian Clinical Case definition, and Post Viral Fatigue Syndrome. NDS is not the new name for the Fukuda Research Case Definition since it cannot be both the umbrella term and a subgroup at the same time. 2. Will the term CFS be placed as a subgroup in the proposal? The term CFS has been used since 1988 and was also used to name the Fukuda Research Case Definition developed in 1994. Many researchers around the world are currently using the term, CFS, and this case definition. It was adopted by scientists in the US and elsewhere in an effort to identify homogeneous patient populations for research study purposes, so that findings from diverse labs and clinics could be compared. We fully expect that the Fukuda Research Case Definition might be compared with other criteria and subtypes in future research, and keeping it would allow it to be differentiated from other subtypes. It is important to understand that the Fukuda Research Case Definition is a research definition and was not intended to be the definition that would be used for general clinical diagnostic use. In our document, we will be using the term Fukuda Research Case Definition rather than CFS, as it is the criteria that are important for research purposes and not the name that has been associated with these criteria. 3. Why are sub-groups included in this proposal? Unfortunately, uncontrolled patient heterogeneity in empirical research studies is a consequence of ignoring the issue of sub-classification. When unique patient groups are unwittingly combined, any distinctions pertaining to specific subtypes of NDS become blurred. There has been a lack of consistency in such laboratory findings, which may be a function of combining distinctive groups of patients into a large heterogeneous group rather than analyzing them within subtypes. Researchers have begun to determine the validity of an approach that involves subdividing their patients into groups. We hope that this proposal leads investigators to make efforts in future studies to sub-group samples, and thus might help identify more consistent pathophysiological markers and therapeutic interventions of this syndrome. At such time, we believe that our proposed umbrella term (NDS) will accommodate and be compatible with biomedical research-driven subtyping. 4. Why were the subgroups referred to as potential? We have taken the word potential out of the proposal, so that readers will see that it is our intention to specify these subgroups. However, we fully expect other subgroups will be added as research identifies important markers of this syndrome, and biomedical advances may also redefine the subgroups as more information is known. 5. Why is the name change effort not being coordinated with the effort to change the diagnostic criteria for this syndrome? The formal charge of the Name Change Working Group does not extend to developing diagnostic criteria or a new case definition. Parallel, but independent, efforts are occurring by a group assembled by the Centers for Disease Control & Prevention to revise the Fukuda Research Case Definition. There is also a group led by Canadian health officials and advocates to develop diagnostic criteria for a Canadian clinical case definition. There are members of the Name Change Working group on both of these other efforts. It may be many years until diagnostic criteria are developed, validated and widely accepted. We believe that a name change can be and should be accomplished now. 6. Will this proposal only broaden conditions thought to be part of the CFS/ME, and might this open the door wider to psychological interpretation of the condition? We feel that the term NDS will provide a broader umbrella than the current Fukuda Research Case Definition, and in part because there are many exclusionary rules for this research case definition that will not occur for NDS. In the past, individuals who had chronic fatigue were either designated as ICF (Idiopathic Chronic Fatigue) or CFS. We now anticipate that evidence-based research will drive the development of sub-categories, and some labels (e.g., ICF) will appropriately be listed as a sub-category. We do not believe that this proposal will open the door to unfair psychological interpretation of this condition any more than it will encourage any other distorted interpretations of this disease. Rather we believe that the subtypes or sub-categories will aid appreciably in identifying markers of this syndrome and provide a practical working construct for clinicians and biomedical researchers from a wide variety of disciplines. 7. Why not split neuroendocrineimmune into 2 separate terms? "Neuroendocrineimmune" is a long word but there are reasons for keeping it as one term. Neuroendocrine split off by itself wrongly puts undue emphasis on the neuroendocrine axis or system. Such an approach would be too focused, and some health care workers might then assume that this illness is related to a psychiatric condition where other neuroendocrine abnormalities have been documented. Currently, it is not typical for a Endocrinologist to treat patients with this illness, and to provide overt focus on the neuroendocrine axis might drive patients to seek out physicians with this specialty. We also did not want to obscure the fact that autonomic nervous system dysfunction is a symptom of many patients with the illness. Additionally, the medical literature clearly supports that immune dysfunction is also apparent in many individuals with the illness, and the immune system is interactive with the neurologic and neuroendocrine system. The term neuroendocrineimmune provides equal weighting to the neuro, neuroendocrine, and immune compartments of the illness without overemphasizing any one of them and acknowledges that there may be a connection between all of them. 8. Do we need the word "chronic" in the name? We initially felt that health care professionals needed to know that this illness is not acute or subacute. Acute illnesses typically runs their course in a few weeks, and eventually the patients return to wellness. The term chronic emphasizes a longer term nature of this illness. However, because of patient input on this issue, we have decided to delete the word chronic from the term since there are many chronic illnesses which do not have chronic as part of their name. 9. Why do we need the word "syndrome" in the name? The word syndrome points out the fact that this illness is a collection of signs and symptoms that in their totality define the illness. By appropriately using the word syndrome, there is a better prospect of having the term accepted by the medical community. 10. Why do we need the word "dysfunction" in the name? We used the term dysfunction because in our review of the literature we found many studies pointing to body systems that are dysfunctional. Therefore the word provides both meaning and legitimacy to the term. Dysfunction is a medical term and it does NOT necessarily mean psychiatric origin as there are many metabolic/physiological dysfunctions that have have biological underpinnings. 11. What will changing the name mean for legal-medical issues such as Social Security benefits and medical insurance? At the January 2000 meeting of the DHHS CFS Coordinating Committee (CFSCC), a motion was approved to hold a special session in conjunction with the next meeting of the CFSCC (or its successor advisory committee) to address the impact of a name change on issues related to medical reimbursement, disability benefits, managed care, etc. It is imperative that experts in these fields be involved in developing an implementation plan for a name change to ensure that a change to any new name does not impede patients' access to health care systems and disability benefits. 12. How will health care providers be educated about the new name? Again, involving medical educators and thought-leaders from the medical community in developing an implementation plan for a new name is crucial to the effort to widely promote use of the new term. If the name change is approved by the Secretary for Health, use of the new term by federal agencies will follow. Use of the new term in federally sponsored publications and education efforts about CFS should be required as a condition of support. Even so, widespread acceptance and understanding of the new term will only be accomplished through a massive, multi-year education campaign.