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.
The CFIDS Association of America
