|
Date:
|
Wed, 24
Oct 2001 10:38:19 -0400 |
|
Reply-To:
|
Co-Cure-Mod@listserv.nodak.edu |
|
Sender:
|
Chronic
Fatigue Syndrome and Fibromyalgia Information Exchange <CO-CURE@LISTSERV.NODAK.EDU> |
|
From:
|
|
|
Subject:
|
NAME: Name Change Proposal from the Name Change Workgroup |
|
Content-Type:
|
text/plain;
charset="iso-8859-1"; format=flowed |
From Donna J. Dean, Ph.D as posted to the DHHS list CMMFDC-L today:
The Name Change Working Group was established by the federal CFS
Coordinating Committee of the Department of Health and Human Services. Its
purpose has been to study name change issues and make recommendations for a new
name for "chronic fatigue syndrome." Towards that goal, the workgroup
has been meeting every two weeks for the past 18 months.
The document below is an interim draft of the workgroup's recommendations.
It is being distributed to update interested parties. Also enclosed is an
informal questionnaire to obtain feedback.
We would appreciate it if you would read the attached Name Change Proposal
and then provide the Name Change Workgroup with your feedback by completing the
questionnaire and returning it to either:
1) to cfs@od.nih.gov; and put "Name
Change" in the subject line, or
2) by mail: Name Change Workgroup, c/o Ms. Janice C. Ramsden, National Institutes of Health, 1 Center Drive, MSC 0159, Building 1, Room 333, Bethesda, MD 20892-0159. ________________________________________________________________________
A. Name Change Questionnaire: PLEASE RESPOND BY January 7, 2002 For the
questions below, please place a "X" mark or fill in your response for
each question. This information will help us obtain a better idea of how our
proposal is perceived by the different groups in the CFS community.
1) Are you a patient, family member of a patient, physician or other health
care professional, researcher or family member or friend of a person with CFS?
______patient
______physician or other health care professional
______researcher
______family member or friend of a person with CFS.
2) Do you feel the name should be changed at this time?
______Yes ______No
Feel free to give us your reasons for this choice:
________________________________________________________
________________________________________________________
3) In what country do you reside?______________________
4) After reading the overall recommendation, how do you feel about it?
____strongly agree ____agree ____neutral ____disagree ____strongly disagree
Additional Comments:
________________________________________________________
________________________________________________________
5) Do you feel that the new term Chronic Neuroendocrineimmune Dysfunction
Syndrome (CNDS) is acceptable?
____strongly agree ____agree ____neutral ____disagree ____strongly disagree
Feel free to give us your reasons for this choice:
________________________________________________________
________________________________________________________
Please send to either:
1) to cfs@od.nih.gov; and put "Name
Change" in the subject line, or
2) by mail: Name Change Workgroup, c/o Ms. Janice C. Ramsden, National
Institutes of Health, 1 Center Drive, MSC 0159, Building 1, Room 333, Bethesda,
MD 20892-0159.
PLEASE RESPOND BY January 7, 2002 _____________________________________________________________________
B. Draft Recommendations of the Name Change Workgroup
I. Introduction
The illness known as chronic fatigue syndrome (CFS), has over the years been
referred to by a variety of names. Because the names for this illness are
widely believed to be inadequate, the CFS Coordinating Committee established
the Name Change Workgroup (NCW). Its charge was to investigate name change
issues and present name change recommendations. The NCW reviewed the published
CFS/ME literature, communicated with researchers, patients, and physicians, and
conducted a survey to further gauge opinions of various stakeholders. Based on
these communications, the NCW has established that there are several different
groups of stakeholders with strong feelings about changing the name. To assess
all the data, the NCW held regular discussions for 13 months and debated the
relative merits of stakeholder concerns, related issues and a variety of
potential names. Based on our discussions, the NCW concluded the following:
1. Many patients and physicians believe that the current name, CFS, too
narrowly focuses upon a single, poorly defined symptom (fatigue) and profoundly
promotes misunderstanding of the illness.
2. Patients feel the name CFS has substantially contributed to the
disparaging manner in which they are perceived and treated by physicians,
family, and the public in general. They also believe that this misunderstanding
has directly and negatively impacted the quality of medical care and support
they are able to obtain. Research by Dr. Leonard Jason validates the adverse
influence of name impact (1).
3. No one name is the obvious choice based on the current state of the
science, nor can a single name fulfill all of the demands of all interested
parties. Therefore, we recommend that the new name serve as an umbrella term.
Under that term, subgroups of patients can be more accurately stratified
according to variations in illness presentation, pathophysiology, results of
diagnostic testing, or other factors.
4. This condition is a serious illness, which like several other significant
and recognized conditions, is best categorized as a syndrome. This syndrome is
a collection of signs and symptoms that when taken as a whole under the
appropriate conditions, defines this illness. Utilization of this approach in
this condition is analogous to the medical community's traditional approach to
other serious, organic syndromes such as Organic Brain Syndrome, Sjogren's
Syndrome, and Multiple Sclerosis.
II. Factors and Formulation of a New Name
Formulation of a new name was guided by at least four important principles.
First, the new name must not imply that the etiology of this syndrome or its
pathogenesis is understood by the biomedical community. Second, the name must
reflect the common symptoms reported by most patients with this condition
without overemphasizing any one system. Third, data which has been published in
peer-reviewed literature must lend support to the new name. Fourth, the name
must include language that reflects the fact that the illness is chronic.
The number of symptoms reported by patients with this syndrome is very large
(2). However, most of the commonly reported symptoms are associated with or may
be indicative of an aberration or dysfunction in one or more of these systems
neurologic, neuroendocrine, and the immunologic systems. The following selected
scientific publications provide a sound basis for a new name that is based on
common patient symptoms associated with these systems. The articles were
selected because they have withstood scientific scrutiny and represent critical
findings. There are other publications available, but the chosen articles are
widely respected, cited, and felt to be representative of the current
understanding of the science. For purposes of this document, the articles have
been categorized into their relevant subsections pertaining to each of the
systems.
A. Neurological
Autonomic nervous system (including orthostatic intolerance)
Several authors have published findings demonstrating that some of the
symptoms seen with this syndrome are associated with autonomic nervous system
dysfunction.
Bou-Holaigah I, Rowe PC, Kan J, Calkins H. The relationship between neurally
mediated hypotension and the chronic fatigue syndrome. JAMA 1995; 274:961-967.
Schondorf R, Freeman R. The importance of orthostatic intolerance in the
chronic fatigue syndrome. 1999 Am J Med Sci 1999;317(2):117-123.
Freeman R, Komaroff A. Does the chronic fatigue syndrome involve the
autonomic nervous system? Am J Med 1997;102:357-364.
Neuroendocrine system The best studied evidence of neuroendocrine
dysfunction involves the hypothalamic-pituitary-adrenal axis.
Demitrak MA, Dale JK, Strauss SE, et al. Evidence for impaired activation of
the hypothalamic-pituitary-adrenal axis in patients with chronic fatigue
syndrome. J Clin Endocrinol Metab 1991;73:1223-1234.
Scott LV, Medbak S, Dinan TG. Blunted adrenocorticotropin and cortisol
responses to cortocotropic-releasing hormone stimulation in chronic fatigue
syndrome. Acta Psychiatr Scand 1998;97:450-457.
Neurocognitive Neurocognitive symptoms are reported with relatively high
frequency in this syndrome. Many meritorious articles have been published, but
at least one seems to be scientifically robust and has not been substantially
challenged by other publications.
DeLuca J, Johnson SK, Ellis SP, Natelson BH. Cognitive functioning is
impaired in patients with chronic fatigue syndrome devoid of psychiatric
disease. J Neurol Neurosurg Psychiatry 1997;62:151-155.
Sleep studies Complaints of sleep disturbances are common in this patient
group. Two independent research teams have published separate studies
supporting the high-frequency of sleep dysregulation. These studies have also
found the sleep dysregulations are not related to psychiatric disorders, and
there are differences between patients diagnosed with this syndrome versus
multiple sclerosis or normal controls.
Buchwald D, Pascualy R, Bombardier C, Kith P. Sleep disorders in patients
with chronic fatigue. Clin Infect Dis 1994;18(suppl. 1):S68-72
Krupp LB, Jandorf L, Coyle PK, Mendelson WB. Sleep disturbance in chronic
fatigue syndrome. J Psychosom Res 1993;37:335-331.
B. The Immunologic System Several articles had been published investigating
the relationship between the immunologic system and chronic fatigue syndrome.
The best validated work and most consistent findings demonstrate decreased
function of natural killer cells and reduced responses of T cells to mitogens
and other specific antigens. The literature also supports evidence of chronic
immune activation in CFS, with increasing emphasis on cytokine dysregulation.
Caligiuri M, Murry C, Buchwald D, et al. Phenotypic and functional
deficiency of natural killer cells in patients with chronic fatigue syndrome. J
Immunol 1987;139:3306-3313.
Hanson, S.J., Gause, W., & Natelson, B. (2001). Detection of immunologically
signficant factors for chronic fatigue syndrome using neural-network
classifiers. Clinical and Diagnostic Laboratory Immunology, 8, 658-662.
Klimas NG, Salvato FR, Morgan R, Fletcher MA. Immunologic abnormalities in
chronic fatigue syndrome. J Clin Microbio 1990;28:1403-1410.
Patarca R, Klimas N, Sandler D, Garcia MV, Fletcher MA. Interindividual
immune status variation patterns in patients with chronic fatigue syndrome:
association with gender and tumor necrosis factor system. J of CFS 2(1):7-41, 1996.
Cannon JG, Angel JB, Abad LW, Vannier E, Mileno MD, Fagioli L, Wolff SM,
Komaroff AL. Interleukin-1 beta, interleukin-1 receptor antagonist, and soluble
interleukin-1 receptor type II secretion in chronic fatigue syndrome. Journal
of Clinical Immunology 17(3):253-61, 1997.
Sudaholnik RJ, Peterson DL, O'Brien K, Cheney PR et al. Biochemical evidence
for a novel low molecular weight 2-5A-dependent Rnase L in chronic fatigue
syndrome. J of Interferon&Cytokine research. 17(7):377-85, 1997
III. A Change in Name The NCW recommends that the name of the syndrome be
changed to chronic neuroendocrineimmune dysfunction syndrome, or CNDS. This is
recommendation is based on 1) the profile and frequency of the commonly
reported symptoms of patients with chronic fatigue syndrome, 2) the chronicity
of the illness and the lack of understanding of its cause(s) and, 3) the
published evidence supporting an aberration or dysfunction of the neurological
and immunologicsystems. The name is in accordance with the principles outlined
in SectionII., above. Changing the name to CNDS does and should not imply that
the etiology or pathophysiology is understood. This name is broad enough to
encompass the most commonly reported symptoms. It is quite reasonable to
conclude that the commonly reported symptoms are associated with or referable
to the neurologic, neuroendocrine, and immunologic systems. Finally the name
explicitly states that the disorder is chronic.
IV. Utilization of CNDS
Advances in biomedical research may ultimately discover the pathophysiology
or cause(s) of CNDS. Until the etiology is known, the name CNDS should be used
for the reasons outlined above. The NCW anticipates that the biomedical
community may find that subgroups or subtypes of CNDS may provide useful nosology
(e.g., CNDS--orthostatic intolerant-predominant). Thus, the use of the name
CNDS in conjunction with subgroup stratification offers flexibility and
adaptability to the inevitable advances based on scientific research. This
approach also promotes more accurate understanding of the illness when compared
with the current name, chronic fatigue syndrome.
In the past there have been many efforts to categorize the syndrome based on
a variety of criteria. Some of the more prominent of these potential subgroups
have been used by scientists and patients, and will be reviewed below. The NCW
does this in an effort to provide a conceptual framework for the name CNDS, and
to better define the status of other names in use vis-à-vis our
recommendations.
1) CFS: CFS is a term first introduced in 1988 in conjunction with the
research case definition (Holmes, et al, 1988). It was maintained in the
revision of the 1994 case definition (Fukuda et al., 1994). The 1994 definition
is being used by researchers internationally and is in the process of being
revised by an international working group. A research case definition is
designed to specifically define a research study population that excludes those
potential study candidates who do not meet the criteria. The research case
definition attempts to identify and categorize a homogeneous group of patients.
However, some of the criteria are so restrictive that some patients who really
do have the syndrome fail to meet the research case definition. Though the term
CFS should refer to the research case definition, it has been used for all
practical purposes to define all individuals with this condition. A research
definition by its very nature should be used for research purposes only, not
for clinical or diagnostic use in general practice. Scientists may continue to
use the research case definition to identify homogenous groups of patients in
order to compare the participants across different settings.
2) ME/CFS: A consensus panel in Canada has recently proposed a clinical case
definition. The proposed criteria differ from and are broader than the Fukuda
criteria for CFS. These criteria were developed specifically to be used in
clinical practice.
3) ME: Myalgic encephalomyelitis (ME) is a condition first mentioned in the
literature in the 1950s by Dr. Melvin Ramsey. It describes a condition similar
to CFS. Myalgic means muscle pain and encephalomyelitis means an acute
inflammation of the brain and spinal cord. Some patient groups have endorsed
the term myalgic encephalopathy, because the term encephalopathy does not
necessarily require an inflammation in the central nervous system. To be
classified with ME according to the London criteria (3), patients are required
to report the occurrence of post-exertional malaise, impairment of memory and
concentration for a period of 6 months or longer, and a fluctuation or cycling
in the severity of symptoms. Other groups subscribe to a description provided
by Ramsey (4, 5).
4) Post-infectious fatigue syndrome (6) follows an infection or is
associated with a current infection. According to the definition, individuals
with this subtype should also fulfill the following additional criteria:
definite evidence of infection at onset or presentation, presence of the
syndrome for at least six months after onset of infection, and corroboration of
the infection by laboratory evidence.
V. Conclusion The NCW urges the CFS Coordinating Committee to adopt the name
CNDS. In conjunction with potential subgroup stratification, we believe the new
name meets the current need for a more accurate label for the illness while
allowing room for sub-grouping as biomedical advances take place.
References
(1) Jason, L.A., Taylor, R.R., Stepanek, Z., & Plioplys, S. (2001). Attitudes regarding chronic fatigue syndrome: The importance of a name. Journal of Health Psychology, 6, 61-71.
(2) Komaroff AL, Buchwald D. Symptoms and signs of chronic fatigue syndrome. Rev Infect Dis1991;13(Suppl 1):S8-11
(3) Dowsett, E. G., Ramsay, A. M., McCartney, R. A., & Bell E. J. (1990). Myalgic Encephalomyelitis - a persistent enteroviral infection?. Postgraduate Medical Journal, 66, 526-530.
(4) Leading article. A new clinical entity? Lancet, May 26, 1956, pp. 789-90.
(5) Ramsay, M. (1988). Myalgic encephalomyelitis and postviral fatigue states: The sage of Royal Free disease. 2nd edition. Gower Medical Publishing, London.
(6) Sharpe, M.C., Archard, L.C., Banatvala, J.E., Borysiewicz, L.K., Clare,
A.W., David, A., Edwards, R.H.T., Hawton, K.E.H., Lambert, H.P., Lane, R.J.M.,
McDonald, E.M., Mowbray, J.F., Pearson. D.J., Peto, T.E.A., Preedy, V.R.,
Smith, A.P., Smith, D.G., Taylor,D.J., Tyrrell, D.A.J., Wessely, S., White,
P.D., Behan, P.O., Rose, F.C., Peters, T.J., Wallace, P.G., Warrell, D.A.,
& Wright, D.J.M. (1991). A report-chronic fatigue syndrome: guidelines for
research. Journal of the Royal Society of Medicine, 84, 118-121.
Donna J. Dean, Ph.D.
Acting Director, National Institute of Biomedical
Imaging and Bioengineering
Building 31, 1B37, MSC 2077
Phone 301-451-6768
Fax
301-480-4515
deand@nibib.nih.gov <
http://www.nibib.nih.gov>
Donna J. Dean, Ph.D.
Acting Director, National Institute of Biomedical
Imaging and Bioengineering
Senior Advisor to Acting Director, NIH
phone:
301/435-6138
fax: 301/435-7268
email: dd49p@nih.gov
Shannon Building, Room 257
National Institutes of Health
1 Center Drive, MSC
0170
Bethesda, MD 20892-0170