Name Change Proposal ~ Part I
DGSABA
Owfw will support ~ New Name for CFS ~
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Excerpt from Co-Cure. October 24, 2001
Name Change Proposal from the Name Change Workgroup
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@o... <mailto:cfs@o...> <<mailto:cfs@o...>> andput "Name Change" in
the
subject line, or2) 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 responsefor
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 disagreeFeel free to give us your reasons for this choice:
________________________________________________________
________________________________________________________
Please send to either:
1) to cfs@o... <mailto:cfs@o...> <<mailto:cfs@o...>> andput "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
Part II to Follow ~ DS
Soft hugs,
Diana ~ Owfw
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DGSABA
B. Draft Recommendations of the Name Change WorkgroupI. 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.
Part III to Follow ~
DGSABA
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.
Part IV to Follow ~
DGSABA
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
Part V to Follow ~
DGSABA
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 immunologicsystems.
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.
Part VI to Follow ~
DGSABA
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@n... <mailto:deand@n...>
<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@n...
Shannon Building, Room 257
National Institutes of Health
1 Center Drive, MSC 0170
Bethesda, MD 20892-0170
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Entire Excerpt ~
If all VI ~ Six Parts do not show up here at
Alt med Fibromyalgia the entire message can be viewed at Co -Cure.
I broke it up into six posts to be able to post it in its entirety here on our
newsgroup for those who do not subscribe to the Co-Cure List.
Deirdre
<< I broke it up into six posts to be able to post it in its entirety
here on our
newsgroup for those who do not subscribe to the Co-Cure List. >>
Thank you, Diana! Much appreciated.
Deirdre ;-)
--
B-12 methylmalonuric acid (MMA) test links: References:
http://www.b12.com/page1i.htm
Doctors' letters and e-mail addy for enquiries:
http://www.b12.com/page1j.htm
.
DGSABA
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0110d&L=co-cure&F=&S=&P=1367
Hope it shows the link if not copy and paste the entire address into your
brownser to read it.
Owfw asks that everyone send an email off asap showing your patient support for
this NEW NAME for CFS ~ CNDS
It includes ME as one of the subtitiles.
All the email address are within the Post from Donna J. Dean Ph. D. Don't
forget to copy and paste the questionnaire : )
Thanks !!
Deirdre
>
> Deirdre this link will show it better : )
>
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0110d&L=co-cure&F=&S=&P=1367
>
> Hope it shows the link if not copy and paste the entire address into your
> brownser to read it.
Should'nt wrap now.
Thanks, Diana. I'll give it a closer read.