Today- Deadline for CFS Name Change Proposal

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NAME: Name Change Proposal from the Name Change Workgroup

From Donna J. Dean, Ph.D as posted to the DHHS list CMMFDC-L:

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@...; 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. ____

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

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.

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, 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, R, Fletcher MA. Immunologic abnormalities in

chronic fatigue syndrome. J Clin Microbio 1990;28:1403-1410.

Patarca R, Klimas N, Sandler D, 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, 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) , L.A., , 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., , A., , R.H.T., Hawton, K.E.H., Lambert, H.P., Lane,

R.J.M., Mc, E.M., Mowbray, J.F., Pearson. D.J., Peto, T.E.A., Preedy,

V.R., , A.P., , D.G., ,D.J., Tyrrell, D.A.J., Wessely, S.,

White, P.D., Behan, P.O., Rose, F.C., s, T.J., Wallace, P.G., Warrell,

D.A., & , 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@... <

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@...

Building, Room 257

National Institutes of Health

1 Center Drive, MSC 0170

Bethesda, MD 20892-0170

________________________________________________________________________

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@...; 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

_________________________________________________________________

_________________________________________________________________

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