#58 Change the Name / M.E. Publications Update

[CFS-NEWS Electronic Newsletter]

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Chronic Fatigue Syndrome Electronic Newsletter

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No. 58 May 31, 1996 Washington DC
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CHANGING THE NAME "CHRONIC FATIGUE SYNDROME" /
M.E. PUBLICATIONS UPDATE

CONTENTS

>>>1. Changing the name "chronic fatigue syndrome"
>>>2. M.E. publications update

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>>>1. Changing the name "chronic fatigue syndrome"

[This is a special message from the editor and publisher of the
CFS-NEWS Electronic Newsletter, Roger Burns.]

The name "chronic fatigue syndrome" is perceived by many patients as
being an onerous burden, since the word 'fatigue' tends to trivialize
the illness, and the full name "chronic fatigue syndrome" has become
associated by many with a purely psychological illness, i.e. "it's
all in your head". On the other hand, most scientists oppose
changing the name before a cause may be found, lest a prematurely
chosen name be shown to be inaccurate. A compromise that respects
both needs might be possible if an eponym were to be chosen (i.e. a
name based on a famous person) and used for purposes of media
articles and other common parlance, while the scientists might retain
their preferred name when they write in scientific literature.

As the publisher of a fairly well known and widely read newsletter
about this illness, I am hereby calling upon the world-wide CFS
community to discuss and explore the possibility of developing a new
name for public usage to replace "chronic fatigue syndrome", and if a
consensus can be reached about a new name, to campaign for the new
name to be used regularly by the general public, the media, etc. As
I make this call, I will ask the patients to respect the needs of the
scientists by not trying to pressure them into changing the name they
may use in scientific discourse and in published medical literature.
At the same time, I ask scientists to refrain from objecting to the
creation of a new name which is intended for public usage only, since
that will not interfere with scientific work.

I am specifically calling for:

- a wide discussion of the naming issue and of possible eponyms, to
take place in many CFS publications around the world (see the
details in the Program for Action below);

- a survey to be circulated by this newsletter and others to gauge
sentiments on the various alternatives that have been discussed;

- and a forum on this topic to be held in San Francisco in October
1996, during the week of the upcoming CFS medical conference.

Principles

It will be important for scientists and patients to sensitize each
other to their different but important needs on this topic. As part
of the first phase of this program of world-wide discussion, I invite
patients to send in brief essays explaining why the name CFS is such
a burden and obstacle in patients' lives and so needs to be changed.
I also ask scientists to make their own case as to why the scientific
name needs to remain unchanged for now.

Many who want the name to be changed will also want to select an
eponym that will not be especially objectionable to scientists, so
that there might be a prospect that some day the scientific community
would of their own accord accept the association of the eponym with
the disease.

Also, there are many people who have strong opinions about what a new
name ought to be. If many people cling to their own strong opinions,
then we might never see a consensus formed. While our debate on this
topic ought to be vigorous during the discussion phase, keep in mind
that if in the end many of us insist on our own different opinions,
we may not be able to form a consensus, and thereby nothing will get
changed, since if we ourselves cannot unite behind one policy, it is
not likely that we will be effective in getting the public and the
news media to adopt a change we might campaign for.

Since there might be no consensus formed on a single eponym, another
option that I will include in the survey that I will later circulate
is for an already established scientific name to be promoted for
wider use in place of CFS. There may be such an already established
name that does not carry the negative connotations which CFS does,
and which might be suitable for promotion and public usage. However,
I will remain true to the principles I've stated above, and the
survey I circulate will not solicit opinions on any NEW scientific
names.

Program for action

- Please write up your own recommendations about possible eponyms,
already-established scientific names, and any other aspect of the
change-the-name issue, and send it to:

Postal mail: Change the Name Forum
c/o Roger Burns, Publisher
CFS-NEWS Electronic Newsletter
2800 Quebec St. NW number 1242
Washington, DC 20008-1240
USA

or e-mail: CFS-...@LIST.NIH.GOV

Send in your comments by August 1st.

- Please encourage your organization to discuss these issues and
send their recommendations to either address above;

- Encourage your organization's newsletter to publish an article
about these Change-the-Name issues and to solicit opinions, and to
also publish the survey that will later be circulated in a future
edition of this CFS-NEWS newsletter (possibly in August).

- In a future CFS-NEWS I will write a detailed article discussing
the recommendations that have been sent to me, and I will publish
a survey based on those recommendations.

- There will be a forum to discuss these issues, to be held in San
Francisco during the same week of the CFS medical conference
scheduled for October of this year.

- The results of the survey will be published here in the CFS-NEWS
newsletter. Please note: I will not be publishing a *simple*
result such as "the following is the one name that was the most
popular: ...". I will be publishing the raw results of how many
people voted for each alternative listed in the survey. We will
all have to look at these results and judge for ourselves whether
we have a consensus and thereby the basis for a campaign to change
the name.

Further information and participation

There is an Internet document that gives further background and
current news updates about this Change-the-Name project. It is
available as a web page at:

http://www.alternatives.com/cfs-news/name.htm

and it can be obtained by e-mail by sending a message that says GET
CFS NAME as e-mail to address LIST...@SJUVM.STJOHNS.EDU . To get
automated updates of the e-mail document, send a message that says
AFD ADD CFS NAME CFS-FILE as e-mail to that same address.

A on-going discussion is taking place on the Internet about the
Change-the-Name issue. To participate, you can go to newsgroup
alt.med.cfs, or you can join the e-mail side of that group by sending
a message in the form of

SUB CFS-L YourFirstName YourLastName

as e-mail to LIST...@LIST.NIH.GOV. In either case, you can
participate in the naming discussion by posting messages whose
Subject: line contain the keyword NAME: .

Biographical note

About the promoter of the Change-the-Name project: Roger Burns has a
graduate degree in economic science, and was a government economist
and a neighborhood civic leader before becoming ill with CFS. Now in
medical retirement due to the disease, he publishes the CFS-NEWS
Electronic Newsletter on the Internet which has a direct circulation
of nearly 3,000 in some 44 countries.

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>>>2. M.E. publications update

[The following citations appeared in the M.E. and CFS Medical Update
as provided by Dr. Ellen Goudsmit of the Melvin Ramsay Society of
Britain. Thanks to David Axford for assistance with this report.]

ME AND CFS MEDICAL UPDATE

Volume 8, number 1 1st March 1996

PHYSIOLOGY, NEUROPHYSIOLOGY AND NEUROENDOCRINOLOGY

Boda, WL., Natelson, BH., Sisto, SA and Tapp, WN. Gait
abnorma-lities in chronic fatigue syndrome. Journal of the
Neurological Sciences, 1995, 156-161.

Majeed, T., De Simone, C., Famularo, G., Marcellini, S and Behan, PO.
Abnormalities of carnitine metabolism in chronic fatigue syndrome.
European Journal of Neurology, 1995, 2, 425-428.

Richardson, J. Disturbance of hypothalamic function and evidence for
persistent enteroviral infection in patients with chronic fatigue
syndrome. Journal of Chronic Fatigue Syndrome, 1995, 1, 2, 59-66.

Sisto, SA., Tapp, W., Drastal, S., Bergen, M., DeMasi, I., Cordero, D
and Natelson, B. Vagal tone is reduced during paced breathing in
patients with the chronic fatigue syndrome. Clinical Autonomic
Research, 1995, 5, 139-143.

PSYCHOLOGY, NEUROPSYCHOLOGY AND PSYCHIATRY

Lutgendorf, S., Klimas, NG., Antoni, M., Brickman, A and Fletcher,
MA. Relationships of cognitive difficulties to immune measures,
depression and illness burden in chronic fatigue syndrome. Journal
of Chronic Fatigue Syndrome, 1995, 1, 2, 23-41.

Ray, C., Jeffries, S and Weir, WRC. Life events and the course of
chronic fatigue syndrome. British Journal of Medical Psychology,
1995, 68, 323-331.

EPIDEMIOLOGY

Bombardier, CH and Buchwald, D. Outcome and prognosis of patients
with chronic fatigue vs chronic fatigue syndrome. Archives of
Internal Medicine, 1995, 155, 19, 2105-2111.

Jason, LA., Taylor, R., Wagner, L., Holden, J., Ferrari, JR.,
Plioplys, AV., Plioplys, S., Lipkin, D and Papernik, M. Estimating
rates of chronic fatigue syndrome from a community-based sample: a
pilot study. American Journal of Community Psychology, 1995, 23, 4,
557-568.

Natelson, BH., Johnson, SK., DeLuca, J., Sisto, S., Ellis, SP., Hill,
N and Bergen, MT. Reducing heterogeneity in chronic fatigue
syndrome: a comparison with depression and multiple sclerosis.
Clinical Infectious Diseases, 1995, 21, 5, 1204-1210.

PAEDIATRICS

Pelcovitz, D., Septimus, A., Friedman, SB., Krilov, LR., Mandel, F
and Kaplan, S. Psychosocial correlates of chronic fatigue syndrome
in adolescent girls. Journal of Developmental and Behavioral
Pediatrics, 1995, 16, 333-338.

TREATMENT

Sharpe, M., Hawton, K., Simkin, S., Surawy, C., Hackmann, A., Klimas,
I., Peto, T., Warell, D and Seagroatt, V. Cognitive behaviour
therapy for the chronic fatigue syndrome: a randomised controlled
trial. British Medical Journal, 1996, 312, 22-26.

REVIEWS

Bell, DS. Chronic fatigue syndrome in children and adolescents: a
review. Focus and Opinion: Pediatrics, 1, 5, 412-420.

Hickie, IB., Lloyd, AR and Wakefield, D. Chronic fatigue syndrome:
current perspectives on evaluation and management. The Medical
Journal of Australia, 1995, 163, 314-318.

Moldovsky, H. Sleep, neuroimmune and neuroendocrine functions in
fibromyalgia and chronic fatigue syndrome. Advances in
Neuro-immunology, 1995, 5, 39-56.

Plioplys, S and Plioplys, AV. Chronic fatigue syndrome (myalgic
encephalopathy). Southern Medical Journal, 1995, 88, 10, 993-1001.

MISCELLANEOUS

Dunstan, RH., Donohoe, M., Taylor, W., Roberts, TK., Murdoch, RN.,
Watkins, JA and McGregor, NR. A preliminary investigation of
chlorinated hydrocarbons and chronic fatigue syndrome. The Medical
Journal of Australia, 1995, 163, 294-297.

Dobbins, JG., Natelson, BH., Brassloff, I., Drastal, S and Sisto, SA.
Physical, behavioral, and psychological risk factors for chronic
fatigue syndrome: a central role for stress? Journal of Chronic
Fatigue Syndrome, 1995, 1, 2, 43-57.

Goldberg, M. High androgen levels in chronic fatigue patients.
Journal of Clinical Endocrinology and Metabolism, 1995, 80, 11,
3390-3391.

Goudsmit, EM and Howes, S. Cognitive functioning with chronic
fa-tigue. British Journal of Psychiatry, 1995, 167, 818.

Gray, JB and Martinovic, AM. Eicosanoids and essential fatty acid
modulation in chronic disease and the chronic fatigue syndrome (1994,
43, p. 31). Medical Hypotheses, 1995, 45, 2, 219.

Loblay, RH. Chronic fatigue syndrome: what's in a name? Medical
Journal of Australia, 1995, 163, 285-286.

Martin WJ and Glass, RT. Acute encephalopathy induced in cats with a
stealth virus isolated from a patient with chronic fatigue syndrome.
Pathobiology, 1995, 63, 115-118.

Murtagh, J. Chronic fatigue syndrome. Australian Family Phy-sician,
1995, 24, 7, 1297.

RESEARCH ON OTHER FATIGUE SYNDROMES

Berman, DS and Wenglin, BD. Complaints attributed to chronic Lyme
disease: depression or fibromyalgia? American Journal of Medicine,
1995, 99, 440.

Mitterer, M., Pescosta, N., Fend, F., Larcher, C., Prang, N.,
Schwarzmann, F., Coser, P and Huemer, HP. Chronic active
Epstein-Barr virus disease in a case of persistent polyclonal B-cell
lymphocytosis. British Journal of Haematology, 1995, 90, 526-531.

Nixon, PGF. An appraisal of Thomas Lewis' effort syndrome.
Quar-terly Journal of Medicine, 1995, 88, 741-747.

Mehta, VK and Blume, GB. A randomized trial of fluoxetine in a
patient with persistent fatigue. Journal of the American Board of
Family Practice, 1995, 8, 3, 230-232.

RESEARCH ON OTHER DISORDERS

Licinio, J., Gold, PW and Wong, M-L. A molecular mechanism for
stress-induced alterations in susceptibility to disease. Lancet,
1995, 346, 104-106.

Steegmans, PHA., Fekkes, D., Hoes, AW., Bak, AAA., van der Does, E
and Grobbee, DE. Low serum cholesterol concentration and serotonin
metabolism in men. British Medical Journal, 1996, 312, 221.

Young, DAB. Florence Nightingale's fever. British Medical Journal,
1995, 311, 1711-1714.

Kennedy, P., Lowe, R., Grey, N and Short, E. Traumatic spinal cord
injury and psychological impact: a cross-sectional analysis of coping
strategies. British Journal of Clinical Psychology, 1995, 34,
627-639.

BOOK REVIEW

Dalakas, MC., Bartfield, H., Kurland, LC. (Eds). The post-polio
syndrome. Advances in the pathogenesis and treatment. Proceedings of
the First International Scientific Conference on the Post Polio
Syndrome, Bethesda, Maryland, USA. April 27-30th, 1994. Annals of
the New York Academy of Sciences, 1995, 273, 1-409. NY: New York
Academy of Sciences, 1995. Hb. 412pp.

This issue was compiled by Drs. EM Goudsmit, Dr. A. Macintyre and Mrs
S. Howes. We gratefully acknowledge help and support from Dr. C.
Shepherd, Dr. E. Dowsett, Dr. B. Natelson, Mrs. Gail Kansky and Mr.
D. Axford.

The ME and CFS Medical Update is published by the Melvin Ramsay
Society for the British Library Medical Information Service and other
data banks. It is funded entirely by donations.

Copyright: EM Goudsmit

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CFS-NEWS (ISSN 1066-8152) is an international newsletter published
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