#64 Change the Name survey / Comments on Royal Colleges report
CFS-NEWS Electronic Newsletter
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Chronic Fatigue Syndrome Electronic Newsletter
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No. 64 February 20, 1997 Washington DC
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CHANGE THE NAME SURVEY /
COMMENTS ON BRITISH ROYAL COLLEGES REPORT
CONTENTS
>>>1. Change the Name Survey
>>>2. Controversies about the Royal Colleges report
>>>3. Network news
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>>>1. Change the Name Survey
[Those who have access to the web may prefer to read this material at
http://www.cais.net/cfs-news/name.htm . Please be sure to read the
article immediately below before filling out the survey which follows
it.]
A. Article and Plan for Action on the Changing the Name,
by Roger Burns
[Roger Burns is the publisher of the CFS-NEWS Electronic
Newsletter, and is on medical retirement from the U.S. Bureau of
Labor Statistics where he was an economist responsible for
confidential survey data.]
Many patients feel that one of the greatest burdens of having chronic
fatigue syndrome is the name of the illness. The word "fatigue"
(which many patients refer to as the "F" word) indicates everyday
tiredness. It reinforces negative perceptions that remain with the
public and most medical doctors, despite a decade of steady, gradual
research advances.
Testimony at San Francisco
I held a forum on changing the name on October 15 at the San
Francisco CFS conference. Many patient leaders and medical
professionals met there to discuss this issue. From those gathered,
it was quickly clear that most favored a name change. Well known
advocates including Tom Hennessy, Kim Kenney, Bonnie Gorman, RN, Gail
Dahlen, RN, Katrina Berne, PhD, Gail Kansky, Sara Bass, Lea Rhodes,
Jon Sterling and Gretchen Mason provided numerous accounts of the
biasing impact the name has had on patients.
How Can We Change the Name?
The name chronic fatigue syndrome was officially chosen by scientists
in 1988; at that time many of us had a sense that a research
breakthrough -- and a better name -- was just around the corner.
Nine years later the name is still with us. Most scientists oppose
changing the name until the disease process is better understood or
the cause is found. However, I believe there are ways to make a
change now.
The CFS community could promote one of the less controversial
alternative names already in use, such as a variant of "M.E."
Another possibility is to promote an eponym (i.e., naming the illness
after a well-known person) to be used along with the scientific name
in medical literature. There are more than 100 diseases which have
both a scientific name and an eponym. For example, amyotrophic
lateral sclerosis (ALS) is also widely known as Lou Gehrig's disease
and paralysis agitans is better known as Parkinson's disease.
Either an already-accepted name or an eponym could meet the urgent
needs of the patient community about this issue, and should not
prompt major objections from scientists which could impede any
patient-led campaign to change the name. We should also urge
scientists to consider officially adopting an eponym themselves or to
pick a new scientific name which more appropriately describes the
symptoms than CFS does. Either of these options would be a real
change for the patients, yet would avoid prematurely identifying a
pathology which scientists would clearly object to.
To this end, I am issuing a survey (see below) to solicit views on
alternate scientific names and eponyms. Survey results will be
published in a future CFS-NEWS and will be presented to Secretary for
Health Dr. Donna Shalala, whose office is looking into the issue of
changing the name.
If a pattern indicating consensus for a particular name emerges from
the survey results, then various CFIDS organizations might join
together to promote it as the new name to be used by the public and
the media. If two or more names have strong support then a second
survey may be needed. Lack of consensus will give us important
information as well.
Government Action?
Secretary for Health Shalala must report to Congress before March 30
regarding the name change to comply with language included with the
1997 Appropriations Bill. Secretary Shalala oversees the Centers for
Disease Control and Prevention (CDC) and the National Institutes of
Health (NIH), both of which will have influence over any name change
promoted by Secretary Shalala. The new CFS Coordinating Committee,
under Secretary Shalala's jurisdiction, is expected to take up the
name issue as one of its first orders of business.
************* A Plan of Action for Changing the Name **************
* *
* First, read this article and respond to the survey. Then write *
* to Secretary Shalala and urge her to commit to changing the *
* name. Make a strong case about how the name of this illness *
* affects your life and that of others, and how it holds back *
* medical research. Send your letter to: *
* *
* Hon. Donna Shalala *
* Secretary of Health and Human Services *
* 200 Independence Ave. SW *
* Washington, DC 20201 *
* *
* E-mail: HHS...@OS.DHHS.GOV *
* *
* (Please send your survey responses and specific suggestions for *
* alternative names only to the address at the bottom of the *
* survey.) *
* *
* Similarly, please write to the American Association for Chronic *
* Fatigue Syndrome (AACFS), a professional organization of *
* doctors and researchers which sponsors bi-annual CFS medical *
* conferences. Their support in changing the name would be *
* influential. Write to them at: *
* *
* Dr. Dedra Buchwald, President *
* AACFS *
* 7 Van Buren Street *
* Albany NY 12206 *
* *
* E-mail: LBA...@AOL.COM *
* *
*******************************************************************
Alternative Names
At forums like the one held last October, there is strong consensus
about the need to change the name, but just as often there is
disagreement over what to change it to. Without greater unity in the
promotion of an alternative name, we cannot launch an effective
campaign to get the name changed and widely accepted. We would then
have to continue to live with "chronic fatigue syndrome."
The survey on below allows respondents to indicate varying levels of
agreement for each name listed, as well as the option to include
other alternatives. The survey was developed from suggestions that
were solicited from readers of CFS-NEWS and other publications. The
names listed all have strengths and weaknesses, some of which I've
outlined below.
* Myalgic encephalomyelitis. Used in scientific literature, although
not as broadly as CFS, it has been widely accepted in most of the
world outside of the U.S. This term is listed in the World Health
Organization's classification of diseases. Many scientists consider
this name inaccurate and discourage its broader use, since the
"-itis" portion refers to inflammation of the brain, which is not
sufficiently supported by medical evidence. The recent British Royal
Colleges' Report recommends against using this name and recommends
using CFS instead, however that report has been criticized by the
journal Lancet as being biased towards psychiatric views. (See a
review of this report in article number 2 below.)
* Myalgic encephalopathy. This new alternative has been discussed by
several scientists recently. It allows use of the familiar term
"M.E." yet omits "-itis" to which many scientists object (see above).
This name has not been in use by scientists or patients. In
addition, while "encephalopathy" means "brain disease" to American
doctors, it has a much more serious connotation to British
physicians, and there could be objections based on lack of scientific
evidence for this term as well.
* CFIDS, i.e., Chronic Fatigue and Immune Dysfunction Syndrome. This
name appears increasingly in U.S. government documents, and is
becoming more well known with the increasing influence of The CFIDS
Association of America. As a longer variant of CFS, it tends to
dilute the "F" word (fatigue). However, many patients feel that one
of the main purposes of a change-the-name campaign is to eliminate
the "F" word altogether. Also, many scientists claim that there is
insufficient evidence to prove that immune dysfunction is a prominent
characteristics of this disease. In addition, the name CFIDS is not
used at all outside of the U.S., and it is only rarely used in the
medical literature.
* Ramsay's Syndrome, or Disease. (The question of whether to refer
to these eponym choices as a disease or as a syndrome is discussed in
the survey itself.) The late Dr. Melvin Ramsay of Britain was the
first scientist to formally define and name myalgic encephalomyelitis
in an article that he published in the journal Lancet in 1956. Many
assert that Dr. Ramsay is clearly associated with the study of this
specific disease, while others say that is unclear that the outbreaks
Ramsay studied were CFS. While we might expect that naming the
illness after a British scientist might not be well received by
American patients unfamiliar with him, many American patients who
have read about his work view him quite favorably. Another note: a
disease called Ramsay-Hunt refers to a herpesvirus infection of the
facial nerve, but there are researchers whose names are associated
with more than one disease.
* Osler's. Sir William Osler was a prominent turn-of-the-century
physician who helped structure the methods of modern medicine. He
advocated that physicians listen intently to the patient when taking
a medical history (a recommendation appreciated by many current-day
CFIDS patients). William Osler's name has great stature in the
history of modern medicine. In addition, it was used in the title of
Hillary Johnson's book Osler's Web, a critical chronology of American
medical research of CFS published in 1996. Many patients used this
book as a rallying point for deep concerns about the
perceived misdeeds of government scientists responsible for
investigating CFIDS, while many researchers consider Osler's Web to
be an unwarranted assault upon their colleagues. For these reasons
there may be opposition to choosing a name for the disease that is
associated with more controversy. Further notes: Osler himself was
not associated with any research on CFS/M.E. Two other illnesses
bear Osler's name, specifically Rendu-Osler-Weber Disease (hereditary
hemorrhagic telangiectasia) and Osler-Vaquez Disease (erythremia).
Both have sometimes been known by the name Osler's Disease.
* Peterson-Cheney, or Cheney-Peterson. Drs. Dan Peterson and Paul
Cheney treated patients during the 1984 CFS outbreak at Incline
Village, Nevada and have since conducted and promoted much research
into the illness. They are considered controversial by some of their
scientific colleagues, and may not be well known outside of the U.S.
When asked their opinions on this alternative, Dr. Cheney cautioned
that an eponym based on a living person would not gain broad
acceptance, but did not oppose having his name in the survey. He
recommended using CFIDS or myalgic encephalopathy. Dr. Peterson
has made no comment. (Dr. David Bell's name was also suggested by
many, but he asked that it not be considered.)
* Nightingale's. (A general note: no historical figure has been
definitively diagnosed with CFS/M.E. Purists may object to choosing
any person in history, who may not have actually had the disease, as
the basis for an eponym.) Florence Nightingale is a widely respected
and world-renowned figure who founded the International Red Cross and
the first formal school for nursing. For decades she had an
undiagnosed, severely debilitating illness, whose symptoms were
similar to CFS. Despite Nightingale's considerable talents and her
personal character, many doubted that she had a physical illness. Her
illness was quite controversial. A 1996 paper by D.A.B. Young which
appeared in the British Medical Journal indicates that Nightingale's
illness was likely to have been chronic brucellosis (a disease
with symptoms similar but not identical to CFS). Patient groups have
promoted Nightingale's birthday, May 12, as International CFIDS/M.E.
Awareness Day, and Nightingale is a familiar symbol to those who know
this disease. However, some argue that women's diseases often have
difficulty in getting recognized and accepted. Choosing
Nightingale's name as an eponym might add to, rather than offer
relief from, current name-associated problems.
* Darwin's. Charles Darwin, founder of the theory of biological
evolution, is another world-renowned figure who had an undiagnosed,
debilitating illness. However, less is known about Darwin's disease
than Nightingale's, so there may be stronger objections due to the
lack of certainty about the identity of his illness. Also, many
patient organizations have already invested much effort in promoting
May 12 as Awareness Day, which is associated with Florence
Nightingale, and so switching to a different symbolic patient might
cause confusion.
****** Comments from Panelists at the Change the Name Forum ******
* *
* o Bonnie Gorman, RN, Massachusetts CFIDS Association: Multiple *
* sclerosis was not addressed by medical clinicians or *
* researchers, until its name was changed from "hysterical *
* paralysis." Her organization's attempts at raising funds *
* for CFIDS medical research are bearing out the same *
* horrendous pattern. "The medical profession is very *
* resistant to taking this illness seriously because of the *
* name. They can't get past the name ... I'm absolutely *
* convinced that if we cannot change the name, we will never *
* be able to move forward." *
* *
* o Gail Dahlen, RN, Medical Professionals with CFIDS: "The name *
* of this illness is an atrocity. It degrades us as patients. *
* It degrades us as human beings ... Everything revolves *
* around this name: research money, credibility, support *
* from family, friends, neighbors, co-workers. It all *
* revolves around this name. And every single word in this *
* name -- chronic, fatigue and syndrome -- has to go." *
* *
* o Gail Kansky, Massachusetts CFIDS Association: (Comments were *
* read on her behalf.) Changing the name might bring some *
* confusion, as some claim, but we have been through several *
* name changes before: the illness had no name until Chronic *
* Epstein-Barr Virus was chosen in 1985 and it was changed to *
* CFS/CFIDS in1988. In each case, it has taken only a year or *
* so to absorb the change. "There is no other illness whose *
* name makes fun of the patient." She strongly recommended *
* choosing the name "myalgic encephalopathy." *
* *
* o Katrina Berne, PhD, psychologist and author: "Patients, and *
* our advocates, have spearheaded a lot of what's happened *
* with this illness. And we will spearhead the movement to *
* have a new name. We will rely on input from clinicians and *
* researchers to identify the new name accurately. Ideally, we *
* would wait until a marker or cause is identified. But the *
* research won't be there, the funding won't be there, the *
* research to find the evidence to change the name won't be *
* there, unless we change the name." *
* *
* o Sara Bass, Connecticut CFIDS Association: The medical *
* profession will only accept a new name if they have chosen *
* it themselves. But their failure to educate the public *
* about this illness has brought us all to the point where *
* the patients must take up this issue. *
* *
* o Tom Hennessy, RESCIND: Anger about the name is as high as *
* it's ever been during the eight years he has been fighting *
* for a name change. He reminded everyone that many disability *
* insurers have excluded CFS from standard coverage. "We are *
* a major liability, and we've now become their target. We *
* need to show government and big business that they are *
* losing very productive people, and big tax revenues." *
* *
******************************************************************
In Conclusion
Patient groups have successfully pressed to change names of other
illnesses. Victims of gay-related immunodeficiency, or GRID,
demanded a change for the name of their disease. It's now called
AIDS. We can succeed in changing chronic fatigue syndrome, too.
Thanks are owed to many who have helped explore the issue of changing
the name, particularly to: Tom Hennessy, Kim Kenney and the staff of
The CFIDS Association of America, Mavis Moore and the staff of the UK
M.E. Association, Dr. Phil Lee, Dr. Charles Shepherd, Dr. Nancy
Klimas, Ellen Goudsmit, PhD, Sharon Kautto, Helen Tucker, Leslie
Boyer and the participants of Internet CFS discussion group.
B. CHANGE THE NAME SURVEY
Please carefully read and consider the article about the name change
before answering these questions. Submit one set of survey responses
per individual. Doctors and scientists may take a particular
interest in questions 7, 8, 9 and 10 below. Encourage friends and
family members to submit their own responses.
Personal information
(Note: All personal data will be kept confidential.)
1) Name: __________________________________________
Address: __________________________________________
__________________________________________
City: ______________________________________________
State/Zip code: _____________________________________
Country: __________________________________________
Telephone: _________________________________________
2) Are you a medical doctor? Yes or No: _______________
Are you a medical scientist? Yes or No: _______________
If either, then please provide the following:
Institution or clinic: _________________________________
Office telephone number: ____________________________
3) Have you carefully read the article above about changing the name?
(It is very important to do so before filling out this survey.)
Yes or No: _______
Alternative Name
4) Please respond to the following alternatives for names which the
patient community might promote for common usage (that is, for all
uses outside of the scientific literature). Choices were drawn from
alternatives that were solicited in The CFIDS Chronicle and
elsewhere.
Place a number next to each choice below to indicate your preference.
That is, place a "1" next to your preferred choice, a "2" next to
your second choice, etc.
The choices:
______ Chronic fatigue syndrome
______ Myalgic encephalomyelitis
______ Myalgic encephalopathy
______ CFIDS
______ Ramsay's
______ Osler's
______ Peterson-Cheney
______ Cheney-Peterson
______ Nightingale's
______ Darwin's
______ other: _______________________________________
5) If you support the use of an eponym, would it be wiser to promote
it with "syndrome" or "disease" as part of the name? Considerations:
Many patients wish to avoid further problems which result from the
'fuzzy' term "syndrome." However, scientists object to the term
"disease" because CFS fails to meet standard criteria for a disease.
I prefer: Syndrome ______
Disease ______
Scientific Name
6) When scientists consider changing the name as it appears in the
scientific literature, what characteristics should they avoid in the
new name? ("yes" or "no")
______ avoid the word "fatigue"
______ avoid the word "chronic"
______ avoid the word "syndrome"
______ avoid the word "somatic"
______ avoid the word "benign"
______ avoid the term "neurasthenia"
______ avoid any term that tends to psychiatrize or psychologize
the disease
______ other words to avoid (fill in) __________________
Questions for Doctors and Scientists
If you are a doctor or a scientist, please answer the following four
questions.
7) What characteristics for an alternative to the name CFS should
patient groups avoid when they choose another name to promote for
public usage?
__________________________________________________
8) Should scientists pick a new pathology-based name for CFS at this
time?
Yes or No: ___
9) Should scientists pick a new descriptive name for CFS at this time
(i.e., descriptive of the impact of the illness)?
Yes or No: ___
10) Should scientists choose an eponym for CFS at this time
(regardless of whether, or when, the scientific name might be
changed)?
Yes or No: ___
Questions for All
11) What new scientific names would you recommend be considered by
scientists? (Suggestions made by doctors will be reported separately
from those made by others.)
__________________________________________________
12) Please add any additional comments that you may wish to include
about any of the issues covered in this survey.
____________________________________________
13) Would you permit your name and your responses to be quoted in
public? Those who give such permission might have their comments
appear in public reports which describe the results of this survey.
Yes or No: ___
-------------------------------------------------------
Current updates on the results of the survey can be found on the
Internet at web address:
http://www.cais.net/cfs-news/name.htm
An on-line copy of the survey questionnaire, and other information on
this topic, can also be found at that web address. The same
information can be found by creating an e-mail message which says GET
CFS NAME and sending to address LIST...@MAELSTROM.STJOHNS.EDU .
Please send your survey responses by e-mail to CFS-...@LIST.NIH.GOV
or by postal mail to
CHANGE-THE-NAME SURVEY
c/o Roger Burns
2800 Quebec St. NW, Suite 1242
Washington, DC 20008-1240
USA
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>2. Controversies about the Royal Colleges report
Since CFS-NEWS first covered the British Royal Colleges' report on
CFS (October, 1996), criticism has been published by the staff of the
medical journal Lancet and by a new report being released this week
by the CFIDS Association of America.
Britain's ME/CFS Charities Alliance had previously challenged the
Royal Colleges report "bias towards psychiatric models of causation
and treatment for all patients".
The report was strongly supported, however, by the British Medical
Journal in a guest editorial written by Dr. Stephen Straus of NIH.
Straus praised the report as being "arguably, the finest contemporary
position statement in the field". He describes the report's finding
of insufficient evidence for viral causes or documented immunologic
abnormalities, although this jury is still out reagrding possible
neuroendocrine abnormalities. Straus cautions that the report's
recommendation for a bio-psycho-social approach to treatment will be
difficult to implement since most primary care settings are not
equipped with the multi-disciplinary staff needed for such a program.
Straus supported the report's endorsement of the name "chronic
fatigue syndrome" rather than "myalgic encephalomyelitis" or "CFIDS".
The Lancet
In its editorial of Oct. 12, 1996, the Lancet notes that the Royal
Colleges report cites prevalence figures that are far above those
published by the Persistent Virus Disease Research Foundation and by
the ME/CFS Charities Alliance, and that Britain's Department of
Health (which originally commissioned the Royal Colleges' report) has
failed to endorse those high figures. Also, the Royal Colleges'
report finds no evidence of brain abnormalities in CFS patients
despite a clear finding to the contrary, according to the Lancet.
The Royal Colleges' report says the illness should not be referred to
as "myalgic encephalomyelitis" but rather as "chronic fatigue
syndrome". Lancet editorial points out that the British Department
of Health has not adopted the report's recommendation. It also
describes the ME/CFS Charities Alliance claim that the report
committee was top-heavy with psychiatric experts, and it quotes Dr.
Charles Shepherd as saying "the committee was rigged, with dissenting
voices excluded."
The Lancet concludes that the Royal Colleges report was "haphazardly
set-up, biased and inconclusive, and is of little help to patients or
their physicians."
CFIDS Chronicle
The CFIDS Chronicle has this week published a six page critique of
the Royal Colleges report. The critical analysis was written by Dr.
Terry Hedrick, PhD., a psychologist who has chaired many program
evaluation projects in academia and in government and who has
co-authored the textbook "Applied Research Design: A Practical
Guide".
Hedrick discusses in detail three kinds of biases that she sees in
the report:
- it provides an incomplete and selective literature review
- it often speculates beyond the available data and in favor of
psychological factors
- it dismisses those studies which conclude that there may be an
organic basis for CFS, and it does so by holding such studies to a
different standard than others which highlight psychological
factors.
Hedrick states that:
The report's pervasive psychiatric bias will likely fan ongoing
controversies, continue misunderstandings about the illness and
cause harm to CFS sufferers. General practitioners will need to
look elsewhere to obtain a balanced view of the CFS literature.
... Psychologists and psychiatrists definitely have valid
therapeutic and research roles in the treatment and study of CFS.
The challenge is to base these roles on sound research, not
speculation.
Hedrick concludes by noting that many improved research studies are
on the verge of being published, and that those who are concerned
about CFS should demand that *all* areas of CFS research should be
held to rigorous standards.
Resources and references
All of the material mentioned above can be found on the Internet at
the following web page:
http://www.cais.net/cfs-news/rcp.htm
This site includes links to the full text of the Royal Colleges
report, the responses by the ME/CFS Charities Alliance, the BMJ
editorial by Dr. Stephen Straus, the previous report in CFS-NEWS
(October, 1996), the Lancet editorial, and Terry Hedrick's article as
provided by the CFIDS Association of America.
If you already subscribe to the CFIDS Chronicle, you will be
receiving the Winter 1997 edition soon. Terry Hedrick's article
appears on pages 8 through 13. For those who are not subscribed,
sending in $35 now ($45 Canada, $60 overseas) will enable you to
receive the Chronicle for the next year, and if sent in by March 21st
you will receive the Winter 1997 edition which includes Hedrick's
article. This edition can also be purchased separately for $16.
Send a check to:
The CFIDS Association of America
P.O. Box 220398
Charlotte, NC 28222-0398
USA
or phone 1-704-365-2343 Monday through Thursday from 9:30 to 5:30
(Eastern time, USA) or Fridays from 9:30 to 1:00. Hedrick's article
can also be viewed at the CFIDS Association's web site at
http://cfids.org/cfids/royal.html . An e-mail copy can be obtained
by creating a message which says GET CFIDS971 ROYAL which should be
sent by e-mail to LIST...@SJUVM.STJOHNS.EDU . (That address may
change in the near future. If that address fails to respond, then
send to the new address at LIST...@MAELSTROM.STJOHNS.EDU .)
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>3. Network news
The publisher of CFS-NEWS, Roger Burns, has moved his primary web
site for CFS / M.E. information. The new address is:
The Listserv at St. John's University (New York City), which hosts
many email-based CFS information resources, is moving most of its
facilities to a new Internet address:
The CFS-WIRE mailing list has already moved there. The CFS-FILE
database still resides at LIST...@SJUVM.STJOHNS.EDU and it may move
to the new address cited above in the near future.
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CFS-NEWS (ISSN 1066-8152) is an international newsletter published
and edited by Roger Burns in Washington D.C. It is distributed:
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