Chronic Fatigue Syndrome Electronic Newsletter 1993
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Chronic Fatigue Syndrome Electronic Newsletter
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No. 24 September 30, 1993 Washington DC
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HEM SUSPENDS AMPLIGEN TRIALS
CONTENTS
>>>1. HEM suspends Ampligen trials
>>>2. CDC meeting on CFS definition
>>>3. Medical publications update
>>>4. Research edition of CFIDS Chronicle
>>>5. Future medical conferences
>>>6. New Canadian patient organization
>>>7. Well Spouse Foundation: help for partners of chronically ill
>>>8. Networking news
A. Fibromyalgia discussion created
B. EI/MCS discussion created
C. Project ENABLE BBS changes access telephone
D. CFS-NEWS back issues available via Internet ftp.
>>>9. Speaking events
Note from the editor: I've been behind on reporting some stories,
such as on retroviral research, due to my wavering health. I
appreciate very much the information sent to me by support groups and
others, and I'll ask all to please put me on your mailing lists:
Roger Burns, 2800 Quebec St. NW, #1242, Washington DC 20008, USA.
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>>>1. HEM suspends Ampligen trials
HEM Pharmaceuticals, the developer of the Ampligen(tm) treatment for
CFS, has suspended trials for the drug needed for government approval
of the treatment, and has stopped supplying the drug to patients who
were trial participants and who were receiving the drug on a
compassionate plea basis. The company has stated that this action
was necessary as a part of its current financial restructuring, and
it hopes to begin new trials, as previously announced, in the near
future. Several of the patients who have benefited through use of
the drug are complaining strongly about their supply being cut off.
Ampligen is a mismatched double-stranded RNA nucleotide which has
demonstrated antiviral and immunomodulatory properties. Ampligen is
a synthetic compound which has an advantage over its predecessor,
beta interferon, in that it has been shown to be non-toxic. The drug
has been found effective in helping many (but not all) CFS patients
in alleviating many of their symptoms. Last year HEM had received
permission from both the U.S. Food and Drug Administration (FDA) and
the Canadian Health Protection Branch to proceed with further trials
as part of the government approval process for testing the safety and
effectiveness of the drug.
But so far HEM has not gone forward with any of these latest rounds
of approved trials. This is apparently due to financial
difficulties. HEM is a small privately held company and has long had
financial and other problems. The company recently made preparations
to obtain further funding to finance its work, witnessed by its July
9 application to the U.S. Securities and Exchange Commission (SEC) to
make a public offering of company stock. The SEC approval process
usual takes 30 days, however, and a HEM official told CFS-NEWS last
week that the company has decided to hold back on going public in the
immediate future due to current stock market conditions (see next
paragraph). (Also, the weekly New York Native gives a slightly
different report, as described further below.)
An article by John Friedlich in the summer '93 edition of the
Massachusetts CFIDS "Update" newsletter states that "Politics in
Washington, health-care reform issues and other factors have created
a very cloudy future for the pharmaceutical and biotechnology
industry which has been reflected in a significant decrease in
pharmaceutical and biotechnology stocks. This environment makes it
particularly difficult for small companies like HEM who are trying to
weather the storm and get a single product to market.... HEM is also
going through a major restructuring and has had a significant staff
cutback.... There seems to be some question about continuing access
to Ampligen for people who have already been receiving it under
compassionate care because of the limited resources of the company."
The article goes on to say that "This points out the importance of
writing to the FDA to request that CFIDS [CFS] patients be allowed to
access new treatments as quickly as possible and that it be made
easier for companies to develop new products."
An article by Neenyah Ostrom in the New York Native, issue #545,
Sept. 27, 1993 says that HEM scientists may be presenting a paper on
Ampligen at a medical conference in October. The article also says
that HEM may go ahead with offering public stock in the near future,
and that a source close to the company says that HEM "is working
actively to organize the next round of CFS clinical trials, which is
slated to begin in early 1994."
Regarding the patients recently taken off Ampligen treatments, the
Native article states that "Shock was the response of CFS patients
... when their physicians received letters from HEM announcing the
discontinuation of the studies and, therefore, of [Ampligen]
supplies."
"Nancy Kaiser [a CFS patient and Ampligen user] despairs at the
thought of losing access to Ampligen" the Native article continued.
"'What we are experiencing is medical terrorism,' Kaiser says.
'There is something very wrong with the "system" when people are
receiving and responding well to an experimental drug and have to
live in constant fear of losing it. We (patients in Ampligen
clinical trials) are receiving the Ampligen on a compassionate plea
basis. This means we are the sickest of the sick and have tried all
other available medical treatments with no improvement....
Personally, I feel like a discarded lab rat. What will happen to me
now that I have lost Ampligen? ... There are no laws in place to
protect desperately ill people on experimental drugs! Isn't there a
better way to fund drug development costs to insure continuity of our
treatment?'"
The Native article concludes by quoting Dr. Daniel Peterson's
testimony before the FDA last May 18: "Although [Ampligen] appears
to have great potential in this disease process, it has been bogged
down in a corporate and bureaucratic quagmire, and yet the disability
and the anguish of the patients and treating physicians remains
unaddressed."
[In addition to the sources cited above, information for this article
was also based on the following: a description of Ampligen which
appeared in Kendra Dayger's book "Review of Mainstream CFIDS Research
in the USA: 1990 - June 1992"; and information on HEM's application
to sell public stock, provided by the U.S. Securities and Exchange
Commission. General thanks to Kendra Dayger, Nancy Kaiser, CFS
DysPatch editor Nancy Johnson, and writer Maryka Ford.]
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>>>2. CDC meeting on CFS definition
The U.S. Centers for Disease Control and Prevention (CDC) held a
meeting on Monday Sept. 27 and Tuesday Sept. 28 to receive testimony
on research related to the use of the current CFS case definition to
determine whether this definition can be improved. A wide variety of
CFS researchers and clinicians, and patient leaders, gave testimony.
Many of those who testified requested that the name "chronic fatigue
syndrome" be changed. Also, many requested that the definition of
the illness be broadened so as to allow more patients to be
appropriately diagnosed and/or to allow them to qualify for
disability benefits, or, alternatively, that the CDC should consider
creating both a research definition and a separate clinical
definition in order to meet all needs. Tom Sheridan, the Washington
lobbyist of the CFIDS Association of America, expressed confidence
during his testimony that the kinds of changes sought by most
testifiers would eventually come to pass.
During the Monday testimony period, some CDC staff members suggested
that only the research definition should be dealt with, and that that
definition should be narrowed. However, when the full 14-member CDC
panel met on Tuesday, Sept. 28 to exchange views, there was no
apparent consensus on redefining the illness at that time. There was
little indication about whether the CFS name might be changed. The
CDC panel decided to re-convene after a month or so in order to
consider making decisions about the outstanding issues.
The CFIDS Association will be sending out a Special Bulletin
Chronicle in the near future about the issues regarding this CDC
meeting. (See the end of article #4 below for subscription
information about CFIDS Assoc. publications). CFS-NEWS will continue
to follow this story in future editions. Also, CFS-NEWS has been
told that the NBC television network may show a report on the CDC
meeting this Saturday (Oct. 2) during its usual NBC Nightly News
broadcast, shown in most localities at approximately 6pm or 7pm.
[Information for this article was provided by some of the meeting's
attendees: Dr. Charles Lapp; Elizabeth Huneycutt of the CFIDS Assoc.;
and Tom Hennessey.]
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>>>3. Medical publications update
[The following was contributed by Mr. Steve Clancy. He is the sysop
of the Wellspring BBS which is a service of the Biomedical Library of
the University of California at Irvine.]
This CFS UPDATE is a review of the current medical literature on
Chronic Fatigue Syndrome and is presented as a public service by the
Wellspring RBBS. The presence or absence of any information in this
review should not be taken as advocating one method of treatment over
another, and should not be construed as providing medical advice or
diagnosis.
The references may be taken from various sources and should be used
for educational purposes only. Databases accessed may include the
MEDLINE online database produced by the National Library of Medicine,
as well as other online and print sources. This listing is NOT a
complete review, but represents a selection. Further information may
be obtained from the U.C. Irvine, Biomedical Library, or from your
local medical library.
STEVE CLANCY, M.L.S., WELLSPRING RBBS (714) 856-7996
(714) 846-5087
(714) 725-2700
VOICE (714) 856-7309
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(NOTE: Articles with title in brackets [ ] are not in English.)
1. Komaroff AL. Chronic "post-infectious" fatigue syndrome.
Transactions of the Association of Life Insurance Medical Directors
of America, 1993, 76:82-95. UI:93331639
2. McDonald E; Cope H; David A. Cognitive impairment in patients
with chronic fatigue: a preliminary study. Journal of Neurology,
Neurosurgery and Psychiatry, 1993 Jul, 56(7):812-5. UI:93322706
3. Thomas PK. The chronic fatigue syndrome: what do we know?
[editorial]. Bmj, 1993 Jun 12, 306(6892):1557-8. UI:93320673
4. Sandman CA; Barron JL; Nackoul K; Goldstein J; Fidler F. Memory
deficits associated with chronic fatigue immune dysfunction syndrome.
Biological Psychiatry, 1993 Apr 15-May 1, 33(8-9):618-23. UI:
93320169
5. Shapiro CM; Devins GM; Hussain MR. ABC of sleep disorders.
Sleep problems in patients with medical illness. Bmj, 1993 Jun 5,
306(6891):1532-5. UI:93299281
6. No link: HIV and CFS [news]. Journal of the American
Osteopathic Association, 1993 May, 93(5):542. UI:93300687
7. Chester AC. Chronic fatigue cured by nasal surgery. Maryland
Medical Journal, 1993 Apr, 42(4):365-7. UI:93295245
8. Bertolin JM; Bertolin V. [Chronic fatigue syndrome: biologic and
psychopathologic investigations]. Medicina Clinica, 1993 Jun 5,
101(2):67-75. Language: Spanish. UI:93287694
9. Grafman J; Schwartz V; Dale JK; Scheffers M; Houser C; Straus SE.
Analysis of neuropsychological functioning in patients with chronic
fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry,
1993 Jun, 56(6):684-9. UI:93286612
10. Barnes PR; Taylor DJ; Kemp GJ; Radda GK. Skeletal muscle
bioenergetics in the chronic fatigue syndrome. Journal of Neurology,
Neurosurgery and Psychiatry, 1993 Jun, 56(6):679-83. UI:93286611
11. Krupp LB; Jandorf L; Coyle PK; Mendelson WB. Sleep disturbance
in chronic fatigue syndrome. Journal of Psychosomatic Research, 1993
May, 37(4):325-31. UI:93286991
12. Pepper CM; Krupp LB; Friedberg F; Doscher C; Coyle PK. A
comparison of neuropsychiatric characteristics in chronic fatigue
syndrome, multiple sclerosis, and major depression. Journal of
Neuropsychiatry and Clinical Neurosciences, 1993 Spring, 5(2):200-5.
UI:93283942
13. Macintyre A; Hume MC. The chronic fatigue syndrome [letter].
Postgraduate Medical Journal, 1993 Feb, 69(808):164. UI:93281486
14. Morriss R; Sharpe M; Sharpley AL; Cowen PJ; Hawton K; Morris J.
Abnormalities of sleep in patients with the chronic fatigue syndrome.
Bmj, 1993 May 1, 306(6886):1161-4. UI:93271752
15. Leyton E. Disagreeing on how to treat CFS patients [letter].
Can Fam Physician, 1993 May, 39:1022-4. UI:93271713
16. McSherry J. Chronic fatigue syndrome. A fresh look at an old
problem. Can Fam Physician, 1993 Feb, 39:336-40. UI:93264789
17. Gunn WJ; Connell DB; Randall B. Epidemiology of chronic fatigue
syndrome: the Centers for Disease Control Study. Ciba Foundation
Symposium, 1993, 173:83-93; discussion 93-101. UI:93259027
18. Ware NC. Society, mind and body in chronic fatigue syndrome:
an anthropological view. Ciba Foundation Symposium, 1993, 173:62-73;
discussion 73-82. UI:93259026
19. Shorter E. Chronic fatigue in historical perspective. Ciba
Foundation Symposium, 1993, 173:6-16; discussion 16-22. UI:
93259025
20. Komaroff AL. Clinical presentation of chronic fatigue syndrome.
Ciba Foundation Symposium, 1993, 173:43-54; discussion 54-61. UI:
93259024
21. Mechanic D. Chronic fatigue syndrome and the treatment process.
Ciba Foundation Symposium, 1993, 173:318-27; discussion 327-41. UI:
93259023
22. Sharpe M. Non-pharmacological approaches to treatment. Ciba
Foundation Symposium, 1993, 173:298-308; discussion 308-17. UI:
93259022 Review; Review, Tutorial.
23. McCluskey DR. Pharmacological approaches to the therapy of
chronic fatigue syndrome. Ciba Foundation Symposium, 1993,
173:280-7; discussion 287-97. UI:93259021
24. Moldofsky H. Fibromyalgia, sleep disorder and chronic fatigue
syndrome. Ciba Foundation Symposium, 1993, 173:262-71; discussion
272-9. UI:93259020
25. Abbey SE. Somatization, illness attribution and the
sociocultural psychiatry of chronic fatigue syndrome. Ciba
Foundation Symposium, 1993, 173:238-52; discussion 252-61. UI:
93259019
26. Manu P; Lane TJ; Matthews DA. Chronic fatigue and chronic
fatigue syndrome: clinical epidemiology and aetiological
classification. Ciba Foundation Symposium, 1993, 173:23-31;
discussion 31-42. UI:93259018
27. Wessely S. The neuropsychiatry of chronic fatigue syndrome.
Ciba Foundation Symposium, 1993, 173:212-29; discussion 229-37. UI:
93259017
28. Lloyd AR; Wakefield D; Hickie I. Immunity and the
pathophysiology of chronic fatigue syndrome. Ciba Foundation
Symposium, 1993, 173:176-87; discussion 187-92. UI:93259015
29. Folks TM; Heneine W; Khan A; Woods T; Chapman L; Schonberger L.
Investigation of retroviral involvement in chronic fatigue syndrome.
Ciba Foundation Symposium, 1993, 173:160-6; discussion 166-75. UI:
93259014
30. Behan PO; Behan WM; Gow JW; Cavanagh H; Gillespie S.
Enteroviruses and postviral fatigue syndrome. Ciba Foundation
Symposium, 1993, 173:146-54; discussion 154-9. UI:93259013
31. Straus SE. Studies of herpesvirus infection in chronic fatigue
syndrome. Ciba Foundation Symposium, 1993, 173:132-9; discussion
139-45. UI:93259012
32. Edwards RH; Gibson H; Clague JE; Helliwell T. Muscle
histopathology and physiology in chronic fatigue syndrome. Ciba
Foundation Symposium, 1993, 173:102-17; discussion 117-31. UI:
93259011
33. Chronic Fatigue Syndrome. Symposium proceedings. London, 12-14
May 1992. Ciba Foundation Symposium, 1993, 173:1-357. UI:93259010
34. Valesini G; Conti F; Priori R; Balsano F. Gilbert's syndrome and
chronic fatigue syndrome [letter]. Lancet, 1993 May 1,
341(8853):1162-3. UI:93247403
35. Chambers MJ; Docktor BJ. Fatigue scale lacks adequate
validation [letter]. Psychiatry Research, 1993 Feb, 46(2):207-10.
UI:93248371
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>4. Research edition of CFIDS Chronicle
The Summer 1993 Chronicle was published in mid-September. The issue
is titled "Research Update 1993". This Chronicle contains 15
articles on recent CFS medical research, focusing on summaries and
reports from the May 1993 Los Angeles conference and the October 1992
Albany conference.
Table of Contents
Letter from the Editor
I. Retroviral Research
The Elusive CFIDS Retroviruses, by K. Kimberly Kenney
II. 1991 & 1992 Annual Report
III. Current Research
Leading the Way: the CFIDS Association of America's Research
Grants Program, by David B. Patterson
CFS as a Metabolic Disorder, by Paul Cheney, MD, PhD
The Prevalence of CFS: A Review of Efforts -- Past and present,
by Leonard A. Jason, PhD, et al.
The Overdiagnosis of Lyme Disease, by Bonnie Gorman, RN
CFS: Influence of Histamine, Hormones and Electrolytes,
by Lucy Dechene, PhD, from _Medical_Hypotheses_
Nitroglycerin: A Potential Mediator for Hypoperfusion in CFS,
by Jay A. Goldstein, MD
A Systematic, Four-Stage, Progressive Model for Mapping the CFIDS
Experience, by Patricia A. Fennell, CSW
Crimson Crescents: A Diagnostic Marker for CFS?,
by Burke A. Cunha, MD
Infection of Natural Killer Cells With Human Herpesvirus-6,
by Paolo Lusso, et al., from _Nature_
Linking Human Herpesvirus-6 to Natural Killer Cell Infection,
by Anthony Komaroff, MD
IV. Research Conferences
Open Your Mind to the Possibilities: L.A. Conference Explores the
CFIDS Brain, by Vicky Carpman
The International CFS/CFIDS/ME Research Conference: Building A
Foundation, by Elizabeth Huneycutt
V. Special Pull-Out Section
Iger Neurocognitive Assessment, by Linda Miller Iger, PhD
Assessment of Housing, Support and Service Needs of People With
CFIDS, by Leonard A. Jason, PhD and Renee Taylor
Advocacy Alert, by K. Kimberly Kenney
VI. CFIDS Advocacy
CFIDS Advocacy: Individuals and Organizations Join Forces to Make
a Difference, by K. Kimberly Kenney
Private Research is an Advocacy Investment, by Thomas F. Sheridan
The AACFS Unites CF(ID)S Researchers, by Walter Gunn, PhD
VII. Features
CoQ10, Malic Acid and Magnesium May Improve CFIDS Symptoms,
by Molly E. Holzschlag
Book & Media Reviews:
Hope & Help for CFS
From Paralysis to Fatigue: A History of Psychosomatic Illness
in the Modern Era
CFS: An Alternative View
This issue of the Chronicle can be purchased for $12 (North Carolina
residents add 6%). Regular subscriptions are available at $25 for
USA residents, $35 (U.S. currency) for Canadians, and $45 (U.S.
currency) for overseas/airmail. Make checks payable to CFIDS
Association of America, Inc., PO Box 220398, Charlotte, NC 28222-0398
USA.
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>5. Future medical conferences
At least two major medical conferences on CFS/ME are being planned
for 1994. Dr. Peter Behan is organizing a conference to be held in
May 1994 in Dublin Ireland. Drs. Nancy Klimas and Paul Levine are
organizing a conference to be held in September 1994 in Miami,
Florida USA. Further details about these conferences will be
available next month and will appear in CFS-NEWS.
[Information provided by the office of Dr. Behan, and Dr. Walter Gunn
of the AACFS. Thanks to Dr. Ellen Goudsmit of IFMEA;]
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>6. New Canadian patient organization
A new patient support organization has been formed in Canada. The
National ME/FM Action Network has been incorporated as of June 18,
1993 and is awaiting approval of charitable status. The organization
will deal with a variety of patient issues including insurance
problems, government, children and young adults and the school
system, media misinformation, lack of proper medical testing, doctor
and lawyer referrals, etc. The Canadian group asks other CFS/ME/FM
groups to please include them on newsletter mailing lists.
Volunteers are encouraged to help build the new group. Membership is
$20 per year, which will enable the publication of regular
newsletters and will cover office expenses. Contact Lydia Neilson,
President, National ME/FM Action Network, 3836 Carling Ave., Hwy 17B,
Nepean, Ontario K2H 7V2 CANADA.
[Information provided by Lydia Neilson.]
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>>>7. Well Spouse Foundation: help for partners of chronically ill
There is a USA national organization for partners of the chronically
ill. The creation of the Well Spouse Foundation was inspired by
Maggie Strong's 1988 book "Mainstay: the Well Spouse of the
Chronically Ill". The Foundation: issues a bi-monthly newsletter;
advocates for government policies sensitive to the needs of the
chronically ill; promotes public education and individual networking
regarding these issues; and provides guidance and resources to
establish well spouse self-help support groups. The Foundation has
thus far formed over 100 local support groups in 42 states in the
USA. Membership costs $15 per year for well spouses, or less if the
well spouse cannot meet that amount. To join or receive more
information, write to:
Well Spouse Foundation
PO Box 28876
San Diego, CA 92198
[Information provided by the (USA) National CFS Assoc. and the CFIDS
Assoc. of America.]
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>>>8. Networking news
A. Fibromyalgia discussion created
An electronic discussion on Fibromyalgia has been formed on the
Fidonet network of BBSs. It can be obtained by asking your local
Fidonet BBS sysop to obtain the "FIBROM Echo" which is now available
on the "echomail backbone" (a key phrase which the sysop needs to
know to get the discussion group; "echo" is Fidonet jargon for
electronic discussion group). The echo is expanding its
accessibility rapidly, and a list of available BBSs may appear in a
future edition of CFS-NEWS. The FIBROM echo originates from the
Lifeline BBS in Jacksonville, Florida USA (Fidonet node 1:112/73) at
telephone 1-904-276-4724. The moderator is Gail Hitson.
B. EI/MCS discussion created
An electronic discussion on Environmental Illness / Multiple Chemical
Sensitivity has been formed on the Fidonet network of BBSs. This
discussion group is not yet on the Fidonet "echomail backbone". The
EI/MCS echo originates at the Project ENABLE BBS in Cross Lanes, West
Virginia US (Fidonet node 1:279/14) at telephone 1-304-759-0727 (you
can ask your BBS sysop to pick up the echo from this BBS).
The BBSs that currently carry the EI/MCS echo are as follows:
ADAnet One (tm) NetHub Pinson AL 1-205-254-6050
Handicap News Shelton CT 1-203-926-6168
Lifeline Jacksonville FL 1-904-276-4724
Nerd's Nook_II Rocky River OH 1-216-356-1772
Project ENABLE Cross Lanes WV 1-304-759-0727
MEgahertz (12am-6am) London UK 44-81-595-1921
C. Project ENABLE BBS changes access telephone
The Project ENABLE BBS, which originates the CFS echo and which
carries many CFS and disability-related information files, has moved
to a new office and has a new access telephone number, which now is:
1-304-759-0727
The postal address is now Project Enable, West Virginia Research and
Training Center, 5088 Washington Street West, Cross Lanes, WV 25313
USA. For other access, note the following: fax 1-304-759-0726;
voice/TDD: 1-304-759-0716 or (800) 624-8284; Internet:
Project.Enable@f14.n279.z1.fidonet.org; FidoNet: 1:279/14; EchoNet:
50:5011/14; ADANet(tm): 94:3040/1. Project Enable is the home of the
Rehabilitation Technology Association's communication and information
service. The Job Accommodation Network BBS is also available at
telephone (800) DIAL-JAN.
D. CFS-NEWS back issues available via Internet ftp.
Monthly logs of CFS-NEWS back issues are now available on Internet
via anonymous ftp. Log in to list.nih.gov, directory cfs-news. Get
the file cfs-news.index for a listing of what is contained in each of
the monthly logs.
Individual issues are still available as separate files via e-mail at
the Albany Listserv, but are not available via ftp at this site.
Send commands in the form of GET CFS-NEWS ### where ### represents an
issue number. E.g., to get issue number 1 send GET CFS-NEWS 001 as
an e-mail message to the Internet address
listserv%albnydh2.bitnet@albany.edu .
[Information for this article provided by Gail Hitson of the Lifeline
BBS, Tom Freeman of the Project ENABLE BBS, and Roger Burns.]
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>>>9. Speaking events
A. Dr. Paul Cheney, M.D. of the Cheney Clinic will speak by
tele-conference call on October 10 in Brooklyn, New York. The
entrance fee is $10 which will go to research. Reservations are
necessary. Contact Nancy Cucinotta at 1-718-851-1934.
B. Dr. Andrew Lloyd, M.D. will speak at the annual general meeting of
the ME/CFS Society of Victoria to be held on November 13, 1:30-4:30pm
at Rentoul Hall, 16 Livingstone Close, Burwood 3125 Victoria,
Australia.
C. The Massachusetts CFIDS Assoc. will host a talk by Dr. Benjamin
Natelson on Sunday, October 3, 2-4pm at Shipley Auditorium, Newton
Wellesley Hospital, Newton, Massachusetts. Phone 1-617-893-4415 for
further information.
[Information provided by C.A.N. of New York, the ME/CFS Society of
Victoria and the Massachusetts CFIDS Assoc.]
===================================================================
CFS-NEWS (ISSN 1066-8152) is an international newsletter published
and edited by Roger Burns in Washington D.C. It is distributed:
through the "CFS echo" (discussion group) on the Fidonet volunteer
network of BBSs; via the NIHLIST Listserv on Internet; and as USENET
Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on
the Project ENABLE BBS in West Virginia USA at telephone 1-304-759-
0727 in file area 22, and the valuable patient resource file named
CFS-RES.TXT is available there too. Suggestions and contributions
of news may be sent to Roger Burns at Internet CFS-NEWS@LIST.NIH.GOV
or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or
postal address 2800 Quebec St. NW #1242, Washington DC 20008 USA, or
post a message to the CFS echo or to the Internet CFS-L group or to
newsgroup alt.med.cfs. Copyright (c) 1993 by Roger Burns. Permis-
sion is granted to excerpt this document if the source (CFS-NEWS) is
cited. Permission is also granted to reproduce the entirety of this
document unaltered. This notice does not diminish the rights of
others whose copyrighted material as so noted may be quoted herein.
Note that Fido and Fidonet are registered marks of Tom Jennings and
Fido Software.
===================================================================
INTERNET users are encouraged to obtain the CFS-RES TXT resource file
and other CFS files at the NYSDH file server. Send the command GET
CFS-RES TXT (or for a full list of files, send GET CFS-D FILELIST) by
Internet e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU .
Distribution of CFS-NEWS on the Internet is sponsored by the NIH
Computing Utility. However, the content of this independent
newsletter and the accuracy of the sources which it cites are solely
the responsibility of Roger Burns. To subscribe, send the command
SUB CFS-NEWS <your> <name> to the address LISTSERV@NIHLIST.BITNET or
LISTSERV@LIST.NIH.GOV . To get back issues, send GET CFS-NEWS INDEX
to either the Listserv at list.nih.gov or at the Albany address cited
above, and follow the instructions in the file. Anonymous ftp
available from list.nih.gov (128.231.64.10), directory cfs-news.
=====================================================================
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