
 HHHHHH   HHHHHH   HHHHHH          H    H   HHHHHH   H     H   HHHHHH
 H        H        H               HH   H   H        H     H   H
 H        HHHHH    HHHHHH   HHHH   H H  H   HHHH     H  H  H   HHHHHH
 H        H             H          H  HHH   H        H  H  H        H
 HHHHHH   H        HHHHHH          H   HH   HHHHHH    HHHHH    HHHHHH


            Chronic Fatigue Syndrome Electronic Newsletter

 --------------------------------------------------------------------
 No. 30                    January 8, 1994            Washington DC
 --------------------------------------------------------------------

                    MEDICAL PUBLICATIONS UPDATE /
                       MAY 12 CAMPAIGN BEGINS

        CONTENTS

 >>>1.  Medical publications update
 >>>2.  May 12 Campaign begins
 >>>3.  Networking News -- BBSs in New York, Illinois, California

 -------------------------------------------------------------------

 >>>1. Medical publications update

The following was contributed by Mr. Steve Clancy, 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
 ********************************************************************

 (NOTE: Articles with title in brackets [ ] are not in English.)
 --------------------------------------------------------------------
 12/21/93

1. Kiener S. [A case from practice (279). Schweizerische Rundschau
fur Medizin Praxis, 1993 Oct 12, 82(41):1142-3. UI: 94023643.

2. Lieberman J; Bell DS. Serum angiotensin-converting enzyme as a
marker for the chronic fatigue-immune dysfunction syndrome: a
comparison to serum angiotensin-converting enzyme in sarcoidosis.
American Journal of Medicine, 1993 Oct, 95(4):407-12. UI: 94027119.

3. Ewig S. [The chronic fatigue syndrome]. Deutsche Medizinische
Wochenschrift, 1993 Sep 24, 118(38):1373-80. UI: 94008478.

4. Heuft L; Bravenboer B; Ziekenhuis C. Functional hypoglycaemia
postulated as cause of chronic fatigue syndrome [letter]. Bmj, 1993
Sep 18, 307(6906):735. UI: 94004341.

5. Kilburn KH. Symptoms, syndrome, and semantics: multiple chemical
sensitivity and chronic fatigue syndrome [editorial]. Archives of
Environmental Health, 1993 Sep-Oct, 48(5):368-9. UI: 94029185.

6. Weiger WA. Chronic fatigue syndrome [letter]. Neurology, 1993 Sep,
43(9):1866-7. UI: 94020343.

7. Hyyppa MT; Lindholm T; Lehtinen V; Puukka P. Self-perceived
fatigue and cortisol secretion in a community sample. Journal of
Psychosomatic Research, 1993 Sep, 37(6):589-94. UI: 94016011.

8. Barnes CL; Fleming CA; Poinsett-Holmes K; Kennedy LD. Chronic
fatigue syndrome: what are the facts? Journal of Practical Nursing,
1993 Sep, 43(3):24-31; quiz 32-4. UI: 94015985.

9. Gibson H; Carroll N; Clague JE; Edwards RH. Exercise performance
and fatiguability in patients with chronic fatigue syndrome. Journal
of Neurology, Neurosurgery and Psychiatry, 1993 Sep, 56(9):993-8. UI:
94015125.

10. St. Clair EW. New developments in Sjogren's syndrome. Current
Opinion in Rheumatology, 1993 Sep, 5(5):604-12. UI: 94001366.

11. Walker EA; Katon WJ; Jemelka RP. Psychiatric disorders and
medical care utilization among people in the general population who
report fatigue. Journal of General Internal Medicine, 1993 Aug,
8(8):436-40. UI: 94015551.

12. Preedy VR; Smith DG; Salisbury JR; Peters TJ. Biochemical and
muscle studies in patients with acute onset post-viral fatigue
syndrome. Journal of Clinical Pathology, 1993 Aug, 46(8):722-6. UI:
94013555.

13. Smith AP; Behan PO; Bell W; Millar K; Bakheit M. Behavioural
problems associated with the chronic fatigue syndrome. British
Journal of Psychology, 1993 Aug, 84 ( Pt 3):411-23. UI: 94005500.

14. Connolly S; Smith DG; Doyle D; Fowler CJ. Chronic fatigue:
electromyographic and neuropathological evaluation. Journal of
Neurology, 1993 Jul, 240(7):435-8. UI: 94015175.

15. Bojic I; Mijuskovic P; Lilic D; Kuljic-Kapulica N; Mijuskovic Z;
Berger S; Mitrovic D. [The chronic fatigue syndrome associated with
Epstein-Barr virus infection]. Vojnosanitetski Pregled, 1993 May-Jun,
50(3):304-7. UI: 94025679.

16. Stockdale T. Chronic fatigue syndrome (ME) [letter]. Nutrition
and Health, 1993, 9(1):59-60. UI: 94020575.

17. Bowles NE; Bayston TA; Zhang HY; Doyle D; Lane RJ; Cunningham L;
Archard LC. Persistence of enterovirus RNA in muscle biopsy samples
suggests that some cases of chronic fatigue syndrome result from a
previous, inflammatory viral myopathy. Jornal do Medico, 1993,
24(2-3):145-60. UI: 94014817.


 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 >>>2.  May 12 Campaign begins

[The following is the January press release of the RESCIND
organization which has been created to promote May 12 as
International Awareness Day for CFS/CFIDS/ME.  The date May 12 is the
birthday of Florence Nightingale, who suffered from a debilitating
and undiagnosed illness for many decades of her life which, some
speculate, may have been a precursor to, or in fact the very same
disease as, the CFS illness that we know today .]

            MAY 12: International CFIDS/ME Awareness Day

        "Turning The Spotlight On Chronic Fatigue and Immune
           Dysfunction Syndrome/Myalgic Encephalomyelitis"

January 1994 Press Release

With the May 12th International CFIDS/ME Awareness Day now just four
months away, many CFIDS/ME groups are beginning to plan activities to
mark the event.  From January 1994 through May 1994, RESCIND, Inc.
will be issuing monthly press releases, divided into three sections,
to help keep everyone informed concerning the planning that is going
on worldwide for the event.  The "MAY 12 News" section of each press
release will present updates on the involvement of various CFIDS/ME
groups in MAY 12 activities.  The "MAY 12 Action" section will
outline what individuals should do to mark the event.  Lastly, the
"Contacting RESCIND, Inc." section will offer various ways of
reaching RESCIND so people can convey activities or action ideas for
inclusion in upcoming MAY 12 press releases.

   I. MAY 12 NEWS

In the USA, The CFIDS Association of America has endorsed May 12 as
International Awareness Day for the illness.  The Association's
renowned publication "The CFIDS Chronicle" featured a promotion of
MAY 12 in its November edition on page 51.

The CFIDS Activation Network (C.A.N.) of metropolitan New York is
spearheading a national petition drive in coordination with MAY 12.
The petitions will be presented to the U.S. Congress on that day.  To
get copies of the petition please contact C.A.N. at P.O. Box 345,
Larchmont, New York 10538 or at telephone. (212) 627-5631 or fax
(914) 636-6515.  C.A.N. is also promoting the use of blue ribbons as
a symbol of the CFIDS/MAY 12 movement.

In Canada, The National ME/FM Action Network has announced that it
will be participating and has appointed Paul Walker, the
organization's Vice President, as their national coordinator for the
event.  Paul can be reached at: 139 Beech Fern Drive, Stittsville,
Ontario K2S 1E2 CANADA Telephone: (613) 836-3466.

Aidan Walsh, of Montreal, Quebec is coordinating a "walk" on
Parliament Hill in Ottawa, Ontario which will be an all-day event.
Please contact Paul Walker at the address above for more information.

The Myalgic Encephalomyelitis Association of Halton and Hamilton-
Wentworth endorsed the MAY 12 event for the second consecutive year
in the pages of their December 1993 "M.E. And You" newsletter.
Contact: The Myalgic Encephalomyelitis Association of
Halton/Hamilton-Wentworth, 762 Upper James Street, Box 143,
Hamilton, ONT Canada L9C 3A2 Phone: (905) 383 4431.

On the computer networks, an exchange of MAY 12-related messages has
been established between major networks.  Volunteers will exchange
messages that contain new recommendations for MAY 12-related
activities.  News of specific plans for MAY 12 events should be
conveyed to RESCIND at Internet address m.straznitsk@genie.geis.com
or mailed to its postal address (see section three "Contacting
RESCIND, Inc.")

Specific instructions for posting these messages on the different
networks are as follows.  On Prodigy, [JUMP] Medical Support, choose
the topic Chronic Fatigue Syndrome, and then add your message to the
"May 12 Awareness Day" subject.  On Fidonet, post to the CFS echo and
insert the characters "MAY12:" in the beginning of your message's
subject.  Similarly, on Internet's CFS-L discussion group, place
"MAY12: " in the subject. On GEnie, on page 970 in the disAbilities
Roundtable in category 1, post to the "May 12: Your Ideas Needed"
topic (number 9).  On CompuServe, GO GOODHEALTH and in section 17 for
Self-help/support, enter "MAY12:" as the beginning of your subject.
On America Online, go to the Better Health and Medical Forum, click
on Organizations and disabilities, click on the disabilities message
area, go into the General Discussions/Chronic Fatigue Syndrome and
insert "MAY12: " in your message's subject.

To get information about CFS/CFIDS/ME Computer networking, send a
stamped, self-addressed envelope (or outside the USA send an
International Reply Coupon) to The CFS/ME Computer Networking
Project, P.O. Box 2397, Washington, DC 20013 USA.

Much more international MAY 12 news will be announced in upcoming
press releases!

   II. MAY 12 ACTION

The strength of the MAY 12 event lies in the fact that it offers
individuals around the world an opportunity to communicate about the
devastation that is CFIDS/ME ON THE SAME DAY.  It is important to
remember that if the government receives ten letters a day for thirty
days, it won't get their attention nearly as much as getting 300
letters all on the same day.  There is a real power in numbers and
this is why the annual MAY 12 event is so promising.  Last year over
40,000 letters and phone calls reached Washington DC alone on May 12,
1993 and the MAY 12 campaign had barely started as it was in its
inaugural year.  We will surely achieve MUCH more this year!

   Best ways to communicate:

In all communications, be sure to be polite and brief, but to the
point.  The two main points to make are that (1) CFIDS/ME is a
serious illness that is often disabling, and (2) more government
research funds need to be allocated for CFIDS studies.  And don't
just rely upon yourself.  Get your close friends and family (anyone
who cares about you!) to do some communicating ON May 12.

 - Personal letters / Faxes -- Individualized personal letters are
what public officials respond to BEST.  Please write a personal
letter if you can.  However, many of us may be too sick to write and
send these, so note the suggestions for form letters and other
communications below.  Send correspondence by postal mail two or
three days before May 12, or better yet, send by fax on May 12.

 - Form letters -- RESCIND will be developing its own suggested form
letters in the near future, which will be distributed.  Also, please
contact your local support organization for May 12 form letters that
they might have.

 - Phone calls -- Again, be sure to be polite and brief, but to the
point.

   Who to communicate to:

Each of us has a different energy level, so contact as many of the
following officials as you are able.  If you begin writing several
letters now, you may be able to save up quite a number by early May.
Be sure to mail all of your letters together, just before May 12.

For addresses/phones/faxes for national officials, see the resource
list which follows.  For legislators and public health officials in
your local area, please research their contact information by
telephone (or perhaps your local support organization has already
compiled that information).  RESCIND suggests the following list of
priorities for the May 12 campaign:

 (1) The President or Prime Minister of your country
 (2) your national legislators in Congress or Parliament
 (3) your national public health officials
 (4) similar officials at the local level:
    - your state governor or provincial leader, and your city mayor
    - your local legislators at the state, provincial, county or city
      level
    - public health officials at the state, provincial, county or
      city level
 (5) national and local media: news directors for TV and radio
     networks and local stations; editors of national newsmagazines
     and city newspapers

   Special Projects:

CFIDS/ME organizations from around the world are sponsoring various
events (see "MAY 12 News" section).  In addition, you may chose to
act on your own on the following projects:

 - get friends, family, schools, churches, senior centers, etc. to
participate in as much phoning/faxing/letter writing (described
above) as possible.

 - develop several May 12 form letters for your local support group,
to be used by those who don't have the energy to compose their own
letters.

 - develop a "Media Kit" to be sent to all local TV and radio
stations and local newspapers in advance of May 12.

 - if you have a local M.D. who is very knowledgeable about CFIDS/ME,
try to arrange to get them on local TV or radio news shows to be
broadcast that day; perhaps include an eloquent patient to be part of
the panel.  Local media should be contacted by April 1, while
national media should be contacted by February 1.

 - start working now to get your local legislatures to pass a
resolution declaring May 12 as CFIDS/ME Awareness Day.  (Do this at
the state/provincial and county and city levels).

   Resource List:

We will be compiling postal addresses and other information to add
here in the weeks to come.

   USA

 President William J. Clinton
 1600 Pennsylvania Avenue NW
 Washington, DC 20500
 public comment telephone line: (202) 456-1111 (9 AM to 5 PM
   Eastern time; bypass the survey and wait for an operator
   to take your comment)
 fax: (202) 456-2461

 Members of Congress -- Identify your local representatives by
referring to your local telephone book, or by calling your county
Board of Elections or your public library.  Please telephone or fax
your local Congressperson at his/her local office.  Contact your
member in the House of Representatives and both of your state's two
Senators. Or send them mail as follows:

  Hon. <name of Senator>
  United States Senate
  Washington, DC 20510

        or

  Hon. <name of Congressperson>
  United States House of Representatives
  Washington, DC 20515


  Donna Shalala
  Secretary of Health and Human Services
  200 Independence Ave. SW   Room 719H
  Washington, DC 20201
  Telephone: (202) 690-6867
  Fax: (202) 690-6608

  Dr. Harold Varmus
  Director of the National Institutes of Health
  Bldg. 31   Room 2B25
  9000 Rockville Pike
  Bethesda, MD 20892
  Telephone: (301) 496-2535
  Fax: (301) 496-0017

  Dr. Anthony Fauci,
  Director of the National Institute of Allergy and
      Infectious Diseases
  Bldg. 31   Room 7803
  9000 Rockville Pike
  Bethesda, MD 20892
  Telephone: (301) 496-5717
  Fax: (301) 496-0017

  Dr. David Satcher
  Director of the Centers for Disease Control and Prevention
  MS-A23
  1600 Clifton Road NE
  Atlanta, GA 30333
  Telephone: (404) 639-3534


   CANADA

  Prime Minister Jean Chretien
  Telephone: (613) 992-4211
  Fax: (613) 941-6900

We are told that the public health officials at the provincial level
are particularly important in Canada, and we will be compiling
contact information for them in the weeks to come.

   III. CONTACTING RESCIND, INC.

If you are planning a specific effort in conjunction with this global
event, or have an idea for MAY 12 action, please contact: RESCIND,
Inc., 127 West Putnam Avenue, #170, Greenwich, CT 06830  Fax (203)
531-4135  Internet e-mail: m.straznitsk@genie.geis.com .  Information
can then be included in these monthly press releases and spread
throughout the CFIDS/ME community.  Please note that the deadline for
each month's MAY 12 press release is the first of each month (i.e.
all submissions must be received by RESCIND, Inc. by February
1, 1994 for inclusion in the February press release).

RESCIND, Inc. is a new organization operating with very modest
funding and depends solely on donations to cover the expenses
involved with promoting the MAY 12 event.  RESCIND needs your help.
All donations are tax deductible in the USA.

Thanks to our Communications Director Matt Straznitskas for compiling
the RESCIND press release, and for designing the MAY 12 and RESCIND
logos.  And special thanks to Roger Burns, Sandy Shaw, Molly
Holzschlag, Maryka Ford, Melissa Kaplan, and the many others who
submitted ideas and information for this press release.  RESCIND Inc.
has received hundreds of responses and thanks everyone for their
input!

 --------------------------------------------------------------------
                  REPEAL EXISTING STEREOTYPES ABOUT
           CHRONIC IMMUNOLOGICAL AND NEUROLOGICAL DISEASES

 RESCIND, Inc.              "Relentless Pursuit of the Truth"
 127 West Putnam Ave.
 Number 170
 Greenwich, CT 06830
 USA

                Board of Directors
                ------------------

 Thomas M. Hennessy, Jr.    Giovanna Del Deo
 President                  Secretary

 Michael J. Dubilier        Gregory A. Copp, C.P.A.
 Executive Vice President   Treasurer

 David Samelman             Matt Straznitskas
 Vice President             Communications Director

[The text above was taken from the CFS Newswire service and was
originally posted by Matt Straznistkas.  To subscribe to the CFS
Newsire service on Internet, send the command SUB CFS-WIRE
YourFirstName YourLastName as an e-mail message to the address
LISTSERV@SJUVM.STJOHNS.EDU .  On the Fidonet BBS network's CFS "echo"
read messages from, and post messages to, the name NEWSWIRE.]


 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-

 >>>3.  Networking News -- BBSs in New York, Illinois, California

In New York, the "CFS/ME/FMS BBS of Long Island" has been set up by
Marcella Feinsod and has many CFS information files and news items
available.  Dial in to 1-516-736-6810.

In northern Illinois, the "CFS Support System" has been created by
Darryl Hays and can be reached at 1-815-433-6959.

In Los Angeles, California, Camilla Cracchiolo has set up a CFS files
area on her "Shrine of the Cybernetic Madonna BBS" which can be
reached at 1-213-766-1356.


 ===================================================================
 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, no. 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) 1994 by Roger Burns. Per-
 mission is granted to excerpt this document if the source (CFS-NEWS
 Electronic Newsletter) 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.
=====================================================================



******************************************************************************

