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            Chronic Fatigue Syndrome Electronic Newsletter

 --------------------------------------------------------------------
 No. 33                     April 9, 1994               Washington DC
 --------------------------------------------------------------------

              CONFERENCES:  CFS, AND GULF WAR SYNDROME


        CONTENTS

 >>>1.  AACFS Conference in October
 >>>2.  Gulf War syndrome conference at NIH, April 27-29
 >>>3.  Critique of Epidemiology Studies published in the American
        Journal of Public Health
 >>>4.  April update for May 12
 >>>5.  CFS Youth Outreach

[Some news items about speaking events which might usually appear in
a separate article can be found this month in the May 12 update, such
as the May 12 appearances of Dr. Paul Cheney in Charlotte, North
Carolina and Drs. Nancy Klimas and Linda Miller Iger in San Diego,
California.]
 -------------------------------------------------------------------

 >>>1.  AACFS Conference in October

[This article, which appeared on the CFS Newswire on April 6, was
written by Molly Holzschlag based on information provided by the
American Association for CFS (AACFS), PO Box 895, Olney, MD 20830
USA, tel. 1-301-570-4258.  This article is copyright (c) 1994 Molly
Holzschlag and may be reproduced in its entirety without permission
for non-profit purposes only.]

          American Association for Chronic Fatigue Syndrome
  to hold the AACFS Second Annual Research and Clinical Conference
                            October, 1994

                         by Molly Holzschlag

 The AACFS will be presenting a Research and Clinical Conference on
 Chronic Fatigue Syndrome, to be held in Ft. Lauderdale, Florida,
 USA, at the Bonaventure Hotel and Resort.  Sponsored in part by the
 National Institutes of Health (NIH) and the United States Center for
 Disease Control (CDC), the conference will run for four days, from
 Friday, October 7th, through Monday, October 10, 1994.

 There will be both scientific and clinical sessions.  The scientific
 sessions will focus on epidemiology, neuropsychiatry, endocrinology,
 virology, immunology and clinical studies.  Clinical sessions are
 planned primarily for physicians and patients.  They will emphasize
 appropriate evaluations in private practice and address issues
 regarding CFS and insurance, disability and rehabilitation.
 Workshops on Women's Health and CFS, Rehabilitation and Alternative
 Medicine are planned.

 To be placed on a mailing list for brochures, please call
 1-800-883-0611 in the United States, and leave your name and
 address.  For international and other inquiries, please contact the
 AACFS at the address above.


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

 >>>2.  Gulf War syndrome conference at NIH, April 27-29

[Since Gulf War syndrome has been associated with CFS, CFS-NEWS
occasionally publishes news about this illness.  The following
information was provided by the U.S. National Institutes of Health
(NIH) Office of Medical Applications of Research.  This article
contains a detailed agenda that has been updated by the sponsors
since the official notice that many have received in the mail.  Note
that early registrations for attendance are encouraged, and veterans
who wish to testify must apply by April 18.

At the end of the workshop an independent panel is expected to
propose a working case definition, and they are scheduled to hold a
press conference.  The identities of the independent panel members
will not be publicly revealed before the workshop.  The chairperson
of both the panel and the workshop is Dr. Gareth Green, M.D. of the
Harvard University School of Public Health.]

               The PERSIAN GULF EXPERIENCE and HEALTH
                 NIH Technology Assessment Workshop

         April 27-29 1994, Masur Auditorium, Clinical Center
                    National Institutes of Health

                            Sponsored by

           NIH Office of Medical Applications of Research
            U.S. Department of Health and Human Services
                     U.S. Department of Defense
                 U.S. Department of Veterans Affairs
                U.S. Environmental Protection Agency

The exposure of U.S. and coalition forces to the unique environment
of the Persian Gulf region during Operations Desert Shield and Desert
Storm has resulted in a controversy about the possible health effects
that may been caused by that exposure.  Few battlefield casualties
occurred and relatively little illness was seen immediately following
the troop buildup and the short conflict.  Since then, however, there
have been numerous reports of illness from troops who were
participants, and may of them attribute their health problems to
their wartime experiences.  Most of the unexplained cases of illness
include symptoms that are often vague -- fatigue, weakness and
malaise, skin rash, headache, and respiratory symptoms.  But reports
of illness extended beyond the troops' own physical symptoms.  Some
veterans have reported illnesses in their spouses and birth defects
in children conceived after the conflict.

While it is clear that troops were exposed to many potentially toxic
substances present in the wartime environment -- fumes and smoke from
oil well fires, diesel fumes, toxic paints, pesticides, and depleted
uranium -- it is uncertain whether troops were exposed to chemical or
biological weapons.  Nor is it clear whether the variety of symptoms
and illnesses reported by U.S. troops constitute a distinct syndrome.
Numerous responses have been generated as a result of the veterans'
complaints.  Troop registries have been set up by the Department of
Defense and the Department of Veterans Affairs, and special referral
centers for clinical evaluation of complaints have been established.
Research proposals have been solicited, and epidemiological
surveillance is ongoing.

The purpose of this Technology Assessment Workshop is to examine the
available information relating to environmental exposure of troops
serving in the Persian Gulf and the reported illnesses, to determine
if an increased incidence of unexpected illnesses has occurred, and
to attempt to develop a working case definition for that illness.  In
addition, plausible etiologies and biological explanations for the
illness will be considered and recommendations for future research
will be made.

After 1 1/2 days of presentations and discussion by the audience, an
independent, non-Federal panel will weigh the scientific evidence and
write a draft statement in response to the following questions:

 - What is the evidence for an increased incidence of unexpected
illnesses attributable to service in the Persian Gulf War?

 - If unexpected illnesses have occurred, what are the components of
the most practical working case definition(s) based on existing data?

 - If unexpected illnesses have occurred, what are the plausible
etiologies and biological explanations for these unexpected
illnesses?

 - What future research is necessary?

On the final day of the meeting, the panel chairperson will read the
draft statement to the conference audience and invite comments and
questions.

This workshop is sponsored by the NIH Office of Medical Applications
of Research, the Department of Health and Human Services, the
Department of Defense, the Department of Veterans Affairs, and the
Environmental Protection Agency.

   Logistics

Workshop sessions will be held in the Masur Auditorium in the Warren
Grant Magnuson Clinical Center (Building 10), National Institutes of
health, 9000 Rockville Pike, Bethesda, Maryland.  Sessions will run
from 8:30 a.m. to 6 p.m. on Wednesday, 8 a.m. to 1:10 p.m. on
Thursday, and 9 a.m. to 11 a.m. on Friday.  The telephone number for
the message center is 301-496-2520.  To aid in planning, please
complete the registration card attached to this flyer [SEE BELOW] and
return it to Ann Besignano at Technical Resources, Inc. by mail of by
fax to 301-468-2245.  Call her at 301-770-3153 from 9 a.m. to 5 p.m.
eastern time for additional information.  After normal business
hours, a 24-hour voice mail system will take your message, and your
call will be returned on the next business day.

The 2 1/2 day conference is open to the public, and there is no
charge for registration.  YOU ARE ENCOURAGED TO REGISTER AS EARLY AS
POSSIBLE.  Because of the interest in this meeting, overflow seating
may be necessary.  You will receive confirmation of your
registration, which will indicate if you have been assigned to an
overflow site.

Rooms at area hotels should be reserved well in advance.  Individuals
must arrange their own accommodations.  Hotels within easy commuting
distance of NIH include:

 - Bethesda Marriott  301-897-9400
 - Chevy Chase Holiday Inn  301-656-1500
 - Embassy Suites Washington at Chevy Chase Pavilion  301-362-9300
 - Holiday Inn - Bethesda  1-800-638-5954
 - Holiday Inn Crowne Plaz  1-800-638-5963
 - Hyatt Regency Bethesda  301-657-1234
 - Marriott Suites (Democracy Boulevard)  301-897-5600
 - Ramada Inn - Bethesda  301-654-1000
 - Ramada Inn - Congressional Park  301-881-2300

   Transportation

Travel time from National Baltimore-Washington International, and
Dulles Airports to Bethesda-area hotels as well as to the NIH campus
is approximately 1 hour.  Ground transportation is available from all
airports.

Metrorail rapid transit serves the NIH campus via the Medical Center
station of the Red Line and is available from National Airport.

PLEASE NOTE:  Because of new construction on the NIH campus, VISITOR
PARKING IS VIRTUALLY NONEXISTENT.  Please plan accordingly.  You are
strongly encouraged to take public transportation.  If you must
drive, a limited number of visitor spaces are available in lot 41B at
the south end of the NIH campus.

   Agenda

 Wednesday, April 27                   Speakers
 -------------------                   --------

  8:30 am  Welcome                     John Ferguson, MD
                                       Director, Office of Medical
                                        Applications of Research, NIH

                                       Dennis Smith, MD
                                       Associate Chief Medical
                                        Director, Research and
                                        Development, Department of
                                        Veterans Affairs

           Charge to Panel             William Harlan, MD
                                       Associate Director for Disease
                                        Prevention, NIH

           Workshop Overview           Gareth Green, MD
                                       Harvard University School of
                                        Public Health;
                                       Workshop and Panel Chairperson

  8:45 am  I. Medical Overview of      MG Ronald R Blanck, US Army
              Operations Desert Shield   Walter Reed Army
              and Desert Storm           Medical Center (WRAMC)

           II. Operations Desert Shield
              and Desert Storm
              Health Background

  9:15 am     Infectious Disease Risk    CDR Craig Hyams, US Navy
              During Operations Desert   Naval Medical Research
              Shield and Desert Storm     Institute

  9:45 am     Psychiatric Aspects of     COL Joe Fagan, US Army
              Deployment

 10:05 am     Army Occupational Health   COL Eric Evenson, US Army
                                         Office of the Surgeon Gen'l
                                          HQ Department of the Army

 10:25 am     Discussion

           III. Post Desert Shield and
              Desert Storm Health Issues

 10:45 am     Overview of Dept. of Veterans   Robert Roswell, MD
              Affairs (VA) Persian Gulf       Dept. of VA
              Veterans Programs

 11:05 am     Persian Gulf Registry       Han Kang. Dr.P.H.
                                          Dept. of VA

 11:25 am     Persian Gulf VA Referral    Frances Murphy, MD, MPH
              Centers                     Dept. of VA

 11:40 am     Illness Clusters

              Post Persian Gulf Medical   CAPT William Berg, US Navy
              Findings in Military        US Navy Environmental and
              Reservists                   Preventative

              Health of Southeast         Russell Tarver, MD
              Mississippi National        VA Medical Center
              Guardsmen's Children        Jackson, Mississippi

 12:10 pm     Discussion

 12:30 pm  Lunch

  1:15 pm     Health Experience of        Gary Friedman, MD
              Fire Fighters               University of Texas
                                           Medical School

  1:25 pm     Report on Other             MG Ronald R Blanck, US Army
              Coalition Forces'           WRAMC
              Medical Experiences

  1:40 pm     Individual Case Presentations

  2:00 pm     Discussion

           IV. Evidence of Exposures

  2:30 pm     Environmental Conditions     COL Francis O'Donnell,
              in Saudi Arabia              US Army, WRAMC

  2:45 pm     Indigenous Infectious        MAJ Alan McGill, US Army
              Diseases                     Walter Reed Army Institute
                                            of Research (WRAIR)

  3:00 pm     Biological Warfare           LTC Ed Eitzen, US Army
              Vaccinations Used in         US Army Medical Research
              Operations Desert Shield      Institute of Infectious
              and Desert Storm              Diseases

  3:15 pm     Gulf War Syndrome as an     Dennis Ross
              Intelligence Question       Defense Intelligence Agency

  3:30 pm     Chemical and Biological      Joseph Corriveau, Ph.D
              Detection Systems            US Army Foreign Science
                                            and Technology Center

  3:45 pm     Pyridostigmine Use in        Fred Sidell, MD
              the Gulf War                 US Army Medical Research
                                            Institute of Chemical
                                            Defense

  4:00 pm     Pesticides Use by US         CAPT Herbert Bolton,
              Forces during Operations     US Navy, Armed Forces Pest
              Desert Shield and Desert      Management Board
              Storm

  4:15 pm     Depleted Uranium Exposure    LTC Eric Daxon, US Army
              in the Persian Gulf          Armed Forces Radiobiology
                                            Research Institute

  4:30 pm     Quantification of the        Jack Heller, Ph.D
              Pollution Resulting from     US Army Environmental
              Kuwaiti Oil Fires To          Hygiene Agency
              Determine Long-Term Health
              Risk to DoD Personnel

  4:45 pm     Unusual Occupational         David Johnson, Ph.D
              Exposures                    University of Oklahoma

  5:00 pm     Patterns of Stress in        David Marlowe, MD
              Operations Desert Shield     WRAIR
              and Desert Storm

  5:15 pm     Kuwait Casualties:           Nelson Irey, MD
              Morphologic and              Armed Forces Institute of
              Toxicologic Findings          Pathology

  5:30 pm     Discussion

  6:00 pm  Adjourn

 Thursday, April 28
 ------------------

           V. Framework for Diagnosis:  Part 1

  8:00 am     Occupational Diseases        Sandra Mohr, MD
                                           Robert Wood Johnson
                                            Medical School,
                                           University of Medicine and
                                            Dentistry of New Jersey

  8:15 am     Environmental Respiratory   Rebecca Bascom, MD
              Diseases                    University of Maryland

  8:30 am     Effects of Biological       LTC John Wade, US Army
              Warfare Agents              Medical Biological Defense
                                           Research Program

  8:45 am     Neurotoxicology of Nerve   Eve Feldman, MD
              Agents and Pesticides      University of Michigan
                                          Medical Center

  9:00 am     Psychiatry                 Matthew J Friedman, MD, PhD
                                         National Center for
                                          Posttraumatic Stress
                                          Disorder

  9:15 am     Health Experience Among    Shirley Fry, MD
              Populations Exposed to     Oak Ridge Institute for
              Uranium                     Science Education

  9:30 am     Reproductive Effects       Don Mattison, MD
                                         University of Pittsburgh
                                          School of Public Health

  9:45        Discussion

              Framework for Diagnosis: Part II

 10:10 am     Chronic Fatigue Syndrome:   Stephen Straus, MD
              A Clinical and Historical   National Institutes of
              Perspective                  Allergies and Infectious
                                           Diseases

              Chronic Fatigue Syndrome:   Keiji Fukuda, MD
              Proposed Case Definition,   Centers for Disease Control
              Research, and Clinical       and Prevention
              Guidelines

 10:40 am     Fibromyalgia: Diagnosis,   Stanley Pillemer, MD
              Manifestations, and        National Institute of
              Associations                Arthritis and
                                          Musculoskeletal and Skin
                                          Diseases

 10:55 am     Multiple Chemical          Claudia Miller, MD
              Sensitivities: Point       University of Texas Health
                                          Science Center

 11:10 am     Multiple Chemical          Abba Terr, MD
              Sensitivities:             Stanford University Medical
              CounterPoint                School

 11:25 am     Toward the Development     MG Ronald Blanck, US Army
              of a Case Definition       WRAMC

 11:40 am     Defense Science Board      COL Frank Cox, US Army
              Consideration              Office of the Assistant to
                                          the Secretary of Defense
                                          (Atomic Energy)

 11:55 am     Discussion

           VI. Public Session

 12:10 pm     Testimony from Veterans    American Legion
              Organizations              Disabled American Veterans
                                         Veterans of Foreign Wars

 12:30 pm    *Testimony from Persian
              Gulf Veterans

  1:10 pm  Adjourn

 Friday, April 29
 ----------------

  9:00 am  Presentation of Workshop      Gareth Green, MD
           Statement                     Workshop and Panel
                                          Chairperson

  9:30 am  Discussion

 11:00 am  Panel Meets in Executive Session

  1:00 pm  Press Conference

  2:00 pm  Adjourn

 ----------------------------------------------------------------
 * Instructions for Testifying

Time has been allotted for eight 5-minute presentations by Persian
Gulf veterans.  Requests to testify must be received in writing along
with your written testimony by Technical Resources, Inc., ATTN: Ann
Besignano, 3202 Tower Oaks Boulevard, Rockville, MD 20852 by April 8.
If more than eight requests are received, presenters will be chosen
by lot.  All veterans selected will be notified by April 21.


 ==================== GENERAL REGISTRATION FORM ===================

 NIH Technology Assessment Workshop on

 The PERSIAN GULF EXPERIENCE and HEALTH

 April 27-29, 1994

 Masur Auditorium
 Clinical Center
 National Institutes of Health
 Bethesda, Maryland

  _
 |_|  I will attend.

  _
 |_|  I cannot attend, but send me the panel report on the Persian
      Gulf Experience and Health.


 _________________________________________________________________
 Name

 _________________________________________________________________
 Degree

 _________________________________________________________________
 Title

 _________________________________________________________________
 Affiliation

 _________________________________________________________________
 Address

 _________________________________________________________________
 City                          State               Zip

 _________________________________________________________________
 Phone                         Fax

 ==================================================================

 [Mail registration form to:         or Fax to 1-301-468-2245]

 NIH Technology Assessment Workshop on
 The PERSIAN GULF EXPERIENCE and HEALTH
 c/o Ann Besignano
 Technical Resources, Inc.
 3202 Tower Oaks Boulevard
 Suite 200
 Rockville, MD 20852

[CFS-NEWS wishes to thank William Hall (NIH) and Ann Besignano for
their assistance.]


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

 >>>3.  Critique of Epidemiology Studies published in the American
        Journal of Public Health

The February 1994 edition of American Journal of Public Health has
published a paper named "CFS: Have Flawed Assumptions Been Derived
from Treatment-Based Studies?" (Am J Public Health, 1994;84:282-284)
by Judith Richman, PhD, Joseph A. Flaherty, MD, and Kathleen M.
Rospenda, MA, all of the University of Illinois at Chicago Dept. of
Psychiatry.  The paper critiques CFS epidemiological studies in
general, discussing common problems of sampling and the definitions
used.  The paper discusses, in some detail, work by Buchwald and
Komaroff, Lloyd et al., and the U.S. Centers for Disease Control and
Prevention (CDC).  The authors suggest that studies to date
underestimate prevalence for CFS overall, especially underestimate
prevalence in low-income populations, and might be overestimating
prevalence for women.  They recommend a community "true" prevalence
study be undertaken that will be unbiased by help-seeking behaviors
or access to treatment.


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

 >>>4.  April update for May 12

[The following is a slightly edited version of the RESCIND update for
May 12 Awareness Day which appeared on the CFS Newswire service on
April 6.]

            MAY 12: International CFIDS/ME Awareness Day
                        April 1994 Update

Tick, tick, tick. Thirty days now remain before MAY 12: International
CFIDS/ME Awareness Day is upon us. By all accounts, this year's event
looks to be highly successful as a tremendous number of CFIDS
organizations have committed to marking the event with rallies,
lectures, phone-in campaigns, and other activities. Although RESCIND,
Inc. is responsible for the important work of promoting MAY 12, the
activities being carried out at the grassroots will largely determine
the overall success of this year's event.  RESCIND would like
to thank everyone who is doing their part.

RESCIND, Inc. will continue to issue monthly updates through May 1994
to help keep everyone up to date on the planning that is going on
worldwide for the event.  Patients are urged to distribute these
updates at their local support group so that the greatest number of
people can be kept abreast of the latest MAY 12 planning. Groups are
asked to mail donations to RESCIND, Inc. (see section three,
"Contacting RESCIND, Inc.") so that the organization can promote
the MAY 12 event to the fullest extent possible. Whatever other
projects you also may be working on, please support our international
effort by promoting May 12 as an awareness day for CFIDS/ME.
Together, we will turn the spotlight on CFIDS/ME!

I. MAY 12 NEWS

In the USA, The CFIDS Association of America, The Sheridan Group, and
members of the Association's Public Policy Advisory Committee will
meet with key appropriators on Capitol Hill in Washington, DC on May
12th to discuss upcoming appropriation issues related to funding for
CFIDS research.

The CFIDS Association of America has dedicated a substantial portion
of April's monthly update to The CFIDS Information Line (900-896-
2343) to MAY 12 and has prepared a small MAY 12 packet which includes
a lobbying primer and a listing of a few other organizations to
contact.  People can request the packet by contacting The CFIDS
Association of America (P.O. Box 220398, Charlotte, NC
28222-0398).

At the local level, Dr. Paul Cheney will address The CFIDS
Association of America's monthly support group on Thursday, May 12,
1994.  The Association will announce the event throughout the local
media and will be inviting county and public health officials and
North Carolina's governor and representative to attend. The
Association will display the North Carolina portion of the CFIDS
Silhouette Banner at the event and the Association is encouraging
other groups to do the same (see below).

The CFIDS Silhouette Banner, a memorial to those with CFIDS which now
stretches over 300 yards long, is temporarily divided up into
sections by state and being made available to groups in the United
States for the MAY 12 event.  The Banner's sponsors, the Rhode Island
CFIDS Association, will be filling requests from each state on a
first come, first serve basis and must receive requests by
April 10th. For more information call Patricia Magnone at (401)
781-2876.

The National ME/FM Action Network (Canada) recently received a
special announcement from Ms. Diane Marleau, Minister of Health and
Welfare of the Government of Canada, which expressed her support and
best wishes for MAY 12: International CFIDS/ME Awareness Day.  For
more information contact:  National ME/FM Action Network, 3836
Carling Ave., Hwy 17B, Nepean, ON K2H 7V2 CANADA Tel. (613) 829-6667.

A Joint State of New York legislation resolution recognizing CFIDS
and declaring May 12th CFIDS Awareness Day has been issued. State
Senator Jeff Present and Assemblyman Patricia McGee sponsored the
resolution.  For a copy, send a self addressed, stamped envelope to
Lori Clovis, P.O. Box 144, Hinsdale, NY 14743.

On May 12th in Orange County, California, the Irvine Center of
Special Immunology will offer an all-day (9 a.m. to 5 p.m.)
presentation called "Intervention and Hope: CFIDS in Perspective."
Doctors Nancy Klimas and Linda Miller-Iger will lecture. For more
information phone Joyce Swaring at (714) 753-0670 or write 100
Pacifica, Suite 100, Irvine, CA 92718.

In New York, on April 25th, the Millard Fillmore Health, Education
and Research Foundation is presenting a lecture by James Jones, M.D.
called "Chronic Fatigue Syndrome: A Realistic Approach." Dr. Jones is
on the senior staff of the National Jewish Center for Immunology and
Respiratory Medicine.  The presentation will begin at 10:30 a.m. at
the Holiday Inn, 620 Delaware Avenue, Buffalo, NY. MAY 12 materials
will be made available at the lecture.  Phone registration is
required by April 20th. Call (716) 885-6062.

In a recent mailing, The Connecticut CFIDS Association, Inc. sent out
over 1300 copies of the MAY 12 poster to Connecticut residents. The
Association also included the names and numbers of prominent
Connecticut government officials to be contacted for MAY 12.  For
more information, call The Connecticut CFIDS Association at (203)
569-4091

The Syracuse (New York) CFIDS Support Group will being showing the
riveting CFIDS movie, "Living Hell" at a local library. The group
will publicize the showing through local newspapers and encourage the
general public to attend.  For more information, contact Lori Clovis
at (716) 557-2260.

CFIDS Albuquerque (New Mexico) is currently planning on staffing an
information booth at one or more local shopping malls. For more
information contact Ed Isenberg, President, CFIDS Albuquerque at:
505-898-4635.

The commercial computer online service, GEnie, will be holding a
special live conference about the MAY 12 event on Thursday, May 5th
from 9:00 to 11:00 PM EST. The special guest will be Lucie Dorais,
the computer programmer who wrote the MAY 12 software which is now
available on many of the major computer networks (see below).  To get
to the conference, log on to GEnie and enter m970;2 at any prompt and
move to room 3. For information on subscribing to GEnie, call
customer services at 1-800-638-9636.

Software which provides background information on MAY 12:
International CFIDS/ME Awareness Day and automates letter writing to
government and media officials for MAY 12 is now available on four
major commercial online services.  The files available include:

MAY12ACT.ZIP: This is a hypertext document for the PC which provides
background information on the event and offers government and media
addresses along with sample letters.  A "lite" version on MAY12PEN is
also included (see description below).

MAY12ACT.MAC: This file contains the same information as the PC
version in an attractive, self launching file that will run on any
Macintosh computer.  Related graphics are included in the file.

MAY12ACT.TXT: This is a text-only version of the above software that
will run on all computers (PC, Mac, Amiga, TI, etc.).

MAY12PEN.ZIP: This is a letter writing automation program specially
written by Lucie Dorais for the PC. This DOS program uses the
addresses and sample letters from the MAY12ACT files above and makes
letter writing to the media and government a snap via an attractive
interface. A must have for PC owners!  (Note: similar letter writing
software for the Macintosh is not available.  If you are a Mac
programmer and interested in writing such a program for the
1995 event, please contact RESCIND, Inc. at 1521 Alton Road, Suite
210, Miami Beach, FL 33139.)

To download this software from CompuServe, Prodigy, America Online,
or GEnie, follow these instructions:

On CompuServe, GO GOODHEALTH and move to Library 17. Search the
following file names:

 File Name    Description
 ----------------------------------------
 MAY12A.ZIP   PC version (MAY12ACT.ZIP)
 MAY12A.MAC   Mac version (MAY12ACT.MAC)
 MAY12A.TXT   Text-only version (MAY12ACT.TXT)
 MAY12P.ZIP   PC letter automation software (MAY12PEN.ZIP)

If you have any problems finding or downloading the software on
CompuServe, contact Valerie Ostroth in e-mail at 70412.2251

On Prodigy, a library of files is not available but Prodigy CFS
category leader Maryka Ford has volunteered to file transfer the
software to any Prodigy user.  For more information, contact Maryka
via Prodigy e-mail at ANSU44B.

On America Online, go to the Health Forum and select disAbilities.
Click on Library Center and then click on disAbilities Library.
Select the following files:

 File Name              Description
 ----------------------------------------
 MAY12ACT.ZIP           PC version (MAY12ACT.ZIP)
 CFS May 12th Action    Mac version (MAY12ACT.MAC)
 MAY12ACT.TXT           Text-only version (MAY12ACT.TXT)
 MAY12PEN.ZIP           PC letter automation software (MAY12PEN.ZIP)

If you have any problems finding or downloading the software on
America Online, contact Melissa Kaplan in e-mail at MELISSA458

On GEnie, type m970;3 at any prompt to get to the disABILITIES
library.  Follow the directions to download a file. At the file
request prompt, enter the number of the file that you would like to
download:

 File #  File Name      Description
 ----------------------------------------
 1168    MAY12ACT.ZIP   PC version
 1164    MAY12ACT.MAC   Mac version
 1169    MAY12ACT.TXT   Text-only version
 1179    MAY12PEN.ZIP   PC letter automation software

If you have any problems finding or downloading the software on
GEnie, contact Matt Straznitskas in e-mail at M.STRAZNITSK

NOTE: A more complete listing of the locations where the MAY 12
software can be retrieved (including Internet and private BBSs) will
be made available in an upcoming release from RESCIND on the CFS
Newswire service.


II. MAY 12 ACTION

     Contacting Local Media

RESCIND is urging patients to write to their local media to request
that news stories be prepared to be run on or around May 12, 1994.
The following is a sample letter intended for the local media. Feel
free to write your own letter if you wish.

[TEXT OF SAMPLE LETTER APPEARED IN CFS-NEWS no. 32]

     Contacting Government Officials

The most important thing you can do on May 12th is contact your local
and national government officials. The following is a list of the
national officials (local officials can be found in your telephone
book):

   Resource List:

   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

Please write to you Member of Parliament.  Also to:

  The Right Honourable Jean Chretien
  Prime Minister's Office
  Langevin Block
  Ottawa, Ontario  K1A 0A2
  Telephone: (613) 992-4211
  Fax: (613) 941-6900

  Honourable Diane Marleau
  Minister of Health
  House of Commons
  Parliament Buildings
  Ottawa, Ontario  K1A 0A6
  Telephone: (613) 957-0200
  Fax: (613) 952-1154
  [Please thank Minister Marleau for recently endorsing May 12 as ME
  Awareness Day]

We are told that the public health officials at the provincial level
are particularly important in Canada.  Please write to them as well
as to your members of your provincial parliament.

  BRITAIN

Please write to your Member of Parliament.  Also to:

 The Right Honourable John Major, MP, Prime Minister
 First Lord of the Treasury
 House of Commons, Westminster
 London   SW1A 0AA

 The Honourable Virginia Bottomley, GP, MP
 Department of Health, Richmond House
 79 Whitehall
 London   SW1A 2NS

  AUSTRALIA

Please write to your Member of Parliament.  Also to:

 The Honourable Paul Keating, Prime Minister
 Parliament House
 Canberra, ACT   26000

 Senator Graham Richardson, Minister of Health
 Parliament House
 Canberra, ACT   26000

  NEW ZEALAND

Please write to your Member of Parliament.  Also to:

 The Right Honourable Jim Bolger, Prime Minister
 Parliament Buildings, Executive Wings
 Wellington

 The Honourable Jenny Shipley, Minister of Health
 Parliament Buildings, Executive Wings
 Wellington


III. CONTACTING RESCIND, INC.

RESCIND, Inc. can be contacted at: 1521 Alton Road, Suite 210, Miami
Beach, FL 33139  Fax: (305) 535-0065.
______________________________

An Urgent Message from RESCIND's President, Tom Hennessy:

Many of the principles of RESCIND, Inc. have been covering the
expenses of promoting the MAY 12 event out of their own pocket. There
is no one who understands how tough it is to get by more than the
members of RESCIND. I have personally gone over $100,000 into debt
over the past seven years supporting CFIDS/ME advocacy efforts.  I
have also raised loans of over $23,000 to pay for this year's event.
Despite getting over 1200 calls and letters containing thoughtful and
sometimes brilliant ideas for MAY 12, RESCIND has received a grand
total of $800 in donations for MAY 12 activities. This does not
compute.

If your support group cannot find even $25 to donate, then please
send a letter to Dr. Phil Lee (Assistant Secretary for Health,
Department of Health and Human Services, 200 Independent Avenue SW,
Room 617G, Washington, DC 20270) and ask him to provide a grant to
RESCIND, Inc. so that it can continue its work.
 ______________________________

Thanks to our Communications Director Matt Straznitskas for compiling
this update and for designing the MAY 12 and RESCIND logos. And
special thanks to Roger Burns, Lori Clovis, Kendra Dayger, Giovanna
Del Deo, Beth Huneycutt and others who submitted ideas and
information for this monthly MAY 12 update.

 RESCIND, Inc.
 1521 Alton Road,
 Suite 210,
 Miami Beach, FL 33139
 USA
 Fax: 1-305-535-0065


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

 >>>5.  CFS Youth Outreach

The "CFS Youth Outreach" organization provides a pen-pal network and
a bi-monthly newsletter for children and adolescents.  The group
offers a questionnaire for pen-pal match-ups.  The newsletter has
regular columns on nutrition, advocacy and member profiles.  Many
general news items are published, and suggestions and submissions are
welcome from readers.  The publisher asks $15 for an annual
subscription, but any youth will be given a subscription upon
request.  Make checks payable to "Sharon Walk, CFS Youth Outreach"
and send to Sharon Walk, 14 Shetland Road, Florham Park, NJ 07932
USA.

[Information provided by Sharon Walk.  Thanks to Ann McErleane and
Orvaline Prewitt for alerting CFS-NEWS about this information.]


 ===================================================================
 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.
=====================================================================


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