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            Chronic Fatigue Syndrome Electronic Newsletter

 --------------------------------------------------------------------
 No. 32                    March 31, 1994               Washington DC
 --------------------------------------------------------------------

                   PAPERS FROM OCT. '92 CONFERENCE


        CONTENTS

 >>>1.  Papers from Oct. '92 conference published in C.I.D.
 >>>2.  BMJ articles highlight psychological aspects of CFS
 >>>3.  U.S. ICC meeting summary
 >>>4.  May 12 update for March
 >>>5.  USA Youth Awareness campaign
 >>>6.  Speaking event: Dr. James Jones in Buffalo. April 25


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

 >>>1.  Papers from Oct. '92 conference published in C.I.D.

The journal Clinical Infectious Diseases has published research and
review papers from the October 1992 International Research Conference
on CFS/ME held in Albany, New York.  (This conference was reported in
CFS-NEWS no. 5.)  This journal edition is about 168 pages in length.
To purchase a copy, send US$ 8.00 to Clinical Infectious Diseases,
University of Chicago press, 5801 S. Ellis Ave., Chicago, IL 60637
USA and specify Volume 18, Supplement 1, January 1994.

                          Table of Contents

CHRONIC FATIGUE SYNDROME: CURRENT CONCEPTS

   Introduction -- Paul H. Levine

   Reflections on Epidemic Neuromyasthenia (CFS) -- D.A. Henderson

   Discussion: Reflections on Epidemic Neuromyasthenia (CFS)

   Comments on CFS -- Alexis Shelokov

PART I:  EPIDEMIOLOGY OF C.F.S.

   Introduction -- Walter J. Gunn
percent of articles in the medical trade press and 69 percent in
   A Comparison of Case Definitions of CFS -- David Bates, Dedra
Buchwald, Joshua Lee, Phalla Kith, Teresa Doolittle, Phoebe Umali and
Anthony Komaroff

   Epidemic Neuromyasthenia and CFS: Epidemiological Importance of a
Cluster Definition -- Paul Levine

   Primary Juvenile Fibromyalgia Syndrome and CFS in Adolescents --
David Bell, Karen Bell and Paul Cheney

   Borrelia burgdorferi Reactivity in Patients with Severe Persistent
Fatigue Who Are from a Region in Which Lyme Disease Is Endemic --
P.K. Cole, Lauren Krupp, Carol Doscher and Komal Amin

   CFS and a Disorder Resembling Sjogren's Syndrome: Preliminary
Report -- Leonard Calabrese, Mark Davis and William Wilke

   A Comparative Review of Systemic and Neurological Symptomatology
in 12 Outbreaks Collectively Described as CFS, Epidemic
Neuromyasthenia and Myalgic Encephalomyelitis -- Nathaniel Briggs and
Paul Levine

   Concurrent Sick Building Syndrome and CFS: Epidemic
Neuromyasthenia Revisited -- Alexander Chester and Paul Levine

   An Approach to Studies of Cancer Subsequent to Clusters of CFS:
Use of Data from the Nevada State Cancer Registry -- Paul Levine,
Martin Atherton, Thomas Fears and Robert Hoover

Abstracts

   CFS: A Possible Delayed Hazard of Pesticide Exposure -- P.O. Behan
and B.A.G. Haniffah

   Estimating CFS-Related Symptoms Among Nurses: A Preliminary Report
-- Leonard Jason, Stephanie Taylor, Sharon Johnson, Stephen Goldston,
Doreen Salina, Peter Bishop and Lynne Wagner

   Closeness of Contacts Between People in Two Clusters of CFS:
Evidence for an Infectious Etiology? -- Seymour Grufferman, Roslyn
Stone, Nancy Eby, Mary Huang, Susan Muldoon and Lili Penkower

   Results of an Investigation of Three Clusters of CFS -- Seymour
Grufferman, Paul Levine, Nancy Eby, Susan Muldoon, Mary Huang,
Theresa Whiteside, Lili Penkower and Ronald Herberman

   Summary and Perspective: Epidemiology of CFS -- Paul Levine


PART II:  CLINICAL AND MULTIDISCIPLINARY RESEARCH ON C.F.S.

   Introduction -- James Jones

   Acylcartinine Deficiency in CFS -- Hirohiko Kuratsune, Kouzi
Yamaguto, Mamoru Takahashi, Hideo Misaki, Shinichi Tagawa and Teruo
Kitani

   Sleep Disorders in Patients with Chronic Fatigue -- Dedra
Buchwald, Ralph Pascualy, Charles Bombardier and Phalla Kith

   Psychosocial Correlates of Illness Burden in CFS -- Michael
Antoni, Andrew Brickman, Susan Lurgendorf, Nancy Klimas, Ann Imia-
Fins, Gail Ironson, Ruth Quillian, Maria Jose Miguez, Flavia van
Riel, Robert Morgan, Roberto Patarca and Mary Ann Fletcher

   Measuring the Functional Impact of Fatigue: Initial Validation of
the Fatigue Impact Scale -- John Fisk, Paul Ritvo, Lynn Ross, David
Haase, Thomas Marrie and Walter Schlech

Brief Communication

   Cognitive Functioning of Patients with CFS -- Susan Johnson, John
DeLuca, Nancy Fiedler and Benjamin Natelson

Abstracts

   Laboratory Abnormalities in Patients with CFS -- DW Bates, D
Buchwald, J Lee, T Doolittle, J Kornish, C Rutherford, WH Churchill,
P Schur, D Wybenga, J Winkelman and AL Komaroff

   Comparison of the Psychiatric and Psychological Profiles of
Patients with CFS, Multiple Sclerosis, and Major Depression -- CM
Pepper, C Doscher, M Hirsh, E Guadino, PK Coyle and LB Krupp

   Survey of the Ocular Manifestations of Chronic Fatigue Immune
Dysfunction Syndrome -- Walter Potaznick and Neil Kozol

Clinical Trials

   A Controlled Clinical Trial with a Specifically Configured RNA
Drug, Poly(I)-Poly(C12U), in CFS -- David Strayer, William Carter,
Isadore Brodsky, Paul Cheney, Daniel Peterson, Patricia Salvato,
Carol Thompson, Mark Loveless, David Shapiro, William Elsasser and
David Gillespie

   Upregulation of the 2-5A Synthetase/RNase L Antiviral Pathway
Associated with CFS -- Robert Suhadolnik, Nancy Reichenbach, Patricia
Hitzges, Robert Sobol, Daniel Peterson, Berch Henry, Dharam Ablashi,
Werner Muller, Heinz Schroder, William Carter and David Strayer

   A Comparison of Cognitive Behavioral Treatment for CFS and Primary
Depression -- Fred Friedberg and Lauren Krupp

Abstracts

   A Pilot Study of Sertraline for the Treatment of CFS -- PO Behan,
BAG Haniffah, DP Doogan and M Loudon

   "One Stop Treatment" --- A British Fatigue Clinic -- Simon Hatcher

   A Controlled Trial of Immunologic and Cognitive-Behavioral Therapy
for Patients with CFS -- Andrew Lloyd, Ian Hickie, Alan Brockman,
Catherine Hickie, Andrew Wilson, John Dwyer and Denis Wakefield

   Kutapressin Inhibits In Vitro Infection of Human Herpesvirus Type
6 -- DV Ablashi, Z Berneman, C Lawyer and A Komaroff

   Poly(I)-Poly(C12U) Inhibits In Vitro Replication of Human
Herpesvirus Type 6 -- DV Ablashi, Z Berneman, DR Strayer, RJ
Suhadolnik, Nancy Reichenbach, Patricia Hitzges and A Komaroff

   Subjective Reduction in Symptoms of CFS Following Long-Term
Treatment with a Porcine Liver Extract: A Phase 1 Trial -- Thomas
Steinbach, William Hermann, Carl Lawyer, David Montefiore, Sudhakar
Wagle, Ali Gawish and David Ferguson

   Summary: Clinical and Multidisciplinary Research on CFS -- Dedra
Buchwald, James Jones and Paul Levine


PART III:  VIRAL STUDIES OF C.F.S.

   Introduction: Jay Levy

   Lack of Evidence for Infection with Known Human and Animal
Retroviruses in Patients with CFS -- Walid Heneine, Toni Woods,
Saswati Sinha, Ali Khan, Louisa Chapman, Lawrence Schonberger and
Thomas Folks

   Studies on Enteroviruses in Patients with CFS -- JW Gow, WMH
Behan, K Simpson, F McGarry, S Keir and PO Behan

   Summary: Viral Studies of CFS -- Dharam Ablashi

Independence Avenue S.W.
PART IV:  IMMUNOLOGIC STUDIES OF C.F.S.

   Introduction -- Andrew Lloyd

   Immunologic Abnormalities Associated with CFS -- Edward Barker,
Sue Fujimura, Mitchell Faden, Alan Landay and Jay Levy

   Cytokine Production and Fatigue in Patients with CFS and Healthy
Control Subjects in Response to Exercise -- Andrew Lloyd, Simon
Gandevia, Alan Brockman, John Hales and Denis Wakefield

   Dysregulated Expression of Tumor Necrosis Factor in CFS:
Interrelations with Cellular Sources and Patterns of Soluble Immune
Mediator Expression -- Roberto Patarca, Nancy Klimas, Susan
Lugtendorf, Michael Antoni and Mary Ann Fletcher

Brief Communications

   Association Between HLA Class II Antigens and the Chronic Fatigue
Immune Dysfunction Syndrome -- RH Keller, JL Lane, N Klimas, WM
Reiter, MA Fletcher

   Decreased Natural Killer Cell Activity Is Associated with Severity
of Chronic Fatigue Immune Dysfunction Syndrome -- Emmanual Ojo-
Amaize, Edward Conley and James Peter

   Summary: Immunologic Studies of CFS --Andrew Lloyd and Nancy
Klimas


PART V:  PUBLIC POLICY AND C.F.S.: A PERSPECTIVE

Abstract

   The Economic Impact of CFS -- Andrew Lloyd and Howard Pender

   Summary of Public Policy and CFS: A Perspective -- Mark Loveless,
Andrew Lloyd and Rudy Perpich


PART IV:  CLOSING REMARKS

   CFS: What Have We learned and What Do We Need to Know? -- AL
Komaroff and Nancy Klimas

[Thanks to Ty Webb for alerting CFS-NEWS about this edition of
Clinical Infectious Diseases.]


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

 >>>2.  BMJ articles highlight psychological aspects of CFS

The British Medical Journal (BMJ) in its March 19, 1994 edition
(volume 308) contains four articles on CFS.

The essay "CFS: prevalence and outcome / Psychosocial factors are
important for management" by S.M. Lawrie (Royal Edinburgh Hospital)
and A.J. Pelosi (Hairmyres Hospital, Glasgow) (pages 732-733) reviews
two of this edition's papers, and it emphasizes psychiatric aspects
of treatment and possible etiology.  The authors state that "All
physicians need help with patients who come to consultations armed
with a self diagnosis of myalgic encephalomyelitis, detailed
information of viral aetiology, and entrenched views on the perils of
exertion and the importance of prolonged rest....  The findings
reported in this week's journal should help doctors deal with the
main source of controversy about fatigue states -- whether chronic
fatigue syndrome is a physical or mental illness.  We find this
semantically difficult to discuss because we do not accept the
distinction between physical and psychological medicine that pervades
the medical literature and that is even more evident in pamphlets
from self-help organizations.  Clearly, however, in some patients
labelled as having chronic fatigue syndrome or myalgic
encephalomyelitis, psychiatric diagnoses -- with all their faults and
problems -- would improve management."

The authors refer to a study which appears in the same edition and
they go on to say "Wilson et al point out that a conviction of
physical disease may arise from severe physical symptoms, but the
possibility that a strong belief in a physical -- usually viral --
aetiology may actually cause prolonged and preventable disability
cannot be ignored (11).  This "physical conviction" and "psychosocial
denial" may promote chronicity if a virus becomes seen as the source
of all problems and encourages patients to avoid dealing with
personal difficulties (11)."  (The numbers in parenthesis are the
authors' footnoted reference to the Wilson paper.)  Although the
authors refer frequently to Wilson's paper for support of its
opinions, the editor of CFS-NEWS finds that the Wilson paper is
itself more objective and well-rounded in its conclusions.

The paper "Longitudinal study of outcome of chronic fatigue syndrome"
by Andrew Wilson, Ian Hickie, Andrew Lloyd, Dusan Hadzi-Pavlovic,
Clem Boughton, John Dwyer and Denis Wakefield, all of the Prince
Henry Hospital, Sydney (pages 756-759) sets out to examine the
predictors of long term outcome for patients with CFS and concludes
that although most CFS patients improve, a substantial proportion
remain functionally impaired and that psychological factors such as
illness attitudes and coping style seem more important predictors of
long term outcome than immunological or demographic variables.

In a concluding statement the authors write "These findings suggest
that subjects who deal with distress by somatisation (presenting
physical rather than psychological symptoms) and who discount the
possible modulating role of psychological factors are more likely to
have an unfavourable outcome.  The presence or absence of a specific
psychiatric diagnosis may not be as important as a defensive style
and attitudes towards illness.  There are, however, several
alternative explanations which need consideration.  The initial
assessment was carried out at entry to the trials not at onset of
illness, and more severe illness course may determine attitudes to
illness and influence coping mechanisms.  Stronger disease conviction
may also produced higher levels of illness morbidity, rather than
lower levels.  Though we obtained the same model using different
regression analysis strategies, validation on an independent data set
is required to prove the correctness of this model...  Given a
significant correlation between the absence of a premorbid
psychiatric diagnosis and denial of psychological difficulties ... a
relation may exists between psychological factors (such as coping
style) and immunological response.  This finding would be consistent
with the reports that specific coping styles such as suppression of
feelings (20) or fighting spirit (21) may modulate the outcome for
patients with cancer, perhaps through changes in immune function
(22).  Further longitudinal studies are needed to examine the
psychological relations between psychological distress and coping
style, immunological function, and the natural course of chronic
fatigue syndrome."

Two other papers relating to CFS appeared in this edition of BMJ.
"Population based study of fatigue and psychological distress" by T
Pawlikowska, T Chalder, SR Hirsh, P Wallace, DJM Wright and SC
Wessely of various London medical schools (pages 763-766) set out to
determine the prevalence of fatigue in the general population and the
factors associated with fatigue.  The study found that 18 percent of
respondents complained of excessive fatigue of 6 months or longer and
that the number and severity of fatigue symptoms was associated with
psychological morbidity, although the authors did not conclude that
this indicated causality.  Self diagnosis of chronic fatigue syndrome
was reported in 0.2 percent of the full sample (i.e., one percent of
those reporting excessive fatigue of longer than 6 months).

Lastly, "Professional and popular views of CFS" by Gael MacLean and
Simon Wessely of King's College School of Medicine and Dentistry,
London (pages 776-777) studied the coverage of CFS in the British
popular and medical press since 1980 through to the present.  It
found that 49 percent of articles in research journals did not favor
organic causes for the illness, whereas 31 percent did.  By contrast,
55 percent of articles in the medical trade press and 69 percent in
national newspapers and women's magazines did favor organic causes.
The paper did not mention any comparison of more recent articles vs.
articles published longer ago for either professional or popular
articles.  The paper concluded that "Press coverage of chronic
fatigue syndrome has amplified and distorted divisions in the
research community concerning the chronic fatigue syndrome.  Articles
in the press concentrate on a simple medical model of illness
reinforcing the stigma of psychological illness and dissatisfaction
with traditional medical authority."

[Thanks to Camilla Cracchiolo for alerting CFS-NEWS to this edition
of the BMJ.]


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

 >>>3.  U.S. ICC meeting summary

[The following is a report by the editor of CFS-NEWS who attended the
March 1 meeting.]

The following is a summary of the March 1, 1994 quarterly meeting of
the U.S. Interagency Coordinating Committee for CFS.  The meeting was
chaired by U.S. Assistant Secretary for Health Dr. Philip Lee.
Although the meeting was advertised as accepting no public testimony,
Dr. Lee accepted comments from those who did attend.

Research case definition article:  No draft was available at the
meeting or for public distribution, however one soon would be
circulated for comment to ICC governmental members and the
committee's four newly appointed consultants (Judy Basso of the
Minnesota CFS Assoc., Marya Grambs of the CFIDS Foundation, Kim
Kenney of the CFIDS Assoc. of America and Orvaline Prewitt of the
National CFS and Fibromyalgia Assoc.).  The CDC's Dr. Mahy said that
the current draft contained explicit clinical guidelines and
recommended lab tests.  The current plan is to finalize a draft by
April for submission to a widely read peer-reviewed journal for
possible publication in the summer.

The name of the illness:  Several attendees, notably Tom Hennessy
(President of RESCIND) and Giovanna Del Deo (of RESCIND and the
Massachusetts CFIDS Assoc.) urged that a change of name be included
in the research case definition article, and they underscored that
the current name is pejorative.  Dr. Lee reiterated from the previous
meeting (Nov. 17) that a change of name will expectedly happen when
sufficient evidence reveals the cause of the disease, and furthermore
the government does not have the responsibility for naming illnesses.
Kim Kenney stated that it would be useful to have a concurrent eponym
designated for the name, and she referred to at least one other
government official who seemed to agree with that approach.  Dr. John
Renner (medical adviser to the National CFS and Fibromyalgia Assoc.)
stated that this was a political issue and that very valuable time
was being wasted by dwelling on it.  Dr. Reeves of the CDC noted that
the current draft of the research case definition article downplayed
any endorsement of the current name, even though it did not recommend
a specific name change just yet.  In short, the various participants
largely retained their previous positions on this issue.

Grant proposals:  Dr. Lee commented on the high quality of the
research grants that had been approved, and recommended that NIH look
into the work of the Human Genome Project with respect to CFS.  He
also noted that many studies had been approved through the National
Institute for Allergies and Infectious Disease whereas only one study
had been approved through the National Institute for Mental Health.
Dr. Lee said that this fact underscored the idea that CFS does not
appear to be a behavioral illness.

CDC surveillance study:  Work is nearly complete, reported Dr.
Reeves, and the figures still appear in the range of 4 to 7 per
hundred thousand.  However, he reiterated the potential fault that a
passive surveillance study such as this that relies on sentinel
physicians might undercount the illness.  Future studies will employ
active surveillance.

NIH research:  Dr. Schluederberg of NIH reported that there will be a
follow up trial with respect to previously published work by
Demitrack et al. which had found a novel hormonal imbalance among CFS
patients.

The CDC informational brochure:  Dr. Reeves reported that a 2nd draft
had been given limited circulation for comment and that a 3rd draft
is available for full public distribution and comment.  (The comment
period closed on March 25.)  Dr. Reeves hoped to finalize the text by
April 1.  Orvaline Prewitt commented that the current draft was good,
and Dr. Renner said that there was a tremendous need for this
document to be completed and distributed to physicians and patients.
Kim Kenney said that the current draft was "much, much better" and
complimented the CDC for involving so many people in the comment
process.

Communications technology:  Tom Hennessy proposed that there be a
PC-based system to collect data and assist clinicians in diagnosing
immunological diseases, which the government should promote.  Dr. Lee
directed Mr. Hennessy to follow up on this proposal with the Public
Health Service's chief of data processing.

There was not enough time to complete the meeting's agenda.
Regarding future quarterly meetings, Dr. Lee said that the committee
and its consultants would conference by telephone in the summer and
winter, and that there would be in-person meetings in the spring and
fall.  The next in-person meeting might occur in the fall in Atlanta
to coincide with a conference that might be held then.  Otherwise it
would take place again in Washington.

Furthermore, Dr. Lee welcomed written comments from the public
regarding additional consultants to be added to the committee, both
with respect to private medical researchers and possibly additional
patient advocates.  Write to:

  Dr. Philip Lee
  U.S. Assistant Secretary for Health
  200 Independence Avenue S.W.
  Washington, DC 20201


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

 >>>4.  May 12 update for March

[The following is a portion of the March update of the RESCIND/May-12
organization, as published on March 13.  It appeared on the CFS
Newswire service.  Readers may note that RESCIND is largely a
volunteer effort, but that it does incur operating expenses.  The
RESCIND leadership is grateful for its volunteer support but has had
difficulty in conducting business due to lack of funds.
Contributions may be sent to RESCIND, Inc., 1521 Alton Road, Suite
210, Miami Beach, FL 33139 USA.]

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

Sixty days. That's how long before MAY 12: International CFIDS/ME
Awareness Day is upon us. Precious little time is left for groups to
plan activities to mark the event and let the world know about the
scope of this devastating illness.  Because media coverage is so
important in getting people to recognize CFIDS/ME, RESCIND is again
urging people to request that national media outlets cover the
CFIDS/ME story on or around May 12, 1994 (see section two, "MAY 12
ACTION").

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
urged to mail donations to RESCIND, Inc. (note new address -- see
section three, "Contacting RESCIND, Inc.") so that the organization
Together, we will turn the spotlight on CFIDS/ME!

I. MAY 12 NEWS

In Britain, The Action for M.E. group is working with the National
Union of Students to undertake many awareness activities for MAY 12
throughout Britain.  Also in Britain, The M.E. Association is
promoting a 24-hour sponsored automobile drive through all 45
counties of England during the week of MAY 12 in order to raise funds
and awareness.  The drive is starting in Bristol and transportation
is being provided by a local auto dealer.  And both national groups
are writing to national media and are prompting local support groups
to help promote MAY 12: International CFIDS/ME Awareness Day.

The Winter 1994 issue of THE CFIDS CHRONICLE includes a two page
article which details the names and addresses of prominent U.S. and
Canadian officials that should be contacted for MAY 12. RESCIND, Inc.
would like to thank to The CFIDS Association of America for
vigorously promoting the MAY 12 event in the past two issues of the
CHRONICLE.

The (USA) Youth Campaign for CFIDS Awareness, a project organized by
and for youth with CFIDS, is involving young people in a letter
writing campaign.  The letters will be sent to President Clinton and
the First Lady and will arrive on May 12, 1994. If you are a young
person and would like to participate, mail your letters, before April
15, to: The Youth Campaign for CFIDS Awareness, c/o Rebecca Moore,
P.O. Box 247, Warwick, NY 10990.

The Oregon CFIDS Association has arranged with state Governor Barbara
Roberts to have a proclamation signed declaring that the week of May
12 is Oregon CFIDS Awareness Week.  The signing by the Governor will
take place at the State Capitol Building in Salem in a public
ceremony held mid-day on May 12.  Information booths and other
activities will be held in the building's galleria throughout the
day.  For further information, or to volunteer to help, contact
the Oregon CFIDS Association, PO Box 746, Tualatin, OR 97062, or
leave a message at telephone 1-503-650-2237

The CFIDS Olean group of New York will be conducting a letter writing
and phone-in campaign to local and federal officials for MAY 12. The
group will also be attempting to get media coverage in their area,
including Buffalo and Rochester. Lastly, CFIDS Olean plans to set up
information booths and assist with the C.A.N. petition drive. For
more information, contact Lori Clovis, CFIDS Olean, P.O. Box 144,
Hinsdale, NY 14743, telephone: (716) 557-2260.

A Reminder: 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.

MAY 12 ACTION SOFTWARE for IBM/compatible and Macintosh computers
will be available by April 1 on the computer networks (CompuServe,
America Online, and GEnie).  The software provides background
information on the MAY 12 event, CFIDS/ME, and Florence Nightingale.
In addition, MAY 12 PEN, letter writing automation software written
by Lucie Dorais for the PC, will be available on the networks as
well. The April MAY 12 update will provide more detailed information
on how to obtain these programs.

RESCIND, Inc. has developed a MAY 12 poster which will be available
in the coming weeks. The poster is ideal for displaying near the MAY
12 demonstrations that various groups are sponsoring, as well as in
malls and in other public places.

RESCIND would like to print up MAY 12 T-shirts but is unsure of
demand. If you would like to place an order, please send a check for
$15 made out to RESCIND, Inc. to 1521 Alton Rd., Suite 210, Miami
Beach, FL 33139.  If you accompany your order with a photocopy of a
letter that you have sent to an official about MAY 12/CFIDS/ME, then
take one dollar off the price of each shirt ordered.

II. MAY 12 ACTION

This month RESCIND is again asking patients to write to the national
media to request that news stories be prepared to be run on or around
May 12, 1994.  National media usually take a couple months to develop
a story, so it is very important that people write letters
immediately.  Next month, RESCIND will be urging patients to write
their local media, so you may want to begin on that now if you have
already written to the national media.

     Sample Letter:

The following is a sample letter intended for the media.  Feel free
to write your own letter if you wish.

Dear <name>,

I would like to suggest coverage of a very serious illness for your
upcoming May planning to coincide with  MAY 12: International
Awareness Day for Chronic Fatigue and Immune Dysfunction Syndrome
(CFIDS -- formerly known as Chronic Fatigue Syndrome)/Myalgic
Encephalomyelitis (ME) Awareness Day. As you may be aware, CFIDS (the
term used in the United States)/ME (the term used in most of the rest
of the world) is a devastating disease that is striking a growing
number of people around world.

The illness, characterized by extreme fatigue, cognitive problems,
and numerous flu-like symptoms like fever and sore throat, leaves
many sufferers ill and bedridden for years at a time. Unfortunately,
government and medical institutions around the world have been VERY
slow to respond.

It is important to note that the May 12th date was chosen to
memorialize the birthdate of Florence Nightingale, the English army
nurse who inspired the founding of the International Red Cross.
Nightingale contracted a paralyzing, CFIDS/ME-like illness in her mid
thirties and spent the last 50 years of her life virtually bedridden.

If a cure is to be found for CFIDS/ME in the near future, government,
medicine, and the general public must be made fully aware of the
scope of this illness.  This is where you come in. As a powerful
conduit for human communication, you have a  responsibility to inform
citizens of the growing threat to human health that is CFIDS/ME.
Please help me, someone who has been profoundly impacted by
this illness, to shed light on CFIDS/ME on May 12th.

           Sincerely,

           <your name>

     Additional Talking Points:

You might want to also include the following ideas in your
communications to the media:

   - most other local and national media are being asked to run a
   story on CFIDS/ME on May 12.

   - the importance of this illness is shown in part by continued
   medical research by the U.S. National Institutes of Health (NIH)
   as well as research at Harvard, Prince Henry Hospital, the
   University of Glasgow and other renowned medical institutions. The
   NIH sponsored a conference last November on the illness to which
   they invited hundreds of doctors.

   - The U.S. Dept. of Veterans Affairs has recently declared Chronic
   Fatigue Syndrome (CFS) as the legitimate disability code for
   soldiers who have contracted Gulf War syndrome.

   - CFIDS/ME is an emerging illness.  Other illnesses such as polio
   and multiple sclerosis took several decades to gain public
   acceptance as legitimate diseases.  Hopefully in this day of rapid
   modern communications, this process will take a much briefer time
   for CFIDS/ME.

   - CFIDS will show a wide spectrum of severity.  Most patients are
   in great pain, and many are completely disabled.  Although
   CFIDS/ME is not usually life-threatening, many physicians who
   treat CFIDS/ME patients in addition to those who have AIDS or
   multiple sclerosis state that CFIDS/ME is often more debilitating
   and disabling than those other illnesses during the course of the
   illness.

   - The fact that children are contracting this disabling illness
   will have a deleterious effect on the economy since they may never
   become income-earning tax-payers.

   - [mention the worst aspects of how CFIDS/ME affects your life or
   that of someone you care about]

   - for more specific information about CFIDS/ME, contact any of
   the following organizations [list only those based in your own
   country]:

       USA:

 CFIDS Association of America, tel. 1-800-442-3437
 CFIDS Activation Network, tel. 1-212-627-5631
 RESCIND, Inc., 1521 Alton Road, Suite 210, Miami Beach, FL 33139 USA

       CANADA:

 National ME/FM Action Network 1-613-829-6667
 Nightingale Research Foundation  1-613-728-9643
 M.E. Association 1-613-563-1565

       BRITAIN:

 Myalgic Encephalomyelitis Association 44-0375-642466
 Action for M.E. 44-0749-670799

       AUSTRALIA:

 ME/CFS Society of New South Wales  61-2-439-6026
 ME/CFS Society of Victoria 61-3-888-8991
 ME/CFS Society of South Australia  61-8-373-2110
 ME Syndrome Society of Queensland 61-75-73-2772
 CFS Society of Western Australia 61-09-483-6667


     Media Outlets:

The following is a listing of prominent media outlets for USA,
Canada, Britain, and Australia.

[TEXT DELETED -- these were published in CFS-NEWS no. 31. -- Editor]

     Advice on Organizing Rallies

For those organizing a rally in conjunction with the MAY 12 event,
here are some tips from a professional rally organizer:

 - Check your State House security requirements if you plan to
organize a rally there. There MAY be special licensing requirements
that you will need to take care of.

 - Contact the governor in your state in advance of May 12th and
then, on May 12th, knock on his door and literally give him an
announcement explaining the day's events. You'll probably be greeted
by an aide.

 - Contact other organizations of related diseases like lupus, MS,
diabetes, etc. and see if they would be interested in supporting the
event (especially under the "Invisible Chronic Illnesses" term which
is popular now).

 - Speakers at your event might include statements from young people
or parents struggling with the illness.

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., 1521 Alton Road, Suite 210, Miami Beach, FL 33139.  Information
can then be included in these monthly updates and spread throughout
the CFIDS/ME community.  Please note that the deadline for each
month's MAY 12 update is the first of each month.

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, Giovanna Del Deo and
others who submitted ideas and information for this monthly MAY 12
update.


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

 >>>5.  USA Youth Awareness campaign

 The Youth Campaign for CFIDS Awareness
 c/o Rebecca Moore
 PO Box 247
 Warwick, New York 10990
 tel. 1-914-986-1023
 Internet: 73622.21@COMPUSERVE.COM

Dear Friends,

I'm a 17 year old student and I've had Chronic Fatigue Immune
Dysfunction Syndrome (CFIDS) for several years.  I have recently
founded The Youth Campaign for CFIDS Awareness, and am organizing a
letter writing campaign to the President and Mrs. Rodham Clinton.  We
hope to honor CFIDS Awareness Day by sending them a package of
letters in which children and youth tell of their experiences with
CFIDS, and of the need for research.

I would appreciate any suggestions that you might have about how to
reach as many youth as possible (i.e.: local support groups or
newsletters).  Also, if you know of any children/youth with CFIDS,
feel free to pass on the following information, or to ask me to send
them a copy.

I have included most of the text of our information packet in this
message.  If you're interested, I'd be glad to send you a copy
(Please send a self-addressed, stamped envelope).  Thank you for
writing, or for telling others about our project.

                                  Rebecca Moore
 ..................................................................

               The Youth Campaign for CFIDS Awareness

                        CFIDS Awareness Day
                           May 12, 1994

     The Youth Campaign for CFIDS Awareness will focus on the
involvement of youth in CFIDS Awareness Day 1994, through a letter
writing campaign to the President and Mrs. Rodham Clinton.  Together,
youth with CFIDS will send a strong message to Washington: that CFIDS
is a serious disease which affects many American children and youth,
and that increased support for research is essential.

                       What Youth Can Do:

**    Please help us to spread the word about the letter writing
campaign by telling your friends, support groups, and doctors about
it.  If we wish to send an effective message, it must be supported by
as many letters as possible.

**    Write a letter to the President and Mrs. Rodham Clinton.

 1. First, please tell your CFIDS story (how you got sick, your
symptoms, how it's affected your friends, school, doctors- whatever
is most important to you).

 2. Second, please be sure to close by letting them know how
important it is that they support increased funding for CFIDS in the
private and public sectors.

 3. Your letter should be hand-written, and one page long.  If you
wish to make a more personal impression, attach a small, wallet sized
photo to the upper left corner of your letter (see sample letters).

 4. Please mail your letters by April 15 to:

             The Youth Campaign for CFIDS Awareness
             c/o Rebecca Moore
             PO Box 247
             Warwick, New York 10990

We will mail all of the letters, TOGETHER, to the White House in time
for CFIDS Awareness Day.

[Information provided by Rebecca Moore.]


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

 >>>6.  Speaking event: Dr. James Jones in Buffalo. April 25

Dr. James Jones will speak on the topic of "CFS: A Realistic
Approach" on April 25, 10:30am at the Holiday Inn in Buffalo.
Although there is no charge for the event, pre-registration is
required (telephone 1-716-885-6062).  Dr. Jones is on the faculty of
the Univ. of Colorado School of Medicince and runs a CFS clinic at
the Ntional Jewish Center for Immunology and Respiratory Medicine.
This event is sponsored by the Millard Fillmaore Health, Education
and Research Foundation.

[Information provided by Lori Clovis.]


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


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