#74 October CFS medical conference in Boston
CFS-NEWS Electronic Newsletter
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Chronic Fatigue Syndrome Electronic Newsletter
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No. 74 July 20, 1998 Washington DC
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OCTOBER CFS MEDICAL CONFERENCE IN BOSTON:
AGENDA, REGISTRATION FORM, AND AACFS MEMBERSHIP
CONTENTS
>>>1. October CFS medical conference in Boston
>>>2. Tentative conference schedule
>>>3. Hotel and conference registration form
>>>4. AACFS membership
[This special edition of CFS-NEWS is devoted to providing information
about, and registration forms for, the upcoming AACFS medical
conference being held in October.
The publisher of CFS-NEWS takes particular note that Prof. Anthony
Komaroff will be chairing a "Forum to Discuss the Change of the Name
`Chronic Fatigue Syndrome'" at the conference on Monday, Oct. 12. ]
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>>>1. October CFS medical conference in Boston
The American Association for Chronic Fatigue Syndrome (AACFS) will
hold a major medical conference on CFS research and clinical issues
during October 12-14, 1998 in Boston. The articles below contain a
tentative schedule of conference events, the conference registration
form, and AACFS membership information.
General information about AACFS can be obtained by visiting their web
page at:
http://weber.u.washington.edu/~dedra/aacfs1.html
Below is a letter from AACFS President Dedra Buchwald, MD which
describes the conference and invites all to attend.
----------------------------------------------------
American Association for Chronic Fatigue Syndrome
"Dedicated to Promotion of Scientific Research and Improved Patient
Care" c/o Harborview Medical Center, 325 9th Ave., Box 359780,
Seattle WA 98104 Phone: 206-521-1932 Fax: 206-521-1930
E-mail address: deb...@u.washington.edu
Dear Colleague:
The 1998 AACFS biennial conference is fast approaching. We would
like to invite you to attend this important event that brings
together experts in CFS. This year's presentation will feature
Research, Clinical and Patient Conferences, all focused on
coordinating, stimulating, and exchanging ideas on CFS research,
education, and patient care. The conference will be held in
Cambridge, Massachusetts on October 10-12, 1998. Both the 1994 and
1996 conferences in Miami and San Francisco, respectively, were huge
successes and the 1998 conference promises to be no less informative
and exciting.
The Research Conference will offer a scientific forum to discuss new
findings in the area of epidemiology, microbiology, immunology,
physiology, and clinical and interdisciplinary studies. The program
is designed to encourage national and international cooperation and
shape public policy. It will take place on Saturday, October 10 and
Sunday morning, October 11 and will include peer reviewed oral and
poster presentations.
The Clinical Conference is designed for physicians and other health
professionals to advance their knowledge of the etiology, diagnosis
and treatment of CFS. It will offer the most current information on
laboratory tests, therapeutic interventions, biological and
neuropsychiatric aspects of CFS, and perspectives on disability and
rehabilitation. This interactive program will enhance communication
between researchers and clinicians in an effort to improve the
diagnosis and treatment of CFS. This conference is on Sunday
afternoon, October 11 and will include the Perpich Memorial Lecture
and Banquet featuring Dr. Robert Bennett as the keynote speaker.
The Patient Conference will offer up-to-date information on the
possible causes and course of the illness, as well as a review of the
Research Conference, and overviews of the biological aspects of CFS,
current laboratory tests, the latest treatment strategies,
disability, and rehabilitation issues. There will also be patient
presentations, special interest group meetings, lunch with CFS
experts, and sessions that will provide tools for improving patients'
health, functioning, and coping skills. The day-long Patient
Conference will be on Monday, October 12.
Health professionals will receive up to 21 CME or CEU credits for
attending the AACFS conference.
Below is the registration form which should be completed and mailed
to Certified Travel. They will be handling all hotel and travel
arrangements. Please call them if you have questions concerning
accommodations, travel arrangements, or conference registration. For
other information contact Debra Pralle, AACFS Administrative
Assistant (contact information above).
We encourage you to attend the 1998 AACFS conference as we expect it
to be extraordinarily interesting and productive. Please let us know
if we can be of any assistance. Thank you in advance and hope to see
you there!
Sincerely,
Dedra Buchwald, MD
President, AACFS
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>>>2. Tentative conference schedule
The following is a tentative schedule of conference events. It is
subject to many changes, and is shown here only to give a sense of
the intended breadth of the conference. To see the latest version of
the agenda, see the following web page on the Internet:
http://weber.u.washington.edu/~dedra/bostmeet.html
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Current Working Schedule (6 July 1998)
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= RESEARCH CONFERENCE =
= 8:00AM Saturday, October 10, 1998 =
= to 11:30AM Sunday, October 11, 1998 =
=======================================
Saturday, 10/10/98 AACFS Scientific Program Opens
8:00AM Welcome Anthony L. Komaroff MD, Conference Chair
8:00AM-9:30AM Scientific Session - Epidemiology
New Insights into the Epidemiology of CFS
Leonard Jason PhD, William Reeves MD,
Each Presentation will be followed by Q & A
Arthur Hartz MD PhD - Prognostic factors for persons with chronic
fatigue
Leonard Jason PhD - CFS Community-based study of prolonged fatigue
and chronic fatigue
Karen Jordan PhD - Prevalence and characteristics of pediatric CFS
Peter Manu MD - The overdiagnosis of CFS: a cross-sectional study
of a disabled population
Michele Reyes PhD - Update: Wichita population-based study of
fatiguing illness
Lana Tiersky PhD - The fluctuation and outcome of CFS over time
9:30AM-11:00AM Scientific Session - Physiology
Current Physiology Research Findings
Peter Behan MD, ChB, Benjamin Natelson MD
Presentations will be followed by Q & A
9:30AM-11:00AM Scientific Session - Clinical Studies
State of the Art in Clinical Studies
Co-Chairs: Dedra Buchwald MD & David Klonoff MD
Each Presentation will be followed by Q & A
Joseph Bellanti MD - The measurement of 5-HIAA urinary
concentrations as a predictive marker of
efficacy of NADA in CFS
Nancy Klimas MD - A phase 1 trial of autologous ex vivo expanded
lymph node derived cells as immunomodulatory
therapy in CFS
David Klonoff MD - Rehabilitation from work disability due to CFS
Andrew Lloyd MD - a prospective cohort study of post-infective
fatigue: illness characteristics and
relationship to immunological and psychological
disturbance
Greta Moorkens MD - Effect of growth hormone treatment in patients
with CFS: a preliminary study
David Strayer MD - Durability of therapeutic benefit with Ampligen
treatment of CFS as measured by the Karnofsky
Performance Score (KPS), Physical and quality of
life improvements manifest with Ampligen
treatment of CFS
11:00AM-11:30AM Open Q & A for Patients with
Chairs of Epidemiology and Clinical Studies Sessions
12:00PM-1:15PM Scientific Session - Immunology
Immunology - the Current State of the Science
Co-Chairs: Sudhir Gupta MD, PhD & Andrew Lloyd MD
Each Presentation will be followed by Q & A
Harvey Moldofsky MD - Disordered circadian sleep-wake
neuroendocrine and immune functions in CFS
Eng Tan MD - Development of an assay to quantitate autoantibodies
to lamin B1 in CFS
Ari Vojdani PhD - The role of interferon induced protein kinase RNA
(PKR) in abnormal apoptotic cell population in
patients with CFS
Stacy Wagner MS - Immunologic status correlates with severity of
physical symptoms in CFS patients
Quanwu Zhang PhD - Altered immune status in gulf veterans with CFS
1:15PM-2:30PM Scientific Session - Interdisciplinary/Psychiatry
Review of Current Interdisciplinary Studies
Co-Chairs: Mark Demitrack MD & Michael Sharpe MD
Each Presentation will be followed by Q & A
Noble Endicott MD - CFS: Evidence of premorbid anomalous patterns
of brain organization
Brigitta Evengard MD - On symptoms and life events surrounding the
onset of CFS
Denise Fairhurst PhD Candidate - Slowed processing in CFS
Richard Marlin PhD - A final common pathway for CFS, FM, and
chronic pain: physiologic, psychiatric or
behavioral
Norma Ware PhD - Culture, work and disability in CFS
2:45PM-6:00PM Scientific Peer Reviewed Poster Session
Moderated Discussion of Scientific Studies
Paul Levine MD, Chair
Presentations will be followed by Q & A
6:00PM-6:30PM Open Q&A for Patients with Chairs
of Immunology & Interdisciplinary Studies Sessions
6:30PM-7:00PM Biannual AACFS Membership Meeting
7:30PM-9:00PM Research Methodology: Five Concurrent Sessions
Leonard Jason PhD, Chair
Pediatric Issues
Bryan Carter PhD & Mark S. Smith MD
Diagnostic Criteria for the Case Definition
Albert Donnay MHS, Leonard Jason PhD & Charles Lapp MD
Psychosocial Assessment Issues
Fred Friedberg PhD & Gloria Furst OTR/L, MPH
Physiology and Immunology
Benjamin H. Natelson MD & William Gause MD
Rehabilitation Issues
Patricia Fennell CSW-R & Donald Uslan MSW, MBA
SUNDAY, OCTOBER 11, 1998
8:00AM-11:00AM AACFS Scientific Program (Continued)
8:00AM-8:45AM Scientific Session - Microbiology
Current Microbiology Research Findings
Co-Chairs: Dharam Ablashi DVM & Jay Levy MD
Each Presentation will be followed by Q & A
Dharam Ablashi DVM - Increased activation of HHV-6, but not HHV-7
or HHV-8, in CFS patients
Konstance Knox PhD - Persistent active HHV-6 infections in patients
with CFS
Robert Suhadolnik PhD - Biochemical dysregulation of the 2-5A/RNase
L antiviral defense pathway in CFS
8:45AM-11:00AM Scientific Session - Physiology
Current Physiology Research Findings
Co-Chairs: Peter Behan MD, ChB & Benjamin Natelson MD
Each Presentation will be followed by Q & A
Ellen Bazelmans PhD - Levels of activity and fatigue after extreme
exercise in CFS
Peter Behan MD, ChB - The symptoms of CFS are related to abnormal
ion channel function
Gijs Bleijenberg PhD - Identifying physical activity patterns in
CFS using actigraphic assessment
Kenny De Meirleir MD, PhD - RNase L dysfunction disorder (R.E.D.D.)
in CFS
Susan Horvath PhD Candidate - Characterization of RNase L
dysfunction in peripheral blood
mononuclear cell extracts from
patients with CFS
Lorna Paul MS - The effect of exercise on gait in patients with CFS
Arnold Peckerman PhD - CFS severity is related to reduced stroke
volume and diminished blood pressure
responses to mental stress
Sue Ann Sisto PhD - Cardiovascular responses during a cognitive
stressor before and after exercise in CFS
vs. sedentary healthy subjects
Julian Stewart MD, PhD - Patterns of orthostatic intolerance and
abnormalities in heart rate variability
suggest autonomic dysfunction in CFS during
adolescence
11:00AM-11:30AM Open Q & A for Patients with Chairs
of Microbiology and Physiology Sessions
============================
= CLINICAL CONFERENCE =
= Sunday, October 11, 1998 =
= 11:30AM to 9:00 PM =
============================
11:30AM-12:00PM Living with CFS: Voices of the Patients
Panel of Patients ( Speakers TBA)
12:00PM-1:00PM The Biological Aspects of CFS:
Summary of the State of Our Knowledge
Ted Dinan MD, Chair
John DeLuca PhD, Nancy Klimas MD
Presentations will be followed by Q & A
1:00PM-2:00PM CFS in Children and Adolescents
Co-Chairs: David Bell MD & Charles Lapp MD
Alan Gurwitt MD, James Jones MD, Karen Jordan PhD
Presentations will be followed by Q & A
2:00PM-2:30PM Diagnostic Test Strategies in Dealing with Fatigued
Patients
Kenneth De Meirleir MD, PhD, Chair
James Jones MD, David Klonoff MD
Presentations will be followed by Q & A
2:30PM-4:30PM Treatment Strategies:
Summary of the State of Our Knowledge
Dedra Buchwald MD, Chair
David Bell MD, Paul Cheney MD, Nelson Gantz MD, Charles Lapp MD
Daniel Peterson MD, Michael Sharpe MD
Presentations will be followed by Q & A
4:30PM-5:30PM Perspectives on Disability and Rehabilitation:
Summary of the State of Our Knowledge
Donald Uslan MA, MBA, Chair
Mark Bronstein Esq., Fred Friedberg PhD
Marya Grambs MS, Sue Ann Sisto PhD
Presentations will be followed by Q & A
5:30PM-6:30PM Psychiatric Morbidity and CFS:
Summary of the State of Our Knowledge
Leonard Jason PhD, Chair
Alan Gurwitt MD, Ian Hickie MD, Michael Sharpe MD
Presentations will be followed by Q & A
6:30PM-7:00PM Open Q & A for Patients with Members of the
Psychiatric Morbidity Panel
7:00PM-9:00PM Governor Rudy Perpich Memorial Lecture and Banquet
Keynote Speaker: Robert Bennett MD, FRCP, FACP, FACR
Professor of Medicine, Oregon Health Sciences
University
Topic: The Interrelationship of CFS and Fibromyalgia
Presentation of the Rudy Perpich Leadership Award and the AACFS
Junior Investigator Award will take place at the banquet
============================
= PATIENT CONFERENCE =
= Monday, October 12, 1998 =
= 9:00 AM to 6:00 PM =
============================
9:00AM-6:00PM MONDAY, OCTOBER 12, 1998
9:00AM-9:30AM Review of the Research Conference
Anthony Komaroff MD, Conference Chair
9:30AM-10:00 AM Living with CFS: Voices of the Patients
Panel of Patients (Speakers TBA)
10:00AM-11:15AM The Biological Aspects of CFS:
Summary of the State of Our Knowledge
Nancy Klimas MD, Chair
John DeLuca PhD, Ted Dinan MD
Presentations will be followed by Q & A
11:15AM-11:45AM Diagnostic Test Strategies in Dealing with Fatigued
Patients
James Jones MD, Chair
David Klonoff MD, Kenneth De Meirleir MD, Ph.D.
Presentations will be followed by Q & A
11:45AM-12:45PM CFS in Children and Adolescents
Summary of the State of Our Knowledge
Co-Chairs: David Bell MD & Charles Lapp MD
Alan Gurwitt MD, James Jones MD, Karen Jordan MD
Presentations will be followed by Q & A
12:45PM-2:00PM "Ask the Experts" Lunch
2:00PM-4:00PM Treatment Strategies:
Summary of the State of Our Knowledge
Paul Cheney MD, Chair
David Bell MD, Dedra Buchwald MD, Nelson Gantz MD
Charles Lapp MD, Daniel Peterson MD, Michael Sharpe MD
Presentations will be followed by Q & A
4:00PM-5:00PM CFS and Fibromyalgia: the Common Ground
Donald Goldenberg MD
Presentation will be followed by Q & A
5:00PM-6:00PM Perspectives on Disability and Rehabilitation:
Summary of the State of Our Knowledge
Marya Grambs MS, Chair
Mark Bronstein Esq., Fred Friedberg PhD,
Sue Ann Sisto PhD, Donald Uslan MA, MBA
Presentations will be followed by Q & A
6:00PM-7:30PM Two Concurrent Sessions
Forum to Discuss the Change of the Name `Chronic Fatigue Syndrome'
Anthony Komaroff MD, Chair
Workshop on Coping Strategies for CFS
Co-Chairs: Patricia Fennell CSW-R & Fred Friedberg PhD
=============================
= ADJUNCT MEETING =
= Tuesday, October 13, 1998 =
=============================
9AM-5PM United States Department of Health and Human Services'
Chronic Fatigue Syndrome Coordinating Committee
Location: Hyatt Regency Hotel, Dawes Room
575 Memorial Drive
Cambridge, Massachusetts
Federal Agencies Represented: Centers for Disease Control, Food and
Drug Administration, Health Resources & Services Administration,
National Institutes of Health, Social Security Administration
Preliminary Agenda
1) Issues of priorities
2) Agency updates regarding CFS research
3) Physician/patient education and information
4) Review of an approach to the current disease name
5) CFS in adolescents
6) Public testimony
7) Provide recommendations through written documents to Dr. David
Satcher
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>>>3. HOTEL and CONFERENCE REGISTRATION FORM
FOURTH INTERNATIONAL
AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME CONFERENCE
October 10-12, 1998
Hyatt Regency Hotel, 575 Memorial Drive, Cambridge, Massachusetts
MEETING and REGISTRATION COORDINATORS: CERTIFIED TRAVEL
21 Aviation Road Albany, New York 12205 U.S.A.
Phone: (800) 237-1517 or (518) 437-0691 Fax: (518) 437-0699
E-mail: tra...@compuserve.com
I. GENERAL INFORMATION
Name __________________________________ Title ____________________
Specialty ________________________________________________________
Required for continuing education certification
Institutional
Affiliation _____________________________________________________
Work Street Address ________________________________________________
City _______________________ State ____ Zip ________ Country _______
Work Phone (_____) _____-_________ Work Fax (_____) _____-_________
Home Street Address ________________________________________________
City _______________________ State ____ Zip ________ Country _______
Home Phone (_____) _____-_________ E-mail _________________________
_ _
AACFS Member |_| Yes |_| No
_ _
Send correspondence to |_| Work or |_| Home
_ _
Massachusetts Medical Society Member: (MMS) |_| Yes |_| No
II. CONFERENCE REGISTRATION FEES
The pre-registration discount for AACFS and MMS members is available
until September 16, 1998. Forms received after the deadline will be
charged an additional $50.00. You can save 25% by attending two
conferences and 35% by attending all three! By joining AACFS now
(memberships are $50.00) health professionals can save up to $100.00
on conference fees! If you are a patient, check to see if your
support group is a member of AACFS to obtain a membership discount.
I will be attending these conferences (check all that apply):
_ _ _
|_| Clinical |_| Research |_| Patient
M.D./Ph.D. R.N./M.S.W. Other Attendees
RESEARCH CONFERENCE ONLY
Pre-registered members $250 $200 $150
Pre-registered non-members $300 $250 $200
CLINICAL CONFERENCE ONLY
Pre-registered members $150 $100 $75
Pre-registered non-members $200 $150 $125
PATIENT CONFERENCE ONLY
Pre-registered members $150 $100 $50
Pre-registered non-members $200 $150 $100
RESEARCH & CLINICAL CONFERENCES
Pre-registered members $300 $225 $170
Pre-registered non-members $375 $300 $220
ALL THREE CONFERENCES
Pre-registered members $360 $260 $180
Pre-registered non-members $455 $360 $230
III. HOTEL INFORMATION AND RATES:
Hyatt Regency, Cambridge, Massachusetts USA
(Headquarters Hotel)
One night deposit is required to secure your reservation, payable by
check or credit card (VISA or MasterCard). The hotel deposit is
non-refundable if canceled after October 2, 1998. Group rates will
be extended to conference participants for 3 days before and after
the conference, based on availability of space. There is a $25.00
early departure fee. Parking is $15.00 per day.
Please book your reservation through Certified Travel. The following
discounted rates apply until September 9, 1998 so book early!
HOTEL RATES (excluding 12.45% tax) in U.S. funds. Check the type
of accommodation you wish to reserve.
_ _ _
|_| $170.00 per room/ per night / |_| single or |_| double
_
|_| $195.00 per room/ per night / triple
_
|_| $220.00 per room/ per night / quadruple
For alternative housing arrangements, please contact Certified
_
Travel. Check here if you need a roommate: |_|
Arrival Date/Time ___________________________________
Departure Date/Time ____________________________________
Names of persons occupying rooms:
1. ______________________________ 2. ______________________________
3. ______________________________ 4. ______________________________
Certified Travel guarantees the lowest possible discount airfares
for AACFS attendees! CALL TODAY!
IV. MEAL CHARGES
Prices for pre-paid sit down or box lunches are $24. On Sunday,
October 11, 1998, the AACFS will sponsor a dinner featuring Dr.
Robert Bennett as the keynote speaker. This dinner will be the
occasion for the awarding of the Rudy Perpich award. The cost per
person is $45 dollars. Monday will offer an opportunity to have
"lunch with the experts". For each day, check the date and the
number of meals you are ordering. Please enclose total amount with
your registration fee. Sandwiches will also be available for
purchase.
NOTE: There are very few restaurants in the immediate area of the
hotel.
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| | | Price| | |
| Date | Meal | each | Quantity | Total |
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| Saturday, 10/10/98 | Sit Down | $24 | | |
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| Sunday, 10/11/98 | Box lunch | $24 | | |
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| Monday, 10/12/98 | Sit Down | $24 | | |
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| Sunday Perpich Banquet | $45 | | |
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| Total Meal Charges | |
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Please describe any special dietary requirements that you have:
_____________________________________________________________
V. AACFS MEMBERSHIP
If you or your group are not yet members, you can join and take
advantage of the professional or support group member discount. A
membership form appears in the next section below. The AACFS is
comprised of health professionals and patient support groups who
share a common interest in education, patient care, and research on
CFS. Membership privileges also include a subscription to the
quarterly AACFS Newsletter and a discounted price for the special
1998 volume of the American Journal of Medicine dedicated to CFS.
One-year memberships are $50 for individuals and $200 (based on
ability to pay) for support groups payable by check, VISA or
MasterCard. Please return the membership form to Certified travel.
VI. REFUND POLICY
For a full refund, requests must be received by mail or fax TWO weeks
before the conference. No refunds will be made after 9/26/98. An
administrative fee of $50.00 will be deducted for all cancellations.
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| |
| VII. TOTAL CHARGES |
| |
| Hotel deposit $170/$195/$220: $ ________________________ |
| |
| Conference registration fee: $ ________________________ |
| |
| AACFS membership fee (include form): $ ________________________ |
| |
| Total meal charges from worksheet: $ ________________________ |
| |
| Total charges: $ ________________________ |
| |
| Amount of enclosed check: $ ________________________ |
| Payable to Certified Travel |
| |
| Amount charged to credit card: $ ________________________ |
| _ _ |
| |_| VISA |_| MasterCard Number: ____________________________ |
| |
| |
| Exp. Date: ___/___ Signature _________________________________ |
| |
| MAIL OR FAX THIS FORM TO CERTIFIED TRAVEL |
| |
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CERTIFIED TRAVEL FAX: (518) 437-0699
21 Aviation Road
Albany, New York 12205
U.S.A.
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>>>4. AACFS Membership Form
[If you are registering for the conference AND joining AACFS then you
should send the completed form below along with your other materials
to Certified Travel.]
MEMBERSHIP APPLICATION AND MEMBERSHIP RENEWAL FORM
American Association for Chronic Fatigue Syndrome
c/o Harborview Medical Center
325 Ninth Avenue, Box 359780, Seattle WA 98104
206-521-1932 (Telephone) 206-521-1930 (Fax)
First and Last Name ____________________________________
Mailing Address ____________________________________
Change of Address or
Affiliation (for renewals only) ____________________________________
Highest Degree Earned _______________ Year Awarded _______________
Major Field _______________ University _______________
Home Phone (____)_________ Work Phone (____)_________
Fax Number (____)_________ E-mail _______________
Professional License (State and Number): _________________________
Professional Involvement in CFS (i.e., research, clinical):
________________________________________________________________
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
For Patient Support Groups:
Name of Group _____________________ President ______________________
Number of Members ________________ Phone # (____)__________________
Mailing Address _________________________________________________
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
All memberships in the AACFS include:
* Discount price for the "Journal of Psychiatric Research" &
"American Journal of Medicine"
* Reduced registration fees at the bi-ennial conference
I wish to apply for the following membership category (please check
the appropriate boxes):
_ _
|_| Mew Member |_| Membership Renewal
_ _
|_| Regular Membership - $50 |_| Non-Profit Institution - $500
_ _
|_| Other Institution - $1,000 |_|
_
|_| Patient Support Group, $200 recommended; based on ability to pay
_
|_| Please include my order for the Journal of Psychiatric Research
(special issue - $10.00)
_
|_| I also wish to contribute to
the Rudy Perpich Memorial Fund: _____________________________
Signature: _________________________________ Date: ___________
Total amount remitted: _______________________________________
_ _
|_| Visa |_| MasterCard #: ________________________ Exp. date ____
Please make check or money order payable to the "AACFS".
Please pass a copy of this form to parties who might be
interested in joining the AACFS. Thank you!
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| Office use Only: Check # _________________________ |
| |
| MC/Visa Auth. Code: _________________________ |
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---------- end of membership form ----------
===================================================================
CFS-NEWS (ISSN 1066-8152) is an international newsletter published
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