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Chronic Fatigue Syndrome Electronic Newsletter
--------------------------------------------------------------------
No. 38 August 22, 1994 Washington DC
--------------------------------------------------------------------
I.F.M.E.A. MEDICAL UPDATE /
OCTOBER CONFERENCES IN FLORIDA
CONTENTS
>>>1. I.F.M.E.A. Medical Update
>>>2. October medical conferences in Florida
>>>3. Martin publishes study on "stealth" virus
>>>4. Networking news: call to create sci.med.immunology
NOTE: Your vote by e-mail can help to create a new discussion group
about immune illnesses including CFS. Be sure to read article 4
below and act today.
-------------------------------------------------------------------
>>>1. I.F.M.E.A. Medical Update
The International Federation of Myalgic Encephalomyelitis
Associations (IFMEA) compiles a quarterly medical update which
contains abstracts and reviews, written by medical professionals, of
current research on CFS/CFIDS/ME. The full text of the Update is
available from the national organizations listed at the end of this
article. The following is a list of the publications which are
summarized and reviewed in two recent editions of the Update:
IFMEA MEDICAL UPDATE Volume 5, number 41st December 1993
IMMUNOLOGY/VIROLOGY
Bowles, NE., Bayston, TA., Zhang, H-Y., Doyle, D., Lane, RJM.,
Cunningham, L and Archard, LC. Persistence of enterovirus RNA in
muscle biopsy samples suggests that some cases of chronic fatigue
syndrome result from a previous, inflammatory viral myopathy.
Journal of Medicine, 1993, 24, 145-160.
MUSCLE RESEARCH
Preedy, VR., Smith, DG, Salisbury, JR and Peters, TJ. Biochemical and
muscle studies in patients with acute onset post-viral fatigue
syndrome. Journal of Clinical Pathology, 1993, 46, 722-726.
NEUROLOGY\PSYCHIATRY
Ray, C., Phillips, L and Weir, WRC. Quality of attention in chronic
fatigue syndrome: subjective reports of everyday attention and
cognitive difficulty, and performance on tasks of focused attention.
British Journal of Clinical Psychology, 1993, 32, 357-364.
Sandman, CA., Barron, JL., Nackoul, K., Goldstein, J and Fidler, F.
Memory deficits associated with chronic fatigue immune dysfunction
syndrome. Biological Psychiatry, 1993, 33, (8-9), 618-623.
MISCELLANEOUS
Brook, MG., Bannister, BA and Weir, WRC. Interferon-_ therapy for
patients with chronic fatigue syndrome. Journal of Infectious
Diseases, 1993, 168, 3, 791.
Chester, AC. Chronic fatigue cured by nasal surgery. Maryland
Medical Journal, 1993, 42, 4, 365-367.
Heuft, L and Bravenboer, B Functional hypoglycaemia postulated as a
cause of chronic fatigue syndrome. British Medical Journal, 1993,
307, 735.
Ridsdale, L and Mandela, S. Fatigue varies according to where it is
measured. British Medical Journal, 1993, 307, 870.
Simpson, LO. Chronic fatigue syndrome. New Zealand Medical Journal,
1993, 106, 211-212.
GENERAL INFORMATION AND RESEARCH ON OTHER DISORDERS
Bentall, RP., Wood, GC., Marrinan, T., Deans, C and Edwards, RHT. A
brief mental fatigue questionnaire. British Journal of Clinical
Psychology, 1993, 32, 375-379.
Chambers, MJ and Docktor, BJ. Fatigue scale lacks adequate
validation. Psychiatry Research, 1993, 46, 2, 207-208
Cohen, ML and Quinter, JL. Fibromyalgia syndrome, a problem of
tautology. Lancet, 1993, 342, 906-909.
Devins, GM., Edworthy, SM., Seland, TP., Klein, GM., Paul, LC and
Mandin, H. Differences in illness intrusiveness across rheumatoid
arthritis, end-stage renal disease, and multiple sclerosis. Journal
of Nervous and Mental Disease, 1993, 181, 6, 377-381.
Folkman, S., Chesney, M., Pollack, L and Coates, T. Stress, control,
coping, and depressive mood in human immunodeficiency virus-positive
and -negative gay men in San Francisco. Journal of Nervous and Mental
Disease, 1993, 181, 7, 409-416.
Griep, EN., Boersma, JW and de Kloet, ER. Altered reactivity of the
hypothalamic-pituitary-adrenal axis in the primary fibromyalgia
syndrome. Journal of Rheumatology, 1993, 20, 469-474.
Kemp, BA and Gora, ML. Amantadine and fatigue of multiple sclerosis.
Annals of Pharmacotherapy, 1993, 27, 893-895.
Moser, DK., Clements, PJ., Brecht, M-L and Weiner, SR. Predictors of
psychosocial adjustment in systemic sclerosis. Arthritis and
Rheumatism, 1993, 36, 1398-1405.
Reichlin, S. Neuroendocrine-immune interactions. New England Journal
of Medicine, 1993, 329, 1246-1253.
Simon, GE., Daniell, W., Stockbridge, H., Claypoole, K and
Rosenstock, L. Immunologic, psychological, and neuropsycho-logical
factors in multiple chemical sensitivity. Annals of Internal
Medicine, 1993, 119, 2, 97-103.
Walker, EA., Katon, WJ and Jemelka, RP. Psychiatric disorders and
medical care utilization among people in the general population who
report fatigue. Journal of General Internal Medicine, 1993, 8,
436-440.
Wray, BB., Gaughf, C., Chandler, FW., Berry, SS., Latham, JE., Wood,
L and DuRant, RH. Detection of Epstein-Barr virus and
cytomegalovirus in patients with chronic fatigue. Annals of Allergy,
1993, 71, 3, 223-226.
LOST AND FOUND
Demitrack, MA, Gold, PW., Dale, JK., Krahn, DD, King, MA and Straus,
SE. Plasma and cerebrospinal fluid monoamine metabolism in patients
with chronic fatigue syndrome: preliminary findings. Biological
Psychiatry, 1992, 32, 1065-1077.
==================================================================
IFMEA MEDICAL UPDATE Volume 6, number 21st June 1994
IMMUNOLOGY/VIROLOGY
----
MUSCLE FUNCTION
Connolly, S., Smith, DG., Doyle, D and Fowler, CJ. Chronic fatigue:
electromyographic and neuropathological evaluation. Journal of
Neurology, 1993, 240, 7, 435-438.
PSYCHOLOGY
Schweitzer, R., Robertson, DL., Kelley, B and Whiting, J. Illness
behaviour of patients with chronic fatigue syndrome. Journal of
Psychosomatic Research, 1994, 38, 1, 41-49.
LONGITUDINAL RESEARCH
Wilson, A., Hickie, I., Lloyd, A., Hadzi-Pavlovic, D., Boughton, C.,
Dwyer, J and Wakefield, D. Longitudinal study of outcome of chronic
fatigue syndrome. British Medical Journal, 1994, 308, 756-759.
REVIEWS
Rebora, A and Drago, F. Chronic fatigue syndrome: a novel disorder
with cutaneous manifestations. Dermatology, 1994, 188, 3-5.
MISCELLANEOUS
Abbot, NC., Spence, VA., Lowe, JG., Potts, RC., Hassan, AH., Belch,
JJF and Beck, JS. Immunological findings may vary between
popula-tions. British Medical Journal, 1994, 308, 1299.
Auger, PL., Gourdeau, P and Miller, JD. Clinical experience with
patients suffering from a chronic fatigue-like syndrome and repeated
upper respiratory infections in relation to airborne
molds. American Journal of Industrial Medicine, 1994, 25, 41-42.
Caffery, BE., Josephson, JE and Samek, MJ. The ocular signs and
symptoms of chronic fatigue syndrome. Journal of the American
Optometric Association, 1994, 65, 187-191.
Cox, DL and Findley, LJ. Is chronic fatigue syndrome treatable in an
NHS environment? Clinical Rehabilitation, 1994, 8, 1, 76-80.
Delamothe, T. Look at M.E. British Medical Journal, 1994, 308, 798.
Demitrack, MA. Chronic fatigue syndrome: a disease of the
hypothalamic-pituitary-adrenal axis? Annals of Medicine, 1994, 26,
1, 1-5.
Dowson, D. The treatment of chronic fatigue syndrome by
complimentary medicine. Complimentary Therapies in Medicine, 1993,
1, 9-13.
Dyment, PG. Frustrated by chronic fatigue? Try this systematic
approach. Physician and Sportsmedicine, 1993, 21, 11, 47-54.
Fleming, C. The glass cage. British Medical Journal, 1994, 308,
797.
Hotoff, M. Repetitive strain injury and myalgic encephalomyelitis.
British Medical Journal, 1994, 308, 659-670.
Ho-Yen, DO and Grant, A. Self help groups give valuable support.
British Medical Journal, 1994, 308, 1298-9.
Ho-Yen, DO and Shanks, M. Prevalence study overlooked. British
Medical Journal, 1994, 308, 1299.
Jiang, D and Franks, P. Analysis of 50 cases of M.E. treated with
Chinese herbs and acupuncture. Journal of Chinese Medicine, 1994,
44, 13-20.
Judy, WV and Folkers, K. Management of chronic fatigue syndrome
patients with CoQ10. Paper presented at the conference `Biomedical
and Clinical Aspects of Coenzyme Q', Stockholm, Sweden, November
11-13, 1993.
Lawrie, SM and Pelosi, AJ. Chronic fatigue syndrome: prevalence and
outcome. Psychosocial factors are important for management. British
Medical Journal, 1994, 308, 732-733.
[See also letters from Goudsmit, EM., Anderson, N., Howes, S.,
Fleming, C., Ho-Yen DO and Shanks, M., Ho-Yen DO and Grant, A,
Shepherd, C and Airs V et al, British Medical Journal, 1994, 308,
1297-1301.]
Pawlikowska, T., Chalder, T., Hirsch, SR., Wallace, P., Wright, DJM
and Wessely, SC. Population based study of fatigue and psychological
distress. British Medical Journal, 1994, 308, 763-766.
Saish, SGN., Deale, A., Gardner, WN and Wessely, S.
Hyper-ventilation and chronic fatigue syndrome. Quarterly Journal of
Medicine, 1994, 87, 63-67.
CONFERENCE REPORT
[Reviews and comments on about half of the 51 articles and abstracts
based on the proceedings of a conference held in Albany, NY, 3-4
October 1992 which appeared in Clinical Infectious Diseases, January
1994, 18, Suppl. 1.]
RESEARCH ON OTHER DISORDERS
Fillion, L., Belles-Isles, M., Lemyre, L and Roy, R. Reliability of
lymphocyte proliferation assays. Stress Medicine, 1994, 10, 43-48.
Fisk, JD., Pontefract, A., Ritvo, PG., Archibald, CJ and Murray, TJ.
The impact of fatigue on patients with multiple sclerosis. Canadian
Journal of Neurological Sciences, 1994, 21, 9-14.
Friedman, J and Friedman, H. Fatigue in Parkinson's disease.
Neurology, 1993, 43, 10, 2016-2018.
George, MS., Ketter, TA and Prost, RM. Spect and Pet imaging in mood
disorders. Journal of Clinical Psychiatry, 1993, 54, 11 (suppl.),
6-13.
Hurwicz, M-L and Berkanovic, E. The stress process in
rheumatoidarthritis. Journal of Rheumatology, 1993, 20, 1,
1836-1844.
Keller, R. Psychomotor syndromes, somatization and somatoform
disorders. Psychotherapy and Psychosomatics, 1994, 61, 4-24.
Krol, B., Sanderman, R., Suurmeijer, Th., Doeglas, D., van Rijswijk,
M and van Leeuwen, M. Disease characteristics, level of self-esteem
and psychological well-being in rheumatoid arthritis patients.
Scandinavian Journal of Rheumatology, 1994, 23, 8-12.
Lyketsos, CG., Hoover, DR., Guccione, M., Senterfitt, W., Dew, MA.,
Wesch, J., VanRaden, MJ., Treisman, GJ and Morgenstern, H.
Depressive symptoms as predictors of medical outcomes in HIV
infection. Journal of the American Medical Association, 1993, 270,
21, 2563-2567.
Mller, A., Wiedemann, G., Rohde, U., Backmund, H and Sonntag, A.
Correlates of cognitive impairment and depressive mood disorder in
multiple sclerosis. Acta Psychiatrica Scandinavica, 1994, 89,
117-121.
Rodriguez, M., Siva, A., Ward, J., Stolp-Smith, K., O'Brien, P and
Kurland, L. Impairment, disability, and handicap in multiple
sclerosis: a population-based study in Olmsted County, Minnesota.
Neurology, 1994, 44, 28-33.
Tate, DG., Forchheimer, M., Kirsch, N., Maynard, F and Roller, A.
Prevalence and associated features of depression and psychological
distress in polio survivors. Archives of Physical Medicine and
Rehabilitation, 1993, 74, 1056-1060.
Yardley, L. Contribution of symptoms and beliefs to handicap in
people with vertigo: a longitudinal study. British Journal of
Clinical Psychology, 1994, 33, 101-113.
UNDER THE MICROSCOPE (The opinions expressed in `under the
microscope' are those of the contributor and do not necessarily
reflect the views of the editorial team, or the members of IFMEA.)
MacLean, G and Wessely, S. Professional and popular views of chronic
fatigue syndrome. British Medical Journal, 1994, 308, 776-777.
BOOK REVIEW
Collinge, W. Recovering From M.E. A Guide To Self-Empowerment.
London: Souvenir Press. 1994. Pb. 232pp. 9.99
Stewart, A. Tired All The Time. London: Optima. 1993. Pb. 346 pp.
7.99 pounds.
=====================================================================
These Updates were compiled by IFMEA's Information Unit with help
from Drs. EM Goudsmit, Dr. A. Macintyre, Dr. C. Shepherd, Ms. Miriam
Gallacher RN, Mr. Guido Toro, Mr. David Axford and Mrs. S. Howes.
The International Federation of M.E. Associations (IFMEA)
disseminates information about M.E./CFIDS and related disorders. The
organisation cannot dispense medical advice, nor does it endorse any
medical product.
--------------------------------------------
To obtain copies of the full text (not shown here) of the IFMEA
Medical Update which summarizes and reviews the publications cited
above, contact one of the member national organizations listed below:
USA: CFIDS Association, P O Box 220398, Charlotte, NC 28222-0398
the IFMEA Medical Update is available at $3 per copy
UK: M.E. Association, Box 8, Stanford-le-Hope, Essex SS17 8EX
annual subscription to quarterly IFMEA Medical Update is #8/yr.
Netherlands: M.E. Stichting, Postbus 57436, 1040 BH Amsterdam
the IFMEA Medical Update is summarized in the MEdium newsletter
(printed in Dutch only, 30 guilders/yr.); the full text of the Update
is available for the cost of copying & postage -- contact the office
to ask what the exact price is (it is different for each issue)
Norway: Norges M.E. Forening, Eikveien 96A, 1345 Osteras
for now, the IFMEA Medical Update is provided at no charge to
members (membership dues are 200 krona per year)
[The Information above was provided by IFMEA and through the
assistance of David Axford.]
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>2. October medical conferences in Florida
[The AACFS research and clinical conferences have been announced
previously in CFS-NEWS. They will take place on October 7 through 10
in Fort Lauderdale, Florida USA. Below is the official agenda
(except for the faculty description), and registration information
appears at the end. Note that pre-registration has been extended
until September 1. Also, members of national groups such as the
CFIDS Association of America and the National CFS and FM Association
will qualify for the discount conference registration rates. Lastly,
the conference fee structure for non-members might appear
inconsistent but it does reflect the official policy.]
AACFS
American Association for Chronic Fatigue Syndrome
RESEARCH CONFERENCE
Friday, Saturday and Sunday October 7,8 and 9, 1994
American Association for Chronic Fatigue Syndrome
CLINICAL CONFERENCE
Sunday and Monday October 9 and 10, 1994
CHRONIC FATIGUE SYNDROME
October 7-10, 1994
(Columbus Day Weekend)
Bonaventure Hotel & Resort
Fort Lauderdale, Florida
Sponsored by
American Association for Chronic Fatigue Syndrome
Florida Dept. of Health & Rehabilitation Services
National Institutes of Health (NIH)
University of Miami School of Medicine
U.S. Centers for Disease Control and Prevention (CDC)
AMERICAN ASSOCIATION FOR CHRONIC FATIGUE SYNDROME is a non-profit
organization of physicians, research scientists, health
professionals and organizations interested in promoting the exchange
of ideas on CFS research and patient care. Through scientific and
clinical conferences, AACFS brings together physicians, researchers,
patients and other individuals to discuss current findings on CFS.
CFS (CHRONIC FATIGUE SYNDROME) Fatigue is the leading diagnostic
dilemma in primary practice -- estimated at 24% in any clinical
population (JAMA 1988). As a non-specific symptom, diagnosis
presents a formidable task for the clinician.
Chronic Fatigue Syndrome (CFS) An increasing body of literature
indicates a specific chronic illness characterized by fatigue,
neurologic and immunologic disorders. CFS is a growing cause of
disability worldwide. What is its cause? How is it distinguished
from other diseases?
OBJECTIVES
AACFS Research Conference: An open scientific meeting on CFS
utilizing peer review, the conference will provide a forum to
discuss new information, shape public policy, and encourage
international cooperation.
AACFS Clinical Conference: Knowledge of the causes, diagnosis, and
treatment of CFS has advanced dramatically in recent years. The
conference is designed for physicians and other health professionals
to provide choices for a cost-effective diagnostic workup and up-to-
date treatments.
ACCREDITATION
The University of Miami School of Medicine is accredited by the
Accreditation Council for Continuing Medical Education (ACCME) to
sponsor continuing medical accreditation for physicians.
COURSE HOURS
AACFS Research & Clinical Conference: The University of Miami School
of Medicine designates this continuing medical education activity
for 31.5 credit hours in Category 1 of the Physician's Recognition
Award of the American Medical Association. This program has been
reviewed and is acceptable for 33 Prescribed Hours by the American
Academy of Family Physicians.
AACFS Clinical Conference Only: The University of Miami School
of Medicine designates this continuing medical education activity
for 17.5 credit hours in Category 1 of the Physician's Recognition
Award of the American Medical Association. This program has been
reviewed and is acceptable for 17.5 Prescribed Hours by the American
Academy of Family Physicians. Nursing Contact Hours from the
Florida State Board of Nursing have been applied for through Jackson
Memorial Hospital Dept. of Nursing Education, Provider #27H00008.
************************
AGENDA
AACFS Research Conference
This Research Conference employs the traditional scientific "Peer
Review" format. Research abstracts were received from around the
world and judged by a scientific review panel. Selected entries will
be presented on the program. Those will be announced shortly before
the scientific meeting.
Day I - Friday, October 7
9:00 - 9:30 AM Keynote Speech: California Health Dept.'s Response
to CFS, George Rutherford MD
9:30 - 12:00 PM Research Session I - Epidemiology
Chair: Dedra Buchwald MD
Introductory Speech: History of Epidemiology of
CFS, William C Reeves MD
Presentations of Peer-Reviewed Research in Epidemiology
followed by Questions from the floor and Analysis by
Rapporteur
12:00 - 2:00 PM Luncheon Workshop #1 or 2
#1- Using Existing Databases for Epidemiological
Studies; Chair: Leonard Jason, PhD
#2- NIH Research Grant Opportunities: Application
and Review Process; Chair: Marcel Pons, MD
2:00 - 4:30 PM Research Session II - Interdisciplinary Studies
Chair: Mark Demitrack MD
Introductory Speech: Psychoneuroendocrinology
Mark Demitrack MD
Presentations of Peer-Reviewed Research in Interdisciplinary
Studies followed by Questions from the floor and Analysis by
Rapporteur
4:30 - 7:00 PM Scientific Poster Sessions
Moderated Exhibit of Selected Scientific Studies
with individual Q & A
Moderators: Dharam Ablashi DVM
Nancy Klimas MD
Paul Levine MD
Day II - Saturday, October 8
8:30 - 11:30 AM Research Session III - Microbiology and Immunology
Chairs: Dharam Ablashi DVM, Jay Levy MD
Introductory Speech: Gender Differences and the
Immune Response; Joseph G. Cannon, PhD
Presentations of Peer-Reviewed Research in Microbiology and
Immunology followed by Questions from the floor and Analysis
by Rapporteur
11:30 - 1:30 PM Luncheon Workshops #3, #4 or #5
#3- Instruments for Use in Clinical and Research
Settings; Chair: Dedra Buchwald, MD
#4- Immunology
Chairs: Jay Levy MD, Nancy Klimas MD
#5- Neuroimaging Techniques and Neurocognitive
Testing: Interpreting results in CFS
Chairs: Helen Mayberg MD, Karen Schmaling MD
or
Scientific Poster Sessions
1:30 - 4:30 PM Research Session IV - Physiology
Chair: James Jones, MD
Introductory Speech: Pathologic & Physiologic
Correlates of SPECT Scans; Helen Mayberg MD
Presentations of Peer-Reviewed Research in Physiology
followed by Questions from the floor and Analysis by
Rapporteur
4:30 - 6:30 PM AACFS First Annual Business Meeting
Chair: Paul Levine MD, President, AACFS
7:00 - 8:30 PM Banquet; Keynote Address: U.S. Government Policy
and CFS. Speaker: Philip Lee MD, U.S. Ass't
Secretary for Health
Day III - Sunday, October 8
8:30 - 11:30 AM Research Session V - Clinical Studies
Chair: Anthony Komaroff MD
Introductory Speech: Clinical Research in CFS:
Opportunities and Pitfalls; Anthony Komaroff MD
Presentations of Peer-Reviewed Research in Clinical Studies
followed by Questions from the floor and Analysis by
Rapporteur
(This session is open to Clinical Program attendees)
------------
AACFS Clinical Conference
11:30 - 12:30 PM Clinical Session I
Chair: Nancy Klimas MD
Informal Review of Basic Research Presentations
and Open Q & A Session
12:30 - 1:30 PM Lunch Break or
Luncheon Forum A: "Fostering International
Cooperation in Research and in Patient Care"
Chair: Nancy Klimas MD
Panel: Umberto Tirelli MD, Gerhard Krueger MD
1:30 - 2:30 PM Clinical Session II
Chair: Mark Loveless MD
Informal Review of Clinical & Epidemiological Research
Presentations and Open Q & A Session
2:30 - 3:15 PM Clinical Session III
Neuroimaging Applications in CFS: Use and Misuse
Speaker: Helen Mayberg MD
3:15 - 4:30 PM Clinical Session IV
Primary Care Forum: "Ask the Experts"
Chair: Anthony Komaroff
Panel: David S Bell MD, Paul Cheney MD PhD, James
Jones MD, Nancy Klimas MD, Mark Loveless MD
Panel of world experts on clinical management of CFS will
discuss answers to key questions on CFS, state of the art on
diagnosis and treatments, followed by Open Q & A on clinical
management.
4:30 - 5:15 PM Clinical Session V
Fibromyalgia & CFS: Overlapping or Exclusive
Diagnoses?
Speaker: Don L Goldenberg MD
5:15 - 7:00 PM Clinical Poster Sessions
Exhibit of Selected Clinical Studies with
Individual Q & A and
Dinner Break
7:00 - 8:30 PM Workshops # 6 or # 7
#6- Psychological Aspects of CFS
Chair: Fred Friedberg PhD
Panel: Patricia Fennell CSW Psych., Karen
Schmaling PhD, Leonard Jason PhD
#7- Advocacy for CFS
Chair: Gov. Rudy Perpich
Speakers: Tom Sheridan, TBA
Day IV - Monday, October 10
8:30 - 9:30 AM Clinical Session VI
Gulf War Syndrome & CFS: Remarkable Similarities
Speaker: Major General Ronald Blanck MD
9:30 - 10:30 AM Clinical Session VII
Assessing & Documenting Functional Disability
Chairs: Mark Loveless MD, Daniel Peterson MD
Panel: Lyle Lieberman JD, Karen Erzine MD, Michael
Kita MD
10:30 - 11:30 AM Clinical Sessions VIII
Rehabilitation Options
Chair: Gloria Furst OTR/L MPH
Speaker: Jeanne E Hicks MD
11:30 - 1:00 PM Luncheon Forum B: "Doctor to Doctor"
Roundtable discussion on physician burnout, chronicity,
undefinable outcomes & other problematic issues in CFS patient
management.
Chairs: Nancy Klimas MD, Mark Loveless MD,
Jonathan Rest MD
Luncheon Forum C: "Coping over the Long Haul"
Strategies for dealing with an unpredictable, multi-symptom
chronic illness.
Chair: Fred Friedberg PhD,
Panel: Linda Miller Iger PhD, Maggie McKenzie
1:00 - 2:00 PM Clinical Session IX
CFS in Children and Adolescents: Special
Considerations
Speakers: David Bell MD, James Jones MD
2:00 - 3:00 PM Clinical Session X
NIH and the Women's Health Research Agenda
Speaker: Judith H La Rosa PhD
3:00 - 4:00 PM Clinical Session XI
"Alternative" Therapies: How Useful?
Chair: John Renner MD
Panel: Brian Berman MD, Aaron Primack MD, Jonathan
Rest MD
4:00 - 4:30 PM Closing Remarks
Paul H Levine MD
4:30 - 6:00 PM Workshops #8 or #9
#8- CFS Rehab Case Studies
Chair: Gloria Furst OTR/L MPH
#9- Applying for and Retaining Social Security &
Private Disability
Chair: Lyle Lieberman esq.
Faculty [deleted, descriptions of 39 participants]
****************
HOTEL REGISTRATION FORM
AACFS Chronic Fatigue Syndrome Research & Clinical Conferences
Friday - Monday, October 7 - 10, 1994
(Columbus Day Weekend)
Name _________________________________________________________
Last First
Title ________________________________________________________
Affiliation __________________________________________________
Address ______________________________________________________
City ________________________________ State ____ Zip _________
Country ______________________________________________________
Phone Number _________________________________________________
Hotel Rates (excluding taxes) in US funds:
_
|_| $108 per room/per night, single or double (Bonaventure)
_
|_| $ 60 per room/per night, single or double
(Holiday Inn -- transportation necessary)
_ _
# of people __________________ |_| (1 bed) |_| (2 beds)
(For third or fourth adult occupying guest room, add $25 per
person. Group rates extended to conference participants three days
before and after conference, based on availability of space.)
Arrival Date __________________ Departure Date ________________
# of nights ____________________________
Deposit of $108 for the Bonaventure or $60 for the Holiday Inn per
room is required to secure reservation. Checks (payable to
Certified Travel) or credit cards are accepted. Hotel deposit is
non-refundable if canceled within 72 hrs or less before arrival.
_ _ _
|_| Visa |_| Mastercard |_| American Express
Card Number ______________________________________________
Expiration Date __________________________________________
Signature ________________________________________________
****************
CONFERENCE REGISTRATION FORM
AACFS Chronic Fatigue Syndrome Research & Clinical Conferences
The Bonaventure Hotel & Resort
Fort Lauderdale, Florida
Friday - Monday, October 7 - 10, 1994
_
|_| Research Conference Only
_
|_| Clinical Conference Only
_
|_| Both Conferences
Registration Fees (Please circle appropriate fee)
(Pre-registration Deadline September 1, 1994)
MDs/Other All Other
Professionals -- CLINICAL ONLY -- Attendees
$100 Pre-registration Members* $60
$150 On-site Members* $75
$150 Pre-register Non-members $75
$200 On-site Non-members $90
(Clinical fees include Session V of Research Program)
_____________________________________________________________
-- RESEARCH ONLY --
$200 Pre-registration Members* $200
$250 On-site Members* $250
$250 Pre-register Non-members $250
$300 On-site Non-members $300
_____________________________________________________________
-- BOTH CONFERENCES --
$250 Pre-registration Members* $125
$300 On-site Members* $175
$300 Pre-register Non-members $175
$350 On-site Non-members $225
_____________________________________________________________
$30 Keynote Dinner Sat. 10/8 $30
__________ __________
TOTAL FEES TOTAL FEES
MDs/Professionals Other Attendees
includes CME credit
Registration refund for CFS patients due to illness.
Please fill out the credit card information for the hotel deposit
(see above) and enclose a separate check for Conference registration
fee.
OR
Send one combined check for both the hotel deposit and the
Conference registration fees.
OR
_ _
Charge Registration Fees to: |_| Visa |_| Mastercard
(Sorry, American Express not usable for registration fees.)
Make all checks payable to For more
CERTIFIED TRAVEL ASSOCIATES information, call
... and send both forms to CERTIFIED TRAVEL at:
CERTIFIED TRAVEL ASSOCIATES
21 Aviation Road (518) 437-0691
Albany, New York 12205 (800) 237-1517
* If your support group has joined AACFS, you may use the member
discount.
For Discount Airfares, call ... CERTIFIED TRAVEL (800) 237-1517
Certified Travel is the Official Travel Coordinator for AACFS.
Certified donates its services to AACFS, so please book travel with
them. Lowest airfares guaranteed.
[Thanks to Leslie Boyer and Certified Travel for assistance.]
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>3. Martin publishes study on "stealth" virus
Dr. W. John Martin has published a paper in the American Journal of
Pathology which describes intriguing characteristics a virus isolated
from a CFS patient. This is the same kind of virus which Dr. Martin
had described in years past as being a spumavirus, but which he now
refers to as a "stealth" virus because of its apparent ability to
evade detection by the human immune system, according to Dr. Martin's
work. Other reported characteristics of this virus are: it appears
to be very similar to human cytomegalovirus (CMV), so much so that
Martin speculates that it may have evolved from CMV; it can also
infect other animal species; and it can establish a persistent
infection over many years.
The following is the citation for this paper: W John Martin, Li
Cheng Zeng, Khalid Ahmed, Manju Roy. Cytomegalovirus-Related Sequence
in an Atypical Cytopathic Virus Repeatedly Isolated from a Patient
with Chronic Fatigue Syndrome. American Journal of Pathology
145(2):440-452.
Dr. Martin has recently discussed in public his related work in
developing a drug named Epione which may be effective in
counteracting this stealth virus.
Dr. Martin will be giving a public talk on this research in Los
Angeles on Sunday, August 28, from 2 to 4 pm. The talk will be held
at the University of Southern California Health Sciences Center at
1975 Zonal Road, and is being sponsored by the Los Angeles CFIDS
Association. For details about the location and parking, phone (818)
458-9092. CFS-NEWS will report more on this topic as further
information becomes available.
[Patrick Wilkie developed much of the information on this story.
Thanks also to Sharon Horejs and Neenyah Ostrom.]
-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-
>>>4. Networking news: call to create sci.med.immunology
A new newsgroup on the Usenet network is being proposed to enable a
scientific discussion about immune illnesses, including CFS. Camilla
Cracchiolo, R.N. has called for the creation of the new group and the
proposal is undergoing a vote this week.
Under the rules of the Usenet network, votes are sent in by e-mail
and the proposal will pass only if (A) there is a 2/3 majority in
favor of the proposal, and (B) there are at least 100 more Yes votes
than No votes.
The voting period began August 3rd and votes must be received by
Thursday, August 25, by midnight UTC (8 pm Eastern Time). Below is
the official "Call For Votes" notice. Please note carefully its
instructions on voting, including the address it is to be sent to,
text that must appear in the Subject line, and text that must appear
in the body of the message.
Below is a copy of the official notice. Although it refers to a 2nd
copy also to be sent out, that has already been distributed (same
text as the original shown below).
------------------------------------------------------------------
FIRST CALL FOR VOTES (of 2)
unmoderated group sci.med.immunology
Newsgroups line:
sci.med.immunology Medical/scientific aspects of immune illness.
Votes must be received by 23:59:59 UTC, 25 August 1994.
This CFV will also be posted on the Immune mailing list at
immune@weber.ucsd.edu and the psychoneuroimmunology mailing list at
pni@ccat.sas.upenn.edu. It will also appear in the CFS News.
This vote is being conducted by a neutral third party. For voting
questions only contact Dave Cornejo <dave@dogwood.com>. For
questions about the proposed group please contact Camilla Cracchiolo
<camilla@netcom.com>. Writing the vote taker about immunology will
get you nowhere :-)
CHARTER
The purpose of this group is to discuss all aspects of immunology and
immune-related diseases, with a special emphasis on the diagnosis and
treatment of immune related illnesses; and on new research findings
in these areas. This group will not be moderated.
Topics appropriate to this newsgroup include but are not limited to:
Physiology of the immune system and basic immune research
The causes of immune related illnesses
The diagnosis and treatment of such illnesses as HIV disease,
lupus, rheumatoid arthritis, chronic fatigue syndrome,
fibromyalgia syndrome, and allergies of all kinds
The immune aspects of illnesses not generally classified as
primarily immune, but which have significant immune involvement
including cancer, multiple sclerosis, diabetes, and serious
infectious illnesses
Psychoneuroimmunology and the impact of emotional state on the
immune system
The relationship between the endocrine and immune systems and the
impact of this on illness and health
Sleep disorders and their relationship to the immune system
The impact of diet and exercise on the immune system both in
health and illness
How the workplace impacts on immune illness
Immunologic therapies such as vaccines and allergy desenstization
Immunologic treatment for cancer
Immunomodulating drugs and the impact of medications on the immune
system
Psychosocial aspects of immune related illness
This group is not intended to be a primary emotional support forum
for patients, although it is anticipated that people with immune
related illnesses will help one another through sharing information
and experiences.
There appears to be a great deal of interest in immunology and immune
related diseases on the Internet. However, there is no place where
patients and physicians can meet to discuss the scientific and
clinical aspects of immune illnesses in general. Both physicians and
people who suffer from immune illnesses, as well as immunologic
researchers, have expressed great interest in a group that would
provide an overview of the immune system, with an emphasis on
clinical immunology.
HOW TO VOTE
Send MAIL to: vote@dogwood.com
Just Replying should work if you are not reading this on a mailing
list. It is important that you have the group name spelled correctly
in the subject line of your vote, otherwise your vote may not be
routed properly.
Your mail message should contain one of the following statements:
I vote YES on sci.med.immunology
I vote NO on sci.med.immunology
You may also ABSTAIN in place of YES/NO - this will not affect the
outcome. Anything else may be rejected by the automatic vote
counting program. The votetaker will respond to your received
ballots with a personal acknowledgement by mail - if you do not
receive one within several days, try again. It's your responsibility
to make sure your vote is registered correctly.
Only one vote per person, no more than one vote per account. No
votes will be accepted from system accounts (i.e. root, news, uucp)
or anonymous accounts. Addresses and votes of all voters will be
published in the final voting results list.
--
Dave Cornejo There is nothing so subtle
Dogwood Media as the obvious
Fremont, California
[Thanks to Camilla Caracchiolo for information and for creating this
proposal.]
===================================================================
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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Distribution of CFS-NEWS on the Internet is sponsored by the NIH
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SUB CFS-NEWS <your> <name> to the address LISTSERV@NIHLIST.BITNET or
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=====================================================================