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Chronic Fatigue Syndrome Electronic Newsletter
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No. 16 March 1, 1993 Washington DC
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EDUCATIONAL VIDEO-TAPE ON CFS
CONTENTS
>>>1. Educational video-tape on CFS
>>>2. U.S. Senate approves research measures
>>>3. Muscle study by Alberta researchers
>>>4. March is USA CFS Awareness Month
>>>5. CFS service center opens in New York City
------------------------------------
>>>1. Educational video-tape on CFS
An educational video-tape which gives an introductory description of
CFS for patients and physicians is available from the CFS Foundation
of Greensboro, North Carolina. The 90-minute video-tape presents a
lecture by Dr. Charles Lapp, MD assisted by illustrative diagrams,
charts and photos, and including a question-and-answer session with
CFS patients. Dr. Lapp is renowned as one of the USA's most
experienced clinicians with regard to CFS. He is on the staff of the
Cheney Clinic in Charlotte, North Carolina, is board certified in
family practice, internal medicine and pediatrics, and is a professor
of family medicine at Duke University School of Medicine
About this video, Dr. Paul Cheney comments "Excellent...I would like
each of my patients to have a copy." Dr. Jay Goldstein comments
"Clear and concise...Good summary for both physicians and patients
alike." CFS-NEWS editor Roger Burns says "Patients want information,
but reading books can be tiring for them; watching this video-tape is
an excellent way of getting a medical background for this illness."
Contents of the videotape
Introduction (by David Shuck, President of the CFS Foundation)
Summary
Classic presentation
Symptoms
CDC case definition
What causes CFS? The Agent X Theory
- effects on immune system
- effects on muscles
- effects on brain
Treatment and management
Questions & Answer session
- what specific factors might cause CFS
- do different cases have different levels of severity
- how is CFS transmitted
- who seems to get CFS
- how is the diagnosis made (specific steps given)
- do any patients recover from CFS
Purchase information: price is $19.95 (in North Carolina add 8%).
UPS shipping is $3 in the USA, $7 in Canada. Accept VISA & M/C.
Telephone orders to 800-597-4237 or to 1-919-288-2893. Or send check
or money order to CFS Foundation, 10 Wild Partridge Court,
Greensboro, NC 27455, USA. Distribution in Australia and New Zealand
is being handled by the ME/CFS Society of New South Wales, P.O. Box
449, Crows Nest, NSW 2065, telephone 61-2-439-6026; contact them for
price & shipping information. Distribution for Europe is currently
being arranged and will be reported in a future edition of CFS-NEWS.
[Information provided by the CFS Foundation of Greensboro, North
Carolina.]
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>>>2. U.S. Senate approves research measures
The U.S. Senate approved the NIH Reauthorization bill with the CFS
research measures fully intact. The bill awaits passage by the House
of Representatives and the signature of President Clinton.
[Information provided by Elizabeth Huneycutt of the CFIDS
Association.]
>>>3. Muscle study by Alberta researchers
A study of muscle metabolism has shown significant differences
between CFS patients and healthy controls. Using 22 patients and 21
controls, the study showed that CFS patients could exercise on a
pedal machine for a briefer time, and that high-energy compounds in
the muscles showed differences in patients during and after the
exercise tests. The study was conducted by Drs. Terrance Montague
and Roger Wong, and others, of the University of Alberta Hospital and
results were published as "Skeletal muscle metabolism in the chronic
fatigue syndrome: In vivo assessment by 31P nuclear magnetic
resonance spectroscopy", Chest, 1992 Dec, 102(6):1716-22. Dr. Wong
has commented that possible explanations for the observed differences
are that the muscles have become deconditioned and can't replenish
the high-energy compounds very well, or that one or more types of
viruses are disrupting the biochemistry of the muscles.
[Information appeared in an article in the Kitchener-Waterloo Record
(Kitchener, Ontario, Canada) on Dec. 1, 1992, and was provided to
CFS-NEWS by Barry Drodge of the Kitchener-Waterloo ME Support Group.]
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>>>4. March is USA CFS Awareness Month
[The (USA) National CFS Association of Kansas City, Missouri has
designated March as CFS Awareness Month. March was picked in part
because it comes just before the time that decisions are made about
medical research funding in the USA; it is therefore deemed an
appropriate time to remind members of Congress about the importance
of CFS research. The following advice about how to raise awareness
about CFS has appeared in the Association's "Heart of America
Newsletter".]
March is Chronic Fatigue Syndrome Awareness Month
The entire month of March 1993 has been designated for "Chronic
Fatigue Awareness." Some awareness ideas you may initiate or
participate in include:
FOR SUPPORT GROUPS:
1. Sponsor a scientifically accurate seminar/educational program
2. Contact a local hospital, health agency or medical school to
urge them to include CFS in the program curriculum.
3. Contact the media (TV, radio,newspapers) to provide accurate
coverage on CFS during "Awareness Month" and/or issue a PSA.
4. Urge members to write Congress to increase funding of
research programs at the National Institutes of Health (NIH) and
Centers for Disease Control (CDC).
5. Plan an event to raise research funds such as a bowl-a-thon,
dinner, Las Vegas night, Bingo, arts and crafts sale and/or bake
sale. (Check with your city, county and state to see if any
restrictions apply.) Urge family, friends and loved ones to
participate for those people too ill to be actively involved.
6. Adopt-a-library, adopt-a-hospital and/or health agency by
asking members to pick one or two locations to provide with
scientifically accurate information on CFS during "Awareness Month."
7. "Give $3 in '93" for CFS research. Send your donation to:
NCFSA - $3 in '93, 3521 Broadway, Suite 222, Kansas City, Missouri
64111
8. Request your mayor and/or governor to issue a proclamation
designating March 1993 as "awareness Month" for CFS. [See sample
wording in example below.] NOTE: Proclamations can be used in media
efforts, so be sure to take pictures of projects and signings or
presentations during "Awareness Month". Also, additional media
coverage may be obtained during the month of April since it is
designated "National Volunteer Month." Honor your volunteers by
having pictures of projects, presentations or proclamations, etc.
printed in the society of local newspapers.
9. Have members write your state senators and representatives to
make them aware of the impact CFS has had on their life and /or on a
loved one's life. (If a patient's energy level is restricted, have
them write one sentence a day, and in 30 days, they will have a
lengthy letter.)
10. Make up bumper stickers for distribution such as: "CFS -
The Thief of Vitality", "CFS - It is Real", "CFS - It's not a Figment
of the Imagination", etc...
11. Create flyers and/or posters (or purchase from NCFSA) and
place in libraries, hospitals, neighborhood bulletin boards, schools,
churches, in fact, in any visible public location.
FOR INDIVIDUALS:
1. Educate yourself on the scientific facts regarding Chronic
Fatigue Syndrome.
2. Armed with the facts, "educate at least 3 in '93" by sharing
the materials with family, friends, loved ones, school personnel,
physicians, medical professionals, co-workers, etc.
3. Write your senators and representatives to make them aware of
the impact CFS has had on your life and/or on a loved one's life.
(If your energy level is restricted, write one sentence a day and in
30 days you'll have a lengthy letter.)
4. Write Congress to request increased funding of CFS research
programs at the National Institutes of Health and Centers for Disease
Control.
5. Offer personal support to someone with CFS either as a "phone
friend", "mail friend" or by a personal visit. If health permits,
you may want to take a meal of frozen food to someone, or take them
somewhere to dine.
6. "Give $3 in '93" for CFS research. Send your donation to:
NCFSA - $3 in '93, 3521 Broadway, Suite 222, Kansas City, Missouri
64111
7. Request your mayor and/or governor to issue a proclamation
designating March 1993 as "awareness Month" for CFS. [See sample
wording in example below.]
8. Make up bumper stickers for distribution such as: "CFS - The
Thief of Vitality", "CFS - It is Real", "CFS - It's not a Figment of
the Imagination", etc...
9. Create flyers and/or posters (or purchase from NCFSA) and
place in libraries, hospitals, neighborhood bulletin boards, schools,
churches, in fact, in any visible public location.
Sample wording for proclamation:
WHEREAS, Chronic Fatigue Syndrome (CFS) is a debilitating
illness which frequently attacks people of all ages. It interrupts
education and employment, extracts the employment, extracts the
enjoyment from life and causes the accumulation of tremendous medical
expenses; and
WHEREAS, Chronic Fatigue Syndrome is a complex illness
characterized by incapacitating fatigue, neurological problems and
other dysfunctions often of sufficient severity to qualify patients
for Social Security disability; and
WHEREAS, the National Institutes of Health and the Centers for
Disease Control are investigating and trying to document the
concentration and spread of this syndrome; and
WHEREAS, the (city of or state of) is please to join with the
Chronic Fatigue Syndrome patients who must struggle to effectively
cope with this illness on a daily basis, in celebrating a special
month devoted to increasing knowledge and understanding about CFS and
in supporting valuable research into its cause and cure.
NOW THEREFORE, I, (your mayor's name or governor's name), (Mayor
or Governor) of the (City or State of), do hereby proclaim March
1993, as:
CHRONIC FATIGUE SYNDROME AWARENESS MONTH
in the (city of or state of).
[The above text, re-arranged and slightly edited, appeared in the
"Heart of America Newsletter" and was copied from a file named
CFS93.TXT on the USA CFIDS/CFS BBS, tel. 1-207-623-8486. Background
information was provided by Bill Jackson of the National CFS
Association of Kansas City, Missouri.]
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>>>5. CFS service center opens in New York City
A "CFS Crisis Center" has been formed in New York City. It provides
legal and psychological services to CFS patients, and informational
services to physicians and patients. Their contact information is as
follows:
CFS Crisis Center
210 East 86th Street
New York, NY 10028
tel. 212-472-0500
The current address is temporary and may change in a few months. The
center serves patients in the greater New York City metropolitan
area.
[Information provided by Phil Unger of the CFS Crisis Center. Thanks
to Carolyn Viviani and Debbie Cruz for notice about this news item.]
===================================================================
CFS-NEWS (ISSN 1066-8152) is an independent newsletter edited
by Roger Burns in Washington D.C. and is distributed on the
Fidonet CFS echo, on Internet, and through the USENET Newsgroup
bit.listserv.cfs.newsletter. Back issues are on file on the
CFIDS/CFS BBS in Maine USA at telephone 1-207-623-8486 in file
area H. Suggestions and contributions of news may be sent via
Internet to CFS-NEWS@LIST.NIH.GOV, or via Fido NetMail to
CFS-NEWS at 1:279/14, or post a message to the CFS echo or to
newsgroup alt.med.cfs. Patients should read the resource file
CFS-RES.TXT available on the BBS mentioned above and elsewhere.
Copyright (c) 1993 by Roger Burns. Permission is granted to
excerpt this document if the source (CFS-NEWS) is cited.
Permission is also granted to reproduce the entirety of this
document unaltered. This notice does not diminish the rights
of others whose copyrighted material as so noted may be quoted
herein. Note that Fido and Fidonet are registered marks of Tom
Jennings and Fido Software.
===================================================================
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