==================================
Health is a concern in most families. Where a family member or a
friend is suffering from cancer, AIDS, a serious disability, or a
rare disease, finding help is imperative.
Fortunately, there are many sources of information for those
who want to know more. There are clubs and forums, where you can
meet others with the same disease or problem. They are open 24
hours a day. Those who cannot sleep at night, can log in any time
to "talk" with others.
The social aspect of joining a club is important. However, it
may be equally important to learn from other people's experiences
with alternative treatment methods, doctors, medicines, and to get
practical medical advice.
Here are some examples to illustrate the width of the offering:
AIDS
----
You may start with "The Fog City Online Information Service" in San
Francisco, the world's largest bulletin board of AIDS information.
The cost of using this BBS from afar may be reduced considerably by
using i-Com or similar data transport services (see chapter 13).
CompuServe has a Human Sexuality Forum and a MEDSig with
associated file libraries. It also has a surcharged ZiffNet
database with full-text articles about health topics (Health
Database Plus). On the Well, enter "g aids".
NewsNet has the newsletters "AIDS Weekly" and "AIDS Therapies."
The latter is a directory, updated monthly, with descriptions of
standard and experimental treatments for AIDS, along with a guide
to treatments for the opportunistic infections (OI) of AIDS. It
incorporates all existing and potential new AIDS treatments in one
place.
On BITNET, check out "AIDS/HIV News" (AIDSNEWS@EB0UB011) and
the mailing list on AIDS@EB0UB011.
Usenet has sci.med.aids (AIDS: treatment, pathology/biology of
HIV, prevention), bionet.molbio.hiv, clari.tw.health.aids (AIDS
stories, research, political issues), and bit.listserv.aidsnews.
If you do not have access to Usenet, send a message to aids-
request@cs.ucla.edu for articles from AIDSNEWS, statistics and news
summaries.
Aids-stat-request@wubios.wustl.edu is another source of current
AIDS statistics. Send a request to info-aids@rainbow.UUCP. It is a
clearinghouse of information, and discussion about alternative
treatment methods, political implications, and more.
Example: Kidney disease
-----------------------
In chapter 1, I told you that my wife has a rare disease called
Polycystic Kidneys. Here are more details about what happened
during the "online health trip" to CompuServe with her doctor:
The command "GO HEALTH" gave the following menu:
1 HealthNet
2 Human Sexuality
3 Consumer Health
4 NORD Services/Rare Disease
Database
5 PaperChase (MEDLINE)
6 Information USA/Health
7 Handicapped User's Database
8 Disabilities Forum
9 Aids Information
10 Cancer Forum
Another menu, which listed available "PROFESSIONAL FORUMS," had
choices like AAMSI Medical Forum and Health Forum. Besides visiting
these, we searched several medical databases.
Menu selection five gave us The National Library of Medicine's
database (MEDLINE), which is full of references to biomedical
literature. This database had more than five million references to
articles from 4.000 magazines from 1966 and up to date, when we
searched it in 1991. It increases by some 25.000 new references per
month. Easy navigation by menus. Easy to search.
The AAMSI Medical Forum (MedSIG) is sponsored by The American
Association for Medical Systems and Informatics (AAMSI). It is a
forum for professionals within health care, people within associated
technical fields, and ordinary CompuServe users. The members meet
to find, develop and swap information.
MedSIG has a library full of programs and information files.
This is an example of what you can find there:
ATLAS.ARC 21-Sep-88 30161
Keywords: STEREOTAXIC STEREOTACTIC STEREOTAXIS ATLAS THALAMOTOMY
MAP FUNCTIONAL GIF
This contains several of the most useful stereotaxic maps from
the Schaltenbrand and Wahren Atlas in GIF format. If you can
get GIF into your CAD or drawing program, you can scale the maps
to fit your individualized patient's AC-PC distance, thereby
generating a customized map for your patient.
CompuServe has many programs for reading GIF files, and converting
GIF files to other graphical formats.
Through IQuest, we searched medical databases. Simple menus
helped define relevant search terms. When done, IQuest searched
selected databases for us, and presented the finds on our local
computer screen.
The basic rate for completing the search was US$9.00. In
addition, we paid the normal fees for using CompuServe. From
Norway, this amounted to around US$ 40/hour at 2400 bps when
logging on through the local Infonet node at that time. Today, it
costs less.
This gave us up to 10 article headlines, when searching in
bibliographic databases. Abstracts of selected articles were
displayed on our screen for an additional US$2.00.
We used the search mode "SmartScan" in the area "Medical
research." IQuest searched several databases with a minimum of
manual intervention.
First, it told us that the following databases would be
included in the search:
BRS databases:
Ageline - Contains references to and abstracts of materials on
aging and the elderly. Covers psychological, medical, economic,
and political concerns.
AIDS Database - Includes critically selected articles covering
all aspects of AIDS, (Acquired Immune Deficiency Syndrome), and
AIDS-related research.
AIDS Knowledge Base - Provides an online textbook of the most
current information on AIDS available from San Francisco General
Hospital.
Combined Health Information Database - For professionals,
patients, and the general public, CHID contains references to a
variety of materials on arthritis, diabetes, health education,
digestive diseases, and high blood pressure. Provides abstracts.
Embase - Includes extensive abstracts of articles related to
biomedicine from medical journals worldwide. About 40% of the
references are online only.
Rehabdata - Covers articles, books, reports, and audiovisual
materials dealing with the rehabilitation of the physically and
mentally handicapped. References only.
Sport Database - Indexes publications dealing with sports,
including training, medicine, education, and history. Drawn
mostly from English and French with technical articles from
other languages.
Dialog databases:
BioBusiness - Deals with the business aspects of biotechnology and
biomedical research. Draws from BIOSIS and MANAGEMENT CONTENTS.
BIOSIS Previews - Provides international coverage of all
aspects of biological science.
Cancerlit - Monitors articles from journals and other technical
publications dealing with all aspects of cancer research
throughout the world. Includes abstracts.
Clinical Abstracts - Covers human clinical study articles of major
importance selected from leading medical journals. Includes all
aspects of clinical medicine. Corresponds to Abstracts in
Internal Medicine. Abstracts available.
Life Sciences Collection - Abstracts technical literature in the
life sciences from journals and other scientific publications
worldwide.
Medline (1966 - to date) - Indexes articles from medical journals
published worldwide. Corresponds to Index Medicus, International
Nursing Index and Index to Dental Literature. Includes abstracts
in roughly 40% of the records.
SciSearch - Monitors worldwide literature across a wide range of
scientific and technological disciplines. Produced by the
Institute for Scientific Information (ISI).
Then we entered our search term: "LIVER AND CYST/". The search word
"CYST/" signified that "cyst" should match any words starting with
these four characters.
While searching, IQuest gave the following progress report:
Scanning BRS databases.
Accessing Network...........Completed.
Accessing Database Host.....Completed.
Logging on..................Completed.
Logging on (second step)....Completed.
Selecting Databases.........Completed.
Each period equals one line
of scanned data. This may take
several minutes................................
It continued in the same way with a "Scanning Dialog databases."
When the search results were presented, we glanced quickly at
the article abstracts, ordered two articles to be sent us by mail
and typed BYE.
CompuServe reported "Off at 09:12 EST 17-Nov-88 Connect time =
0:35." The two articles arrived Norway by mail a few weeks later.
The whole trip, including visits in medical forums, took 35
minutes. The cost, including local telephone and network charges,
was US$95. Of this total cost, the extra cost of searching through
IQuest amounted to US$54.00. We all felt that the costs were well
justified.
| A note about the costs: The online tour was done manually, |
| using full menus. We discussed our search strategy while |
| connected, which is more expensive than logging off to plan |
| the next moves. Also, note that the extra cost of searching |
| IQuest ($54) was not time dependent. |
Right now? I have promised to donate one kidney to my wife when the
time comes. This has prompted me (1993) to join a mailing list for
"Organ transplant recipients and anyone else interested in the
issues" (TRNSPLNT@WUVMD.BITNET).
Cancer
------
FidoNet has the forum CARCINOMA (Cancer Survivors). BITNET has the
discussion lists CANCER-L@WVNVM and CLAN (Cancer Liaison and Action
Network on CLAN@FRMOP11). CompuServe has a Cancer Forum. NewsNet
offers the newsletter CANCER RESEARCHER WEEKLY.
In September 1992, the following message was posted on CANCER-
L by a member from Brazil:
"A close friend was just diagnosed with acute leukemia of a type
called calapositive pre-B linphoplastic. It is supposedly an
early diagnosis since he is not anemic. We are very shocked but
he is reacting quite bravely and all he wants is to have access
to literature on his condition. Are there any new genetic
engineering developments effectively clinically available? What
is the present state of knowledge regarding this specific form of
leukemia?
He was diagnosed three hours ago, is 48 yrs old, and will start
chemotherapy tomorrow. He was informed that chemotherapy is quite
effective in this type of leukemia. But we wonder if there isn't
a possibility to use gene therapy.
Any help will be greatly appreciated. - Dora."
There were several helpful replies. This came from a member in the
United States:
"In response to the request for information on treatment for
leukemia, I recommend that you access CancerNet, the National
Cancer Institute's mail server on the Internet which provides
current information on treatment for leukemia. To request the
Contents List and Instructions, send a mail message to
cancernet@icicb.nci.nih.gov (Internet address)
cancernet%icicb.nci.nih.gov@nihcu ( BITNET)
Leave the subject line blank, and in the body of the mail
message, enter "HELP". When you receive the Contents list,
request the statement for Adult Acute Lymphocytic Leukemia
(cn-101024).
There are also News and General Information items, under the
Heading PDQ Database Information in the Contents List which
provide information on centers which have access to Physician
Data Query, NCI's database of cancer treatment information which
includes clinical trials information for leukemia. - Cheryl."
CancerNet is the U.S. National Cancer Institute's international
information center. It is a quick and easy way to obtain, through
electronic mail, recommended treatment guidelines from the National
Cancer Institute's Physician Data Query system.
To access CancerNet, send email to:
cancernet@icicb.nci.nih.gov
Leave the subject line blank. In the body of the mail message, enter
HELP to receive instructions and the current contents list.
The National Cancer Center in Tokyo Japan has a gopher service
at gopher.ncc.go.jp. The World Health Organization (WHO) has one at
gopher.who.ch.
Disabilities
------------
Bulletin boards and online conferences give equal access to all
persons. Everybody is treated the same way, regardless if they sit
in a wheel chair, have a hearing impairment, stutter, cannot speak
clearly, have difficulties in thinking or acting quickly, or just
have a different looks.
You need not worry about typing errors. Those who read them
will never know whether it's because you never learned how to write
on a computer, or if it is because you have difficulties in
controlling your movements.
You alone decide if others are to know about your personal
disability. If you want it to be a secret, then it will remain a
secret.
Nobody can possibly know that you are mute and lame from the
neck and down, that computer communication is your main gate into
the outer world, and that you are writing messages with a stick
attached to your forehead. Therefore, the online world has changed
the lives of many people with disabilities.
Computer communications have opened a new world for those who
are forced to stay at home, or thinks that it is too difficult to
travel. Those who can easily drive their car to the library, often
have difficulties in understanding the significance of this.
Usenet has alt.education.disabled and misc.handicap. It covers
all areas of disabilities, technical, medical, educational, legal,
etc. UUCP has handicap. It is presented in the following words:
Contact: wtm@bunker.shel.isc-br.com
Purpose: The Handicap Digest provides an information/discussion
exchange for issues dealing with the physically/mentally
handicapped. Topics include, but are not limited to: medical,
education, legal, technological aids and the handicapped in
society.
CompuServe's Disabilities Forum has the following sections: General
Interest, Develop. Disabilities, Emotional Disturbances, Hearing
Impairments, Learning Disabilities, Vision Impairments, Mobility
Impaired, Rights/Legislation, Education/Employment and Family
Life/Leisure.
AUTISM@SJUVM.BITNET is devoted to the developmentally disabled,
their teachers, and those interested in this area. The list BLIND-
L@UAFSYSB.BITNET focuses on "Computer Use by and for the Blind."
COMMDIS@RPIECS.BITNET is a mailing list discussing "Speech
disorders."
DEAF-L@SIUCVMB.BITNET is the "Deaf Discussion List," and
DEAFBLND@UKCC.UKY.EDU the "Deaf-Blind Discussion List." STUT-HLP
(LISTSERV@BGU.EDU) is a support forum for people who stutter and
their families.
On L-HCAP@NDSUVM1.BITNET, the focus is on Technology for the
handicapped. BACKS-L@UVMVM.BITNET discusses research on low back
pain disability.
The Handicap Digest is an electronic mail only digest of
articles relating to all types of issues affecting the handicapped.
The articles are taken from the Usenet newsgroup, the Handicap
News. (misc.handicap) and various FidoNet conferences such as
ABLED, BlinkTalk SilentTalk, Chronic Pain, Spinal Injury, Rare
Conditions, and several others. Subscribe by email to
wtm@bunker.shel.isc-br.com
Handicap.shel.isc-br.com (129.189.4.184) is the email address to an
anonymous ftp site that has disability-related files and programs.
The disk has some 40 directories with 500 or so files covering all
types of disabilities. (This service can be used through FTPMail.
See chapter 12 about how to do this.)
Getting old
-----------
BITNET has the "BIOSCI Ageing Bulletin Board" on AGEING@IRLEARN .
Usenet has bionet.molbio.ageing, while CompuServe's Issues Forum
has a message section called "Seniors."
Ageline on Dialog is a database produced by the American
Association of Retired Persons. It does an excellent job covering
research about older persons, particularly on consumer issues and
health care, by summarizing journal articles and the contents of
other published reports.
While our "face-to-face" world sometimes makes it difficult for
older people to participate in discussions between young people,
this is not so in the Online World. All people are treated the same
way. It is impossible for others to know your age, unless someone
tells them.
Holistic Healing and Health
---------------------------
HOLISTIC on LISTSERV@SIUCVMB.SIU.EDU is dedicated to "providing
information and discussion on holistic concepts and methods of
living which provide a natural way of dealing with the challenges
of life." Here are some topics dealt with in this forum:
Various Dimensions of Holistic Healing and Health
States of Consciousness
Meditation and the role it plays in spiritual/physical health
The impact of a healthy diet - including Herbs and Vitamins
Bodywork - such as Rolfing, Trager bodywork, Reichian, etc.
Acupuncture/pressure
Hypnosis and Biofeedback
Visualizations and Affirmations
Spiritual Healing - Psychic healing methods
Bioenergetics
The holistic connection between mind and body
Honest discussion of topics relevant to personal/spiritual
growth - And anything else within context for the betterment
of the world.
The following message is typical:
From: Helen
Subject: Re: Asthma and Sinus Problems
To: Multiple recipients of list HOLISTIC
My condolences to fellow people allergic to cats. Cats and
strawberries are two of the most allergenic substances.
Behavorial changes have proven to be EVERYTHING to me. The
techniques I've employed have helped many others. First, try
sleeping at a 45 degree angle. This usually requires piling up
pillows. The elevation of the head facilitates drainage from the
sinuses. When the situation gets really bad, I've slept sitting
up on a couch or arm chair propped up by numerous pillows and
cushions. This technique can take some getting used to, but, it
works like a charm and is kinder to your system than drug
therapy.
Second, try "ephedra" tea. This is an herb found in Chinese
herb shops. Ask the herbalist how to prepare it.
I highly recommend the book "Natural Health, Natural Medicine"
by Andrew Weil, M.D. of U of A Med School in Tucson. See pages
253-256 for more information on asthma.
Fourth, stay hydrated. This means not only drinking PLENTY of
fluids, but humidifying the house (that is if you're not also
allergic to molds).
Basic behavorial techniques are important....diet, exercise,
etc. etc, ...but this is the holistic network...I'm preaching to
the choir...
Finally, take heart! Being allergic to cats is not well
received by cat lovers...often we're cat lovers ourselves.
Depending on the breed of cat, there is a good chance you will
eventually habituate to those you are around over the long term.
Good luck, the advice about sleeping with your head significantly
elevated is the best I have ever given out to fellow sinus
problem sufferers. It really works!!
Helen.
HomeoNet, a service of the Institute of Global Communications
(IGC), is for those interested in homeopathic medicine.
List of health science resources
--------------------------------
The Bitnet/Internet online list of health science resources is
available by email from: LISTSERV@TEMPLEVM.BITNET . Send the
following command:
GET MEDICAL RSCRS
This will give a long list of BITNET, Internet, and Usenet forums,
data archives, electronic newsletters and journals devoted to
health science.
Here are some examples from the list that may be of interest to
people not working in the health profession:
* ALCOHOL@LMUACAD.BITNET - a discussion list for Alcohol and
Drug Studies,
* BEHAVIOR@ASUACAD.BITNET - Behavioral and Emotional Disorders
in Children,
* DIABETIC@PCCVM.BITNET is the "Open Discussion forum for
DIABETIC patient counseling,"
* DIARRHOE@SEARN.BITNET (or DIARRHOE@SEARN.SUNET.SE through the
Internet) is a forum for information exchange and discussions
on all aspects related to diseases, disorders, and chemicals
that cause diarrhoea in humans and animals,
* DIET@INDYCMS.BITNET - Support and Discussion of Weight Loss
* DRUGABUS@UMAB.BITNET - Drug Abuse Education Information and
Research,
* FAMCOMM@RPIECS.BITNET - Marital/family & relational
communication.
* FIT-L@ETSUADMN.BITNET - Wellness, Exercise, Diet, for
exchanging ideas, tips and any type of information about
wellness, exercise, and diet.
* GRANOLA@BROWNVM.BITNET - Vegetarian Discussion.
* HERB@TREARN.BITNET - Medicinal and Aromatic Plants discussion.
* MSLIST-L@NCSUVM.BITNET - Multiple Sclerosis Discussion and
Support.
* RZAMAL-L@DKAUNI11.BITNET - Dental Amalgam Fillings and
chronic mercury poisoning.
* SPORTPSY@TEMPLEVM.BITNET - Exercise and Sports Psychology.
* talk.abortion on Usenet.
These mailing lists usually let you search old messages for topics
of interest. They are both living discussion forums and interesting
searchable databases!
Mednews is a weekly electronic newsletter. Its columns bring
regular medical news summaries from USA Today, Center for Disease
Control MMWR, weekly AIDS Statistics from CDC, and more. Send the
following command to LISTSERV@ASUACAD.BITNET to subscribe:
SUB MEDNEWS Your-first-name Your-last-name