Chronic Illness Resources
Descriptions of resources in the following categories are available on this
page. Click on a category to go there directly, or scroll down to read the descriptions in all the categories.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a blank subject line to In the body of the message type: subscribe PAIN-L YourFirstName YourLastName
- Contact: Hank Roth (odin@gate.net)
- Description:
- For anyone coping with severe or chronic pain, or interested in discussing issues related to pain.
- According to the welcome message, "PAIN-L is for the discussion of the political, ecological and all other aspects of pain, including both physical and emotional pain." Started in Spring 1995, this group has rapidly become a high-volume discussion. Discussion is weighted toward physical pain, with attention also paid to the emotional pain attendant to chronic physical pain. A thoughtful and friendly list, though some postings have generated a discussion of what tone is appropriate. Articles and informational posts are frequent.
- Volume 25-50 msg/day; unmoderated; archived.
- Type of Resource: Freenet
- Access:
- telnet firefly.prairienet.org
- login: visitor
- Menu selections:
- Community Center
- Community Health Center
- Self-Help Center
- Listing of Health Groups
- Description:
- A list of chronic illness groups in and around Champaign
County, Illinois, prepared by the staff of the Self-Help
Center at Family Services.
- Over 60 groups are listed by county and include resources
for AIDS, Alzheimer's, cancer, Crohn's disease, diabetes,
endometriosis, epilepsy, fibromyalgia, heart disease,
multiple sclerosis, muscular dystrophy, myasthenia gravis,
Parkinson's disease, stroke, and Turner's syndrome, among
others. The purposes of the groups, names, phone numbers,
and addresses are provided.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to MAJORDOMO@HIVNET.ORG In the body of the message type:
subscribe HIV-AIDS-DIALOGUE YourFirstName YourLastName
- Originating Body: Global Electronic Network for AIDS
- Description:
- For people with HIV or AIDS, or any interested parties. International
participation.
- Discussions of all aspects of life with HIV or AIDS. Topics
such as accepting change, coping as the surviving partner,
and alienating others as coping tool have been discussed,
as well as comparisons of legal status of people with HIV
in various countries. Calendars of events of interest
to list members are posted regularly. Very polite list;
inappropriate posts are handled well by list members.
- Volume 15-20 msg/week; unmoderated.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to MAJORDOMO@HIVNET.ORG In the body of the message type:
subscribe HIV-AIDS-SPIRITUAL YourFirstName YourLastName
- Originating Body: Global Electronic Network for AIDS
- Description:
- For people with HIV or AIDS, or any interested parties, who
wish to discuss spiritual aspects of life with the disease.
- Topics for discussion have included churches that welcome
people with HIV/AIDS, guilt for having AIDS, and the
wearing of red ribbons as signs of support. Very polite
list; differences of opinion have not become flames, and
inappropriate posts are handled well by list members.
- Volume 5-10 msg/week; unmoderated.
- Type of Resource: World Wide Web page
- URL: http://vector.casti.com/QRD/www/AIDS.html
- Originating Body: Queer Resources Directory (QRDstaff@vector.casti.com)
- Description:
- Part of the Queer Resources Directory page, which covers
all facets and issues relating to sexual minorities.
Information is aimed at both casual net users and researchers.
- Among the items included on the page are a list of support
organizations, links to other Internet AIDS resources, and
newsletters and book reviews. Text with one graphic.
Political undertones in the presentation, but all sides of
AIDS/HIV issues are presented.
- Visit this resource: AIDS/HIV Information
- Type of Resource: World Wide Web page
- URL: http://www.catalog.com/kairos/material.htm
- Contact: Brett N. Hunter (bhunter@interramp.com)
- Description:
- For caregivers of HIV-affected persons.
- Documents to download in Word format include "Suggestions
for Coping with Grief" and "Guidelines for Caregiver
Support Groups." The documents are of a reasonable size,
download quickly, and are well-written. While KAIROS is a
non-profit organization and much of their web site is
devoted to information about the group and its activities,
these caregiver materials stand alone and should be useful
to any AIDS caregivers.
- Visit this resource: KAIROS Support for Caregivers Material
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to MAJORDOMO@WUBIOS.WUSTL.EDU In the body of the message type:
subscribe ALZHEIMER
- Contact: Kathy Koepke (kathy@wubios.wustl.edu)
- Description:
- For persons with an interest in Alzheimer's disease
or related disorders in older adults.
- List participants are primarily caregivers (both
family and professional), family, and researchers.
The list has tackled some tough emotional questions such
as "do not resuscitate" orders and quality-of-life
issues, as well as practical questions like the use of
aluminum utensils; discussion has been thoughtful and
respectful. Other postings include conference announcements and pointers
to information resources.
- Volume 20-40 msg/week; unmoderated; archived monthly. No
digest available.
- Type of Resource: Freenet
- Access:
- telnet freenet.hsc.colorado.edu
- login: visitor
- Menu selections:
- Colorado Health Care Building
- Acute or Chronic Conditions
- Alzheimer's Disease
- or type: go alzheimers
- Description:
- Includes a listing of Alzheimer's support groups in the
Denver area. Also includes information on frequently
asked questions, legal issues, and Alzheimer's research.
- Type of Resource: Freenet
- Access:
- telnet freenet-in-a.cwru.edu -or-
- telnet freenet-in-b.cwru.edu -or-
- telnet freenet-in-c.cwru.edu
- login: visitor
- Menu selections:
- The Medical Arts Building
- Alzheimer's Disease Support Center
- or type: go alz
- Description:
- The Alzheimer's Disease Support Center has an internal
newsgroup for caregivers of people with Alzheimer's
Disease, listed under menu option Caregiver Dialog. The
participants of this extremely close and warm newsgroup
regard themselves as a family, heartily welcoming new-
comers as well. Although there are some requests for
information, most of the traffic is conversation about
day-to-day caregiving experiences and messages of
encouragement. A recent death of a participant's father
brought many hugs, prayers, and expressions of sympathy.
Volume 20-30 msg/week.
- Also available is a question and answer board,
staffed by professionals, answering Alzheimer's-related
questions within a 2-day time frame. Volume 1-2
questions/week.
- Other information includes an FAQ, upcoming events,
a bibliography (compiled in 1990?), and a list of videos
and brochures.
- Type of Resource: Usenet Newsgroup
- Description:
- For arthritis sufferers, though family members, friends, and other
interested parties are welcome.
- Very lively newsgroup, generally friendly but has flared up in a
cross-posted flamewar over a controversial drug treatment. Topics include
water exercise therapy to ease pain and helping to calm elderly parents
frightened at the prospect of joint replacement surgery.
- Volume 50-70 msg/week; unmoderated; FAQ available.
- Visit this resource: alt.support.arthritis
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message to
AUTISM-REQUEST@STJOHNS.EDU
- Contact: Bob Zenhausern (drz@sjuvm.stjohns.edu)
- Description:
- For persons interested in autism and other develop-
mental disabilities.
- List participants are primarily family members and
teachers of autistic children. Topics include dealing
with school officials, various therapies, and practical
coping strategies. Discussion occasionally gets intense
and heated, on subjects like facilitated communication,
Lovaas therapy and the Clinton health care plan. An
extensive FAQ on autism is posted quarterly.
- Volume 80-100 msg/week; unmoderated; archived weekly
since April 1992.
- Type of Resource: Usenet Newsgroup
- Description:
- An alternate means of posting to and reading the
AUTISM listserv.
- Visit this resource: bit.listserv.autism
See Also:
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message to
IMMUNE-REQUEST@WEBER.UCSD.EDU
- Contact: Cyndi Norman (CNORMAN@UCSD.EDU)
- Description:
- For people with an interest in immune-system disorders
such as chronic fatigue syndrome, lupus, candida, fibromyalgia,
asthma, multiple allergies, chemical sensitivity.
- Participants include persons with the above-listed and
related conditions; relatives and friends; and a few
medical professionals and researchers. According to the
list welcome message, "most discussion comes from
personal experience and not from medical expertise."
Recent topics have included dust-free vacuum cleaners,
drain de-cloggers, detox symptoms, and workplace
conditions. With so many disorders in question, the
discussion can range widely, but the premise of the group
is that all the conditions are related.
- Volume 40-90 msg/week; unmoderated; archived monthly;
digest available in monthly form only.
See Also:
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@MITVA.MIT.EDU In the body of the message type:
subscribe BRAINTMR YourFirstName YourLastName
- Contact: Samantha Scolamiero (samajane@athena.mit.edu)
- Description:
- For brain tumor patients, their supporters, and medical
professionals.
- A forum to discuss all topics related to brain tumors,
benign and malignant. A very diverse list, with members
discussing their experiences and offering suggestions,
exchanging information about treatments and conferences with
medical professionals, and recommending readings. Friendly
listmembers.
- Volume 5-10 msg/day; unmoderated.
See Also:
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERVER@MORGAN.UCS.MUN.CA In the body of the message type:
subscribe BREAST-CANCER YourFirstName YourLastName
- Contact: Jon Church (jchurch@kean.ucs.mun.ca)
- Description:
- For patients, family and friends of patients,
researchers, physicians who deal with breast cancer.
- Topics discussed include medical advances, possible
therapeutic treatments, politics of breast cancer and
health care. The list is also described in the introductory
message as "a forum for breast cancer patients
and their loved ones to vent frustrations and offer
alternative strategies to dealing with the patriarchal
medical-industrial complex, and to offer help and
insights into the psychosocial management of the
disease." The discussion is not strident, however,
but rather a sharing of experiences, information, and
electronic hugs. Subscribers are mostly women,
mostly patients, but some male relatives and
professionals also participate.
- Volume of 60 msg/week; unmoderated; archived. Digests
available in weekly form.
- Type of Resource: World Wide Web page
- URL: http://nysernet.org/breast/Default.html
- Originating Body: Breast Cancer Information Clearinghouse
- Contact: Terri Damon (tmdamon@nysernet.org)
- Description:
- For breast cancer patients, their families, and friends.
- Designed to provide information and encouraging news about
research and to help identify support groups. Includes a
guide to support groups across the U.S, links to other
breast cancer pages, and information for health care
providers. Text with some graphics.
- Visit this resource: Breast Cancer
Information
- Type of Resource: World Wide Web page
- URL: http://www.lm.com/~cholt/cancer.html
- Contact: Carol Holt (cholt@telerama.lm.com)
- Description:
- This web page is an all-text telling of one woman's experience with
breast cancer, including a mastectomy and chemotherapy. While she admits
she has omitted "a lot of the emotions involved with having cancer and
losing a breast," the author welcomes mail and is willing to discuss
her experiences with readers.
- Visit this resource: Her Cancer - Carol Holt
See Also:
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@WVNVM.WVNET.EDU In the body of the message type:
subscribe CANCER-L YourFirstName YourLastName
- Contact: Susan Rodman (u0ac3@wvnum.wvnet.edu)
- Description:
- For people with cancer and their friends, family,
and physicians.
- A talkative list with a sense of community, including
jokes and chatter along with sharing of experiences and
medical information. Several professionals on the
list post regularly with answers to questions, and
receive public appreciation for their efforts. While
there is no flaming, the sense of humor of some
participants may take an effort to appreciate. The
high volume and lack of a digest should also be noted.
- Volume 100-140 msg/week; unmoderated; archived.
No digest available.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to BMT-TALK-REQUEST@AI.MIT.EDU In the body of the message type:
subscribe
- Contact: Laurel Simmons (laurel@ai.mit.edu)
- Description:
- For anyone with an interest in discussion of bone
marrow transplants.
- List participants include bone marrow transplant patients;
friends, family, and caregivers; and a few medical pro-
fessionals. Discussion has included evaluating whether
bone marrow transplant is the right course of treatment;
interferon and other drugs; and sharing of experiences.
One caregiver has been posting a diary of experiences as
his wife approaches her transplant.
- Volume 10-30 msg/week; moderated; unarchived.
No digest available.
- Type of Resource: Usenet Newsgroup
- Description:
- For those with cancer and other interested parties.
- "We are all here to help one another cope as best we can,"
posted one person to another who had just learned that his
father had prostate cancer. Cancer patients and family members
predominate on this newsgroup, though medical professionals
do post from time to time. Discussions include treatment
strategies, insurance options, and pointers to other sources
of information.
- Volume 20-25 msg/week; unmoderated; FAQ available.
- Visit this resource: alt.support.cancer
- Type of Resource: World Wide Web page
- URL: http://oncolink.upenn.edu/psycho_stuff
- Originating Body: University of Pennsylvania Medical Cente
r
- Contact: E. Loren Buhle, Jr., Ph.D and Joel Goldwein, MD
(oncolink@cancer.med.upenn.edu)
- Description:
- For cancer patients, families and friends, and caregivers.
- Part of the OncoLink cancer page from the University of
Pennsylvania, this page assembles an amazing amount of
information on support groups, lists of recommended readings,
tips on coping with stress, and a wide array of other
useful pieces of advice. Contains links to other Internet
cancer resources. Graphics as well as text, some of which
are rather large and can be slow to load.
- OncoLink won a Best of the Web '94 Award for the Best Professional
Service web site.
- Visit this resource: Psychosocial Support,
Support Groups, Cancer Organizations, etc.
- Type of Resource: World Wide Web page
- URL: http://www.teleport.com/~tige/cancer/cancer.html
- Contact: Tige L. Phillips (tige@teleport.com)
- Description:
- The major portion of this page is a day-by-day diary of
a 24-year-old man as he undergoes treatment for Multiple
Myeloma, a bone marrow cancer. In addition to the very
moving and informative diary, the page provides links
to other Internet cancer information resources. All text,
no images. Currently missing some days of the hospital
stay, but there is still a great deal of information here.
- Visit this resource:
Day by Day with a Bone Marrow Transplant Patient
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@SJUVM.STJOHNS.EDU In the body of the message type:
subscribe C-PALSY YourFirstName YourLastName
- Contact: Bill McGarry (wtm@bunker.afd.olivetti.com)
- Description:
- For people with cerebral palsy and their family,
friends, physicians, and researchers.
- Participants include patients, parents of children
with cerebral palsy, other family members, and
researchers. Participants share experiences,
and request and share information on treatment
and legal battles (schooling, disability pensions,
accessible facilities). Another recent discussion
asked list members with CP, "If you were given one
wish, what would it be?" Articles from newsletters
are also posted.
- Volume 30-50 msg/week; unmoderated; archived monthly since
May 1994.
- Type of Resource: Usenet Newsgroup
- Description:
- An alternative to, but not a mirror of, the C-PALSY discussion
group. Most lively when the listserv was malfunctioning.
Current active thread involves suggestions of gifts for a young
relative with cerebral palsy.
- Volume varies--currently 5 msg/week; unmoderated; FAQ available.
- Visit this resource: alt.support.cerebral-palsy
See Also:
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@LIST.NIH.GOV In the body of the message type:
subscribe CFS-L YourFirstName YourLastName
- Contact: Roger Burns (rburns@cap.gwu.edu)
- Description:
- For persons interested in chronic fatigue syndrome.
- Participants include persons with CFS, family and
friends, and several medical professionals. Topics
include symptoms, drugs, and day-to-day coping
strategies. A recent discussion shared humorous
situations occasioned by CFS-related forgetfulness.
Research articles and pointers to other resources
are also posted. Participants often express
appreciation for the existence and support of the
list, particularly since relatively little is known
about the causes of CFS. Political discussion is
discouraged. Introductory statements from participants
are available as an archive file.
- Volume 20-30 msg/day; unmoderated; archived monthly.
- Type of Resource: Usenet Newsgroup
- Description:
- An alternate means of posting to and reading the
CFS-L listserv.
- Visit this resource: alt.med.cfs
- Type of Resource: World Wide Web page
- URL: http://www.latrobe.edu.au/Glenn/CFS.html
- Contact: Jason Hellwege (J.Hellwege@latrobe.edu.au)
- Description:
- For the "CFS community online."
- Provides pointers to a wide variety of CFS resources,
including homepages of people with CFS, CFS FAQs, and
issues of Catharsis, an electronic "monthly creative
magazine for CFS folk." Mainly text, some graphics.
- Visit this resource: CFS Village
See Also:
- Type of Resource: Discussion Group
- Access: To subscribe, send a message to IBDLIST-REQUEST@MENNO.COM
- Contact: Thomas Lapp (thomas@menno.com)
- Description:
- For persons with Inflammatory Bowel Diseases (including
Crohn's disease, ulcerative colitis, spastic colon, and
other related diseases.
- Participants include persons with IBD (as young as age 14), family
members, and several medical professionals. Pregnancy, diet
suggestions, and alternative therapies were among the Winter 1995
topics. Cordial tone, with less chat than the newsgroup
alt.support.crohns-colitis. The group's contact person compiles
the digests, inserting his own responses to some of the messages. While
the welcome message claims, "I do not do any editing," curse
words are "bleeped" and participant requests for anonymity
are honored.
- Volume 4-5 digests/month, 10-15 msg/digest; moderated; archived.
Digest format only.
- Type of Resource: Usenet Newsgroup
- Description:
- "A forum for people with ulcerative colitis, Crohn's Disease,
and irritable bowel disease," according to the FAQ.
- Discussion of the advantages of psychological therapy in the
treatment of Crohn's, diet tips, and advice for travellers
in Third-World countries are among the recent threads.
Cordial and helpful tone, with some opinionated group
members, but not rude--flaming is actively discouraged. A
spin-off group, alt.support.ostomy, recently formed, but has
not had much traffic yet.
- Volume 25-30 msg/week; unmoderated; FAQ available.
- Visit this resource: alt.support.crohns-colitis
- Type of Resource: World Wide Web page
- URL: http://128.197.93.205/cduchome.html
- Contact: Bill Robertson (billr@bu.edu)
- Description:
- For people living with these diseases, their families, and
friends.
- Described as a source of "information, solace, and
encouragement," this resource provides links to various FAQs,
reference source collections, book collections, and comments from those who
have used the page. Also includes some toical humor pages that have
been enthusiastically received by visitors to the website.
- Visit this resource:
Crohn's Disease/Ulcerative Colitis/Irritable Bowel Syndrome Home Page
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@YALEVM.CIS.YALE.EDU In the body of the message type:
subscribe CYSTIC-L YourFirstName YourLastName
- Contact: Antony Dugdale (antdugl@minerva.cis.yale.edu)
- Description:
- For anyone with an interest in cystic fibrosis.
- Exchanges of histories, discussions of various treatment
methods; recent threads covered health care reform, famous
people with cystic fibrosis and whether disease affects
one's world view. Many parents of children with the disease,
recently discussing the danger of spoiling ill children.
- Volume 5-10 msg/day; unmoderated; archived.
- Type of Resource: World Wide Web Page
- URL: http://www.ai.mit.edu/people/mernst/cf/
- Contact: Rob Calhoun (rcalhoun@mit.edu), Mike Ernst (mernst@theory.lcs.mit.edu)
- Description:
- This well-organized WWW site provides a wealth of information
on cystic fibrosis, both for technical and non-technical readers.
Particularly valuable for emotional support purposes is their list
of national organizations and newsletters, and their links to the
Cystic-L mailing list, including FAQs and searchable archives.
- Visit this Resource: CF-WEB -- Online Information About Cystic Fibrosis
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@LEHIGH.EDU In the body of the message type:
subscribe DIABETIC YourFirstName YourLastName
- Contact: Steve Roseman (lusgr@lehigh.edu)
- Description:
- For persons with diabetes or an interest in diabetes.
- The list's welcome message states: "Our specialty is
what's NOT in the books, the nuts and bolts of daily
life as affected by diabetes" Along with advice,
articles, and sharing personal experiences, subscribers
also exchange jokes and chatter; subscribers are urged
to flag strictly conversational postings with the word
"chat" in the subject line. Members of this list and
the TYPE_ONE list in the San Francisco Bay
area plan to meet for a party.
- Volume 40-50 msg/day; unmoderated; archived, with
multiple FAQs.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@NETCOM.COM In the body of the message type:
subscribe TYPE_ONE YourEmailAddress
- Contact: John Myers (jamyers@netcom.com)
- Description:
- For people with Type One (insulin dependent) diabetes.
- This list split off from the DIABETIC list, specifically
for discussion of Type One diabetes, although many
participants post to both lists. The moderator describes
the list as "a support group, not a source of hard
scientific/medical information." Food is a recurring
topic; other recent subjects include Medic Alert
bracelets, insulin pumps, and exercise. Messages tend
toward experience and advice rather than reprinted
articles. Members of this list and the DIABETIC
list in the San Francisco Bay area plan to
meet for a party.
- Volume 15-30 msg/day; moderated; no archive. Digests
should be available soon.
- Type of Resource: Usenet Newsgroup
- Description:
- For parents of diabetic children, though adult diabetics
and other interested parties are welcome.
- Polite and friendly newsgroup, exchanging experiences in
caring for diabetic children and growing up diabetic.
Topics include dealing with rebellious diabetic teenagers
and the annual problem of trick or treating.
- Volume under 10 msg/week; unmoderated.
- Visit this resource: alt.support.diabetes.kids
- Type of Resource: World Wide Web page
- URL: http://www.biostat.wisc.edu/diaknow/dfan/dfanidx.htm
- Contact: Belver Ladson (belve@delphi.com)
- Description:
- For daibetics and any interested parties.
- Part of the Diabetes Knowledgebase collection of resources,
the newsletters are actually based on a forum on the Delphi
communications service. Newsletters contain articles
by Delphi subscribers and contributors from other services
and the Internet on various topics, including dealing
with teenaged diabetic children and being the "significant
other" of a diabetic. All text.
- Visit this resource:Diabetic Friends Action Network Online
Newsletter
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@VM1.NODAK.EDU In the body of the message type:
subscribe DOWN-SYN YourFirstName YourLastName
- Contact: Bill McGarry (wtm@sheldev.shel.isc-br.com)
- Description:
- For people with an interest in Down's Syndrome.
- Participants include parents, other family members,
friends, therapists and physicians; none of the
participants have Down's Syndrome themselves. Recent
topics have been: dealing with school officials,
teaching children with DS to walk, aborting disabled
fetuses (both sides of this sensitive issue were
discussed - strong opinions without flames.) Postings
tend toward experience and advice, with only scattered
reprints of articles.
- Volume 20-40 msg/week; unmoderated; archived.
- Type of Resource: Usenet Newsgroup
- Description:
- An alternate means of posting to and reading the
DOWN-SYN listserv.
- Visit this resource: bit.listserv.down-syn
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@DARTCMS1@DARTMOUTH.EDU In the body of the message type:
subscribe WITSENDO YourFirstName YourLastName
- Contact: David Avery (David.Avery@dartmouth.edu)
- Description:
- For persons with endometriosis and their family, friends,
physicians, researchers.
- List participants are mostly women, mostly coping with
endometriosis themselves, although there are a few male
relatives and friends, and a few health care
professionals. New subscribers who identify
themselves as such in their postings are often welcomed
to the list in subsequent messages. Participants share
experiences and ask questions about treatment. Many
postings include gentle humor.
- Volume 20-30 msg/week; moderated; archived monthly since
April 1992.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@CALVIN.DGBT.DOC.CA In the body of the message type:
subscribe EPILEPSY-LIST YourFirstName YourLastName
- Contact: David Avery (David.Avery@dartmouth.edu)
- Description:
- For people with an interest in epilepsy and seizure
disorders.
- Participants include people living with epilepsy,
parents and other relatives, doctors, and researchers.
Discussion covers experiences with symptoms and treat-
ments, drugs, and requests for advice, as well as
reprints of information from other sources. List
members seem to follow each other's stories and post
updates on their own histories.
- Volume 10-20 msg/week; archived monthly since April 1994.
- Type of Resource: Usenet Newsgroup
- Description:
- For epileptics, their families and friends, and other
interested parties.
- Friendly and interesting group, with exchanges of information
on treatments and symptoms and personal histories. Current
threads include discussion of whether or not list members can
predict an oncoming seizure in any way and whether the mother
of a 16-year-old epileptic should let her daughter drive.
- Volume under 10 msg/week; unmoderated.
- Visit this resource: alt.support.epilepsy
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@VMD.CSO.UIUC.EDU In the body of the message type:
subscribe FIBROM-L YourFirstName YourLastName
- Contact: David Avery (David.Avery@dartmouth.edu)
- Description:
- For persons with an interest in Fibromyalgia/Fibrositis.
- Participants include people with Fibromyalgia (or
"fibrocrud," as many messages refer to it), friends
and family, and medical professionals. Messages cover a
broad spectrum from questions and answers, to reposted
articles, to lots of conversation and humor (including
a parody of the Barney song). Participants often
report day to day successes or discouragements, and
responses to such messages are supportive. Note the
very high volume.
- Volume 50-100 msg/day; unmoderated; archived weekly
since November 1993, with multiple FAQs.
- Type of Resource: Usenet Newsgroup
- Description:
- An alternate means of posting to and reading the
FIBROM-L listserv.
- Visit this resource: alt.med.fibromyalgia
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a blank subject line to LISTSERV@SJUVM.STJOHNS.EDU In the body of the message type: subscribe HEPV-L YourFirstName YourLastName
- Contact: Geff Thorpe (gthorpe@infinet.com)
- Description:
- "Primarily intended for people who have been diagnosed with
chronic hepatitis, but also open to people otherwise involved
with this illness, such as doctors, nurses, family members..."
--from a posting to NEWLIST
- Begun in February 1995, this lively discussion group is both
supportive and informative. Topics of discussion have included
transmission of the virus, exercise, various therapies.
Participants include some health care professionals as well
as people with hepatitis.
- Volume 10-20 msg/day; unmoderated; archived.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@TECHNION.TECHNION.AC.IL In the body of the message type:
subscribe MSLIST-L YourFirstName YourLastName
- Contact: Dr. Chanoch Weil (ccanacw@TECHNION.TECHNION.AC.IL)
- Description:
- For people with an interest in Multiple Sclerosis.
- Participants include persons with MS, family and friends,
and medical professionals. Discussion includes symptoms,
treatments, relationships, day-to-day experiences, and
humor, as well as occasional reposted articles. The high
volume of the list makes it a good place to get a wide
range of feedback on such topics as experimental drugs.
- Volume 20-50 msg/day; unmoderated; archived.
See Also:
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a blank subject line to LISTSERV@IST01.FERRIS.EDU In the body of the message type: subscribe OVARIAN-CANCER
- Contact: Carol Fortune (CFORTUNE@IST01.FERRIS.EDU)
- Description:
- For women with ovarian cancer and their family, friends,
and physicians.
- People in this group share experiences, requests for
information, messages of support, and occasional articles.
Several participants are very active in the politics
ovarian cancer policy and funding, and in May the list
generated a blitz of e-mail messages to President Clinton.
Participants do share their anger, but not directed at each
other -- no flames in several months of subscribing.
- Volume 5-10 msg/day; unmoderated; archived since 2/95
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@VM.UTCC.UTORONTO.CA In the body of the message type:
subscribe PARKINSN YourFirstName YourLastName
- Contact: Barbara Patterson (patterso@fhs.csu.McMaster.CA)
- Description:
- For people with an interest in Parkinson's Disease.
- Participants include persons with Parkinson's Disease,
children and other relatives of people with PD,
researchers, physicians, and other interested parties.
Despite the "information exchange network" title,
encouragement and support are exchanged along with
information; new subscribers are encouraged to intro-
duce themselves. Recent discussion topics have been
hallucinations, pallidotomy, Amantadine and other
drugs.
- Volume 20-50 msg/week; unmoderated; archived weekly
since November 1993.
- Type of Resource: Freenet
- Access:
- telnet freenet.hsc.colorado.edu
- login: visitor
- Menu selections:
- Colorado Health Care Building
- Acute or Chronic Illness
- Parkinson's Disease
- or type: go parkinsons
- Description:
- Includes a list of Parkinson's Disease support groups
in the Denver area, as well as answers to frequently asked
questions.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@SJUVM.STJOHNS.EDU In the body of the message type:
subscribe POLIO YourFirstName YourLastName
- Contact: Robert Mauro (rmauro@delphi.com)
- Description:
- For persons interested in polio and post polio syndrome.
- This list, formed in mid-September 1994, has rapidly
generated an active forum for discussion and support.
Participants include persons with polio or post polio
syndrome, family and friends, physicians, researchers.
Recent discussion has included personal introductions,
symptoms, and the supposed eradication of polio in
the western hemisphere.
- Volume 20-40 msg/week; unmoderated; archived.
- Type of Resource: Usenet Newsgroup
- Description:
- For those with post polio syndrome, their families, and
interested parties.
- Lively group whose discussions have included coping with
depression, dietary issues, and famous people with polio.
According to the welcome message, the group should serve as
a support group for discussion of experiences of those
individuals stricken with post-polio syndrome, allowing them
to realize that they are not alone in their suffering.
- Volume 50-100 msg/week; unmoderated.
- Visit this resource: alt.support.post-polio
- Type of Resource: World Wide Web page
- URL: http://www.eskimo.com/~dempt/polio.html
- Contact: Tom Dempsey (dempt@eskimo.com)
- Description:
- For polio survivors, their families, and friends.
- Pointers to polio resources on the net, including links
to many articles about polio and post-polio syndrome, and links
to other disability-related information.
Some graphics, including photos of contributors, FAQ maintainers, and
listserv organizers.
- Visit this resource:
Polio Survivor's Home Page
- Type of Resource: Usenet Newsgroup
- Description:
- For those with prostate cancer and other
interested parties.
- Newly formed newsgroup (January 1995). Men with prostate cancer
and male family members predominate on this newsgroup, though everyone
is welcome. Discussions include various treatment strategies, ways of
coping with impotence, and pointers to other sources of information.
- Volume 20-25 msg/week; unmoderated.
- Visit this resource: alt.support.cancer.prostate
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a blank subject line to LISTSERV@MERCURY.DSU.EDU In the body of the message type: subscribe BIFIDA-L YourFirstName YourLastName
- Contact: Loren Aman (amanl@columbia.dsu.edu)
- Description:
- For persons who want to discuss spina bifida.
- Although there are some subscribers who have spina
bifida, many subscribers are parents of children
with spina bifida, so topics related to parenting
experiences (e.g. sibling rivalry, school officials,
how a child deals with using a wheelchair) are often
discussed. Other Spring '95 topics have included surgeries, sports,
sports, and preferences of language for describing disabilities/
handicaps/special needs. A good-natured list, with
occasional lulls in the conversation.
- Volume 5-20 msg/week; unmoderated; archived.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message with a
blank subject line to LISTSERV@UKCC.UKY.EDU In the body of the message type:
subscribe STROKE-L YourFirstName YourLastName
- Contact: Bob Moore (str002@UKCC.UKY.EDU)
- Description:
- For persons with an interest in strokes.
- This list discusses issues and experiences of strokes
at any age. Participants are stroke survivors;
parents, children, and other friends and relatives; and
medical professionals and researchers. The ratio of
professionals to survivors/family is somewhat higher than
on other lists, but the tone is definitely supportive
rather than clinical. Recent topics have included
dealing with stroke-related depression, music as
therapy, and experiences with various drug therapies.
- Volume 10-30 msg/week; unmoderated; archived monthly
since January 1994.
- Type of Resource: Discussion Group
- Access: To subscribe, send an e-mail message to
TN-REQUEST@WORLD.STD.COM
- Contact: Hank Roth (odin@world.std.com)
- Description:
- For persons interested in trigeminal neuralgia, a
disease of the central nervous system.
- A small list (under 25 subscribers) at this writing.
Most of the participants are patients and post
messages just to update on how they're doing, as well
as requesting or giving information. Over half of the
messages are from the list-owner, who frequently posts
articles and answers to questions.
- Volume 30-60 msg/week; unmoderated; not archived;
no digest available.
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General Chronic Illness