Internet Support for
Mood Disorders
These sites recently got a
decent enough review, with all the usual reservations...
Online Empathy for Mood
Disorders: Patients Turn to Internet Support Groups
Lynne Lamberg. JAMA.
2003;289:3073-3077.
Walkers in Darkness
A nonprofit
support organization for individuals with mood disorders with a very large and
active email list and Internet Support Group (ISG).
American Self-Help
Clearinghouse (ASHC)
The ASHC helps consumers find
or form community and online groups for a wide range of illnesses, addictions,
disabilities, and other problems.
Depression and Bipolar
Support
Offers forums for individuals
with depression or bipolar disorder, for family and friends of individuals with
those disorders, and for those interested in state and national advocacy, and
even offers teams of trained facilitators.
The National
Offers e-mail list called KnowHow for NAMI consumer members and is launching new intenet support groups (ISGs) for
individuals with major depression, bipolar disorder, anxiety disorders, and
other chronic mental illnesses, and ISGs for spouses,
families, children, and parents of individuals with such illnesses, and
includes facilitators.
The Depression and Related
Affective Disorders Association (DRADA)
Offers a peer-support program
that links individuals with depression or family members who wish to e-mail,
write, or talk with others with similar concerns, using trained leaders in for
community support groups for individuals and their families, mainly in
About network's Depression
Site
Offers chat rooms and forums
with moderaters who lead discussions, suggest
resources, etc.
http://intelihealth.com/depressiontest
A large health information
portal that offers an online administered Center for Epidemiologic Studies
Depression Scale that produces general recommendations
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Online Empathy for Mood Disorders
Patients Turn to Internet Support Groups
Lynne Lamberg
JAMA. 2003;289:3073-3077.
Some of the 20 million individuals in the
The relative anonymity of the Internet helps
protect their privacy, allowing them to air questions and concerns openly. At
the same time, the round-the-clock nature of ISGs
facilitates participation, by permitting users to read and post messages when
they like. This 24/7 availability is a particular boon for individuals who live
in areas without community support services (or who find that community groups
meet at inconvenient times or locations), as well as individuals who lack
transportation or have physical disabilities that limit their mobility.
At many mood disorders' Web sites, visitors
can participate in real-time chats, sometimes around the clock. Users
"talk" by typing short notes. Off-the-cuff comments, although
seemingly mundane, mimic ordinary conversation and provide social glue that
bonds participants. "People don't feel so alone when they can come to a
Web site like ours at 3 AM and talk with 25 other people who also experience mental
illness," said Mark Oberg, president and chief executive of Walkers in
Darkness Inc, a nonprofit organization that that started in 1991 for
individuals with mood disorders.
According to Oberg, the group's Web site,
http://www.walkers.org, logs nearly 500 000 visits annually. Oberg,
who has bipolar disorder, formerly worked as a computer industry executive.
The group's six current e-mail lists reach
400 subscribers who post about 100 messages daily on living with mood
disorders. Its 18 Web-based forums, with 2400 registered users, generate more
than 200 messages a day. A few recent discussion threads: "All alone once
again." "Depression meds." "New here, just diagnosed."
In this and other ISGs
for individuals with mood disorders, members often post lengthy, thoughtful
messages. They discuss the impact of their illness on daily life, relate
experiences with clinicians and hospitals, enumerate benefits and drawbacks of
medications and other treatments, review new research, and encourage others to
seek help and stick with therapy. The ISG users often develop intimate,
trusting relationships with group members they have never met in person. In
times of crisis, some may send flowers or money to those in need.
A NEW AREA FOR STUDY
Just how helpful ISGs
might be for patients with mood disorders is unknown. Despite more than a
decade of ISG use by individuals with mood disorders, researchers are just
starting to examine how these groups work, how they compare with face-to-face
groups, how they affect symptoms, and how well they meet members' needs.
Researchers at Johns Hopkins University
School of Medicine,
Despite fears that individuals with mood
disorders might turn to ISGs in lieu of professional
help, 96 of the 103 study participants were in treatment for their depression,
At baseline, more than half said they had
participated in ISG activities for 5 or more hours a week in the previous 2
weeks; researchers characterized these individuals as high users. Only 1 in 3
reported ever participating in a face-to-face support group. After 1 year, 43%
of the high users and 21% of low users had experienced resolution of their
depression. Most still participated in the ISG, as well as in
face-to-face treatment. More high ISG users stayed in treatment than low
users did.
Nearly all rated emotional support as ISGs' chief benefit. The groups allow individuals to
discuss feelings they may not otherwise have the opportunity to explore, Ford
said, if their prime mode of care is pharmacotherapy. The ISGs
also prompted users to take a more active role in their own care, by
encouraging them to ask their health care professional questions or seek a
change in medications.
Some physicians have raised concerns that
individuals with mood disorders, who may have little social support to begin
with, will deepen their isolation by spending hours online. However, the
"That's not surprising in a 1 year
period," Ford said, asserting, "ISGs won't
realize their full promise until they teach members how to get more support
from people around them."
LOOKING FOR SUPPORT
Finding the right ISG may take some
exploration. Depression tops the list of ISGs most
sought by visitors to the Web site of the American Self-Help Clearinghouse
(ASHC), http://selfhelpgroups.org, says Edward Madara,
MS, ASHC's director. The ASHC helps consumers find or
form community and online groups for a wide range of illnesses, addictions,
disabilities, and other problems.
In selecting ISGs
for its database, Madara notes, ASCH looks for those
with enough contributors to provide a variety of perspectives, experiences,
resources, and practical tips. Questions and comments ideally prompt timely and
pertinent responses. Members support one another, foster coping skills, and
refrain from making judgments.
Some ISGs for
individuals with mood disorders are peer-led. Others use a moderator or
facilitator, often a person with the illness that is the group's focus. Some
enlist a psychiatrist, psychologist, social worker, or nurse to answer
treatment-related questions. However, that's not always a plus, because the
professional may dominate discussions, says Madara.
Quality varies more in ISGs
than in community groups, he says: "Anyone can hang a shingle in
cyberspace." Some groups turn into a "pity party" in which
complaints dominate the discussion. Sellers of products or services may try to
exploit the vulnerable, posting "it worked for me" messages. Frequent
or hostile posters can discourage others from contributing. Individuals with Münchausen disorder occasionally intrude (See "Faking
It Is Easy Online"). Misinformation may not be as serious a problem as
physicians fear, however; in a well-functioning group, members rapidly correct
each other's errors.
A CHANGING PICTURE
Many ISGs for
individuals with mood disorders represent the determined effort, at least
initially, of only one person. Organizations, even those with a network of
community support groups, Madara says, have been
slower to establish an online presence, but that picture is changing.
The online forums of the Depression and Bipolar
Support Alliance (DBSA), drew 14 000 users in February 2003—a typical month,
says Lisa Goodale, LSW, DBSA's
constituency relations director (http://www.dbsalliance.org/). Users can
participate in forums for individuals with depression or bipolar disorder, for
family and friends of individuals with those disorders, and for those
interested in state and national advocacy. This month, the DBSA (which has more
than 1000 face-to-face support groups across the
The National Alliance for the Mentally Ill
(NAMI) maintains an e-mail list called KnowHow for
NAMI consumer members (http://www.nami.org). NAMI plans to launch a new Web
site this month, and will offer Web-based ISGs for
individuals with major depression, bipolar disorder, anxiety disorders, and
other chronic mental illnesses. The site will include ISGs
for spouses, families, children, and parents of individuals with such illnesses
as well, reports Watt Hamlett, NAMI's
senior Web developer. Facilitators will work with these groups, too.
The Depression and Related Affective
Disorders Association (DRADA) offers a peer-support program that links individuals
with depression or family members who wish to e-mail, write, or talk with
others with similar concerns, reports Wendy Resnick,
RN, MS, DRADA's director of support services
(http://www.drada.org). At any given time, she says, several hundred pairs
participate. DRADA has trained leaders for more than 90 community support
groups for individuals with depression and their families, mainly in
Large information sites such as Yahoo!,
(http://www.yahoo.com), Topica
(http://www.topica.com), and About
(http://www.about.com) offer dozens of ISGs. Patients
also can find depression message boards and chats at Internet service providers
such as America Online (http://www.aol.com) and Microsoft Network
(http://www.msn.com).
At About network's depression site
(http://depression.about.com), for example, long-term site users moderate chat
rooms and forums. They lead discussions, suggest resources, and protect the
room from occasional disruptive posters, according to Nancy Schimelpfening,
MS, a community health educator with depression who
serves as overall section guide. "We get many postings about
medications," Schimelpfening says, "but the
main thing people are looking for is someone to lend them a sympathetic ear and
help them get through the day."
Patients increasingly turn to the Internet to
make health care decisions,
Faking It Is Easy Online
While many approach Internet encounters in a
spirit of honesty, the anonymity of the medium can provide easy cover for
individuals with factitious disorders. Some desire attention or sympathy, while
others seek revenge or control over others. Marc Feldman, MD, a psychiatrist
practicing in
Most of the 35 cases he has documented
involve medical illnesses, with bogus reports of life-threatening crises, calls
to 911, surgeries and other procedures, and miraculous recoveries. Individuals
with MBI betray themselves by caricaturing genuine illness, often citing
textbook lists of symptoms that may include depression as one of many.
One man joined an ISG for individuals with
bipolar disorder, claiming to suffer profound depression. When group members
suspected his ruse and challenged him, he threatened to kill himself. He later
signed on, professing to be the allegedly dead man's son, and blamed the group
for pushing his father to the edge. Some members of the group were so distressed, Feldman said in an interview, they actually
became suicidal themselves.
"Outing" of a pretender may make
some members of an ISG feel hurt and betrayed, and leave the group in disgust.
At minimum, such deceptions divert the ISG's
attention from its primary focus.
Individuals with MBI, when detected, may
castigate the group, saying, "If you had been more supportive, I wouldn't
have had to make up stories." Unfortunately, says Feldman, individuals
with MBI can gain new audiences merely by clicking from one ISG to another
(South Med J. 2000;93:669-672).—L.L.
Feeling Blue, Internet Users Go Online
About 1 in 5 Internet users in the
People with chronic diseases or disabilities,
and caregivers who live with a care recipient search more for mental health
information than other Internet users do. These findings come from a Pew
Internet & American Life Project report, scheduled for release this month
at http://www.pewinternet.org/. The report draws on a nationwide telephone
survey conducted during November and December of 2002 of 2038 individuals in
the
Extrapolating from these results, Pew
researchers say 54% of Internet users, or about 63 million
At the MEDLINEplus
consumer data base of the National Library of Medicine,
http://www.medlineplus.gov, depression is the most
viewed of 30 mental health topics and usually among the 20 most searched-for
topics of the site's 600 health concerns, according to Naomi Miller, MLS, MEDLINEplus content manager.
Marketing data also show intense interest in
depression. During January through March 2003, Internet users worldwide
conducted more than 2.2 million searches for depression and 1.8 million searches
for the 9 most-used drugs to treat it, according to comScore
Networks, a global market research firm,http://www.comscore.com. The
most-visited depression information site, the depression "condition
center" at WebMD, http://webmd.com, drew more
than 100 000 visitors, comScore reports.
By May 2003, more than 400 000 individuals
had taken a 20-item depression screening questionnaire that Daniel Ford, MD,
MPH, and colleagues at Johns Hopkins University School of Medicine first placed
in 1999 on Aetna InteliHealth, a large health
information portal (http://intelihealth.com/depressiontest). About 50% of test
takers show a high likelihood of having major depression; they are urged to see
their doctor. The researchers hope this confirmation will help persuade those
who need help to get it.—L.L.