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Chronic Fatigue Syndrome (CFIDS) Patients Most Active Group on the Internet

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By Press Release • • March 1, 2000

WASHINGTON -- The increasing availability of the Internet is helping to fuel a rapid growth in self-help groups, especially for people with diseases and problems viewed as very embarrassing. That is according to a new study published in the February issue of American Psychologist, a journal of the American Psychological Association (APA), which says more Americans are trying to change their health behaviors through self-help than through all other forms of professionally designed programs.

The study's authors, Kathryn P. Davison, Ph.D., of The Human Asset, Dallas, Texas; James W. Pennebaker, Ph.D., of the University of Texas at Austin and Sally S. Dickerson, B.A., of the University of California at Los Angeles, looked at support-group participation for 20 disease categories in four metropolitan areas (New York, Chicago, Los Angeles and Dallas) and on nationwide on-line discussion groups.

Support seeking was highest for diseases viewed as most stigmatizing, including alcoholism, AIDS, breast cancer and anorexia; support seeking was lowest for less embarrassing but equally devastating disorders, such as heart disease, hypertension, migraine, ulcer and chronic pain.

That finding may be expected for on-line support groups, in which a relative amount of anonymity is present and, therefore, confiding can occur without immediate social repercussions. However, what explains the higher support seeking for conditions associated with embarrassment in the city support groups? "These groups," according to the authors, "are populated by individuals whose illnesses, either by their very nature or as a result of treatment (e.g., mastectomy), have forced them to experience embarrassment and social stigmatization. The seriousness of their conditions, the weight of their illness impact and the degree of readjustment required under the circumstances set them apart from their immediate social setting and propel them toward others who have been similarly marked."

The researchers also found the tendency for people to participate in support groups varied considerably by the cities studied. Dallas had the lowest level of support with nearly 140 groups per million people, whereas Chicago had the highest at nearly 755 groups per million. This study did not look into the reasons why a city has more support groups than another, but the authors say local factors such as mental health appropriations levels, foundation support, population density or historical and cultural orientations may influence the level of mutual support.
When the researchers looked at on-line forums of support groups, several patterns emerged. Alcoholism, which was first in the face-to-face support group sample, showed a much lower level on-line, ranking ninth on America On Line and seventh on the Internet. "This is understandable," say the authors, "given the long tradition of actual support enjoyed by Alcoholics Anonymous members, who may find virtual support a poor substitute for the group experience." Another difference is that chronic fatigue syndrome, which was not recognized as a diagnostic category until 1988, had the highest activity level of all of the Internet groups. That, combined with the high rate of use of on-line support groups by multiple sclerosis sufferers, suggests that those with rare and debilitating conditions find on-line support attractive because getting together physically would present a number of practical barriers.

An important finding of the study, say the authors, is that more than 60 percent of groups describing themselves as self-help are professionally facilitated. "Self-help and professional help are often perceived as mutually exclusive, but the data indicate that such perceptions are misleading," said the researchers. "Group participants may not be resistant to professional input; rather, they may need to speak and be heard about issues not addressed within the health care setting."

As for the effectiveness of self-help groups, the researchers say prior investigations have yielded positive results overall. The self-help movement, add the authors, has tremendous therapeutic potential, especially in the current culture of institutional health care, which is still far from embracing psychological support into health care delivery.

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