The internet gives patients and caregivers access not only to information, but also to each other. | Pew Internet & American Life Project

Many Americans turn to friends and family for support and advice when they have a health problem. This report shows how people’s networks are expanding to include online peers, particularly in the crucible of rare disease. Health professionals remain the central source of information for most Americans, but "peer-to-peer healthcare" is a significant supplement.

This report is based in part on a national telephone survey of 3,001 adults which captures an estimate of how widespread this activity is in the U.S. All numerical data included in the report is based on the telephone survey. The other part of the analysis is based on an online survey of 2,156 members of the National Organization for Rare Disorders (NORD) who wrote short essays about their use of the internet in caring for themselves or for their loved ones.

via pewinternet.org

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Exhausted by Chronic Fatigue Syndrome, and Its Doubters - NYTimes.com

Chronic fatigue syndrome causes a host of debilitating symptoms: profound exhaustion, disordered sleep, muscle and joint pain and severe cognitive problems, among others. But what causes the syndrome itself?

Well

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Since the first cases in the United States were identified in the 1980s, scientists have been divided over that question. Some have suspected that one or more viral infections are likely to play a central role.

But many other researchers — not to mention relatives, friends, employers, doctors and insurers of the million or more Americans estimated to suffer from the illness — have dismissed it as stress-related, psychosomatic or simply imaginary.

Now recent back-to-back announcements have highlighted both the volatility of the issue and the ambiguity of the science, and have alternately heartened and dismayed patients.

via nytimes.com

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