PatientsLikeMe, an Internet start-up, creates information-rich communities for the chronically ill. Is it the next step forward in medical science – or just a MySpace for the afflicted?

Writing in the New York Times Magazine, Thomas Goetz describes what happens when patients band together on the Internet to share their most intimate medical information, from symptoms to drugs and dosages.

… PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago. The 7,000 members of PatientsLikeMe, in other words, are beta testers – they may be the vanguard of how we all will care and treat our résumé of chronic diseases. They’re not typical patients, in the sense of waiting for advice from a doctor. They are, rather, co-practitioners treating their conditions and guiding their care, with possibly profound implications.

… Of course, turning patients’ experiences into usable data raises a host of questions for medicine. When patients take the reins of their own treatment, what role do doctors play? What’s to keep patients from misinterpreting the streams of data and finding false hope – and what’s stopping them from embarking on unproven and even risky treatments or dosages? And what happens if the real-world information at PatientsLikeMe contradicts the clinically proved protocols of medical science?

From Fox News:

Janice Dean, a weather forecaster on the Fox News Channel, was diagnosed with multiple sclerosis two and a half years ago. She said she chose to discuss her condition this week because it is National MS Awareness Week.

She believes that with a positive attitude she and others can beat this disease.

“I really don’t want to be the poster girl for this disease,” she said. “But I do want others with it to know that they are not alone. There are others out there that are just like them going through the same thing. And my life is fairly normal. I just have a few little obstacles that I have to deal with.”

From the Dallas Morning News:

For people living with diabetes, multiple sclerosis and other chronic conditions, blogs are increasingly providing support and information. Experts say blogging can be a useful tool for grappling with medical conditions and building connections with other people with shared experiences. At the same time, caution is urged: not all information out there is good information, and posters’ privacy can’t be assured.

From the New York Times, a discussion among people with chronic illness about how much information to give their employers about their medical condition. Richard M. Cohen, author of “Strong at the Broken Places,” says he didn’t tell his employer about his multiple sclerosis because he was afraid he would be considered unemployable.

Others disclose their diagnoses right away. Gayle Backstrom, author of “I’d Rather Be Working,” advises people to keep their conditions to themselves as long as possible, just to be on the safe side.

The Americans with Disabilities Act prohibits an employer from dismissing or failing to hire a chronically-ill employee on the basis of that disability “if they are able to do the job with reasonable accommodation,” Backstrom said. But in many cases, “reasonable” and “able” and even “job” all become open to interpretation.

From Backstage.com:

Actors like Ann Marie Morelli, who played Hermia in Midsummer Night’s Dream in Manhattan to positive reviews last year, are trying to get audiences to rethink their ideas about disability. Morelli uses a wheelchair.

Indeed, people with disabilities are rarely seen on stage, on television, or in films despite being a sizable minority in the United States.

According to the U.S. Census Bureau, about 18 percent of Americans — over 51 million people — have some level of disability. Yet, according to a 2005 Screen Actors Guild report, less than 2 percent of TV characters display a disability, and only 0.5 percent have speaking roles.

… Robert David Hall, who plays Dr. Al Robbins on CSI: Crime Scene Investigation, said the absence of performers with disabilities from the report reflects Hollywood’s reluctance to even consider writing roles for and casting these performers.

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The Barack Obama campaign website highlights the candidate’s agenda for people with disabilities. It includes a short video in which he calls for building “a world free of unnecessary barriers, stereotypes, and discrimination,” and endorses screening, early intervention, research and education services for people with autism. A comprehensive document called the “Plan to Empower People with Disabilities” is included. It calls for:

• Providing educational opportunities for people with disabilities (which includes such points as fully funding the Individuals with Disabilities Education Act (IDEA); early intervention for children with disabilities; and improving college opportuities for high school graduates with disabilities)
• Ending discrimination and promoting equal opportunities for people with disabilities
• Increasing the employment rate of people with disabilities
• Supporting independent, community-based living for Americans with disabilities

Accompanying the plan is an endorsement from four former Clinton administration officials who call Obama “the disability community’s best choice for change.”

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From the New York Daily News and MSNBC, news about a book by Richard M. Cohen, bestselling author whose earlier memoir ‘Blindsided’ gave readers an insight into his life with multiple sclerosis and colon cancer.

Ninety million Americans live with chronic illness. In his latest effort, Cohen helps readers explore their world by documenting the journeys of five people who have adapted to illness. Among the illnesses represented are ALS (also known as Lou Gehrig’s disease), non-Hodgkin’s lymphoma, muscular dystrophy and bipolar disorder.

His message: these “citizens of sickness” are resilient, valuable people who are determined to live life on their own terms. In bearing witness to their lives, Cohen challenges public ignorance and offers lessons of courage and hope.

Married to “Today” show co-anchor Meredith Vieira, Cohen had trouble talking to his wife and their three kids about his anguish. In his autobiography, “Blindsided: Lifting a Life Above Illness: A Reluctant Memoir,” he disclosed all the details.

“I really was reluctant because I fought tooth and nail against revealing myself,” Cohen admits. “I didn’t want to tell my own story because the thought of actually laying open my life was unthinkable. (more…)