- The Washington Times - Thursday, November 27, 2008

CLAREMONT, Calif. | Until last year, Alan Felzer was an energetic engineering professor who took the stairs to his classes two steps at a time. Now the 64-year-old grandfather sits strapped to a wheelchair, able to move little but his left hand, his voice a near-whisper.

Mr. Felzer suffers from ALS, also known as Lou Gehrig’s disease. The fatal neurological disorder steals the body’s ability to move, speak and ultimately to breathe. But rather than succumb to despair along with his illness, Mr. Felzer turned to the Web to become his own medical researcher — and his own guinea pig.

Dozens of ALS patients are testing treatments on their own without waiting on the slow pace of medical research. They are part of an emerging group of patients willing to share intimate health details on the Web in hopes of making their own medical discoveries.

Some doctors caution that such patient-led research lacks rigor and may lead to unreliable results, false hopes and harm to patients.

“The Internet is a wonderful tool; but you know, it’s buyer beware,” said Dr. Edward Langston, immediate past chairman of the American Medical Association’s board.

In Mr. Felzer’s case, the experiment’s results illustrate the obstacles that stand between patients and self-discovered breakthroughs. The drug he tried did no good. But he and his family felt they had little time and little to lose in trying.

“ALS is such a short illness,” said Mr. Felzer’s wife, Laura. “You want to do what you can as fast as you can.”

The U.S. Food and Drug Administration has approved only one drug to treat ALS symptoms. It only works for some patients, and its effects are limited. As a result, Internet forums for ALS patients brim with links to the latest research offering any hint of promise. After Mr. Felzer was diagnosed last year, his daughter, Karen Felzer, dived into the forums and found new hope.

In a recent small study, Italian scientists reported that every ALS patient given the drug lithium, commonly used to treat bipolar disorder, saw the disease’s progress slow substantially.

Many ALS patients began trying lithium on their own. They persuaded their doctors to prescribe it “off-label” — a use not approved by federal drug regulators. Off-label prescribing is a common practice, researchers say, when patients are facing a terminal illness.

Despite the risks, Dr. Langston pointed out that doctors often stumble upon treatments, and patients could possibly do the same.

“If patients are willing to share their experiences, that may in fact occur,” he said.

Mr. Felzer began taking lithium in January, and his scientifically minded family reached out to other ALS patients. The task of leading the ALS-lithium project fell to Karen Felzer. Her partner in the effort was Humberto Macedo, a computer systems analyst, father of six and ALS patient in Brasilia, Brazil.

The study grew naturally out of the strong reliance of ALS patients on one another for information, Mr. Macedo said.

Working online, Miss Felzer, 33, and Mr. Macedo, 42, recruited nearly 200 patients worldwide to take a specific lithium dosage and answer standard surveys to gauge their symptoms. They began running their study through a Web site called PatientsLikeMe.com, using it to attract volunteers and track their progress.

On the site, patients share detailed information about their symptoms and the drugs they are taking. The site focuses on conditions that have stubbornly resisted medical science, such as ALS, Parkinson’s and multiple sclerosis.

The site’s founders hope professional and amateur researchers alike will dip into the resulting pool of data and emerge with insights that lead to better treatments.

“My ultimate frustration that drove this site into existence was an overall feeling that there was a lack of transparency and speed or urgency” by the medical system, said Jamie Heywood, who co-founded PatientsLikeMe months before his brother died of ALS.

He too hoped that lithium was the breakthrough he and others had been seeking.

But after six months, none of the 87 people who stuck with the study showed any letup in the disease’s progress, Miss Felzer said.

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