Lou Gehrig's Disease: Patients Take Research Into Their Own Hands

Makeshift Treatments: Too Much Information?

The DIY sodium chlorite trial reflects the shortage of effective treatments amidst a sea of promising preliminary data, data once buried in subscription-only medical journals that can now be found online.

"We have more information now but we don't know what it means," said Heywood. "Broad access to this kind of information, and a lack of control over how people use it, will likely result in a death. Someone's going to die making a mistake because information's coming in fast and we don't have the tools to understand it yet."

Patients often are desperate to slow the relentless disease, which usually kills in five years or less.

But Valor said desperation is best left out of treatment decisions.

"Desperation leads to irrational thought and irrational thought leads to irrational action," said Valor, adding that people with ALS often fall victim to snake oil salesmen and scams.

"Desperate people are prime targets for the unscrupulous,'' he said. "This was one of the reasons for the creation of the FDA and the requirements for companies to prove safety and efficacy before allowing sales to the public. Unfortunately, not all bureaucracy is well-suited to all situations, and people with ALS do not have a lot of time."

Valor said patients should research treatments thoroughly by reading studies and talking to experts, including their own doctors. And to those who think they have nothing to lose, Valor says think again.

"Every day is precious to people with ALS and anything that decreases the number or turns them even more painful or bleak, simply must be avoided," he said. "Ask the family of any current or deceased person with ALS if they would like even one more bright and happy day together."

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