By AMY DOCKSER MARCUS

Some patients with fatal Lou Gehrig's disease, frustrated by the slow pace of clinical drug trials or unable to qualify, are trying to brew their own version of an experimental compound at home and testing it on themselves.

This effort has important implications for both people's health and scientific research. Until clinical trials are conducted, no one knows for sure if a drug is either safe or effective, and patients could potentially harm themselves or even accelerate the course of their disease. Some researchers worry that patients who report online that a do-it-yourself drug isn't working may discourage patients from joining or staying in a formal trial.


The patients who are experimenting with these do-it-yourself drugs say it is a calculated risk worth taking, given the average life expectancy is only two to five years after diagnosis and there are no effective treatments. Many patients say they want to slow down the progression of the disease, in hopes that an effective therapy will be found in time to save their lives.

ALS, also known as amyotrophic lateral sclerosis or Lou Gehrig's disease, affects around 30,000 people in the U.S. Progressive nerve cell damage in the brain and spinal cord leads to a loss of muscle control.

"We simply don't have time to wait for the results of [clinical trials]. Our life spans are much shorter than the [Food and Drug Administration] approval process," says Ben Harris, 45 years old, a medical physicist from Bloomington, Ind., who was diagnosed with ALS in January 2011, and who is taking a home-brewed drug. Mr. Harris answered questions by email because he said his speech is difficult to understand due to the progression of the disease...
http://online.wsj.com/article/SB1000...943484054.html

https://sites.google.com/site/alschlorite/documents

They are completely right to do so. The FDA is nuts.

http://friends4eric.blogspot.com/2011/07/all-roads.html

There is also much discussion concerning sodium chlorite therapy on an ALS site, ALSTDI. Must become a member to access the information

What have they got to lose? i wish them success