Reddit reviews Personal Trials: How Terminally Ill ALS Patients Took Medical Treatment Into Their Own Hands (Kindle Single)

In terms of whether the data collected by patients during a DIY trial such as the one described in my book, the answers I’ve gotten from researchers are quite mixed. This angle of the story was the focus of a feature I wrote for The Scientist back in 2013: http://www.the-scientist.com/?articles.view/articleNo/34433/title/Do-It-Yourself-Medicine/. Basically, the concern is that the data—which are self-reported by a self-selected population of patients—are biased. That said, I do think there are valuable clues in such information that could perhaps point to new directions for the treatment of a particular disease.

And just to clarify, so far NP001 has proven promising. Neuraltus has recently launched a follow-up Phase 2 trial to continue moving the drug toward clinical approval.

With regard to anecdotes about patient experiences, I chose to focus my book on the personal stories of Eric Valor (who is here in this AMA today), Ben Harris, and Rob Tison—three ALS patients who were involved in the DIY effort surrounding NP001. Ben and Rob both participated in the first Phase 2 trial, and both benefited from the drug, but were unable to continue taking it after the trial ended. Tragically, both Ben and Rob died more than three years ago. https://www.amazon.com/Personal-Trials-Terminally-Patients-Treatment-ebook/dp/B01D01AC6C