Do-It-Yourself Medicine

http://www.the-scientist.com/?articl...self-Medicine/

Do-It-Yourself Medicine (Cover story, The Scientist)

Patients are sidestepping clinical research and using themselves as guinea pigs to test new treatments for fatal diseases. Will they hurt themselves, or science?

By Jef Akst | March 1, 2013

Editor's Note: The author of this article, The Scientist editor Jef Akst, has launched a blog about her research into this story. Read more about Eric Valor and other patients taking a more active role in their own care at DIY Medicine.

On August 10, 2011, Joan Valor Butler diluted a solution of 5 percent sodium chlorite in 1 gallon of slightly salted water, and slowly injected 1 liter of the mixture into her 42-year-old son’s feeding tube, at his request……

……….. While the ALS community has taken do-it-yourself (DIY) medicine further than most, patients across the board are starting to play a noticeably bigger role in their own care. “There’s a new model of medicine in my opinion,” says neurologist and clinical researcher Richard Bedlack, director of the Duke University ALS Clinic.

“Once upon a time we had a very paternalistic system, where patients would come, and they would have a set of symptoms, and doctors would ask all the questions and give all the answers. And in the past decade things have really shifted almost to the other side, where a lot of medicine is autonomous now. You see these DIY programs where patients are deciding, after doing an Internet search, that this is what they want to do; they go get the medicine; they take it; and they log their own output measures.”…. (lengthy article follows)…

Readers say:

Fantastic article!!
What I find astonishing is that in the minds of academics and medical professionals there is still a debate over whether terminally ill people should experiment on themselves, or even healthy people for that matter.
There never has been such a debate. People have always experimented on themselves and they always will, but they rarely share this with their physicians for fear of criticism.
The only debate is whether we want to capture this information and learn from it.

March 1, 2013
the reason we are forced to do this is the glacial pace at which development progresses. We can't wait 10 years for the process to play out. and with the Lithium project, we had first urged the powers that be to take action. When that request was refused we took it into our own hands. What we found, aside from the futility of lithium, was that we forced quick action from the clinical community. We won't hesitate to do it again. The paradigm of helpless patients quietly dying is OVER.

March 6, 2013
What a great article. The same thing is happening with autologous stem cell treatment. The FDA is regulating our own stem cells if they are manipulated so as to make them clinically relevant as drugs. Terminally ill patients are being denied access to potentially life saving therapies even though there is very little risk.
The dirty little secret that no one wants to talk about is that billions of dollars are at stake. Those in research, Big Pharma, FDA, politicians, charities, all have conflicts of interest. They stand to lose a lot of money if patients can be treated by a doctor with something as simple as their own stem cells or something such as sodium chlorite that Valor was was self administering. Look what they've done to fish oil. $130 a bottle for Omacor because it's FDA approved. Sick people are worth a lot of money.
The public is gullible. They still believe that the FDA, academia, medical professionals, charities are all working to help find cures. It simply isn't so and sick people are paying for it with their lives.

Excellent article Jef Akst! Eric Valor is a true warrior in the ALS battle. ALS is cruel and unusual as far as diseases go. In reading his story you can't help but place yourself in his shoes and think "what would I do?" The Multiple Sclerosis disease community finds itself in a similar situation. I was diagnosed with MS in 2004. We only have FDA approved drugs to treat the 1st stage of MS (Relapsing Remitting) There are up to 3 more types/stages of MS that have NO FDA approved treatment (other than 1 chemo drug that treats PPMS) How is the MS community handling this? We are becoming medical tourists and seeking Adult Stem Cell therapy in other countries by the thousands. We have been criticized by many for taking matters into our own hands, but "what would you do," when a nursing home or death might be in the near future?! Some of the FDA approved MS drugs available carry a black label warning, and side effects can be things like leukemia, and herpes! Being treated with our own cells is far safer then the FDA approved drugs for Multiple Sclerosis.