Jamie Deckoff-Jones MD:
When I started writing this blog, I was a very sick patient and the mother of a very sick patient, who had been neglected and abused by the medical profession. I made our experiences about trying to treat the disease public, because it was the only way I could be of service. Helping helps, and I was very much in need of help. Now I work for a non-profit dedicated to finding a cure for patients. I certainly don't want the WPI to be hurt because I am controversial.
I'm not really sure what to do about it, but keep restating that the WPI does not endorse my opinions and in my capacity as an administrator for them, I will not be telling other doctors how to treat their patients. But so many have written that it helps them for me to share my thoughts, that I will muddle through. There are an unbelievable number of people, isolated and without help.
I've been there. I believe that my current understanding of the illness has and will result in finding ways to ameliorate the suffering, sooner rather than later. The scientific effort is desperately needed, because meaningful treatment options are so limited at this time.
I would like to state publicly that I am personally grateful to any scientist working on XMRV. Read more>>