His Doctors Were Stumped. Then He Took Over. https://nyti.ms/2kzaTet Dr with rare castleman disease (immune) finds his own treatment, when no one else could. Some similar symptoms to CFS ME. Can any technical people comment about possible applications / relationship of MTOR treatment in ME? Anyone have any thoughts on this? Please tag any technical people that can give expert input. @Hip @Jonathan Edwards ------------- Exerpt below: After a round of chemotherapy, he improved enough to be discharged and started looking into what secrets the tests might reveal. It turned out that five months before he started noticing symptoms in December, his T cells — one of the key weapons in the body’s immune arsenal — had starting activating, preparing for a fight even though there was no apparent threat. Then, about three months before his relapse, he noticed that he had started producing more VEGF, a protein that instructs the body to make more blood vessels, and is another sign of an immune system gearing up. These two hints gave him an idea: Maybe the problem was with one of the body’s communication lines, the one that triggered production of VEGF and also told the T cells to begin activating. If Dr. Fajgenbaum could get his body to shut down that communication line — known as the mTOR pathway — he might be able to stop his immune system from overreacting and prevent a relapse. The discovery was exhilarating. “I felt like I was part of steering the ship,” Dr. Fajgenbaum said. “This time I was part of this team.” With this major clue in hand, he and his doctors turned to potential treatments, existing drugs that were known to shut down the mTOR pathway. The one that seemed the best option was practically hiding in plain sight. Sirolimus, also known as Rapamune, was commonly given to kidney transplant patients to prevent their bodies from rejecting the organ. The drug had been on the market for years and was known to have few serious side effects.