when the pull the trigger? "patients like me"


Senior Member
I was not sure where to post this....

Reading the comments about the first international XMRV conference on these Forums has been very educational for me.

It seems:

On one side of the coin we have the federally funded scientific research community in a major confusion right now, and very limited or no funding will be available until they work out their differences.. this may be months? Another year or two? Three? Nobody knows.

On the other side of the coin, we have Dr. Jamie Deckoff Jones and her daughter, Ali http://treatingxmrv.blogspot.com. Dr. Jamie Deckoff Jones has completed six months of a anti-retro viral cocktail, and both her and her daughter are apparently approaching becoming healthy.

Very valid arguments are be made for not jumping on anti-retroviral cocktail bandwagon, but the reality is - some patients are going to start searching for doctors who will start prescribing off label use of anti-retrovirals for CFS..

what struck me in reading the conference information and then Dr. Deckoff-Jones blog in the last few days was -- how useful Cort's "Patients like Me" project might be for us CFS/ME/FMS patients. Consider how useful the detailed information in the "Patients like Me" database could be in a patients decision-making process. I know this scares some people and some doctors to think that patients may be out there pulling the trigger too early, but it always helps to have good quality information in order to make a decision about treatment options, anti-retroviral cocktail or other (and it IS a personal decision). What cohort do I belong to? Etc.

Cort - you guys need more money for this project?

Misfit Toy

Senior Member
azt...that is what she takes. Hmmm. What about valycte? I can't read through her whole blog due to being ill, but this is interesting. Thanks for posting.