TheMoonIsBlue
Senior Member
- Messages
- 442
I guess this is a question and a statement both. In all the of the USA, with many major research hospitals, is there ANY one that is taking an active interest in XMRV or even knows what the heck is going on with XMRV and M.E./CFS? I have a major university research hospital in my state and several nationally acclaimed hospitals (for other illnesses) and what the heck............does anyone know what is going on?
Are any infectious disease doctors/HIV doctors interested in this? If you call most of them and say you have CFS many will say "We do not treat that". Is that changing at all with XMRV? I wonder what would happen if I called a bunch of HIV doctors and said I am severely ill with CFS and need a consultation about XMRV and the recent discovery of retroviral infection in CFS? I wonder how long the pause would be on the other end of the line...............?
Are any of them even willing to see M.E./CFS patients and help them order the test for XMRV?
It has been almost one year since the paper was published in SCIENCE. Now we have the Lo/Alter paper.
I'm not expecting a cure or even treatment over night. I did expect more to happen that what is happening......!
Am I naive to think, atleast a couple research hospitals (or even one) would want to do a study on M.E./CFS patients and XMRV, retroviruses, immune dysfunction?
Seriously............is WPI going to be our only hope for the next "X" number of years?
---Has anyone called, written, emailed doctors, hospitals, researchers, etc., to find out if they are even aware of XMRV?
I know it is still early in the game, I'm not even talking about treatment for XMRV/MLV's.........but STUDIES.
Where are the studies????? I thought there would be so many more.
I'm just really frustrated right now. I'm sure you can tell!
Are any infectious disease doctors/HIV doctors interested in this? If you call most of them and say you have CFS many will say "We do not treat that". Is that changing at all with XMRV? I wonder what would happen if I called a bunch of HIV doctors and said I am severely ill with CFS and need a consultation about XMRV and the recent discovery of retroviral infection in CFS? I wonder how long the pause would be on the other end of the line...............?
Are any of them even willing to see M.E./CFS patients and help them order the test for XMRV?
It has been almost one year since the paper was published in SCIENCE. Now we have the Lo/Alter paper.
I'm not expecting a cure or even treatment over night. I did expect more to happen that what is happening......!
Am I naive to think, atleast a couple research hospitals (or even one) would want to do a study on M.E./CFS patients and XMRV, retroviruses, immune dysfunction?
Seriously............is WPI going to be our only hope for the next "X" number of years?
---Has anyone called, written, emailed doctors, hospitals, researchers, etc., to find out if they are even aware of XMRV?
I know it is still early in the game, I'm not even talking about treatment for XMRV/MLV's.........but STUDIES.
Where are the studies????? I thought there would be so many more.
I'm just really frustrated right now. I'm sure you can tell!