As many of you know, no one in the scientific or medical community knows exactly why Valcyte improves symptoms for many CFS sufferers. Just want to know people's opinions and thoughts, especially from those who are or have taken Valcyte and how they felt it was working and changed their disease.
Is it more because the drug inhibits viral replication and reduces viral load of damaging viruses or more because the drug modulates or suppresses the immune system therefore reducing a dysfunctional immune response?
This answer to this question if we ever find it will give a clue as to what are possible major causes/contributing factors to CFS, viral infection or autoimmunity (or both)?
Not sure I have a reasonable guess about the actual function of Valcyte, but I can share my experience.
Daughter and I both had active HHV6 and EBV, but no CMV infection at all. On Valcyte, our flu-like symptoms cleared up or improved as did a large part of our cognitive symptoms. These symptoms have not returned in the roughly 2 years we've been off Valcyte. Based on that information, my best guess is that the effect, for us at least, was not in suppressing an autoimmune condition. I would expect our conditions to start declining again after stopping Valcyte if the main effect was immune suppression. In fact, we have both continued to very slowly improve, which could be consistent with healing of some damage done by the virus.
Unfortunately, the first immune data I have begins just as I stopped Valcyte, so I can't compare before and after Valcyte, just what's changed in my immune labs since.
T0 -- at the end of Valcyte treatment
T1 -- ~10 months post-Valcyte
T2 -- ~20 months post-Valcyte (results pending)
My total B cell number, CD4+ cell number, and NK cell number are normal, but all declined from T0 to T1.
CD8+ count was low at T0 and even lower at T1.
CD8+CD95+ count was very low at T0 and even lower at T1.
CD4+CD38+ count (which I'm told is indicative of viral infection) was very high at T0 and even higher at T1.
I also have a number of cytokine abnormalities which changed over the first 10 months post-Valcyte (and not for the better as far as I can tell). The most consistent abnormalities are very low IL-17 and IL-23, both of which were low at T0 and even lower at T1.
I'm no immune expert, but these data don't seem to be consistent with an autoimmune condition that was controlled by Valcyte at T0 and not at T1. As far as I can tell, it looks more like a chronic viral infection that is not under control.
I have loads more immune data, so if you think it will help you develop your thinking about the effect of Valcyte, let me know what data you need. If I have it, I'm happy to share.