Hi scott1, a cfs/me forum i am mostly active on has others with hhv6 and myself with cmv had our viral titres lowered with famvir. Famvir isnt aknowledged to be effective against cmv or hhv6 or for that matter ebv its just been found effective through personal experience. I am now on valcyte which is a better oral absorbed med similar to ganciclovir as well as famvir. Another cfs patient had a doctor who was in close company with the makers of famvir and said it had a wider range of activity then approved for, apparently it would have been too costly to do further testing, they already had the testing done for oral, genital herpes and shingles, so i dont think they thought it would have been a big enough market to make money on getting approval for other indications like ebv/cmv/hhv6, so the rumors go, but many have had symptom improvement as well as viral markers improve on famvir for cmv/hhv6. in the cfs world famvir is seen as a middle of the road antiviral effective against most herpes virus, maybe not as strong as valcyte/ganciclovir but also not as toxic either and famvir can be taken for much longer periods.
I would like to use interferon but 99.9% of people with cfs/me wont get access to it. I do use an interferon inducer called cycloferon and this has been shown to improve my nk function in testing, http://portal1.democms.ru/resources/fil ... poules.pdf
The problem with cfs/me is that even though immune dysfunction and chronic infection can be shown, the majority of health care systems around the world dont recognise it as such but class it as a form of depression. A common example of our situation is that before brain scans and other diagnostic procedures were developed for MS, sufferers were classed as having a depressive disorder, at the end of the day who wouldnt be but its only secondary from the initial condition and loss of your former self that can cause this. Now for cfs/me sufferers there is technology there to diagnose it but its more a battle of politics. There are some good doctors and researchers in the field but very few compared to other fields and also the research dollars are terribly low eg would be that the total budget In the US spent on me/cfs research from the govt i have recently read is $6m and when u read what sort of research they are doing there isnt alot being spent in proper research. Most illnesses have more money in one study then the entire 12 month budget on cfs/me research.
Sorry im having a whinge, just very frustrated by the lack of support or even recognition of cfs/me by main stream medicine, treatments used by us are all off label so many treatments we have to pay full price for, interferon would probably be to expensive for most as it wouldnt be subsidised at all for us. Most of us direct our treatments at what infections we have and try to improve our immune function the best we can as well as symptom type treatments etc for sleep, pain etc.