I don't think we should throw the baby out with the bathwater regarding Hustler's success with the raltegravir and tenofovir combination. He is not the first person to have seen ME/CFS benefits from this particular combination, so I think we need to give credence to this.
But the proviso is that success with the raltegravir and tenofovir combination does not necessarily prove that there is any retrovirus involved in ME/CFS (although that does remain a logical possibility).
I mentioned earlier that the two antiretroviral drugs Hustler took also have antiviral effects against the herpes family viruses known to be linked to ME/CFS, as well as against HERVs, as well as immunomodulatory effects, and so his success on these antiretrovirals does not necessarily prove that a retrovirus is involved in ME/CFS. It may simply be due to the anti-herpes virus effects and/or immunomodulatory effects.
Indeed, Dr Chia has pointed out that some of his ME/CFS are on antiretroviral drugs for HIV treatment, and these patients' ME/CFS symptoms have not improved at all as a result of the antiretrovirals. Which suggests that the benefits that Hustler achieved on the antiretrovirals raltegravir and tenofovir are likely more related to the antiviral effects of raltegravir against herpes family viruses, and the potent cytokine modulating properties of tenofovir, and the anti-inflammatory effects of tenofovir.
Maybe if Hustler switched to a different set of antiretroviral drugs that do not have any anti-herpes virus effects, he would lose all the health benefits he has gained on raltegravir and tenofovir.
Or maybe there is a retrovirus involved in ME/CFS, not XMRV, but some other as yet undiscovered retrovirus, like the retrovirus which Dr Lipkin found preliminary evidence for. I think that is unlikely, but not impossible.
These two drugs, raltegravir and tenofovir, have been used by other ME/CFS patients to good effect:
Dr Jamie Deckoff-Jones and her
daughter Ali both had improvements in their ME/CFS after taking:
tenofovir (Viread) 300 mg once daily
raltegravir (Isentress) 400 mg twice daily
And the interesting thing is that when Dr Jamie came off raltegravir, she stopped improving; but her daughter Ali who remained on raltegravir kept on improving further. Ref:
here.
Then
Dr Michael Snyderman also had success in treating his ME/CFS with AZT, raltegravir and tenofovir. See his blog post
here. Snyderman says he can rule out the possibility that the benefits came from the anti-herpes virus effect of raltegravir:
5. Could the effect of the ARVs be really anti-herpesvirus activity?: No
DNA assays on my plasma for EBV and CMV DNA were negative. My lymphocytes were tested for active EBV infection at Mayo Clinic and were negative. A screening for active herpesvirus infection with CMV, EBV and HHV6 was negative at the WPI.
However, I don't think Snyderman can rule out the fact that the cytokine modulating properties of tenofovir might have immunomodulatory effects against other viruses linked to ME/CFS, such as enterovirus.
And on this forum, @
Ellkaye observed mild improvements in ME/CFS symptoms after taking the same combination of raltegravir and tenofovir.
@Ellkaye points out in
this post that tenofovir allowed him to tolerate raltegravir (he could not tolerate raltegravir on its own, but found that tenofovir lessened the side effects of raltegravir).