I'm the prior guest. Thanks for the info but VIPdx test are not verified yet – no sensitivity/ specificity characteristics (I asked them for this info) and do not measure viral load. The tests are not antibodies – it's for co-culture and PCR/DNA.

http://snapl.stanford.edu/research/ldn.html

http://www.sciencedirect.com/science?_ob=Articl...

The most effective known treatment for HIV/AIDS is low dose naltrexone, which also very effectively suppresses autoimmunity and is used to treat illnesses like multiple sclerosis and Crohn's disease. LDN also works well for many people with CFS/ME. If raltegravir is used in the treatment of CFS/ME, it should probably be combined with LDN. Though I have to say I'm still not convinced that antiretrovirals should be used at all, considering that they are unlikely to be curative and that there are over 200 other medications that can be used to treat CFS/ME, most of which are far safer. And many of the safer antivirals (mainly antiherpesvirals) can even be curative, as several studies have shown.

Of course, if someone performs a study showing that antiretrovirals can be curative, then I'll take that back, but until then, they are just one (expensive and toxic) possibility among hundreds of potential treatments.

As for a future, until you are dead there is always a future. Live, love, laugh for life is always short no matter what the circumstances are.

The first part of Patrick's remark is incorrect. Many of the biomedical clinicians who have seen thousands of CFS patients over the past decades have been stating since the late 80s that patients are as sick as HIV patients (before AZT and friends), patients with end stage renal disease and patients with COPD. This is a horrible and crippling disease.

In a NYT column CFS immunologist and expert Dr. Nancy G. KIimas made the following reply to a similar comment: “…But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it…”

http://www.peregrineinc.com/index.php?option=co...

Comparisons with HIV seem to me to be largely based on simply both being retroviruses, both causing immune dysfunction, so forth — similarities, certainly, but there are also important differences.

There's really no easy scale of “badness”. Certainly ME/CFS hasn't led to anywhere near the level of death that we saw from AIDS in the years before decent treatments for HIV, so I wouldn't personally say there's anything at all to suggest that untreated XMRV –> CFS–> death in anywhere even vaguely approaching the same proportion. I lived in the bay area when AIDS was unfolding, I remember it well, and no, we're not anywhere like that with this disease.

At the same time, if XMRV really is causative in ME/CFS, it's certainly associated with a high degree of disability in some folks. That's bad, too, even if it's not fatal, and I tend to think that trying to say “as bad” or “not as bad”, when you're talking about disabling illnesses, turns quickly into a weird and kind of meaningless pursuit.

I'd guess that it's theoretically pretty likely that people with XMRV will be more susceptible to various cancers. But saying that for sure will require a lot more research, and I'm sure the more virologist-types know a lot more about that than I do.

And honestly, I don't mean this to sound trite or whatever, but we all have a future until suddenly we don't anymore. Even if you did have a fatal disease, there's every reason to go on living as long as you can, which may wind up being as long as you might have anyway. Not that there's any way to know that anyhow, of course.

One of the hard things I've seen in HIV+ friends from time to time is that they sometimes feel, as soon as they're diagnosed, that they're on death's door. Really, most now live on for a long time with proper treatment. That winds up requiring another readjustment when they've been doing pretty well on medication for a while and realize they have no idea what they want to do with themselves, since they'd kind of given up on the whole “future” concept.

The one thing I've seen mentioned several times in regards to anti-retrovirals(ARV) and HIV/XMRV is that a lot of ARV's for HIV inhibit replication. However XMRV is thought to replicate much much less than HIV. For instance John Coffin at the October Chronic Fatigue Syndrome Advisory Committee(CFSAC) meeting said something to the effect of the total difference between XMRV types that were reported in possibly Dr. Peterson's presentation at the same meeting showed less variation than HIV shows within a few weeks in a person's body. What this means is that XMRV doesn't replicate very often while HIV replicates like mad. Therefore ARV's aimed at inhibiting replication will not likely have much effect on XMRV, but rather reverse trascriptase inhibitors would be more the way to go. There- I've basically exhausted my knowledge of the subject in one paragraph. The one other thing I've heard is that Nancy Klimas was reported in a newspaper article to be testing reverse transcriptase inhibitors in eight patients, I don't know if this is new or old news.

So basically we need an AIDS expert or retrovirologist or something to write a blog breaking down the different classes of ARV's and stating the potential pro's and con's of each.

That's pretty interesting about autoimmune problems, I also have Hashimoto's thyroiditis in addition to what I suspect is XMRV and tried taking some herb, chanca piedra, which was reported to inhibit MLV's, and it made me feel pretty bad. Maybe that's why.

Nonetheless, treatment with HIV antivirals will be really interesting. The published XMRV sequences show a very high degree of conservation. This may indicate the viral genome is less plastic than HIV’s, meaning that it may not be able to tolerate mutations as well as HIV. In line with the apparent low mutation rate is the fact that the viral loads in patents are not very high (compared to HIV). The low genetic diversity combined with low viral loads means that the chances of having drug resistant viruses already present in a patient are much lower than that of HIV, improving chances of a successful outcome of treatment. In the case of this retrovirus Darwin may be on our side.