Sunday, July 4, 2010

An XMRV primer for the folks who lightly skim my ME/CFS posts

From a conversation I had with a friend yesterday (highly paraphrased):

Friend: I've been reading your blog lately. What's the big deal about these XMRV studies?

Me: Remember how last year, someone discovered a link between the retrovirus XMRV and ME/CFS? Now other scientists are trying to figure out if the link really exists.

Friend: What if it does? What difference would it make?

Me: Because if there's a link, then they can help ME/CFS patients by treating the retrovirus. Like with HIV. Y'know how AIDS used to be a death sentence? AIDS is still something you really don't want to have, but now if you're on the retrovirals you can live with it.

Friend: But is there a treatment for XMRV?

Me: No. But if there's definitely a link, they'll have a reason to develop one.

Friend: Ah.


Maija Haavisto said...

The way I see it is entirely different. I don't think the XMRV findings will lead to any new treatments (at least any good ones) for several reasons.

No one has ever been able to come up with antiretrovirals that aren't extremely toxic. Antiretrovirals aren't curative of HIV, so they most likely won't be curative of CFS/ME. On the other hand, there are hundreds of effective treatments of CFS/ME, which are less toxic than antiretrovirals.

Even if XMRV is linked with CFS/ME, we don't know it's the ultimate cause. We do know that antiherpesvirals can be extremely effective, sometimes even curative, in many cases of CFS/ME.

Even for AIDS low dose naltrexone is a far better treatment than HAART. And we know that LDN often works very well in CFS/ME too. I would only try antiretrovirals if they were shown to have a reasonable chance to be curative (and even in that case I'd want to try antiherpesvirals first).

However, that does not mean the XMRV findings aren't important. People who have read CFS/ME research know the viral origin of the illness is completely unquestionable, whether XMRV is involved or not. But it's far from clear to the general public and most doctors.

The publication of the XMRV confirmation article will help make CFS/ME seem more legitimate to both laypeople and doctors. It will also help research funding tremendously. Currently CFS/ME only gets a tiny fraction of the research money that e.g. MS gets, despite being as serious and up to five times more common.

And thinking outside of our own perspective, I'm sure that the publicity the XMRV & CFS/ME connection gets will help fund and fuel research into infectious causes of other chronic illnesses. Infectious origin seems to explain at least some cases of e.g. diabetes, MS, epilepsy, perhaps even depression, obesity and schizophrenia and cancers not currently thought to have an infectious origin. This research can only help medicine in general, and hence every one of us, currently sick or not.

cinderkeys said...

Good points, all. I think everybody who's been following this understands that a confirmed XMRV link -- even a causal link -- won't mean instant 100% cures for everyone involved. That's why I made the comparison to AIDS. On the one hand, being on all those retrovirals isn't an ideal way to live, and those retrovirals will not cure you. On the other hand, it's preferable to death.

I know someone who tried LDN, by the way. It made him very sick. I'm not saying that LDN can't help certain people, just that it's also not a magic bullet.