Thursday, October 8, 2009

A biomarker, and a bit of vindication

For years, many doctors have claimed that ME/CFS, aka "chronic fatigue syndrome," isn't a real disease. Despite patients' insistence that they aren't imagining their pain, that they aren't just depressed or lazy, physicians who take their symptoms seriously can be very hard to find.

Doctors, meet xenotropic murine leukemia virus-related virus.

According to the Wall Street Journal:
Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications ...

Like HIV, XMRV is a retrovirus, meaning once someone is infected, the virus permanently remains in the body; either a person's immune system keeps it under control or drugs are needed to treat it. The virus creates an underlying immune deficiency, which might make people vulnerable to a range of diseases, said Judy Mikovits of the Whittemore Peterson Institute and one of the lead authors on the paper.
The full article is here.

Oh, sorry, that link takes you to a "subscriber content preview page," doesn't it. If you don't feel like plunking down money to read the article, there are others in the New York Times, the Washington Post, and many more.

I couldn't resist quoting the Wall Street Journal, though. Why? Because a little over a decade ago they printed an opinion piece in which they argued that people with this disease have a "deranged sense of victimization." That they're in it for the oh-so-lucrative disability payments.

Perhaps the WSJ will print a long-overdue retraction. I'll be right over here, holding my breath, waiting for that to happen.

Snark aside, this really is big news. The findings could lead to better treatment. Or, you know, any treatment. They could also lead to an incredibly useful diagnostic tool (great news not only for people with ME/CFS, but also those who have other neuro-immune diseases, like Lyme, which are sometimes misdiagnosed as ME/CFS).

It doesn't mean these researchers will discover a cure tomorrow. It doesn't mean the bigotry will disappear overnight. Still, it feels like there's something new in the air. Something like progress. Something like hope.


Maija Haavisto said...

I don't think this will change much re: treatment. Antiretrovirals are very expensive and full of nasty side effects. I don't think they should even be used for HIV, since low dose naltrexone is safer and works better (which has been known for about 20 years, but the first clinical trial is only undergoing now). This virus causes problems with the RNase L pathway which is what Ampligen treats, but it won't affect whether Ampligen will be approved or not.

Of course, it's still great news, but probably primarily for awareness and changing people's attitudes. Possibly for confirming diagnosis, but I think there will be better diagnostic tests.

I'm currently writing an article about the whole thing, which should be finished tomorrow.

cinderkeys said...

The cocktails AIDS patients take are expensive and full of nasty side effects, but they beat a much earlier death. This is the first I've heard of low-dose naltrexone being effective. Good news if so.

I have no idea if antiretroviral side effects are worse than ME/CFS symptoms. They'd have to be awfully bad. Still, worst-case scenario, at least we'd have a diagnostic tool. Will there be better ones? I hope so. But findings about XMRV could lead to the actual funding that makes that possible.

My giddiness may be unwarranted, but it's been such a while since I've heard anything hopeful at all.

Laurel said...

I think it's very exciting news!

Angel said...

GREAT post, Cinderkeys! The answers found today or even yesterday probably won't pan out into a true 'cure' or 'treatment' tomorrow but.... at least we're headed in the right darn direction! About time.

Jannie Funster said...

Research really does pay off and this is an exciting finding! I hope it gets the attention it deserves.