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XMRV link to CFS/FM
4 Replies
Sonja44 - December 4

From a HUGE study.....95% of CFS/FM patients tested were found to have this retrovirus. Big news in research for finding cause and cure!

Dr. Oz had this info on his show yesterday (12/3/09). Results of this study have been published in Medical Journals and is being called a "game changer" in the field of CFS/FM.

A retrovirus joins your DNA to become part of you. Not contagious by sneezing, etc. But possibly contagious through blood. CFIDS Association of America has always recommended against CFS/FM patients from giving blood because we didn't know the cause or how it may or may not transmit to others.

Just had to share....I'm off to pull up medical journals that have more info on this.

Love & Gentle Hugs,


Canada17 - December 4

That is very interesting news indeed.

However, the 95% figure applies to CFS patients at this point as only a small number of FM patients were tested in this study and testing on larger numbers need to be completed before drawing any conclusions.

This could mean that XMRV can cause FM, however, it could also mean that those with FM who tested positive for XMRV also have CFS and the two may not be linked in any other way.


Fantod - December 4

Thanks for sharing this exciting news!


Fantod - December 4

I borrowed these comments from another website About . com:

With XMRV being a hot topic of conversation since research tied it to chronic fatigue syndrome and possibly fibromyalgia, I've seen a lot of people talking about a cure. While I know it's tempting to think that if this retrovirus truly is a cause, a cure may be just around the corner. That would be a wonderful and amazing thing. I think it's important, however, that we stay realistic about what this discovery could mean.

Curing Disease

First, very few diseases have a true cure. Very few of the diseases that can be cured are viral. Heck, we're still powerless against the common cold! The realistic things to hope for, from this or any other research, are diagnostic tests and better treatments. I don't say that to bum you out -- just to make expectations realistic.

Treatment Options

Most diseases are treated by either:

1.Alleviating the symptoms,
2.Slowing or stopping the progress,
3.Or both of the above.
Right now, our treatments are generally aimed at alleviating symptoms. We take things that help raise neurotransmitters, shore up our immune systems, make us sleep better, improve cognitive function, etc. A lot of things aren't very good at alleviating our symptoms and nothing works for everyone, but until the underlying causes and mechanisms first discovered and then widely accepted by the medical community, that's all we've got.

If the XMRV link is for real, that could change. Thanks to all the HIV research that's been done in the last couple of decades, we know a lot about retroviruses and have a host of anti-retroviral drugs that can now be tested as chronic fatigue syndrome treatments. If they're safe and effective, that will be fabulous -- it'll be a treatment aimed at a major contributing factor, which may to stop or slow the underlying mechanisms of the disease.

Remember, though, that while HIV/AIDS can now be treated pretty effectively, it still can't be cured. Someone who has HIV in his or her system will have it there forever. Odds are, XMRV is the same. What we need to be hopeful for is effective treatments that allow us to live better lives, and the diagnostic tests that will show our doctors that we do in fact need those treatments.

The Problem of False Hope

So what's wrong with hoping for a cure, no matter how unlikely? You're setting yourself up to be disappointed. It's like buying a lotto ticket -- if you pin all your hopes on winning a million dollars you won't be happy winning $100. If you think, "Twenty bucks would be nice," you'll be thrilled with 100.

I'm all for hope -- I hope for a lot of things. I hope for diagnostic tests that validate our illnesses and end misdiagnoses. I hope for universal acceptance from the medical community. I hope for treatments that do address the underlying causes and give millions of us a chance to lead full lives, free from debilitating symptoms. But a cure? Well, sure it'd be the best thing ever, but it just seems like too remote a possibility. I'd rather hope for things I have a chance of getting. That way, I'll have fewer disappointments when the next major discovery doesn't lead to a cure.


Canada17 - December 5

Even if those comments are borrow, thank you for sharing what you found.

It is all too easy to get caught up in the utmost positive of directions this finding could take us. We have to stay positive but at the same time we need to keep our feet on the ground.

Hope for the best, but prepare for the worst is what I was always told.

It is so true that knowing the cause doesn't always equal a cure.



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