Wednesday, August 25, 2010

The FDA/NIH CFS Paper Finally Published

The long and eagerly awaited FDA/NIH study on CFS was finally published this past Monday. The study reports finding MLV-related viral sequences in 86.5% of ME/CFS patients, and only 6.8% of controls.

MLV stands for murine leukemia viruses. XMRV (xenotropic murine leukemia virus-related virus) is in the family of MLV's. While this study didn’t specifically find XMRV in patients or controls, the investigators are confident they are essentially looking at the same thing. As Dr. Harvey Alter explained to science reporter Mindy Kitei:
“Viruses tend not to be homogenous,” Alter explained to CFS Central in a telephone interview. “The fact that we didn’t find XMRV doesn’t bother me because we already knew that retroviruses tend to be variable. They mutate a lot, basically. This is true of HIV and HCV [hepatitis C virus]. It’s not one virus. It’s a family of viruses.” -- CFS Central
Alter also stated, "Our results clearly support the central argument by Lombardi et al. [the 2009 Science study], that MLV-related viruses are associated with CFS and are present in some blood donors."

I would love to write a brief, personal commentary on what I feel this may mean for us and for the future of ME/CFS research and treatment, or for those of us who DID test positive for XMRV... but I'm simply not well enough to do so right now. So, I'm going to share a bunch of links instead. :)

For the full paper, published in the Proceedings of the National Academy of Sciences (PNAS), click here.

For two excellent summaries and commentary on the paper, visit:

Mindy Kitei's CFS Central
Cort Johnson's Phoenix Rising

The CFIDS Association of America has also created a short pictorial essay to help patients understand the relationship between XMRV, MLV's and gammaretroviruses. For a more in-depth analysis, read Another Turn of the Retrovirus Kaleidoscope.

Below are just some of the many news articles on the subject (there are currently over 300) :

The New York Times
The Wall Street Journal (August 23, 2010 article)
The Wall Street Journal (August 24, 2010 article)
The Wall Street Journal (August 25, 2010 article)
The LA Times

The 1st International Workshop on XMRV is scheduled to be held on September 7 and 8, 2010 in Bethesda, Maryland at the U.S. Department of Health & Human Services' National Institutes of Health (NIH). Reportedly, more findings will be presented at this meeting.

Here's hoping this study helps propel us forward towards a better understanding of this illness, increased awareness of its complex and severely debilitating nature, and that it finally leads us to effective treatments in the near future. It's most certainly long overdue.

NOTE:  This paper has since been retracted.


  1. Excellent summary Laurel

    Very exciting times although our UK media as always dragging their feet they can't see the elephant in the room.

    Take care

  2. So exciting and hopeful isn't it?

  3. Thank you for this overview, Laurel!

    I felt like I imploded a few hours after the news. What the German media wrote was so abominable I couldn't believe my eyes. The worst one was an article about sleep hygiene, titled "good night - researchers find fatigue-inducing virus and give recommendations for good sleep"! Yes, sure, they find a retrovirus and tell people how to get better sleep. It's not only a lie, it's an outrageous twist of the facts!

    If a retrovirus can't convince people this is serious, what can?

    I get a feeling that the WPI will get us an effective treatment before the disease is even recognized for what it is.

    Take good care Laurel, we need lots of rest now!

    Hugs, Nina

  4. Joanne and Nina -- I know what you mean about the media... I was really disappointed in how the media covered this in general, even in the U.S. Most headlines referred merely to "fatigue" or "chronic fatigue," and when they clarified CFS in the body of the article, they tended to say it causes "fatigue, sore throats and headaches." Oh, if only that's all it did. :) It was rarely mentioned that ME/CFS can leave people bedbound and wheelchair bound for years on end, or that it can be as debilitating as AIDS, cancer or MS. With a few exceptions there also didn't seem to be much emphasis on the fact that MLV's may be in the blood supply. But I'm trying to remind myself that at least it was covered, and things are looking up. I think it's still going to be a long awhile before people get past their previous misconceptions of CFS. But this is certainly a big step forward.

    Anyway, definitely exciting times. I hope progress and research moves FAST. And Nina, I hope you're right about the WPI!! It cannot come fast enough.

    Hope you are all holding up. I'm definitely paying for the last few days. But, I'm also hopeful that good things are ahead.

  5. By the way, Nina -- that's awful about that article!!

  6. Thanks for all this information you gathered. This is really big...and Joanne shared with me that Dr. Burrascano who is the big shot with Lyme Disease feels it could be very beneficial for Lyme patients too....Now wouldn't that be something if the research results it help for all of us!

  7. The articles I've read so far (many of which are in Laurel's list) have been better than the media's usual.

    I'm just relieved and happy that the paper hasn't been tampered with. Looks like science beat politics this time.