Saturday, July 3, 2010

Q and A with

Through emails, CDC scientists Bill Switzer, lead investigator of the CDC XMRV study, and Dr. Steve Monroe, director of the CDC’s division of High Consequence Pathogens and Pathology, discussed the agency's XMRV study, published in Retrovirology July 1.  The study found no evidence of the retrovirus in the CDC's Chronic Fatigue Syndrome patients and controls.

I also asked Switzer and Monroe questions about the FDA/NIH XMRV study, which found the virus in CFS patients and had been accepted by Proceedings of the National Academy of Sciences only to be put on hold, which was reported June 30 in the Wall Street Journal.

A CDC press officer emailed Switzer’s and Monroe’s replies on Friday at 5:10 p.m.  Monroe had already left for the day; Switzer for a week’s vacation. Thus, there could be no timely follow-up.

CFS Central:
“My sources tell me that there were at least 20 XMRV samples confirmed to be positive from several other labs that were sent to you for the CDC study.  Did you test these samples, and what were your results when you tested the samples? Did you find XMRV or not?”

Bill Switzer MPH, lead investigator of the CDC XMRV study:
“As reported in Retrovirology, this study used and tested samples that were collected in CDC-sponsored studies of CFS, as well a set of healthy blood donors.  Continued efforts are underway to learn more about XMRV, including work with other HHS [Health and Human Services] agencies and non-governmental organizations to standardize testing methods across all XMRV studies.”

CFS Central:
“Why did the CDC request the FDA/NIH study be put on hold pending more research?”

Dr. Steve Monroe, director of CDC’s division of High Consequence Pathogens and Pathology:
When CDC, FDA, and NIH learned that separate studies had been conducted with differing results, a collective decision was made to try and account for these differences.”

CFS Central:
“Why couldn’t both the CDC and the FDA/NIH papers be published and then the agencies do follow-up research to resolve the differences in your findings?”

Timely discussion among researchers regarding the specifics of scientific studies is common and can help them more readily account for the direction of further research.  Future research will benefit from the knowledge gained from the Retrovirology study and other studies that have attempted to learn more about this novel retrovirus.”
CFS Central:
“Why didn’t the CDC try to culture XMRV?  (That’s what the Lombardi study did.)” [Published in Science in October 2009, that study found XMRV in 67 percent of 101 CFS patients.]

“It is unclear whether or not performing culture on all samples would have improved the ability to detect XMRV. The CDC Retrovirology study used the same PCR testing methods of a previously published study that found an association between XMRV and CFS. While CDC could not confirm an association between XMRV and CFS, the method utilized in the study provided the best means of detecting XMRV if it was present.”

CFS Central:
“Why didn’t the CDC use blood tubes intended for use with virus isolation as the Lombardi study did?”

Many blood collection tubes with a variety of anticoagulants can be used for virus isolation. The archived specimens we used were collected with anticoagulants that are not known to interfere with either PCR testing or virus isolation.”

CFS Central:
“According to your paper, the CDC used the ‘revised Fukuda’ AKA Empirical definition of CFS…. The CDC study cohort, as defined by the Empirical definition, includes many people who are simply depressed and tired but do not have Chronic Fatigue Syndrome. How can this CDC cohort be valid if it includes people who are just tired and depressed?”

“All subjects in the study met the 1994 International Research Case Definition for CFS. One aspect of the definition is its ability to distinguish between subjects who may suffer from CFS symptoms, such as tiredness or depression, but do not have CFS.  CDC used samples from CFS subjects who fully met the 1994 case definition and healthy controls that were collected from two previous population-based studies in Wichita, Kansas and metropolitan, urban and rural populations in Georgia. In addition, CFS patients from the CDC Health Care Provider-based Registry of Unexplained Fatiguing Illnesses and CFS were included.

“Thus, CDC used population-based and clinic referral samples. This enabled us to examine sudden onset cases and those that develop gradually. The use of both types of samples in this study helped us to more precisely examine whether or not infection, such as through XMRV, might have played a role in the onset of symptoms.”


Having had none of my questions answered by the CDC, I turned to other sources.

Coming up:  THE FDA/NIH XMRV PAPER—and ME/CFS PATIENTS—IN LIMBO.  Plus, one patient’s solution:  A united demonstration of solidarity at blood banks in every city, in every country, and on every continent to inform the public that Health and Human Services is withholding the publication of the FDA/NIH XMRV study and that the newly discovered retrovirus may be contaminating the blood supply and infecting millions of people.

This article, "Q and A with CDC Scientists," is copyright CFS Central 2010.  All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by Mindy Kitei for CFS Central.  You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue. Instead, refer readers to this blog to read the article.


  1. Wow. Five million people are transfused with blood every year in America. More than I thought.

    And is there any "pathogen reduction" in place? From skimming "Pathogen Reduction: A Precautionary Principle Paradigm" by Harvey Alter, it would appear(?) that PR of one kind (solvent detergent) is currently in place only for plasma, and there is no PR for other products. I'm not sure how may of the five million receive plasma only.

  2. Thanks for this, Mindy. The CDC answers are classic bureaucratic-speak--paragraphs that say nothing at all, and in doing so, speak volumes.

  3. I can't believe that the director of High consequence pathogen is on "their" side.Obviously, CFS department got transfered, Reeves side lined, but Reeves is still there. Just like they moved him to calm us down but he is out there, alive and obviously having strong ties to CFS.

    Patients with ME/CFS have no trust in the CDC. We need to go higher than them in order to get vindicated. Thank you for reporting Mindy.

  4. I commend you for your patience. These answers from the CDC are really non-answers and they are infuriating. Don't these people know they work for the government? WE the people are their employers.

    Now what's going to happen when people like me, who know they are XMRV positive go and give blood? The government says there is no such thing as ME/CFS and no such thing as XMRV retrovirus. If the government says there is no such thing, who am I to argue with them; i.e., my blood is fine, so why not donate blood?

    Patricia Carter

  5. It is interesting that 5 million Americans get transfused each year, but many of the same individuals may get transfused repeatedly year after year. The number who have ever been transfused would be more interesting. Here is a paper which is a little hard to understand, but seems to indicate that 18% of Germans have ever been transfused:

    Therefore if we use the most pessimistic figure for XMRV infection in the general population (7%), and assume about 18% of Americans have been transfused, it would seem that a stunning 1.25% of all Americans *could* have been exposed by transfusion. That doesn't mean they all got infected. Who knows, maybe some persons (particularly asymptomatic ones) do not have enough of it in their blood to *ever* pass it on, even by direct transfusion. It all depends on a lot of things.

    From a paper by one Dzik, evidence that plasma transfusions are a minority of blood transfusions:

    "In the United States, use of FFP [freshly frozen plasma] has steadily risen every year. For example, in 1979, one FFP was transfused for every 6.6 red blood cells (RBCs); by 2001, the ratio had dropped to one FFP for every 3.6 RBCs in 2001 (Wallis & Dzik, 2004)."

    Actually, that's the number of units, I think, not the number of transfusion events. To repeat, this is relevant because I think that in the US only plasma is protected (partially so) by pathogen reduction technology.

  6. Wow, so surreal, everything about CFS makes Kafka look like a Disney script.

    Are these people scientists or politicians? They've mastered the art of sucking all meaning out of words.

  7. Monroe's premise that:

    "Thus, CDC used population-based and clinic referral samples. This enabled us to examine sudden onset cases and those that develop gradually."

    is flawed because the difference between population-based and clinic referred patients refers to the methodology used to gather the cohort and does not correlate with whether a patient's onset was sudden or gradual. Not only does Reeves' operational definition not properly identify ME/CFS patients, Monroe's statement is simply a pile of crap. I can't believe these people think we are mushrooms. They are trying to bury us. We can't allow this travesty to continue.

  8. Thank you I appreciate all your work. I am so sick of their games. I would like to know the reason they want to block the truth. Is it gender bias, as a large number of us are female? Does it have something to do with a drug company? Is it just one insane man controling the CDC? Is ME/CFS just too complex for them to understand? Are they jealous of the WPI? Are they trying to save face after all the underhanded tricks they have pulled in the past?

  9. (Please understand this comment is intended to be sarcastic) Perhaps ME/CFS patients need to go the other way to get common sense. Donate as much blood as possible! take salt so you can donate more frequently! There is apparently nothing wrong with ME/CFS patients so they could be doing society a service instead of ust lounging around resting! Here's another idea - let's find all our housebound and bedbound fellow patients and organize some sort of mobile blood donations!

  10. This is just unbelievable. It appears to me that the CDC seem to think that we lost our minds and intelligence once we got sick! How they think anyone would buy any of this nonsense is beyond me.

    We really need to find a way around the CDC - they have been playing this game for way too long now.

    Thank you for asking these questions and providing this format. It is much appreciated.

  11. How much longer do we keep funding the CDC? This isn't science, this is nothing but political crap! We got rid of Reeves, but obviously that was only the tip of the iceberg. Let's give everyone working at CDC a free blood transfusion of XMRV infected blood and then dust the place with anthrax powder. Shut the place down for good, send the funding to WPI, and put an end to all this CFS misery. Isn't 25 years long enough?

  12. Munroe:
    “All subjects in the study met the 1994 International Research Case Definition for CFS. One aspect of the definition is its ability to distinguish between subjects who may suffer from CFS symptoms, such as tiredness or depression, but do not have CFS."

    The study used the empiric criteria (Reeves et al, 2005) a form of the 1994. Apart from those with current major melancholic depressive disorder (one of many types) (who are excluded), it looks like plenty of those with depression or tiredness could be included with the definition.


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