Sunday, August 8, 2010

Q & A with CDC's

The CDC says it's found XMRV in prostate tissue but omits a crucial fact from its XMRV study on CFS patients

Below are the emailed answers to the questions I posed, by email, to Dr. Stephan Monroe, head of the CDC’s division of High Consequence Pathogens and Pathology.  More problematic than the non-answers to most of the questions on the CDC's present and future course for CFS research is that Monroe didn’t answer one of my questions on the CDC study.

That question was why did the CDC XMRV scientists omit in their paper that they had tested 20 samples that the Whittemore Peterson Institute found to be XMRV positive but didn't find any positives themselves?  Rather than answer it, Monroe simply ran up the next question—deleting its bullet point, thereby altering the questions as posed.  The CDC press office sent Monroe’s responses at 4:42 p.m. Friday, making a Friday follow-up unfeasible.  However, I’m resubmitting the question to Dr. Monroe and will report his reply on CFS Central.

Published in July, the CDC's study failed to find the retrovirus in any CFS patients the researchers tested, unlike the October 2009 Science study by the Whittemore Peterson Institute, the National Cancer Institute and the Cleveland Clinic that found 67 percent of CFS patients positive for XMRV, and the as-of-yet unpublished FDA/NIH study, which reportedly found 80 percent of CFS patients positive for the retrovirus.  The 2010 XMRV studies in Europe have failed to find the retrovirus in patients with either CFS or prostate cancer, the two diseases in which U.S. scientists have reported an XMRV link.

Here are the two questions on the CDC’s XMRV study that CFS Central submitted to Monroe:
  • One of the CDC slides from this week’s Blood Safety Advisory Committee meeting showed that the CDC tested 20 samples from CFS patients that the Whittemore Peterson Institute found to be positive for XMRV. But, according to the slide, the CDC didn’t find any positives among those 20. Why was this piece of information— that the agency was unable to find positives in any of those 20 samples—left out of the CDC’s XMRV study? 
  • Given that the CDC couldn’t confirm any of the Whittemore Peterson Institute’s 20 positive samples, why did the CDC scientists conducting the study conclude that the CDC’s methods were accurate? My sources have confirmed that three independent labs found these samples to be positive.
Here is the one question and answer back from Monroe.  I've highlighted his reply in red: 
  • One of the CDC slides from this week’s Blood Safety Advisory Committee meeting showed that the CDC tested 20 samples from CFS patients that the Whittemore Peterson Institute found to be positive for XMRV.  But, according to the slide, the CDC didn’t find any positives among those 20.  Why was this piece of information— that the agency was unable to find positives in any of those 20 samples—left out of the CDC’s XMRV study?  Given that the CDC couldn’t confirm any of the Whittemore Peterson Institute’s 20 positive samples, why did the CDC scientists conducting the study conclude that the CDC’s methods were accurate?  My sources have confirmed that three independent labs found these samples to be positive. 
The information in the Retrovirology paper was consistent with the specifics of the study design. The results, and methodology, have been confirmed by three different independent laboratories.
    Below are the rest of the questions and answers.  I've deleted the bullets because editing with bullets has proved too problematic in Blogger.
CFS Central: Who decides what research the CDC will pursue when it comes to Chronic Fatigue Syndrome?  Is it you, Dr. Monroe?  Is it Mr. Bill Switzer [principal investigator of the CDC XMRV study]?  Is it Dr. William Reeves [who has long held that CFS is a psychogenic illness and served as the former head of CFS research for 20 years until his transfer in February to Mental Health Surveillance]?  Is it Dr. Elizabeth Unger [acting head of CFS research]? Is it Dr. Thomas Frieden [the head of the CDC]?  Or is it from higher-ups in the HHS organization?  Who decides?

Dr. Steve Monroe: As there is still much to learn about CFS, CDC pursues a broad approach to research related to CFS. Decisions about the direction of CFS research are primarily guided by the insights gained from our continued scientific investigations. 

CFS Central: There are one million people with HIV/AIDS in the U.S. There are one million people with CFS in the U.S. (using the original 1994 Fukuda definition, not the Empirical definition).  The two diseases became widespread in the 1980s.  Some believe that the CDC pursued psychiatric research where CFS is concerned because the agency had its hands full with HIV and didn’t want to deal with another infectious epidemic in this country.  And now decades later, the agency remains in that mode and will continue in that mode.  Do you believe there’s validity to this argument? Why or why not?

SM:  The direction of CFS research has, and will continue to be, based on the best available scientific information and insights gained from our research and the findings of others.

CFS Central: On patient forums in the U.S. and abroad, many bloggers voice that they have no confidence in the CDC’s CFS policies and research.  Patients post on my blog, CFS Central, or address emails to me directly about their disappointment and outrage when it comes to the CDC.  One of the most important reasons CFS patients say that they have no confidence in the CDC is because the agency is pursuing a psychological cause, when much of the evidence, including 2,500 journal articles, points to a physiological cause. Is the CDC aware that many patients have no confidence in the agency when it comes to CFS research and policy?  Does the CDC care that patients have lost confidence in the agency?

SM:  CDC is deeply committed to reducing the morbidity and societal costs associated with CFS to enable a better quality of life for CFS patients. 

CFS Central: As a follow-up to this question, three CFS patients whom I interviewed in 1994 for an investigative article on the experimental [HIV and CFS] drug Ampligen called “The AIDS Drug No One Can Have” for Philadelphia magazine have since died of the disease, including one at age 43, and another at 59 from mantle cell lymphoma, a rare cancer in the general population but one that’s remarkably common in CFS patients. While some patients are dying and many others are bed-bound or house-bound and experiencing seizures, chronic infections, heart failure and short-term memory loss, the CDC is advocating cognitive therapy, antidepressants and “sleep hygiene.”

These mild interventions may help the 38 percent of patients  with major depression who were misdiagnosed as having CFS under the Empirical definition, according to studies done by Dr. Leonard Jason.  These mild interventions, however, aren’t helping most patients who meet the original 1994, including three CFS patients whom I interviewed in 1994 who have since died of the disease: Nancy Kaiser, Jerry Crum and LeAnne Hyneman.  Does the CDC see the disconnect in what the CDC is advocating—antidepressants, “sleep hygiene” and cognitive therapy—and what patients, at least those who meet the original 1994 Fukuda definition—are experiencing? What should the CDC do to help these patients now and over the next five years?

SM: Unfortunately, there are very few double-blind, placebo-controlled studies of interventions for alleviating symptoms of CFS. CDC recommends that people with CFS work with a healthcare professional to develop a treatment plan that is highly individualized and addresses their particular constellation of symptoms. 

CFS Central: At the first international workshop on XMRV in September, the CDC’s William Switzer will be speaking on assay development to test for XMRV.  Has he ever found XMRV in any blood or tissue from any patients? 

SM: CDC has detected XMRV in samples from patients with prostate cancer.  Preliminary results were reported at a scientific conference and the findings are being prepared for publication in a peer-reviewed journal.

CFS Central: As I understand it from the CDC website, the foster-care study, which will begin in late 2010 and continue to 2013, will explore whether foster children are at higher risk for CFS than the general population of youths. 

What happens if a child doesn’t want to participate? What rights do the children have?
Who is advocating for these children? 
Will there be a court-appointed lawyer for these children? 
Or will it be only the state? 
Or will it be the foster parents plus the state? 
On the CDC website, it discusses “pharmacologic intervention trials” with these children. What kind of medications will be used? 

SM: The 5-year strategic research plan for CFS was developed in 2009 and is periodically updated. The foster-care study is not included in the current plan. 

CFS Central:  Dr. William Reeves, who was transferred from the head of CFS research to senior adviser for Mental Health Surveillance in February, is still authoring studies on CFS. His latest, released last week, is “Personality Features and Personality Disorders in Chronic Fatigue Syndrome.”  Will Dr. Reeves continue to do research into CFS over the next few years? 

SM:  CFS research will continue to be inclusive of many scientists, including those within and outside the agency, whose expertise can help us learn more about this illness.

CFS Central: The CDC says the revised 1994 Fukuda definition is the equivalent of the original 1994 Fukuda (AKA Empirical) definition. The CDC has been using the revised definition in its studies since 2005.  The CDC reported in 2003 that the estimated occurrence of CFS under the original definition in the U.S. was .23 percent.  In 2007, the CDC reported the occurrence with the new definition broadened to 2.5 percent, a 10-fold increase.  Likewise, Dr. Leonard Jason’s studies found the same 10-fold increase in the new definition over the old definition.  In addition, Jason found that in contrast to the original definition, 38 percent of patients characterized as having CFS under the revised definition actually had “major depression.”  Therefore, how can these two definitions of CFS be equivalent? 

SM:  The CDC uses quantitative assessment tools to reproducibly identify those individuals who meet the 1994 international research case definition of CFS.  The defining symptoms and criteria for exclusion have not changed. 

CFS Central:  The CDC devised the 1988 name Chronic Fatigue Syndrome to describe the symptoms of patients in the outbreak on Lake Tahoe, Nevada, among other clusters. Many of those patients had neurological symptoms and all had physical symptoms.  In the CDC’s XMRV study, it says: 

“The Lombardi et al. study [AKA the October 2009 Science study that found XMRV in 67 percent of CFS patients] specifies that samples were selected from patients fulfilling the 1994 international CFS case definition and the 2003 Canadian Consensus Criteria for CFS/ME…. Most notably, the Canadian Criteria include multiple abnormal physical findings such as spatial instability, ataxia, muscle weakness and fasciculation, restless leg syndrome, and tender lymphadenopathy. The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et al. study may represent a clinical subset of patients.”

Dr. Monroe, not only the Canadian Criteria, but the 1994 Fukuda definition—listed on the CDC’s website as the agency’s official definition for the disease—includes multiple physical findings.  Indeed “tender lymph nodes” is listed as a diagnostic criterion for CFS on the CDC website.  In addition, “difficulty maintaining upright position, dizziness, balance problems or fainting” are neurological findings listed as common CFS symptoms on the CDC website. 

Is the CDC now saying that the patients who exhibit these physical and neurological symptoms may no longer meet the CDC definition of the Chronic Fatigue Syndrome?

If the patients with physical and neurological symptoms who meet the original 1994 Fukuda definition of Chronic Fatigue Syndrome don’t have CFS, what, then, do they have?

SM:  People with CFS generally experience a variety of symptoms, many of which are consistent with other health conditions. 

Similarly, people who do not meet the diagnostic criteria for CFS may experience symptoms that are common among people who suffer from this illness.

Dr. Mary Schweitzer contributed to this post.
This article 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. And Monroe is PAID for this???????

    Does the US population realise it's Government provides sinecures of this order?

  2. Thanks Mindy. SM explained everything. We can all stop being sick now.

  3. Why can't those people give ANSWERS? I mean they're not politicians, so why can't they answer a question as exactly as possible? It does not really strenghten my trust in them, even though i still don't know what to make of all of this.

    In the end, i fear with our possibilities it will be very hard to find out what is really going on in the minds of those people and inside their organizations.
    To me it seems the way forward can hardly be to prove that they are providing bad work (even though we should do it, if we really can) but for others like the WPI, Dr. Bateman/Singh, Dr. Alter etc. to prove the XMRV/CFS connection, if it exists.
    Don't prove that the others don't want to find it, prove that it's there by finding it yourself.

    Thanks a lot for your work and this interview Mindy, please keep it up. It's just frustrating to never really be able to nail down the truth so far.

  4. The word science is being devaluated by this man. This has nothing to do with science, this is politics of the worst kind. Infuriating.

  5. Aside from the fact that most responses were content-free, there is one interesting side step here. The CDC study on XMRV in prostate cancer found virus in 2 of 165 tissue samples from prostate cancers. As the virus was originally discovered in prostate cancer tissue, it would be hard to remain credible if you avoided finding it here. Even finding only one positive might be discounted as pure chance. The CDC group has developed a technique which has never found XMRV in the blood of any infected human. Patients who might believe they are infected could be put off by the need for prostate surgery to verify a diagnosis. Those without prostates need not ask. This neatly excludes the bulk of CFS sufferers, the remainder who might be positive can be excluded for signs of physical illness. The CDC implementation of their own definition appears to exclude a priori any who might test positive.

    Like half a dozen other studies, the CDC has never validated its ability to find XMRV in blood from any infected human, with or without symptoms. In light of this factual tidbit, their claims in relation to CFS could apply to any condition whatsoever.

    One must wonder why they wasted time and money on testing a foregone conclusion, and why they trumpeted the findings as applying to CFS. These findings say a lot about the CDC, and little about either XMRV or CFS.

  6. Thank you Kati. Great try and good questions, but the same old side stepping and disingenuous rhetoric remains. I suppose we could expect nothing less. Great to have more public evidence of their ego and disregard for patient concerns though.

  7. The CDCs response is an incredible assortment of dissembling and non-answers. Monroe did not give a straight answer to even one of your questions. It appears he thinks they can maintain the "party line" despite the evidence to the contrary. He displays a total lack of ethics and extremely questionable legal positions.

    Thank you so much for staying on this. It is SO important!

  8. Well it looks like Dr. Monroe is also good at answering the questions, without actually answering the questions. Good they finally found XMRV in prostate cancer. But these agencies always seem to be able to find or make sure funding is available on diseases that primarily affect men.

  9. Thank you for this interview, Mindy. This news is not good; it looks like Dr. Monroe is going to continue the abuse of people with ME/CFS which was perpetrated by Bill Reeves.

    Perhaps when the NIH/FDA XMRV paper is published, the CDC will realize just how ridiculous the CDC's stance on ME/CFS is.

    Thank you for keeping us up to date.

    Patricia Carter

  10. These people are unbelievably arrogant to think that they can continue to get away with this charade. Monroe's responses sound canned and generic as if given by a bot...obvious attempts to sidestep your question. Monroe needs to be cornered and held accountable to answer these questions directly. I can't think of a better person to make that happen. Thank you Mindy.

  11. Blogger is still acting up, and three of the comments--from CFSsufferer, Lee Lee and
    jaceatsea--won't post, so here they are:

    Steve Monroe should get a job as a politician as these aren’t the answers of a scientist. Monroe doesn’t answer the questions which further incriminate himself and the CDC. Thank you for doing this interview Mindy, you have helped show Steve Monroe’s true colours.

    “When a scientist says something, his colleagues must ask themselves only whether it is true. When a politician says something, his colleagues must first of all ask, 'Why does he say it?'”- Leo Szilard

    Lee Lee
    what a load of dribble .....

    Politician's answers all the way. What a slippery interviewee.

    It's all about preserving reputations and empires, it seems, and not about engaging with the problem.

  12. This is so terribly frustrating and equally sad and dissapointing rhetoric from the CDC.

    What about the persons with CFS who are now testing XMRV+ from WPI/VIPDX? What does Steve Monroe advise these people do?

    Should they phone the CDC and ask about treatment to improve functioning, for this they need medications that the FDA refuse to pass, e.g. Ampligen. Perhaps infected XMRV folk should throw caution to the wind and reproduce and risk creating a baby with CFS?

    For persons with XMRV they need access to early Cancer screening and Cardiac and Neuro testing.


    CDC say there is no link to XMRV and CFS on their new website, but patients with CFS are testing positive! This needs reporting and reporting more. If someone with CFS is infected, the 'theory' XMRV is not in CFS, is false.

    We are being left in the dark, by a 'Centre of Disease Control'. Someone help us please. The XMRV and CFS are not being controlled but ignored.

    Totally absurd, this will go down in history as something very bad and people are dying for no reason.

    Please someone help people with the label CFS who have XMRV. Decades have passed and children are now in their 30's and 40's, still infected, and given the label CFS and left to rot.

    At this rate kids will become 50, 60 years old and simply expire before they disease is even recognised. A terrible waste of a life and such a tragedy for all those involved.

  13. This comment has been removed by a blog administrator.

  14. I would like to commend your efforts in interviewing the devil himself. Your questions were so precise, and well formulated and he was super evasive, and not answering certain questions.

    This is a hyper important interview that begs to be shown around the world!!!!

    You are unveiling the CDC's crime- I congratulate you on this. I hope your post could be integrated in a paper- somehow- the story needs to be told.

    Thanks again.


  15. Absolutely brilliant journalism Mindy. Superb, incisive questions. I add my wish that you get this published in the mainstream media as well as posted here.

    There must be some accountability mechanism that we can access to get the CDC to explain why "CDC XMRV scientists omit(ted) in their paper that they had tested 20 samples that the Whittemore Peterson Institute found to be XMRV positive but didn't find any positives themselves," and why the CDC is not answering this question when asked by the media. If Steve Monroe deletes the question, refusing to answer, who is next to ask? Who is accountable at the CDC for their actions?

    I would like to see Retrovirology withdraw this paper until the CDC accounts for this fact, in addition to some type of in-house ethics investigation.

    I believe that your first-class journalism and exposing of the truth brings us one step closer to this.

    Thank you for covering this on-going story in such depth, with such clarity.

  16. Thank you Mindy! "That question was why did the CDC XMRV scientists omit in their paper that they had tested 20 samples that the Whittemore Peterson Institute found to be XMRV positive but didn't find any positives themselves?" I will be watching your blog and waiting for an answer from Monroe. We need more journalists like you asking these important questions.

  17. Excellent Mindy~

    Seriously folks.. be nice LOL
    He did as much wiggling as he could since he was not in court and couldn't plead the 5th... LOL

    CDC you are hereby showing yourself OFFICIALLY as ONLY having one of the
    2 snakes "required" for the caduceus.

    Mindy I hope you have Triple copies that are "locked away" of his replies..

    Bravo ~

  18. Mindy, your questions are absolutley great. It is sad that the answers worth nothing. Well, they might worth something: Many times, when you have things to hide, or have no good answer, your answer is very short and very laconic. Perhaps this is the case that we have here.

  19. Mindy- I appreciate your dogged persistence in trying to get some complete answers. Yes, these are political responses: limited, "we have your best interests at heart, always," and without any real substance. If they haven't screwed the pooch on the Alter study they are probably becoming more and more cagey, as they will have to answer history rather than those poor deluded (wink) CFS patients. Here's hoping...

  20. Excelllent interview, Mindy! I wish I could say, however, that I'm surprised by the CDC side-stepping. After having this condition for almost 30 yrs (took 18 yrs to get a diagnosis) and am now 62 yrs old, I am still angry with the CDC but not surprised...but 'm glad that you are holding their feet to the fire!

    In your comments you mentioned that one person you'd interviewed back in '94 when you studied the Ampligen results has died from mantle cell lymphoma. My mother died from this rare disease 8 yrs ago at the age of 82. I've always felt there must be a genetic component of some sort with CFS and now reading this makes me wonder even more. There was no explanation for why my mother would have had mantle cell lymphoma and until your blog I had no idea it appears more frequently in the CFS population. (On a personal note, reading this makes me a bit nervous..) How do I find out more about these particular findings? (My mother was never diagnosed with CFS but had many similar symptoms to CFS for much of her adult life.) Thanks again for reporting on the CDC..I've just found your blog and will keep reading!

  21. Still knocking us dead (literally) with their collective analytical skills and cutting edge research at the CDC then...

    Great questions Mindy. Keep asking them. Could you also ask them next time why they've recently(quietly and without any fanfare) separated CFS and ME into two distinct entities on their website? Is it part of a strategy to distance themselves from CFS and the damage caused, or is it because they believe the two to actually be separate illnesses (as it would seem to imply)? Could they tell us who authorised this change to the website, and does it mean they will be conducting research into XMRV/ME associations? Am dying to know the answers to these questions.

  22. Anonymous, Welcome. I believe that Dr. Daniel Peterson may be helpful in the mantle-cell lymphoma arena. He's treated patients who have CFS and this rare cancer.

  23. Thank you so much for your reporting. Please stay one step ahead of cdc. The cdc is remaining ignorant of cfs on purpose.They have orders to control the world's population. It has been found that having CFS that you die 25 years sooner than expected. Check the connection between the Bilderberg group and the CDC!

  24. Thank you for your reporting.Please stay one step ahead of the cdc.They remain ignorant of cfs on purpose.They are ordered to control the world's population.Research has shown that cfs patients die 25 years sooner than healthy people.Just check out the connection between the Bilderberg group and the cdc!

  25. This guy is too much! "CDC is deeply committed to reducing the morbidity and societal costs associated with CFS to enable a better quality of life for CFS patients."
    vomit. He mean "Bill Reeves and others working on 'CFS' at CDC are deeply committed to staying out of prison so they have to continue to lie about 'CFS' patients to make it seem like they are crazy and thus shouldn't be believed when they point out our crimes."

    Mindy, you posed some very incisive questions. Thank you so much! And the best this joker can do is respond with nonsense non-sequitors. Pathetic, but typical of CDC re ME.


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