• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Q & A with CDC's STEVE MONROE, by Mindy Kitei

The CDC says it's found XMRV in prostate cancer patients but omits crucial facts from its XMRV study on CFS patients. And it appears Bill Reeves, the former head of CFS research but reassigned in February to mental health surveillance, will continue to do CFS research.

Mindy Kitei
CFS Central


Senior Member
i read it! how pathetic. why did he agree to an interview if he was not going to answer any of the questions?

thanks, mindy. i'm sorry he wasted yr time.


Patient in training
I don't think this was a waste of time at all. We are learning who they are, what alliances they have, their strategies, their stubborness, and how they want to use ward of state children to test their theories and test some drugs on them.

Mindy, will this information will be used for paper article?

And question for all, should we ask Mrs Sebelius, Wanda Jones, to let the big boys play in their sandbox by themselves and ask them to create a ME department?


Down With the Sickness
What a superb demonstration of "government speak!" Thank you for all your good work, Mindy!

ETA: Loved your questions, by the way.


Senior Member
Toronto, Canada
I can't begin to imagine how a human brain functions when it's wrapped in so many layers of denial. Obviously, evasion and deflection are essential tools! Does Monroe realize, even for a second, how transparent he is when he dodges, weaves and ducks like that? You don't have to be a scientist, journalist or patient to see that nothing's getting answered. All you need is grey cells ... and a sense of decency. But the CDC lost the "decency/conscience thing" long ago. The idea of using foster children -- having that idea for even a second -- speaks to that in a chilling way.

Mindy, you asked all the right questions, directly and specifically. He knew he was up against the very best. I look forward to your follow-up. And even if Monroe keeps stonewalling, it becomes part of a damning record.

I love your blog. Thank you so much for what you do.


Señor Mumbler
What a superb demonstration of "government speak!" Thank you for all your good work, Mindy!


Thanks as always. I hope you can pin him down on cross-examination. :Retro smile:

Q and absolutely no A. It's amazing how transparent this nonsense is. Who does he think he's fooling?

Dolphin has done a great job in a thread entitled Collected information on James Jones (now the real head of the CDC's CFS program?) of highlighting Dr. Jones' "contribution" to the CDC's efforts. I think the notion that he's taking over the real leadership is a very plausible one. He appears to be a Reeves puppet and/or protege. Dr. Jones' role may be worth asking Steve Monroe about. I'm sure the answer will be enlightening. Or not. :Retro wink:

With these kinds of friends who need enemies?

Keep up the great work and thanks to Dr. Mary Schweitzer for her contributions. After reading some of the questions, I wasn't surprised to see she contributed.



Phoenix Rising Founder
It was amazing to see such an accomplished bureacrat in full swing. Have you ever seen better? He is amazing skilled at saying nothing. It leaves a big pit in my stomach, for sure, but I also have a little awe at his expertise. I think it would take an Senate investigating committee to get anything out of him......

The CDC probably thinks that his willingness to be interviewed helped.....it only made things worse...(quite a bit worse actually)


Senior Member
I particularly liked this bit:
SM: The information in the Retrovirology paper was consistent with the specifics of the study design.

I'm no biologist, but this sounds to me like "We designed the study not to find XMRV in CFS patients and the information in the Retrovirology paper was consistent with that".

Gaaaagh. Dr. Monroe is indeed more bureaucrat than scientist. It's too bad there's no way to revoke a PhD. degree for unscientific behavior - as far as I am concerned, he's just MR. Monroe, and he can take MR. Switzer and.....well, whatever. I would love to get this guy under oath in front of a Congressional panel and grill the living daylights out of him. His responses to Mindy were the equivalent of taking the 5th Amendment on the witness stand, except that he's protecting himself, or rather his career, by protecting his employer.

Monroe's curriculum vitae (not the most recent, but recent enough) is posted at


He's got enough experience to know how to conduct good science, but he's been with the CDC a very long time. He's not ever going to say anything that makes them look bad.


Senior Member
Magic Eight Ball?

When I came across the "Q and A" that Mindy posted at her site earlier today, my reaction was that the "Answers" weren't responsive - they really looked like a few canned statements that had been supplied as perhaps the most "appropriate" responses to the Questions from a limited group of statements that could be chosen. Not really responsive.

I realized when I came back to this later, that it reminded me a bit of the Magic Eight Ball. I think we want to keep shaking the ball until we get more appropriate answers. I think our chance of getting better answers is about the same, unfortunately.

When Monroe appears at the next CFSAC meeting, I'm going to be seeing an eight ball at the top of his neck....


XMRV - L'Agent du Jour
Based on SM's answer to the last question, I'd say he doesn't know what disease he's studying - it could be anything. As a result, no real scientist comparing data from worldwide XMRV CFS/ME papers is going to be able to draw any conclusions from the CDC's results. It is a uniquely CDC-esque study where the patient qualifying criteria change at random (according to which page they open in the telephone directory?)


Senior Member
I find his patronizing tone deeply offensive. He's level of condescension is unparalleled in recent memory. Really, who DOES he think he's fooling? That's easy. It's absolutely clear to me that he thinks all of this is way over our heads and that our disordered personalities couldn't possibly get a realistic grasp how incredibly smart he is.

It's infuriating. Don't you want to follow up with a question like, "So if I understand you correctly sir, you're saying we should just eff off and die then?"


Senior Member
Clearly change has not reached CDC management.

If they really can't see a problem in having the same people who define the disease and choose the patients to test also defining the control positives used to validate the test, they are completely lost. Those three independent labs were simply following instructions dictated by the group at CDC, including which control samples to consider positive. No other samples of any kind were found positive.

The group which collaborated with WPI headed by Dr. Eric Klein of the Cleveland Clinic, (editor of the journal Urology,) was primarily interested in prostate cancer. They developed their first assay several years ago. It is unlikely they would accept a new assay fine-tuned to match characteristics of ME/CFS patients. This represents true independence in the choice of controls.

In public material the CDC has never detected XMRV in blood from any infected human being. When he says they detected it in prostate cancer, he is perhaps being disingenuous. The presentation given at a conference earlier this year announced that they had detected XMRV in 2 out of 165 tissue samples from prostate cancer patients. Since the virus was discovered in this context, years ago, this is not exactly earthshaking news. To detect any less would undermine CDC credibility to detect XMRV in any circumstances. So far, there is no published material, or even public data, to support any assertion the CDC group can detect XMRV in blood from infected humans. This is why they had to create artificial positive control samples.

Since they have no ability to find XMRV except in prostate tissue, you could avoid testing any patients without prostates. Those with prostates would probably object to the surgery required for the CDC assay. This neatly eliminates all possible CFS patients.

In these circumstances, the claims made in relation to CFS could apply to any illness tested via blood, including prostate cancer. The emphasis on CFS in publication must be chalked up to other factors.

The whole exchange could be titled "Interview as a Non-Contact Sport".


Places I'd rather be.
Doesn't look like Monroe really answered anything. Moreover, he hints that Reeves may be involved in future "cfs" studies.


Aristocrat Extraordinaire
Doesn't look like Monroe really answered anything. Moreover, he hints that Reeves may be involved in future "cfs" studies.

Having Reeves involved with future CFS research is like making Tony "the butcher" of Baghdad middle-east peace envoy. Hang on a minute ...

The world gets madder by the second.


Senior Member
Mindy: Send your Qand A to Dr. Frieden (head of CDC) at ftdh@cdc.gov. Let him see how demeaning the responses are and the games that HIS people play with us - the TAXPAYERS.

Others: Feel free to email Dr. Frieden. Be gracious but do ask that he clean up the CDC/CFS program and do the right thing, finally. I did. I did expect that he might be the one to really clean house and fix the CDC/CFS issues before it exploded in the face of the CDC and did far more damage to them with the media/public/sick doing the "outing" than if the CDC had done its own house cleaning and redemption. I have been hoping that he would be the one to step up to the plate and do what is right. I did expect he would go explore the issues surrounding CFIDS and the CDC and make major changes. I hoped that he would have the smarts to realize that there was a very deadly virus out there and very real sick people who needed far better than what they had gotten from the CDC. I also hoped that he would realize that damage control would be far and away more effective if the CDC cleaned house, admitted the troubles, and worked to get the proper funding and research in place quickly to undo the damage they created and sustained.
So, email the good Dr. and ask that he do what is right by the American public and fix the CDC/CFS program. I have asked several times that Reeves be removed/retired from the CDC so that he cold not do further damage to us in any capacity. Might ask for that as well.

I think we should try and send this piece out in letters to our Congressmen and to our Senators and, if possible, President. The evasive and crafted tone make it sound like it was made up by a bunch of people that flunked public relations in college or something (at least they are making it easy for us!). Their answers are sort of like a parody of a parody.