Monday, March 28, 2011

I have a problem with Trine Tsouderos's reporting on XMRV: 3 of 3

Part 1

Before I get back to this last installment, this last look at the reporting of Trine Tsouderos to date, I want to address one specific criticism that some have levied at the Whittemore-Peterson Institute: the idea that, if the findings in Lombardi et al don't pan out, that this represents a 'false hope' that will have done patients a disservice.

As a patient, I disagree.

Why? Let's say XMRV doesn't pan out.

This 'false hope' has happened at a time when patient advocacy has finally been able to take effective hold on the internet. More so than in previous years, when fewer patients had computers, and when dial-up limited communication and interaction. Over the past few years, various sites have popped up that have enabled people to organize more effectively than in the past. Facebook and Twitter play a big role as well.

This means that people are also more well-informed, and understand that nothing is graven in stone, understand what's at stake, or at least have the opportunity to achieve that understanding due to the availability of information.

This community could use some hope, even if it does turn out to be false. We're learning on an ongoing basis how to mobilize, how to communicate, how to try to move forward. And this is happening with XMRV (or non-XMRV, related viruses) being the major issue driving advocacy, the all-important motivating factor, the backdrop and backstory for all of the awareness and mainstream media coverage we've seen over the past year or so.

So I reject the idea that 'another false hope' would be such a negative for this patient population. Prove XMRV wrong? That hasn't been done, but if it is, we've learned a lot, lessons that can only help us.

The CDC, and by extension the NIH, the NHS and other governmental health agencies, and medical science at large has ignored us for decades. My belief is that they will no longer have that luxury anymore even if XMRV turns out to be the 'blind alley' some, inexplicably, think it already is.

Any of the doctors, researchers, scientists, who have expressed concern what this could mean if this represents a false finding, the damage it could do to the collective psyche of this patient community?

Where has your concern been for the past 25+ years?

Don't worry about how we'll take the hard news if XMRV doesn't pan out. We have so much fun every day, we'll somehow manage to deal with it. Most of you never worried about us before, so you don't have to start now.

Oh, yeah--one more thing. On this issue of dismissing the findings of Lo et al as not confirming the findings of Lombardi et al, which has been stated by Trine Tsouderos as much as any one person I know of--did it ever occur to you that the alphabet soup is difficult to keep tabs on?

There's XMRV, MLV, HGRV, PMLV, XMLV, HMRV...I've seen all of these used. I can't keep track sometimes, and I think I actually know what the differences are (although I'll steer clear of defining them here). Is it a crime against science to refer to them generally as XMRV?

I know that wouldn't be correct. But, really. This is all confusing enough. The study of MLVs is not new, but the specific retrovirus XMRV is. Is it such an awful thing if we 'think' of the MLVs found by Alter & Lo as 'XMRV' for the sake of discussion?

Because it seems to me that's what many people--patients, advocates and other interested parties, and journalists as well--have actually done. Yet it's awfully important to some to be highly specific about the viruses, but not the cohorts being tested.

Double standard? Is the difference between the terminology used for the viruses in question more important than the differences in diagnostic criteria?


Because the people who pay so much attention to one yet ignore the other obviously care about us, of course.

So, back to the topic at hand: in part 2 I left off following two reports Trine Tsouderos filed in October, 2010.

Fast forward a few weeks.

An awareness campaign undertaken by patients brought a message to the American Red Cross, who on December 3rd decided that CFS patients should not be allowed to donate blood.

On December 14th, the FDA's Blood Products Advisory Committee meeting spent quite a bit of time on XMRV, including several presentations. Dr. John Coffin and Dr. Jonathan Stoye spent a fair amount of time suggesting that Dr. Lo's findings, as well as those of Judy Mikovits, were the result of contamination.

Here is the transcript, beginning at the relevant portion, Dr. Lo's presentation. There is a lot here, but it is worth a look--at the very least, especially in a context where Trine Tsouderos assigns that relevancy to Robin Weiss' paper while having all but ignored Lo et al.

I see no reason to not include a link to the top of the document; it's not easy to navigate, but it'll be easier from here than from just a link to the beginning of Dr. Lo's presentation. After all, there were many presenters, and many viewpoints. The speakers included Drs. Lo, Indira Hewlett, Maureen Hansen, Judy Mikovits, Jonathan Stoye, Francois Villinger, Graham Simmons, Michael Busch, and Rachel Bagni (if not all of these people actually are doctors, please forgive me).

The public comment portion of the meeting, which begins at page 300, contains some especially interesting material.

Dr. Alter apparently considered the treatment of Drs. Lo and Mikovits from Jonathan Stoye and John Coffin to be aggressive enough (the basis for which was/is their newfound belief that XMRV and related findings are a matter of lab contamination) to warrant a previously unplanned, and, I'm told, what looked to be a hastily-composed response. Among his remarks:

"it has been confirmed now in at least four studies, two of which were presented today, that either XMRV or a polytropic MLV is associated strongly with chronic fatigue syndrome."

These remarks can be found towards the end of the public comment section, just above page 340.

Here's a link that describes Jonathan Stoye's aforementioned uncomfortable, um, moment addressing the untested samples from Groom et al. The samples I mentioned earlier on? The ones that were sent from NYC to London, which to this day remain a mystery as to their ultimate disposition?

I have to admit that as a biased patient, reading that was satisfying, gratifying, positive on many levels. It represents, to me, one of the least 'scientific' moments over the past year and a half--a period where strict adherence to 'science' would have served everyone a hell of a lot more than what's actually transpired. The 'false hope' meme is a red herring. The very real emotion involved in wondering what was going on with those samples, seeing the negative result of Groom et al, and wondering why this cohort somehow did not make it into that study--a question that remains unanswered...

...that was singularly unpleasant, all the more so because, for months and months, until it became clear no answers were to be forthcoming, Dr. Enlander and his patients had to endure a very frustrating, extended wait. Which only, seemingly, ended, when word came that Jonathan Kerr was to lose his job.

Under other circumstances, anything resembling Schadenfreude from reading the exploits of The Patient Advocate on that Tuesday in mid-December would have been anything but appropriate. As it was, it was more like the opposite effect of reading a Trine Tsouderos report on XMRV.

Ah, but mere days later, 4 papers alleging contamination in XMRV studies appeared in the journal Retrovirology. In their wake, one of the researchers, Greg Towers, was quoted as follows:

"XMRV is not the cause of Chronic Fatigue Syndrome."

This was days after the FDA meeting--where, oh, by the way, the vote was 9-4 in favor of the FDA banning blood donations from ME/CFS patients.

What was that I remember about Judy Mikovits making all sorts of 'claims?' And how bad, how wrong this was? Oh, sorry--this claim was actually based on published research.

Kind of like Harvey Alter's claim that Lo et al confirmed the WPI's study.

Ah, but this is important stuff. Now, Trine Tsouderos had not covered the leak of Harvey Alter's slides. Had not covered the withholding of the Lo et al paper. Did not cover the Lo et al paper.

Did cover the Weiss paper.

Did not cover the Red Cross blood ban (or, to the best of my knowledge, any of the other blood donation bans). Did not cover the FDA meeting.

And while I certainly don't expect a reporter to think they will find credible material for a story on a blog (it's not like this was covered anywhere else, either, in fairness), the untested samples from Groom et al was something else we didn't see.

What a shock.

"Contamination is a likely explanation for scientific data that seemed to link a retrovirus and other mouse viruses to chronic fatigue syndrome and prostate cancer, according to four papers published Monday in the journal Retrovirology."

No, nothing offered by Mikovits, Alter, or Lo one week prior was worthy of so much as a mention. I mean, it's only the blood supply we're talking about.

"several other teams of researchers, including one led by the U.S. Centers for Disease Control and Prevention and another from the National Institutes of Health and the U.S. Food and Drug Administration, have published papers failing to find evidence linking XMRV to chronic fatigue syndrome."

I'm sorry...I really have to ask. Would it not have been prudent for a journalist to at least reach out to Alter or Lo for a comment?

No? Seriously?

Tell me this is not bias. Please. I'm pretty open-minded. If you don't like what you're reading? Convince me. This should be a discussion. I think so, anyway. Maybe I'm wrong about that, too.

"One of the teams, from the NIH and FDA, found evidence of other mouse viruses in the patients, but it did not confirm the original study. The new papers suggest contamination could explain that team's findings, too."

Yes. It could. But, like I said earlier, we're supposed to accept that these guys over here got everything right (except the cohorts), and those guys over there were just sloppy enough to contaminate their studies.

Now, I do not mean to demean or insult anybody. My understanding is that Brigitte Huber is an accomplished researcher who enjoys an excellent reputation. Contamination is, we are told, always a possibility, as it can occur so easily, in so many ways.

But I haven't forgotten the report from last year's Invest In ME conference where Huber presented her study, where she announced that, well, I might not have this exactly right, but...if her results were explained by contamination, then that had to be the case for Judy Mikovits' work, too.

I'm pretty sure I'm not comfortable with that assessment. And Huber's comments upon publication were similarly specific and definite.

Now, there is this panel--the XMRV Blood Working Group. The CDC, the NIH, FDA, CAA, WPI all represented. We have not heard a lot out of them, but they've been at it for months now.

Trine Tsouderos hasn't bothered to mention this, either. Why would she? The CDC study was negative, and the NIH/FDA paper did not confirm the original findings. Right?

Well, somebody thought it was important enough to look into. And towards the end of this column, we do see this:

"Researchers said a large study being led by Dr. Ian Lipkin at Columbia University should help settle the question."

Why bother, if the findings appear to be refuted by claims of contamination?

This government of ours wastes more money on useless nonsense, I tell you...

Wait...where are we? December 20th? There's more.

Another blog by Amy Dockser-Marcus in the WSJ.

Strange, I didn't see this in the piece Trine Tsouderos had:

(the papers)..."are unlikely to resolve the debate over whether XMRV is linked to diseases like chronic fatigue syndrome or prostate cancer, especially since the authors of the papers disagree on the interpretation of their data."

Huh? That's not what Trine reported. She did report that John Coffin admitted that these papers did not settle the question, but heck, he co-authored two of them. Okay, let me be clear: I certainly didn't see anything representing anything resembling a disagreement over the published data in the Los Angeles Times.

Maybe it's my reading comprehension.

Or maybe there's something more here.

"Greg J. Towers from University College London, a senior author of one of the papers, told the Health Blog that his group’s findings indicate that ”XMRV is not a human pathogen.”

Ah. I see. Trine didn't get that quote. No harm, no foul.

Wait--not a human pathogen? Wow. That's another conclusion entirely--and it led Eric Klein, co-author of Robert Silverman on XMRV research involving prostate cancer, to respond both in a comment on Vincent Racaniello's Virology blog, as well as in an interview with longtime advocate Craig Maupin.

"But John M. Coffin, a retrovirologist and a co-author of two of today’s Retrovirology papers, told Health Blog that while his groups’ studies demonstrated that mouse DNA is everywhere in labs, none of today’s published papers ”definitively show that any prior study is wrong.”

Okay: mouse DNA is everywhere in labs, and only those who tested XMRV and ended up with a negative result somehow managed to avoid it. Check.

Not only were all those negative papers important because there were more of them, they're also more important because only they managed to avoid ubiquitous contamination, the likes of which can even be found in a box of supermarket cereal...the stuff of Dr. Coffin's nightmares.

”This is not the end of XMRV,” Coffin said"

Well, we know that Professor Racaniello retracted a quote he'd given Trine Tsouderos characterizing these publications as representing 'the beginning of the end for XMRV and Chronic Fatigue Syndrome." But Trine had quoted Huber:

"I think this is: end of story," said Tufts professor Brigitte Huber, another author of one of the papers. "It is overwhelming."

Confused yet?

Well, this is working towards the present, and, mercifully, the end. More negative/contamination papers? Of course. Now, while those of us with nothing better to do than follow ME/CFS & XMRV-related developments hadn't seen much from Trine lately (although, as I'd noted in my comments to her on the Tribune site after the web chat, she did file a piece that focused on "Chronic Lyme Disease" awhile back, one that drew a rebuke from the Knight Science Journalism Tracker blog at MIT), she did have a piece, last week, on a new development.,0,6116823.story

"A European research team this week reported being unable to find any evidence of XMRV in the blood of people diagnosed with chronic fatigue syndrome and their healthy peers, the latest in a stream of studies in which researchers looking for the retrovirus in the blood of both sick and healthy people have come up empty. Others have reported no evidence of the retrovirus in the blood of patients who were previously found to be XMRV-positive."

I can't even keep track at the moment, but I'm guessing that European study may have been the Erlwein et al retread, wherein Myra McClure, who last year declared that nothing on God's green earth could get her to participate in any more CFS research...published a paper that involved re-testing of the same samples used in the previous study. The one they published in seven weeks.

This time they are said to have specifically replicated the WPI's methodology.

Um, I'm sorry. The same Simon Wessely who emailed a CFS patient last year that he doesn't find the CCC to be helpful, as far as CFS criteria goes, I'll say flat-out: I don't trust that. Sorry. I don't trust your cohort, Professor Wessely, I don't trust your samples. I see no reason to trust them any more than I trust the CDC's 'Empirical' samples. And I wonder if you have any idea of the damage you have inflicted on those more severely stricken, especially that 25% ME group, with your garbage studies on your Oxford cohort patients who are able to travel regularly to your Fatigue clinics. You should think about that someday, you really should.

Ad hominem retracted.

The second study mentioned here I can't recall off the top of my head. But from the looks of this description, it would seem to speak to methodological issues, and, again, that is not something I am qualified or willing to comment on.

Lots more in this piece about...patients taking antiretrovirals. Big bad Judy Mikovits not opposing this. XMRV test sales. Negative studies. Quotes from Coffin, Stoye, Towers, along with Annette Whittemore and Vincent Racaniello.

And a mention of a recent paper that suggested that even the original finding of XMRV by Robert Silverman of the Cleveland Clinic may itself have been a matter of contamination--the first time, really, that those alleging XMRV to be a lab contaminant have directly challenged Silverman's work (this may soon become even more interesting).

No mention, of course, that Drs. Alter & Lo did a presentation on their work at NIH in late February, an indication that they stand by their findings. At this point, I didn't have any reason to think that would make it into the reporting of Trine Tsouderos, now, did I?

But do I think that Judy's got it right, and most of the rest of them, except for Alter & Lo, have it wrong?


Am I supposed to think otherwise until I see some evidence to the contrary that makes any sense? Am I supposed to examine the past year and a half of this crap and not see a pattern that looks--at best--suspicious, beginning with the Wessely/McClure study that was somehow wrapped up so soon after the WPI's paper in Science?

Again, I and the other patients could be wrong, Judy could be wrong, all the rest. I don't know. I have hoped that we will see. But the research that has followed the Science paper begs questions that seem awfully obvious, and yet this science writer at the Tribune keeps writing pieces with the same narrative, offering up the same talking points...and utterly ignoring the concerns of the Office of Transfusion Medicine.

Well, that's okay, I suppose. A few bloggers have decided Judy's hypothesis is finished, kaput, end of story. I'm not particularly interested in naming them or linking to them, at least not here, not now. If they're right, they'll get all the credit they deserve. If they're wrong, they probably won't receive any of the scorn they will deserve, but that's okay; I accept that that's how things work, whether I like it or not.

They're not journalists like Trine, of course: but how unreasonable is it to expect that someone might actually care about learning about the differences in criteria?

Plenty unreasonable, apparently.

Amy Dockser-Marcus, WSJ Health Blog, from this past November, on the planning for the Lipkin study:

"As a starting point, everyone had to agree on how to define a CFS patient for the purposes of the study. The issue has been highly contentious and Lipkin says they tried to agree to criteria for patient selection that “includes everyone’s viewpoints.”

"The solution: the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection — such as a sore throat or tender lymph nodes — around the time they developed CFS. The thought is that if there is a viral link to CFS, it’s most likely to show up in those patients."

Amy confirmed in the comments on this piece that the study will use both Fukuda and CCC.

Gee, I'm sure the CDC was real happy about that. I mean, it couldn't have been them offering up the contentiousness, now, could it have been?


Imagine that study moving forward studying only Fukuda? Or, if the CDC had their way, more likely, Empirical (Wichita/Georgia)?

Imagine Ian Lipkin not knowing the difference--which he didn't--and accepting that the CDC is the authority; they decide what CFS is, not anybody else.

Assuming my supposition on the CDC is close did we come to having this happen?

David Tuller, in the New York Times earlier this month:

I have no wish to flout copyright law, and I'm probably going to go past 'fair use' provisions with this. But it's key; it's really, crucially important, so much of what Tuller brought to the fore in this piece. So, taking into consideration the new pay wall...I'm going to quote more liberally than I normally would from this piece:

"The British scientists who conducted the (PACE Trial) research identified study participants based largely on a single symptom: disabling and unexplained fatigue lasting at least six months. But many researchers, especially in the United States, say that definition takes in many patients whose real illness is not the syndrome but depression — which can often be eased with psychotherapy and exercise."

"In studying the condition, he and other researchers exclude patients whose only symptom is fatigue, however disabling, and instead rely on a case definition that includes other cognitive, neurological and physiological symptoms. Those symptoms, they believe, indicate a complex immune system disorder possibly caused by a virus or another agent."

"No case definition is perfect; every disease has outliers. But whether a definition is broadly or narrowly drawn can profoundly affect the statistics vital for public health planning."

"The single-symptom case definition used by the Lancet authors, known as the Oxford criteria, was developed in Britain in 1991. Like the team that conducted the current study, the 1991 group included prominent mental health professionals.

"But many scientists and clinicians view a multisymptom case definition published in 1994 by the Centers for Disease Control and Prevention in the United States as the international standard.

"In addition to six months of unexplained, disabling fatigue, the C.D.C. definition requires at least four of eight common symptoms: cognitive problems, sleep disorders, muscle pain,joint pain, headaches, tender lymph nodes, sore throat and what is called “postexertionalmalaise”— a relapse that occurs after even minimal activity.

"In 2005, the agency unveiled an “empirical” case definition that recommended specific screening questionnaires and cutoff scores for measuring fatigue, physical dysfunction and other symptoms. Critics challenged these newer guidelines on the same grounds as the Oxford criteria, arguing that the questionnaires and scoring methods were too ambiguous.

"In contrast, a 2003 case definition from Canada is considered the most restrictive and is preferred by many patients. It elevates postexertional malaise to a central role in the illness and requires a range of neurological, cognitive, endocrine or immunological symptoms. In 2009, researchers from DePaul University in Chicago reported that 38 percent of patients in a study sample suffering from depression alone were given misdiagnoses of chronic fatigue syndrome using the C.D.C. screening tools but not the narrower Canadian definition."

So, again, I count three journalists who have written extensively about ME/CFS and XMRV over the past year and a half in major American publications. Guess which one didn't bother reporting the sorts of things I have highlighted in the last two pieces?

Why? Is it simply bias? Is it Trine Tsouderos' sincere vision of what this story is? Is it something else I don't want to even speculate on? I mean, I'd seriously prefer to believe it's not option C. I'd go with simple bias, based on what I have seen. But if that's true, why does that bias exist? I mean, I think I've done a fair-to-middlin' job of demonstrating it.

I really don't think it's because Trine Tsouderos is a poor reporter (she is, after all, not only well-respected, but is an award-winning journalist) or that she should be mocked because she wasn't always a science writer. But I have to say I'm kind of shocked to see this sort of bias in a journalist covering a story that, regardless of what it may look like to some, has--or at least had, if you suppose the link has been debunked--absolutely tremendous implications with regard to public health.

A story about the criminally negligent handling of a very serious disease that's really not taken seriously at all, nor is it the beneficiary of much in the way of research dollars from the government--compare:

Comparisons are...well, you can't compare a disease few take seriously to any known to be 'serious.' But...I mean, we get what, $5 million a year? For what? The CDC telling us we're suffering from a disease linked to personality disorders? These are the people critical of the Canadian Consensus Criteria? For those who don't know--take a look at this:

Yeah, it's all in our heads.

Now, Trine wasn't flogging that shameful aspect of this awful story. But there is a story there, one that Amy Dockser Marcus sees, one that David Tuller sees.

It's Trine Tsouderos' prerogative to see another story. Maybe she honestly believes that the Whittemores & Judy are looking to profit off the backs of sick people just like so many others have.

This is something that some do believe, and it's so unbelievably, sickeningly wrong I don't have words for it. I don't know these people from Reno. But this I know. Even if Judy is wrong, and I don't think she is, I have come to the firm conclusion that these people are as sincere as it comes. No matter what people think of them because maybe at the height of a tremendous controversy, following a media blitz, rigorous travel schedule, a whirlwind they had never before experienced, and didn't expect...they could've chosen their words a little more carefully. Or something.

Big f*cking deal.

Judy Mikovits spoke at a 'dodgy' autism conference where many attendees think there's a link between vaccines and autism, a position mocked by many.

Oh, boy, we never heard the end of that.

Less popular than that denunciation among those who parroted it, was that someone saw fit to place her as a member of the Blood Working Group, to speak at the First International XMRV Workshop, to present at the FDA's Blood Products Advisory Committee present, alongside Ian Lipkin, at the New York Academy of Sciences' event on Pathogens In the Blood Supply.

Apparently none of those matter. What matters is that she spoke at a conference where Andrew Wakefield also spoke.

Oh, the humanity.

Look--any way you slice it, whether the hypothesis is valid or not, these people from Reno have done more for the struggle to research ME/CFS and have it taken seriously than so many others have managed. Which is not a knock on them, the many clinicians and researchers who have cared and fought for us; not a knock on their efforts, not at all.

If anything, that there has been such a struggle speaks to the resistance they've encountered. WPI broke through, in a bigger way than just about anyone had previously. And that took a unique combination of funding, will, and science. It conferred glory that is richly deserved by many others, yet went to WPI--which ruffled feathers even within the group of people who have worked on our behalf. Perhaps understandably so.

There is a subgroup of patients who may be unable or unwilling to look upon WPI critically, which is not a good thing. Yet it cannot be worse than what we've had many years?

Some of us manage to retain something in the way of an ability to think critically, and we can make our own decisions. The WPI isn't perfect; nobody is. But for every dagger thrown their way--and some may be valid--some of what's directed at them is just plain sick & wrong.

Even if XMRV doesn't pan out, I think the CCC matters now, and "CFS" doesn't go back into the dustbin. But that remains to be seen.

So...why is there what looks like bias on the part of this reporter? I mean, I really don't think Trine Tsouderos is taking cues from Peter White or Michael Sharpe!

I'm going to hold out some sort of hope that she may find a reason to approach this story from a different perspective. Jamie seems to think she will cover us fairly.

I'm not sure I share her optimism, but I'd rather do so than lean reflexively towards the negative that I've been pointed in the direction in based on what I have detailed. And which I do not believe I have taken much out of context.

I guess we'll see.


  1. This was brilliant, Jay, thank you!

  2. I have never known a more brilliant group of people, as represented here by Jay, as our ME/CFS patients.

    Just to imagine the energy and brainpower this three-part blog took drains me.

    It also enlightens me...thank you Jay.

  3. Great blog series Jay. Excellent work, research and references. At the very least Trine will take notice and be more responsible in checking and reporting actual facts, leaving fiction to well, fiction writers.

  4. Thank you for this, Jay. You have put it all together here.

    Patricia Carter