For nearly a year now, I have had a problem with the reporting of Trine Tsouderos on a topic that I follow, mostly because of its relevance to me (and many other people) personally.
I do not wish to have a problem with Trine Tsouderos as a human being; my purpose is only to point to aspects of her reporting I find questionable. There is no intent to make this personal, though I probably have not been able to completely avoid snark, and, additionally, what I have written could, quite understandably, be taken personally.
But this is a big problem I have seen unfold for a long time now, and, though previously unable, I have now managed to write something that, hopefully, sufficiently expresses my issues with her reporting. Which is not to say that it is an attack on journalistic integrity--as a matter of fact, I hesitate to label Mrs. Tsouderos as biased, although I certainly perceive bias in her reporting. However, given what I've seen, I honestly don't know what other conclusion I can logically and feasibly draw.
I have picked apart many of her columns going back nearly a year. My writing process is somewhat fragile due to the ME/CFS issues of strength, stamina, concentration, focus, and general cognitive dysfunction (though as a symptom that is probably milder for me than for many other fellow patients). If someone reading this who does not agree with my stance (which, try as I might, I cannot entirely rid of my own personal bias), I invite you to pick apart this blog as I have picked apart the columns in question. That's only fair. I'm sure there are mistakes, and maybe I've left out important details myself. I would suggest avoiding arguing that which I avoid arguing, however.
So...earlier this week the Chicago Tribune had a web chat conducted by reporter Trine Tsouderos and Dr. Paul Offit, on the subject of vaccine safety and the various controversies involved.
Although I am finding the blogs of Dr. Jamie Deckoff-Jones to be increasingly intriguing, this is not something I know a lot about. And if I have to choose between being 'pro' or 'anti' vaccination, I'm 'pro.' My mother is a polio survivor. I believe they're necessary. And I can't say I'm a fan of this or that vocal autism activist organization.
I will say that it seems to me that anecdotal evidence may suggest that there are more problems in the recent past than was the case in prior years. Is that anecdotal evidence valid? Are there more issues with vaccines--not necessarily because of their 'safety,' but possibly due to a previously unknown, unforeseen development involving how the human body deals with vaccination? I don't know, and I'm guessing experts would say no. This is not my area. And I have always felt that one needs to err on the side of the many (as long as we're able to steer well afar from eugenics, naturally). If vaccines are, say, 99.9% safe, is there a reason not to vaccinate? I don't think so.
But what about that .1%? Everybody's different; can we say for sure there wasn't always a miniscule percentage of people who would experience a problem due to vaccinations? That can be a lot of people, right? Well, honestly, I have to go with the benefit of the 99.9%. Can 100% safety and efficacy ever be proven? Probably not. And I'm guessing no evidence exists to suggest that this alleged issue with perhaps .1% (or whatever fraction) of vaccinated humans ever happened. So maybe it never did; can't discount that. But for the sake of argument, bear with me; I float the premise that there has always been a tiny percentage of people for whom vaccines may have caused harm. But that this was a risk well worth taking, not that one can dismiss it as acceptable collateral damage; probably something not even serious enough given the overall benefit to study. Grant me that, for the moment.
Now, is it possible that what once may have been 99.9% safety is now slightly lower? Maybe significantly lower? Are there just a lot of people who have been led by the likes of Jenny McCarthy whose voices seem louder due to the internet? Or is there a genuine issue worthy of further examination, not to be framed by the 'vaccines/autism' poisoned debate, far from the radioactive spectre of Andrew Wakefield, a different approach entirely?
That's a discussion for trained professionals, but I think maybe it's worth having. Especially given what Jamie is working on. I have a lot of respect for her, in many ways. Her recent views may be a bit strong for some, but I am interested in having an open mind on this.
Now...this web chat? Jamie posed a question, and Dr. Offit was probably not as civil as he could have been in his response. Jamie has reposted this exchange on her blog, so I invite you to take a look at it there. Or here:
Of course, XMRV came up. Dr. Offit:
"The xenotropic murine retrovirus story as a cause of neurologic disease, including chronic fatigue syndrome has clearly fallen apart."
Now, if your only knowledge of XMRV, especially as it relates to a reported association with Chronic Fatigue Syndrome, comes through the reporting of Trine Tsouderos, this might seem like a perfectly reasonable statement.
To many of us who follow this story closely, it is anything but.
Following the chat, there was a space on the above-linked page for reader comments. Those comments have now been removed. However, I chose to save mine, as I have long wanted to question Trine about her reporting. I am rarely able to write as I would like, so taking the time and spending the effort on emailing her has not seemed like a viable option for me.
Here are (most of) the relevant comments in an XMRV-related sub-thread (most of the comments, naturally, were on-topic). I chose to edit others' out for the sake of their privacy though they offered some equally good points; as a result, this may read somewhat choppy, but please bear with me.
Did you cover the Harvey Alter paper?
Or when the Red Cross banned blood donation from ME/CFS patients?
Or when the FDA voted 9-4 to recommend that the FDA should enact a similar ban?
Or anything else that transpired at the FDA's Blood Products Advisory Committee meeting in December?
Or the presentation by Alter, Lo & Gill at NIH a month ago?
Because if you did, I sure didn't see it.
I saw lots of coverage of XMRV & ME/CFS that would suggest that none of what I have mentioned means much.
Is that how consensus is built in science?
- Trine Tsouderos · Tribune Company
- Trine Tsouderos · Tribune Company
- Jay Spero · New York, New YorkThis is a rationale for not even covering that paper given all the coverage you've given to those who characterize the XMRV hypothesis as faulty? Harvey Alter stating repeatedly that their findings were confirmatory of Lombardi et al not even worth covering? If those findings are not valid, surely it would have been worth it to point out why, wouldn't you say?
Yet you have simply ignored this no matter how many times it's been raised in your comments sections. Why?
Did you have any questions about how the scientific evidence published in Erlwein et al was submitted as a completed study within seven weeks after the earliest date at which the study could have even been proposed?
Bother asking Jonathan Stoye about the samples that were sent to Jonathan Kerr for the Groom et al study but which were never tested or published? Or anyone else, for that matter? In your coverage of all the negative studies, did you even know that more than 100 samples had been sent from a cohort closer to Lombardi et al than any other, but not used, the whereabouts of which are currently unknown?
Lo et al was not worth mentioning because 'that paper is in question,' yet we're supposed to accept there are no questions about the other papers? You can't name one paper that tested the same cohort as Lombardi et al--not one. Do you even know anything about the differences in these patient cohorts? One woud think you might given how often you've covered this issue, but until covered in the NYT a couple of weeks ago, I haven't seen any mention of this issue anywhere except perhaps the WSJ.
Meanwhile, if the contamination papers were not themselves in question, why would Alter & Lo have presented on their findings at NIH just a month ago?
I'm afraid I do not understand how you have decided that negative and insulting coverage of Judy Mikovits has been ground worth treading repeatedly yet mentioning Harvey Alter even one time in any piece you have filed, to my knowledge, has somehow not been deemed worthy of your time. - Trine Tsouderos · Tribune Company
- Trine Tsouderos · Tribune Company
- Trine Tsouderos · Tribune Company
- Trine Tsouderos · Tribune Company
- Trine Tsouderos · Tribune Company
- Trine Tsouderos · Tribune Company
- Trine Tsouderos · Tribune Company
- Trine Tsouderos · Tribune Company
- Trine Tsouderos · Tribune Company
- Jay Spero · New York, New YorkSept. 30th: "It does not confirm the original paper." No mention of authors or that not only in Zagreb the previous May but also during a press conference held upon release of the delayed paper that the paper's authors claimed exactly the opposite of your statement.
You could be right and they could be wrong, of course. But you stated flatly that which was the opposite conclusions of the researchers, who you still refuse to so much as name, let alone offer any mention of reaching out to for comment.
June 7th: We'd already read your piece on Dr. Oz--thanks fot the tip that one might want to employ some critical thinking if one was to choose to watch whatever it is he airs in the name of medicine. As Hillary Johnson previously pointed out, any legitimate concerns about patients taking antiretrovirals were offered without so much as a guess as to how many patients might actually be doing this. 9 months later, does anyone yet have an idea as to what sort of numbers we're talking about with regards to this miscarriage of medicine?
December 20: The contamination papers are worth reporting on; the FDA BPAC meeting was not. After nearly half a dozen nations decided that patients diagnosed with ME/CFS should not, as of 2010, be allowed to donate blood any longer. The American Red Cross bans us on December 3rd, followed by the vote at the BPAC. Not worth mentioning. Hmmm.
March 17th: Still no mention as to why the Office of Transfusion Medicine might have been interested in researching this virus in the first place. Still no mention that the viruses--oh, sorry, they're not XMRV, check, which begs the question as to why we would have been told that the WPI findings were 'likely true, despite the controversy,' although not in the ChiTrib--were found in nearly 7% of healthy controls.
Who just happened to be blood donors.
What was that you were saying about 'scientific evidence' as opposed to 'public health policy?' If it's published in PNAS it's not scientific evidence because...why? Because it wasn't exactly the same virus, it was only just some other virus that's very, very, very similar, and also happens to cause leukemia in mice?
Well, it's still legal for ME/CFS patients to donate blood, even if the American Red Cross won't allow it.
I will refrain from advancing that line of thought any further, and will simply point out that you chose not to respond to (save noting your ONE mention of Lo et al) even one point I have raised.
Trine Tsouderos will be speaking at the New York Academy of Sciences this coming Monday, correct?
http://www.nyas.org/events
From the abstract: "Tsouderos will also talk about the journalistic convention of “balance” and why it is fine for reporting on people’s opinions about the mayor, but misleading and outright dangerous when reporting about medical issues."
I will leave it to anyone reading this (and having read the points I have raised above) to decide if Trine Tsouderos is a good example of a journalist who should speak on the issue of 'balance.'
I offer this because if--and as a layman I am not qualified to comment on the evidence--if those alleging contamination are wrong, then we have an issue with a potentially infectious retrovirus linked to prostate cancer and ME/CFS--at the least--being found in something like 5% of the healthy blood supply.
Whether it's "XMRV," something very, very like it, or a combination.
Trine Tsouderos has not said those alleging contamination are correct. But I submit that her reporting on the issue has been, with all due respect, rather one-sided.
Would it really have been false balance to reach out to Harvey Alter for comment? Seriously?
Then there was the recent piece on "Chronic Lyme Disease."
http://articles.chicagotri
Chronic Lyme Disease may well be a dubious diagnosis. I don't know. There may be a difference between people affected after initial short-term antibiotic therapy, people affected long-term, and those who embark on a course of long-term antibiotics, which not every patient does.
But it strikes me that there would have been room somewhere in this piece to mention that the 'dubious' diagnosis was being studied at Stanford University.
http://chronicfatigue.stan
Is Stanford all of a sudden a house of woo? Would it be a legitimate response were Tsouderos to offer that this website had not been launched at the time the piece was written?
Perhaps.
But would it have been so difficult to find out that Dr. Montoya had this in the works? Was it a state secret, or something two reporters for a major metropolitan newspaper might have been expected to have found out about in their work on a lengthy piece such as this one?
I don't know.
But on the issue of balance alone, the Stanford angle aside, someone else had a bit of a problem with this piece.
http://ksjtracker.mit.edu/
Another woo-ster?
Perhaps not.
Lastly, at least for now: it's pretty big news if the Chicago Tribune classifies "Chronic Lyme," possibly correctly, as a 'dubious diagnosis." Right?
As a matter of fact, if one does a Google search for "Chronic Lyme," and then clicks on "News," so as to filter out anything Google might consider to be, say, less than newsworthy (such as dodgy blogs, etc), not much comes up.
http://www.google.com/#q=%
18 results.
But a month ago there was a news story surrounding a study that came out involving proteins found in the spinal fluid of ME/CFS patients.
And...Chronic Lyme patients.
Interesting.
It was covered by Katie Couric on the CBS Evening News.
There were an awful lot of stories that went out around the country and are on the websites of countless news outlets--all with the exact same title.
"study finds clue to chronic fatigue, chronic lyme"
Chronic Lyme--which is a dubious diagnosis, right?
http://www.google.com/#hl=
A day or two after the study, there were a few thousand results for this story's title, in quotes. A month later, as is the way of the internet, there are 48,000--something like 10x as many.
I hate to have gone so off-topic, but I have no knowledge about vaccines and the current controversy, although I will say that I think it's probably unwise to simply dismiss Dr. Deckoff-Jones so cavalierly.
What I do have is a genuine curiosity about the reporting of Trine Tsouderos.
Now, this didn't just happen, at least from my end; this didn't come from out of the blue. Those were questions I wanted to pose to Trine Tsouderos (or at least point to somehow publicly) for a very long time. My reasons are many, and to make this case this is by necessity going to be a very, very, very long blog post. There will also be some redundancy as I revisit some of what is posted above in more detail. Fair warning.
Now...it's important to me to try to be fair to everyone. That can be difficult at times when one perceives that others may not be fair themselves.
May not be fair to those of us with ME/CFS, but so many of us are used to that, for so long, many far longer than me.
May not be fair to those of us who believe that XMRV as a potential agent in ME/CFS, causal or otherwise, deserves a fair hearing, fairer than it's been getting.
There are three journalists in the mainstream media in particular who have written fairly regularly about XMRV, ME/CFS, either, both. Amy Dockser-Marcus in the Wall Street Journal, David Tuller in the New York Times, and Trine Tsouderos in the Chicago Tribune.
Amy Dockser-Marcus has written extensively about XMRV. In my view she has been fair, accurate, and thorough. That she has spent as much time as she has on this indicates to me that she clearly sees a story here, and her editors would, I surmise, agree. Many of her pieces are featured on the WSJ's Health Blog, which I assume doesn't make the print edition, but, nevertheless, she has done an exceptional job on what many of us ME/CFS patients see as THE major story involving this disease.
There have been a couple of pieces over the past few weeks that did apparently make the print edition. One or two had a tone that some of us might have interpreted as being slightly less friendly as previous pieces. Personally, I don't think Amy or any other journalist can really be our 'friend.' I do think any fair-minded person who understands the issues is going to view our overall situation--especially in Europe--as something that is cut-and-dried, a major story of neglect, abuse, crimes against humanity. But it's not easy to report on, and I'm not sure it's realistic to expect that we're going to like every piece they write.
Some of the pieces that David Tuller has written would bear this out, I believe. Remember that great piece he wrote in January? That was fantastic. But then a lot of people had problems with what he wrote when the PACE paper was published. Understandably so--to an extent. But then more recently he followed up with a piece that examined the issue of differences in cohorts in this disease. This was not strong enough for some, but to me it took a rare look at a major issue in this disease. And an accurate one. A necessary one, long overdue. Because, with all due sympathy for those who are 'chronically fatigued,' for whatever reason, that's a million miles from the disease as I know and live it.
Now, in the past, the NY Times had someone named Lawrence Altman, who was either a reporter, editor, perhaps both. I don't know. I have read a rumor that he had some sort of connection to the NIH--back in the Straus days. As I woke up with this disease one day in late 1999, this had not really been on my radar previously. I read of this rumor on Dan Moricoli's excellent CFS Knowledge Center site a year or two ago. I can't verify it. I do believe, however, that Hillary Johnson has alluded to this fairly recently in one of her blogs on Osler's Web (a site I could not recommend more strongly, if you are reading this and are not familiar with it). I don't believe Altman's name was mentioned by Hillary, but she did offer, optimistically, that the oft-repeated exercise of reaching out to Straus for comment in the Times' coverage back in the bad old days seems to have changed for the better in these days. Which in some ways are perhaps not quite as bad...collectively, for us as a patient population, certainly...but, for individual patients, particularly overseas, unfortunately, that's just plain wishful thinking, as they continue to be left to rot.
I once spoke with someone about ME/CFS who had some knowledge of how the Health section staff at the NY Times viewed CFS: "It's all in your head," he paraphrased, with a shrug of his shoulders. Well, that was some time ago, and I don't think David Tuller sees it that way, that's for sure. I think that comes through in his pieces even if they don't satisfy everyone all of the time. I'd like to think he would write what we want to read, consistently, but just as we battle inaccurate, discriminatory, abusive stereotypes and judgments, along with a healthy dollup of scorn, changing people's minds about something they think they know based on the 'evidence' supplied to them by 'experts' can be a challenge. (Quite a few of the comments left on his piece on the PACE Trial bear that out, reading as though it was the 'yuppie flu' 1980s all over again) I have to say I believe that, in the journalistic realm where there really shouldn't be 'sides...' that he is interested in presenting the evidence that proves all of the old wisdom about this disease to be wrong. Wrong, wrong, wrong. So in that sense, I do think he is on our 'side,' even if, for practical purposes, he really can't be.
The coverage we've gotten from Amy Dockser-Marcus and David Tuller over the past year or two is coverage I really never thought I'd see. Has it been completely satisfying? Perhaps not, but, boy, what a difference, especially in contrast to what's come before, and what is still presented in UK publications like the Guardian and the Independent. I don't see this is as a small victory; I am glad for this coverage even if I won't like every piece published; and while I take Mindy Kitei's recent piece calling for us to not accept 'crumbs' very seriously, I think overall this is far better than 'crumbs,' and if we're presented with a crumb...well, some are worth considering. Others aren't. But from these journalists, I do believe we have seen fairness, for us, and the readership of, excepting possibly the Washington Post, the two most-respected and prominent daily newspapers in the country.
Then there's Trine Tsouderos and her coverage over the past year or so.
Now...I am going to do my best to approach this as fairly as possible. No cracks from me about some of the other subjects she has written about. Not that I wouldn't like to bring that up, but it cheapens the argument I am interested in making. What's relevant is what she does now.
When it comes to ME/CFS and XMRV, I do not believe what she does is fair.
A year ago at this time, we had seen three studies published in a short period of time that produced results at odds with Lombardi et al. This has been discussed, hashed over, regurgitated. I did an interview with Dr. Enlander where we touched on some of this.
Briefly, the first study was done on samples provided by Simon Wessely and presented to PloS One seven weeks after the publication of Lombardi et al. The press coverage said much about the negative result, but not much about the haste with which this study was completed and published, or the difference in cohort.
The second study was supposed to have more than 100 samples sent by Dr. Enlander to the since-fired (??? why?) Jonathan Kerr (they were indeed sent). Some of you reading this know that few if any of these samples were tested; that they were not included in the published study; and that Kerr's co-author on Groom et al, Jonathan Stoye, hemmed and hawed when questioned by the Patient Advocate on this matter at the FDA's Blood Products Advisory Committee meeting back in December (more on that later). At that time it had been two or three weeks since Stoye had received an email from Dr. Enlander inquiring as to what had happened to the samples, which cost a considerable amount to ship overseas.
Stoye eventually responded to Dr. Enlander; after about five or six weeks, he could only say he did not know what had happened to those samples.
Since my blood was among those samples, I am gratified Dr. Stoye found the time to respond to a doctor who just happens to be a member of the Royal Society of Medicine. But I doubt he knows how difficult it can be to draw blood from some ME/CFS patients (fortunately for me, I do not fall into this category).
Following this study came the one published in the BMJ. The less said about this the better. Clearly this had become a mess, at least in public. Adversarial, if not angry, words, were exchanged between scientists who obviously do not agree. Lost in all of this was that none of these studies studied the same patient cohort as Lombardi et al. I have always focused on this. Others examine methodology, but as a layman I avoid that. As a patient, I know that there is often a significant overlap between the Fukuda Criteria for CFS and the Canadian Consensus Criteria for ME/CFS--everyone in the Science study qualified for a diagnosis with both.
I also know that Fukuda is flawed--and, depending on how it's applied, it can be very flawed. Is the Canadian Consensus Criteria perfect? Probably not, but it describes the disease I have so much more specifically and accurately that it's beyond unbelievable that it is roundly ignored by CDC--and, it follows, medical science--in favor of a list of symptoms that are largely subjective and can identify patients who, in my considered opinion, may well not even suffer from the disease that the term 'Chronic Fatigue Syndrome' was dubiously coined to describe. That this was unnecessary given the already-existing, documented, infectious disease Myalgic Encephalomyelitis leads one to wonder why we ended up cursed with this bullsh*t name, but that's another story entirely. Fatigue? More like paralysis, which might sound like an exaggeration, but only slightly.
Yes, I'm serious.
It's amazing to me that researchers and journalists chose not to explore this key difference. Aren't scientists and journalists supposed to care about what they write about? Care enough to actually research the subject? To understand how significant the differences can be between a Fukuda cohort--never mind Oxford or CDC Empirical--and a cohort defined by the CCC?
Well, either they--generally speaking--either they generally didn't know, and didn't care enough to find out, or they decided this cohort difference wasn't worth spending much time on. Perhaps a sentence here or there. Little else. Pretty much across the board in the coverage of the 3 papers that came out a year ago, which were mostly covered by the UK press.
It was in that climate, that mess, that an odd piece appeared here or there covering what was now a controversy I believe some might describe as noisy.
And on April 9th, 2010, a piece appeared in the Chicago Tribune that caught my eye. Yes, it was because I have a Google alert for "XMRV." It was a piece by Trine Tsouderos on Dr. Oz. You know, that guy with the TV show.
Have you ever watched that show?
If you take it seriously, please stop reading, now. You're on the wrong blog.
I'm not a fan.
But...there was this one thing that had stuck out some months before.
Dr. Oz did a segment on Chronic Fatigue Syndrome. It came out not long after the publication of Lombardi et al, but it had been taped well before.
Dr. Oz's expert guest was Dr. Jacob Teitelbaum.
If you believe Dr. Teitelbaum is a qualified representative to speak for this disease, to speak on symptoms and treatments, then stop reading, now. You're on the wrong blog.
No disrespect intended in either case.
Now, I don't think Dr. Oz is a fool (businessman first, entertainer second, physician third, perhaps, but no fool); and if I recall there was a patient outcry that brought it to his attention that in the wake of the publication of Lombardi et al, having run an episode with Teitelbaum, with all that entailed, didn't necessarily look so great. So he did another episode in which XMRV would be covered, and he booked another, far more competent guest: Dr. Donnica Moore.
The segment ran in December 2009. I thought it was a decent segment, all things considered. Perfect? No, but what is? Certainly better than the other guy & how he presents CFS. And, in spite of what I might think of his program, kudos to Dr. Oz for covering this story. Seriously.
Now, Dr. Oz is, shall we say, controversial. I suppose some would say--well, actually, they do--that he dabbles in areas of medicine that are speculative, or perhaps downright quacky. There's an expression used among a group of medical professionals who, for instance, doubt the efficacy of homeopathy: "woo." This term appears on countless medical blogs on a daily basis.
I have no problem with this. I think it's healthy to question that which may be questionable--although I will add that I don't embrace 'skepticism' because while healthy skepticism is great, necessary, even, unhealthy skepticism...well, I've seen more of that in the past year or so to last me a lifetime. Now, these sorts of blogs often cover topics in ways that tend to lead to responses from those who disagree, some of whom rant about, among other things...'Big Pharma.' Now...do those people have a point? I can't really say. Certainly "Big Pharma" is not without its warts, some of which are considerable.
On the other hand, I have seen the zeal to nail this enormous corporate monster misused, and misused badly. Based on my limited perusal of the Huffington Post, this seems to be a common theme. There's also some guy who calls himself the "Health Ranger." And then, some years back, Dateline did what I would describe as a hit piece on a medication that makes my life so much more bearable than it was before I took it that I can't even put it into words. They presented Neurontin as a dangerous drug that should be withdrawn, in a class with stuff like fen-phen (having had Steven Lamm as my GP when I first got sick, I would say, absolutely, that he is a physician in love with 'pharma' who used me as something of a guinea pig, while pronouncing me 'depressed,' which I suppose was why he sent me to a psychiatrist--who I saw with no trepidation whatsoever, and, since it was clear her office was not where I belonged, he never raised the subject again), Vioxx, etc. Their presentation was a cheesy ripoff of 60 Minutes, cheesy as hell, and I have never forgotten it.
So if your agenda is 'Big Pharma is bad, etc., then you are probably reading the wrong blog--and not just because, as Mary Schweitzer observed when Lombardi et al was published, it would likely be 'Big Pharma' that would work to provide a tangible solution for our struggle with this awful disease.
That said, some of the behavior I see displayed on some of these blogs--by doctors? Scientists?--reminds me of schoolyard bullies.
Whatever.
Dr. Oz covered XMRV, while many prominent doctors with public appeal, blogs, etc., did not. Actually, I'm pretty sure he was the only guy who did so. I didn't see the medical consultant experts on local tv channels cover it, I didn't see it on CNN. I didn't see guys like Andrew Weil or Gary Null covering it either. That hardly means it did not happen, but there are more than a few of us who, understandably, I hope, take an interest in this sort of thing. Such coverage would have been on YouTube in short order, but it wasn't. So I strongly suspect it just didn't really make tv, at least outside of Nevada.
The evidence that much that is presented on Dr. Oz is medically questionable is probably considerable, for many in the mainstream of both journalism and medicine. Some would swear by him, or others like him, and that's fine--who could argue with that? If something like homeopathy works because of a placebo effect, how much do 'claims' matter if results are achieved? And it's not like everything he covers is complete nonsense, I don't think, although, take my word for it, I don't pay attention. My take is that the Oprah-groomed Dr. Oz presents a lifestyle program that is framed within the context of medicine. If controversial guests are the norm and not the exception, I'd be surprised. But, he has had his share of controversial guests.
So this piece appears on April 9th, nearly a year ago as of this writing, and I'm reading it & wondering if the one 10-minute segment he did on XMRV is going to make it in the piece.
It made it in the piece.
It was nearly a quarter of a somewhat lengthy piece. Maybe a quarter, maybe a smidgen more. But, forget quantity...what was reported?
The relevant portion begins:
"In December an episode focused on chronic fatigue syndrome, a mysterious ailment scientists know little about. The journal Science had recently published a study reporting on evidence of a retrovirus called XMRV in about two-thirds of patients diagnosed with the syndrome.
"The show started with a dramatic introduction — "Today on the Dr. Oz show: Could the secret to your exhaustion be a retrovirus?" — and featured a discussion between Oz and Dr. Donnica Moore, a women's health specialist.
"For the first time, we can say with confidence: We know this is not all in your head, we know this is not depression, and we know you don't have a midlife energy crisis," Moore said. "What we do know is that this is a serious, potentially debilitating neuro-immune disease that has an infectious component.""
Okay. What's the problem here? Is this irresponsible on the part of Oz or Dr. Moore?
"That kind of certainty is rarely justifiable weeks after publication of a paper."
What certainty? What certainty relevant to the paper?
Have there not been well-documented outbreaks HEAVILY SUGGESTING an infectious component for DECADES? In Los Angeles in 1934? Punta Gorda in 1958? Incline Village in 1984? Iceland in 1949? Royal Free Hospital in 1955?
Countless more? Who needs to see a complete list? I'm only omitting more than 50!
http://www.cfsuntied.com/history.html
Is there a problem with the certainty that 'it is not all in your head?'
Had Trine Tsouderos made herself familiar with the measurable physical characteristics of the Canadian Consensus-defined patient cohort in the Science study?
I'd love to see a case that CCC-defined ME/CFS is 'all in your head.' All those papers that Wessely & his goons have written? Check the cohort, check the criteria.
You show me one paper those Mengele-esque ghouls have EVER written on CCC-defined ME/CFS, let alone the 25%, "Severe ME" group of neglected, abused, tortured souls.
One.
Let them suggest that THOSE people are suffering from a functional somatic syndrome.
But, heck. Go and research CCC-defined ME/CFS and depression...or a mid-life crisis...or the sort of "CDC-defined CFS" that is, legitimately, a problem, sometimes a serious problem, that affects a lot of people...but is the "flavor" of "CFS" that people like Dr. Teitelbaum are actually speaking to, and about.
Now, I haven't gone back & looked at the Dr. Oz show on YouTube. I wonder. Did Dr. Moore say XMRV caused CFS? I don't remember her doing so. If she did, she probably should have phrased it differently--but if it were there, why would that quote not make it into the piece?
In other words, given Tsouderos' criticism...what exactly is it she's criticizing?
And on what basis?
Gee, maybe I should go a little softer. Maybe I'm the one not being 'fair' to Trine Tsouderos.
With all due respect...f*ck that. Is it wrong of me to take something like this apart piece by piece? I did ask myself this question.
No way.
Comments were presented by Professor Vincent Racaniello stating that it was irresponsible to conclude that XMRV causes CFS.
Okay, so who made that conclusion, and where, and, if so, why was it not specified and quoted in the piece?
"Moore also told Oz's audience that the virus was not contagious by air but may be by blood, that 10 million people may be infected and that a $400 commercial blood test is available to detect XMRV."
Probably true, possibly true, possibly true, definitely true. Now, what's controversial here?
10 million Americans may be infected?
In the subsequent pieces on XMRV written by Trine Tsouderos, I have seen last year's Lo et al study, the Harvey Alter paper that found something very, very, very like the retrovirus in the Science paper, mentioned, although, curiously, not by name. But since it wasn't identical--I believe I read they shared approximately 96% similarity--well, that's not XMRV, then, is it.
Trine Tsouderos never covered that paper, or anything having to do with the authors--to this day.
That study was likely in no small part undertaken because Lombardi et al found XMRV in 3.7% of healthy controls. Or was it 3.4%? I don't remember. Call it three and a half percent.
Three and a half percent of 300 million is...what?
Racianello was further quoted for context, offering all of the predictably cautious notes. Which is fine, of course. I enjoy and respect Professor Racaniello, his site, and his podcast (with the exception of one of his regular panelists), even if I'm not sure his approach to this story is sufficiently broad; in other words, he surely knows the virology, but I don't think he knows Chronic Fatigue Syndrome. Unlike others, however, he's pretty honest about it, and I think he recognizes that CFS presents unique difficulties to covering this issue--and I believe he's been pretty fair in his coverage.
What's not fine? How about that "$400 test?"
Does no once care that only WPI has been criticized for this test when Cooperative Diagnostics offered it first? Yes, they withdrew it last April. But, someone, please, show me something criticizing them for offering it. Anywhere. No, patient forums don't count.
No, only WPI deserved that criticism. And, heck, why would anyone want one of those tests done, anyway? I mean, it's not like it means anything, right?
Right--so the issue of people who are almost indescribably sick who have dealt with decades of scorn, disbelief, baseless accusations, neglect, and abuse, who might just gain some personal vindication from knowing they tested positive for a very serious virus...um...bad.
CBT--good. That (to be fair, not mentioned, to my knowledge, by Trine Tsoudeeros) makes people feel better about this disease! But shame on WPI for 'profiting' off of actually showing people something in the way of evidence of a very serious infection. Bad.
Where was I? In the Tribune piece, Dr. Moore states that the qualifying statements she offered were edited out.
Trine Tsouderos has never bothered mentioning that in Lo et al, the very-XMRV-like-retrovirus-that-we-can't-call-XMRV-because-it's-not-XMRV-therefore-it-doesn't-support-Judy-Mikovits'-XMRV/ME-CFS hypothesis-because-it's-not-XMRV-so-that-means-it-somehow-actually-disproves-that-hypothesis, that 6.8% of healthy controls were found to be infected with these XMRV-like viruses (classified as...ah, this is an alphabet soup. Better explained elsewhere)...and that those controls were blood donors.
Using XMRV as a stick to beat Dr. Oz...that, apparently, is just fine.
Come on. This is the Dr. Oz show. Were there no better devices with which to slam this clown? Nothing more relevant or substantial to illustrate the perfectly obvious about this lifestyle program? Good grief.
No--he should be nailed...and a quarter of the piece should be about this XMRV stuff. Yeah.
Well...it needs to be mentioned that, obviously, nobody knows how much editorial input played a role in this, and that it's possible that Trine Tsouderos wasn't the one who thought that XMRV should have been a key component in making Dr. Oz look bad.
But...then she kept writing about XMRV.
I tried to write a response here, but it kept limiting my character count but would not tell me along the way. So I will reply with my own blog post but here's some of the important words covered~ XMRV, vaccines, MECFS, contaminant, Research Funding, Accurate Ethical Journalism.
ReplyDeleteAnd Bravo well done.. look forward to your to be continued.. I agree, send this to Amy ;)
http://standup2me.blogspot.com
Bless you for this, Jay. This needed to be done, and you've done it to the nth degree. (And you're just getting started!) Bravo.
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