Conspiracy or Confusion?

July 8, 2010

Posted by Cort Johnson

Hillary Johnson has just posted a long blog that provides alot of backup information on the controversies over the last couple of weeks. According to one of her resources the directors of the NIAID and the NIH as well as administrators at the CDC, were all involved in the withdrawal of the Alter paper. She reports that the primary investigator at the FDA was Shyh-Ching Lo and that the paper was near enough to publication for a galley proof to have been sent to the editor’s office.

Interestingly the Alter paper was not a surprise to the CDC at all; three months ago they had briefed the CDC extensively about the study and it’s outcome. The CDC, on the other hand, kept the outcome of their study close to their vest leaving the Alter researchers greatly surprised when it came out.

The biggest question right now concerns the results of the testing the CDC did on the XMRV samples from the WPI. Hillary reports that Dr. Switzer proposed a collaboration between Dr. Mikovits, Illa Singh at the University of Utah and the CD and that Dr. Mikovits sent samples to both Dr. Singh and the CDC. Dr. Singh was able to identify XMRV positive samples while the CDC did not. (Whether that, in fact, happened, doesn’t appear to be a question any longer; it now seems clear that the CDC was unable to identify XMRV positives in the WPI sample set). If the effort was truly a collaboration that we must assume that both the WPI and Dr. Singh are aware of the CDC’s findings.

Conspiracy? So what is going on? The events of the past couple of weeks were also cast as simply the latest evidence of an ongoing conspiracy to save face by upper-level bureaucrats that is doomed to fail. Dr. Fauci, Hillary believes, lacks the ‘ethical compass’ to do anything more than to worry about his reputation. If saving his reputation means condemning millions of CFS patients to a disabling infection so be it. She acknowledges that respected researchers like Dr. Alter will not be swayed by internal pressure and that the truth will come eventually out. With the withdrawl of the Alter paper, and the coverup of the CDC’s inability to find XMRV samples in the WPI’s samples, the CDC and NIH are simply playing a delaying game that they are doomed to lose.

Or Confusion? – Only time will tell, of course, but the conspiracy theory has some holes, the biggest of which is – why engage in a conspiracy that is doomed to failure? If the truth is going to come out – and with all the researchers working on this pathogen – it does appear that it is going to come out, then why suppress evidence now that will come out later, and in doing so leave you looking a) culpable and b) incompetent? Why not simply jump on the bandwagon and save your own personal reputation and reputation of your institution?

Another question concerns motive; if you’re going to engage in an activity that, if exposed, could damage or ruin your career, you’re probably going to have a darn good motive for doing so. It’s clear that no one in the federal government has done well by CFS patients…they have ignored this disease, they have not funded it, they have not chased down promising leads….their history is a decidedly ugly one and they have alot to make up for. But covering up a legitimate finding is another story indeed – particularly if it involves more than CFS patients. The 600,000 or so possibly infected CFS patients have probably never been the main issue for the feds, the big issue has been the 10 million or more Americans potentially infected with this pathogen and any conspiracy theory must take that into account. Are senior officials at the NIH and CDC willing to cover up evidence of XMRV in the healthy population simply as a means of getting at CFS patients? That seems very unlikely.

Then there’s the face saving question. There is going undoubtedly going to be egg on the faces of many Federal officials, and hopefully they will be held to account when the cause or causes of CFS are validated but. of all the possible factors, XMRV provides a great escape hatch for them, the likes of which they will probably never see again. XMRV was, of course,  only discovered a few years ago; more importantly, it was discovered using a kind of technology that only became available a few years ago. Sure it’s possible that if researchers had looked really hard at CFS samples for pathogens they could have found it but XMRV didn’t show up even in the one group that did look really hard for pathogens – the WPI. In some ways XMRV presents a great opportunity for the federal research community to squiggle out of its decades denial of CFS with at least some of its face intact.

Putting Stakes in the Sand -  Instead of the broad ranging conspiracy theory to keep CFS patients down a more likely explanation for the events that have taken place is that everybody thinks they are correct. In this scenario the CDC tests the WPI samples, is unable to find XMRV in them, believes it knows why and then proceeds to put its stake in the sand by publishing it’s paper. (In this scenario the CDC believes it can find XMRV and that XMRV is actually not present in the WPI samples! (How does that happen?))

This is a tough issue; it lends itself to conspiracy theories…if you believe that the truth will come out in the end there doesn’t appear to be a logical reason to try to cover something up; in this game the goal is not to pretend to be right but to actually be right.

Dr. Alter and Dr. Lo test the WPI samples, do find XMRV in them and proceed to at least try to publish their work. Yes, that work is withheld due to political pressures but no one doubts that, pending the results of more testing, it will not come out and we will know what they found. Dr. Singh also finds XMRV in her set of samples and begins her own study, the results of which we don’t know yet.

That paper will come out as well as will the work of the DHHS study overseen by Dr. Mikovits, the WPI’s UK study, the Montoya-Columbia study, the Swedish study, the just funded Hanson-Bell study… and work by Abbot Labs and Glaxo-Smith Kline and other labs who have a big financial stake in proving that XMRV exists….At the end we will know who was right and who was wrong and we should know why. (My guess is that the answer will be such a surprising one that no one will be overly embarrassed.)

A Different World - This isn’t 1993; this is not a youngish researcher vs the CDC – there are real heavy-weights involved on both sides.  This is Dr. Ruscetti at the NCI, Dr. Silverman at the Cleveland Clinic and Dr. Alter at the NIH vs the CDC. My guess is that there are simply too many good researchers involved in studying XMRV for the truth not to come out. The CDC has drawn it’s line in the sand – it believes it has the goods on XMRV; the WPI and the other researchers have drawn theirs – they believe they have the goods on the virus; we will see in the end who prevails.

12 comments

{ 12 comments… read them below or add one }

Sue Jackson July 8, 2010 at 4:44 pm

Ah, Cort, the voice of reason, as always. I’ve been on vacation for 3 weeks and totally out of touch, trying to catch up. Your summary here helped.

I agree – both sides think they’re right, simple as that.

I grow impatient with the talk of conspiracies. I understand why they come out – people with CFS are angry and impatient, with good reason. But for me personally, all that anger just makes me sicker. It’s hard to wait, but that’s just the way the scientific world works and for good reason. Things would be a lot more dangerous if people could act on every new bit of research without due process to confirm results.

I agree that the truth will come out. Thanks once again for your consistently accurate, unbiased reporting. It’s really helpful to those of us who don’t have the time or energy to sort through it all!

Sue

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Cort July 8, 2010 at 4:51 pm

Thanks Sue. It is tough to wait. If this last eight months demonstrates anything it demonstrates that the scientific community is on its own time – not our time for sure. Anger is inevitable but I agree, its hard on the body….It’ll e nice when we have a reason to be happy – how much stress that will reduce!

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michael July 8, 2010 at 11:01 pm

Cort — Good discussion. I agree, this time there are too many heavy weights involved to keep the lid on. But on the subject of ‘conspiracies’ I will retell a story I’ve never forgotten:

I became ill with ME/CFS in 1991 while living in NYC. In early 1992, I went to see a friend’s doctor. This doc was an HIV researcher who had a small clinical practice. I was desperately looking for hope, answers. I told him my story and he replied that while he was not an expert in CFS I’d made the best case he’d ever heard of having it. He promised that over the next week he’d call his research pals in virology around the country to learn what they were doing and thinking. The next week he tells me that everyone had the same answer: “The government is actively suppressing research into CFS” . . . I am not the paranoid type and was pretty shocked. “Why?” I asked. Oh that’s easy, he replied. Money. The government doesn’t want an expensive new disease. Do you think they wanted to spend all this money on AIDS? he asked me. No. But people were dying horrifically in public so they had no choice. CFS is easy to sweep under the carpet, he said: The symptoms are invisible, there’s no diagnostic marker, the majority of cases are women, and no one is dying of it . . . That was in early 1992. This is a true story. Later, after I moved to the west coast, I met another HIV researcher at SF General. I asked him what they thought about it at his lab. He gave me a horrified look. “Oh,” he said, “Applying for a grant in CFS is known as a career killer.” And as he was young, he clearly still wanted a career.

My point is that sometimes evil conspiracies are very banal and ordinary. Not a group of evil white guys coming up with a scheme in a back room. But a gentlemans agreement in the higher levels of the NIH that if this can be avoided for a while, that would be best. Maybe we’ll get to it later. And the years go by. The decades go by. It’s still easy to avoid and conveniently an idiot such as Bill Reeves is in charge of CFS at the CDC and becomes the lightning rod . . . I think Hillary’s point in her recent blog is that she respects Anthony Fauci’s intelligence. He’s a very smart guy. Too smart not to know how damn serious CFS has been for twenty plus years. He knows how bureaucracies work and so it’s kick the ball down the field and delay . . . the banality of evil as Hannah Ahrendt once wrote . . . Now the shit is hitting the fan and they need more time to cover their butts on this — one can only hope . . . I’ve been severely ill for 18 years and won’t live forever to find out how this all ends, michael

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chris July 9, 2010 at 5:44 am

Cort,

I understand that we live in an Age of Conspiracy. However this situation with the CDC and other government agencies relative to XMRV is not a conspiracy. It is real. It is important to be clear on this.

Jonathan Kerr, in the UK, has been muscled out of a relation with the WPI. Here is the U.S. the same situation is going on with scientists associated with the WPI and its discovery of XMRV. It is easy to conclude that other scientists are being told to distance themselves from the WPI, that the WPI is going to be “taken out”. There is ample evidence from the past that this behavior is endemic to the CDC and other government agencies relative to CFS/ME. The CDC does not want a retrovirus attached to CFS/ME. This is not a conspiracy. This is fact. Pressure is the only thing that will get the CDC to act differently. We will see what happens, but it is a big mistake to mischaracterize our enemy, and to characterize this situation the way that you do.

Chris

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Cort July 9, 2010 at 7:03 am

I agree with the perception is that CFS is a career killer, I couldn’t agree more. The kind of ‘conspiracy’ that I think is present is the group think that says that CFS is not important, CFS doesn’t deserve the money needed to study; the kind of background thinking that leads to this disorder being underfunded year after year after year. I don’t know if you’d call it an active conspiracy – no need to do that; it’s more on the lines, I would think, of a general belief that pervades many people in the research community; that is the ‘banality of evil’ that has hurt so for so long.

That includes what Chris suggests – that the WPI is being cut out – I think that’s pretty clear but that is a different issue from the specific issue I was referring to. I think Bill Reeves, a very small figure who used to run a very, very small mostly marginalized CFS program at the CDC – doesn’t want a retrovirus attached to ME/CFS but I think Bill Reeves has or had very little sway at the CDC outside of CFS.

I think HIV/AIDS division, surely a much more powerful force in the agency, would love to have the third infectious human retrovirus on their plate to work with…..if they don’t find it in CFS then they’d be happy to find it in healthy controls.

It’s very possible, though, that the CDC never thought they would find a retrovirus in CFS and have not given it their full attention. It would be interesting to see what hierarchy of staff they put on XMRV; did they put their top retrovirologists on it or lesser figures? I think these are probably lesser figure but I’m not sure. Not putting your full attention on a virus is different, though, from covering up information. It’s the first that I think is endemic in CFS and it’s possible that that did happen with the CDC here to some extent.

The main slant of the piece, though, is my belief that there is too much light on this issue for anyone to gain anything from ‘covering up’ information or from distorting findings; those kind of shenanigans I think will come back to haunt anyone that tries to do them. I think this bug will get enough attention for the research community to figure what’s going on – and if that’s true, the best option is to be right and the CDC really thinks they’re right and so does the WPI and we’ll see in the end who is.

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chris July 9, 2010 at 7:18 am

Cort,

With your explanation, you should be able to go on and tell me what is going to happen next. I am not so sure myself where this is all going. Games like this have uncertain outcomes.

It is a serious matter to withhold a paper and then clam up. It doesn’t point in a good direction. I sat next to a CFS doctor in London when he said that he “had never seen anything like it” – referring to Huber’s sandbagging. I know that Alter also “has never seen anything like it”. There is intention here – and it is not directed towards the general good in the CFS/ME world.

Chris

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Helle July 9, 2010 at 10:03 am

Well spoken, Chris !

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Allyson July 9, 2010 at 3:37 pm

…if you believe that the truth will come out in the end there doesn’t appear to be a logical reason to try to cover something up; in this game the goal is not to pretend to be right but to actually be right. -Cort

If criminals were rational they wouldn’t be committing crimes.

The notion of “Conspiracy” does not equal Nut Ball. Let’s not act like it does.
FEAR of sounding like said Nut Ball is not a good enough reason to silence a reasonable concern. We certainly have that through precedence. Is there “banal” evil? This is a question for the ages, isn’t it? The lives of the sick and suffering weighed against, “not knowing” , “trying not to find”, “waiting awhile” , or expediency? Banal? My vote is it’s unconscionable and it is their job to know, act when they know, and to do the conscionable thing. And I believe that it is evil to have so much power and fail so miserably to use it well. Call me crazy.

Current group-think is: having an allergy to the notion of “Conspiracy”.
Propaganda about “Conspiracy” theorists has led to said group-think.
Who is perpetuating the propaganda? Anyone who thinks all conspiracy theory, or theorists, are nut balls, unsophisticated thinkers, hysterical, and/or may be off their meds. The evil count on your allergy. An interesting book that discusses some of this is by a respected philosopher, and one of my old professors Mark B. Woodhouse, “Paradigm Wars: World Views For A New Age”.

Nevertheless, well done Cort. Your generosity in describing the possibilities is like-ably consistent and thought provoking. And I believe truth, love, and justice will out. Always. Not so incidentally it has been my Life-long work that I comfort the afflicted and afflict the comfortable. It can be frighting and profoundly amazing where people land in this, my paradigm.

Blessings for our health.
Thanksgiving for our progress.
Prayers for the suffering.
Hope that my post is coherent.

Rev. Allyson Day

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Cort July 9, 2010 at 3:53 pm

Chris I can say what I think will happen. My argument is based on the players acting rationally – which as Allyson pointed out may not happen.

However, this is what I think is going to happen. Harvey Alter is going to do his tests and then he’s going to release his paper and he’s going to explain how (if at all) it is different from the original. If you check out Harvey Alter’s resume you’ll see that he’s won what is called the Nobel prize of medicine (the Lasker prize). He has over 200 citations to his name in Pubmed. This is not some little researcher that you can shut up or is going to ‘roll over’. This is an acclaimed scientist that has a reputation to protect and he’s going to do his best to protect it.

The CDC withdrew their paper, did the tests the DHHS wanted them to do, and then published. Harvey Alter has withdrawn his paper, he’s doing his tests and then he’ll publish.

I dont’ think you can push XMRV under the rug the way you can CFS. The fact that someone like Harvey Alter is involved in itself suggests that. This is a different era right now. CFS researchers are usually nobodies, relatively speaking, in the research world. Now we’re dealing with people who are ‘somebodies’ – people with long established careers. The fact that we’re also possibly talking about 10 million or more Americans and the blood supply makes a big difference as well.

We’ll see how it goes. Will Alter’s findings stand up? If not will he be able to explain what went wrong? I hope that we don’t have to worry about that but we’ll see.

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chris July 9, 2010 at 6:55 pm

Cort,

Thanks for all your comments.
Ultimately all of this makes little difference – as long as it works out in the end.
I sense (or am aware of) a more macabre scenario than you, with much malice, jealousy and back-biting. I think these are not logical and rational arguments and disputations but a contestation of forces, good and evil – with the good guys winning. In the long run it does not make that much difference. This XMRV study is going to be confirmed one way or another. It would be nice if the government were behind it, and if the confirmation came soon, so that we could get on with the important potential issues, about which we currently know nothing.

Chris

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Cort July 9, 2010 at 7:00 pm

I certainly hope that my more optimistic view of the research is accurate – it would make things so much easier, and would mean that the post-XMRV world – the one in which XMRV is validated – will go so much smoother.

Of course, I am a couch potato here, sitting far from the halls of power, and knowing absolutely nothing about what occurs in them – so its all conjecture….I could be dangerously naive…..only time will tell.

I really do think we will have good news about XMRV. I think in the long run the CDC study will make little impact and the XMRV story will go on and on :)

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John July 22, 2010 at 9:22 pm

The funniest thing to me about the XMRV conspiracy theory is how it would have had to have started three years before the WPI published their XMRV/CFS paper, because ever since the original XMRV/prostate cancer study was published in ’06 there have been groups which found an association and groups which didn’t find crap.

Also it would have to encompass basically the entire scientific research establishment, since apparently no one can figure out exactly how or why the discrepant studies get the results they do- not peer reviewers, not other scientists, not journalists, not researchers, not clinicians, not journal editors, not prostate cancer researchers, not CFS researchers, not retrovirologists with decades of experience, no one. There’s a lot of hemming and hawing, but no one knows exactly where the kink in the system is. All this dark hand bullshit is exactly that, bullshit.

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