How Research into Chronic Fatigue Syndrome Turned into an Ugly Fight

24 Jul

Judy Mikovits is a researcher who, in recent years, has focused on chronic fatigue syndrome. In her work she published a paper potentially linking chronic fatigue syndrome to XMRV (Xenotropic murine leukemia virus-related virus). In her unpublished work, her team discussed the possibility that autism was also linked somehow to XMRV.

There has been much drama involving Judy Mikovits, her research and her former institution (the Whittemore Peterson Institute) over the last year.

The Daily Beast has an interview with Judy Mikovits. The first since the legal issues arose last year. How Research into Chronic Fatigue Syndrome Turned into an Ugly Fight. The interview gives her side of the story in much of the events. One can read them at the Daily Beast, but I’ll focus on this section here as it applies to the science involved:

Meanwhile, other research groups around the country were trying to replicate the 2009 results, but in the two years that followed, almost all had failed. The word “contamination” began to surface more and more frequently.

In the summer of 2011, Mikovits and her young lab assistant, Max Pfost, began poring through their notebooks, trying to find where such a contaminant might have entered their process.

In July, she says, she found it—an entry from March 2009 indicating that a culture of the XMRV virus had been placed into the same ice chest with the rest of the lab’s blood samples. Mikovits says she was out of town the day this occurred.

To this reader, this is a sign that the upcoming multi-center attempt to replicate the XMRV/chronic-fatigue-syndrome work is going to come out negative (like the multiple other XMRV/CFS studies published so far trying to replicate her work). There was contamination in her lab’s process.

This does not speak directly to the XMRV/autism work, but two papers have:

Lack of Infection with XMRV or Other MLV-Related Viruses in Blood, Post-Mortem Brains and Paternal Gametes of Autistic Individuals

PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism.

So, we have an unpublished result supposedly linking autism with XMRV from a laboratory where the principle investigator is telling us there was a contamination issue and two papers saying there is no detectable link?

While I doubt the XMRV/autism story will die out completely, it strikes this observer that it’s time to look elsewhere for answers.

25 Responses to “How Research into Chronic Fatigue Syndrome Turned into an Ugly Fight”

  1. Abby July 24, 2012 at 22:40 #

    If she knew the presence of 22rv1 contamination last year, why did she not disclose it the the scientific community? This is complete unfair and unacceptable. Sorry to say, each and every scientist JUST HATE THIS HIDE AND SEEK GAME.

    • Sullivan July 25, 2012 at 00:17 #

      Per the story, she disclosed it to her institute

      In July 2011 she told Harvey Whittemore of the potential contamination, she says, and expected that the VIP Dx lab would cease testing patients for the XMRV virus. “I just kept saying, stop it, stop it, stop it. We have to sort this out,” Mikovits says. According to Mikovits, the testing did not stop. And after a tense summer, she was fired in September.

      But I don’t see a mention of alerting the community at large.

      • K Hedges July 25, 2012 at 06:44 #

        This is the first I’ve heard that Mitkovits admitted there was contamination, and I’ve been following the story for a while. All I kept hearing about was that she was basically putting her fingers in her ears going la-la-la while other labs said her results were irreproducible. Not only that, but the results were so improbable that it had been irresponsible not to assume it was contamination.

        You know, like AW and his measles virus in the gut.

      • Jack July 25, 2012 at 21:41 #

        Indeed. And informing Harvey Whittemore seems bizarre. Why not Annette? Or those running VIPdx? Or especially, as you said, the community at large? Given the incriminations facing Harvey at present, it read like a desperate attempt to add to his woes, implying, what, a cover-up? With Mikovits being some sort of ‘white knight’ fleeing with the evidence, defying the law, to bring the ‘truth’ to light, whist the WPI proceed to not only fire her but also bringing charges that effectively gagged her. Only the ‘truth’ didn’t come to light and if this is ‘it’ it’s pathetic.

    • nskeptic July 25, 2012 at 14:32 #

      Absolutely right. And her claim about the XMRV culture being in the same icebox as “the rest of the lab’s blood samples” in 2008 is odd anyway –

      1) Why would it have contaminated the patient samples more than the controls? Were only the patients in that icebox? If so that’s pretty dodgy in itself.

      2) Her story, if true, explains why the original 2009 paper found false positive results. But why the failure of the WPI to properly detect XMRV in a double blind study that didn’t even start until after 2009? The WPI lab sometimes failed to detect XMRV in positive controls spiked with the virus, something that other labs were able to do perfectly, and they also made false positives, which other labs never did:

  2. Jack July 25, 2012 at 08:29 #

    The whole episode has been nothing short of bizarre and potential dangerous especially in relation to the comments pertaining to Autism and XMRV (for which they was never afforded any published evidence). Little thought to the effect that such speculation and rumour-mongering would have on desperate patient populations. This latest attempt to swing speculation and blame to yet another party – Mikovits of course being ‘out of town’ on this particular day in question and then attempting to ‘blow the whistle’ and stop further commercial testing – is further scandalous behaviour. I understand Newsweek will be carrying a further interview shortly – perhaps more detail – but all the above article conveys is that a possible source of contamination (possibly not the only one) was recorded in her own diary sometime in March 2009. Up until this moment there has been denial upon denial – very often angry rebuttals of even entertaining the possibility that what was found and published in Lombardi et al was no more than contamination. And she only looks last Summer?! All this despite at least two previous articles pointing to the fact that VP62 was sent to her lab by Robert Silverman in 2007, her supporters have vehemently denied it was ever there:
    ‘Silverman was happy to collaborate and sent WPI a clone of the virus, known as VP62.’
    ‘After the meeting, Silverman sent Mikovits reagents to test for XMRV…’
    This contaminant is notoriously hard to detect but there have been no published attempts at looking. We heard tell of the use of an ‘independent lab’ but no detail. Just that ‘we are right and the negative papers are wrong.’ And then when it all gets too hot, they decide, ‘Actually it wasn’t XMRV it was another retrovirus’. Again, no proof and no published paper. Just more of the same dangerous ‘grasping at straws’.

    • Abby July 25, 2012 at 12:55 #

      Jack, I strongly support you. Why did she keep quiet, smiling and watching the world who was trying to find out the truth, nothing but the truth? When Dr. Silverman and Dr. Das Gupta retracted the Science paper putting up data to prove that there were plasmid contamination, did she support and came forward, told them boldly, “Yes, you are right, we are wrong?” Now she is trying to convince the world that she found the contamination way back. What a jerk!

  3. Poodle Stomper July 25, 2012 at 14:52 #

    From the Daily Beast article:
    Mikovits has had a varied career, jumping between research and drug development jobs because, [Mikovits] says, she has a habit of being a perpetual “trouble maker,” speaking up about ethical breeches, often to punitive consequence.

    Right…I’m having a hard time believing that someone who baselessly linked autism to her pet virus and vaccines, who misrepresented data, who stole lab material that wan’t hers, and who went on the run from the law, coercing a subordinate to remove said material in the first place keeps getting fired for exposing ethical breeches…and pigs fly.

    • Sullivan July 25, 2012 at 20:31 #

      I think there is a lot of that story which doesn’t make sense. For example, she had her lab assistant gather her lab books and data, met him when she went to Nevada, but he was gone when she woke up so she figured he must have taken them? And she didn’t call him? She just left Nevada thinking she didn’t have the books and that was OK? She spent weeks not knowing exactly where they were?

      One could write a very long article about the questions this news article raises (rather than answers). That’s why I focused on what this possibly says about the science.

      • Barb July 26, 2012 at 05:18 #

        Sounds to me like this is a “rehearsal” concocted by Mikovits and her lawyer for the upcoming civil suit. She just keeps digging herself deeper and deeper. Sigh.

  4. brian July 25, 2012 at 21:31 #

    Hehehe! Thats Abby. Im Abbie

    Well, kudos to both of you. (Blushes purple.)

  5. Jack July 26, 2012 at 07:01 #

    You know with the benefit now of hindsight it is perhaps easy to appreciate why some patients and parents might have become excited and invested in all of this. The reported (but never established) ‘link’ to autism was being touted in the media as far back as at least November 2009:

    ‘”We saw (the retrovirus) in 30 percent of a small number of autistic patients we looked at,” Mikovits said. “That’s 30 percent, but if one in about 100 children have autism, that’s a lot.”‘

    If I recall correctly, in the initial forays on Nevada Television the euphoria over the autism-connection from Mikovits was reigned in by Annette Whittemore after an advert break.

    It’s a great shame that similar efforts to reign-in the continued speculation and hype were not practised by all parties including Annette and – although some individuals did seem to drift into the background e.g. Lombardi whilst others never left the limelight and continued to drive their hypothesis into a desperate audience.

    The continuing speculation led (albeit dwindling numbers of) patient supporters around by the nose when certain aspects of this could and should have been quashed by those concerned. Now we have a situation where ‘ mouse retroviruses’ are embedded in the psyche of patients as a viable cause for both ME and Autism with no evidence to show that such a link exists.

    • Sullivan July 26, 2012 at 07:32 #

      Worse was David Kirby’s treatment of the story. In his classic style, he started with a question: Is Autism Associated with A Viral Infection?
      , and, by the time he was done, had lost the “question mark”. He then proposed the “question” that possibly this gives support to the vaccine-causation idea. Another question which he dropped later in his discussion. Having dropped the fact that these were speculations, he then turns the speculation on to how this fits into attacks on NIH and Tom Insel.

      All with the requisite plausible deniability (words like “might” and “apparently) on his part:

      The discovery raises more questions than it answers. What, exactly, is it about immunization that might switch on XMRV viral expression? Could the effect of heavy metals upon cytokine balances be at play? Where did this retrovirus come from, and how did it apparently become so prevalent in children with autism? Did these children inherit the virus from a parent, or was there some other unexplained route of transmission? Why has the NIH said nothing about XMRV in association with autism, and did Dr. Insel know about these findings without sharing them with the IACC?

      Yet another example of highly irresponsible writing by Mr. Kirby.

      • Jack July 26, 2012 at 08:37 #

        Indeed. The article actually linked to the Nevada show I was considering I think (though you might have to search on the Nevada TV site for ‘Mikovits’ to find it now). It was this comment:

        ‘”On that note, if I might speculate a little bit,” she said, “This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes — the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That’s its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you’ve now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency.”

        That if memory serves was followed by an advert break – ‘cliffhanger’ moment? – and then when they returned Annette tried to downplay this hype somewhat.

      • nskeptic July 26, 2012 at 09:33 #

        Kirby seems to have moved on from autism and is now writing about whales: Which are more his intellectual level certainly.

  6. Jack July 29, 2012 at 11:46 #

    ‘Odd’ that AofA appear to have ignored this latest from Mikovits. Was expected something from them at least.

  7. patricia July 29, 2012 at 13:33 #

    stop AoA bashing for a moment – if you an bear it – it’s an addiction with you lot.

  8. patricia July 29, 2012 at 13:35 #

    Re above. The Manitoban. Scroll down for the comment.

    • lilady July 29, 2012 at 14:32 #

      @ patricia: The XMRV virus *story* is never *over* with the lot at AoA. Just like the MMR-autism link and the thimerosal-autism link is never over with the lot at AoA.

      Just “key in” AoA with XMRV (or for a real treat), any real virus or real bacterium, and you’ll find some story or some poster who still believes these spurious links.

      I myself find *great* enjoyment in how far off the rails, the train wreck that is AoA, goes..

    • Sullivan July 29, 2012 at 16:07 #

      I’m aware that Prof. Lipkin is heading up a multi Site study with Ms. Mikovits. That’s what I’m referring to above when I speculate that she is signaling that the Lipkin study will turn out negative. One doesn’t typically say she has potentially contaminated her samples if one’s results are about to be replicated. I could be wrong, as this has been a long and complicated drama.

  9. patricia July 29, 2012 at 21:03 #

    “I could be Wrong” Sullivan???? Surely not…..


  1. ERV referenced in ‘Current Opinion in Virology’ – erv - July 31, 2012

    […] about XMRV– Not just the CFS patients, but the other folks who have been battling XMRV-woo, the pro-vaccine autism parents.  They got dragged into this mess after Judy Mikovits made some irresponsible remarks about XMRV, […]

  2. &raquo ERV referenced in ‘Current Opinion in Virology’ [erv] | - August 1, 2012

    […] about XMRV– Not just the CFS patients, but the other folks who have been battling XMRV-woo, the pro-vaccine autism parents.  They got dragged into this mess after Judy Mikovits made some irresponsible remarks about XMRV, […]

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