XMRumorsV

Rumors about the Lipkin study are flying fast and furious these days. We’ve been hearing for months that the study results would be made public this year, but “news” of specific dates has kicked things into a frenzy.

In April, a rumor circulated that the results would be published on April 30.  Dr. Mikovits was quoted as clarifying that her own part of the study would be done by April 30th, and Dr. Lipkin said something similar.

On June 1, Dr. Dan Peterson spoke at the Invest in ME conference in London. He told the audience that the Lipkin study would be published on June 30th. This statement was repeated on Twitter by journalist Jorgen Jelstad (@DeBortgjemte), kicking up much excitement. The good thing about that, though, was that Lipkin’s lab (@CII722) was able to respond directly. On June 4th, Lipkin* the CII tweeted:

The XMRV study will NOT be published on June 30. Rumors associated with this release date are false.

We have begun composing the manuscript/compiling the data. Follow @CII722 for updates. Cheers!

In response to a direct question about why the date had been pushed back, Lipkin the CII tweeted: “June 30th was an estimated date. It was never definitive.”

Just eleven days later, the rumor kicked up again. Science Insider, in an article about the dropping of criminal charges against Dr. Mikovits, reported that the results “are expected to be revealed in a few weeks.”

A similar statement was made at the CFS Advisory Committee meeting on the same day. Dr. Nancy Lee** (DFO of the committee), Dr. Gailen Marshall (chairman of the committee), and Dr. Ermias Belay (ex officio from CDC) said that a white paper with the results would be published within a few weeks. I then had the following exchange with Dr. Lipkin the CII on Twitter:

@knittahknits: It was reported at the #CFSACmeeting that the XMRV results will be published as a white paper in a few weeks. Can you confirm?

@CII722: Another false rumor. XMRV paper will be peer-reviewed. Will announce on Twitter when it is submitted/accepted/published.

I’m not surprised that these rumors are circulating, nor am I troubled by Dr. Lipkin’s the CII’s responses. What DOES trouble me is the source of the rumors. Dr. Peterson provided samples for the study. Drs. Lee and Belay are federal employees. I assume that all three were quite confident in the information that they have since they made such public statements about it. They all have to know the effect such statements would have on the community, and none of them are irresponsible rumor mongers.

So who is telling these people that the results will be published in a few weeks?

*Update 12:25pm – The Center for Infection & Immunity contacted me via Twitter after this post was published to clarify:”Hi! 2 corrections. Our Twitter is run by the CII’s science writer, not Dr. Lipkin. More accurate to say “the CII tweeted” & “CII’s response” so I have updated the post accordingly.

**Update 6:14 pm – I emailed Dr. Lee about this and regarding the timing of the results she responded, “I do not know when the XMRV results will be released.  I too have heard conflicting information. It will happen when it happens.  I must have patience.”

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7 Responses to XMRumorsV

  1. dafuq?! says:

    Wtf?!? This research has been published already last year and was withdrawn because the results were proven false! Additional tests and research could not verify the XMR virus and so it was disregarded as a patogen in CFS. So what is this post about??? Is it old news or have they actually wasted more money on a dead end research again???

    • Jennie Spotila says:

      This post is about the so-called “Lipkin Study” funded by NIH. It’s a multi-site study supposed to be the definitive answer on XMRV and CFS. I describe the study more completely in this post: http://www.occupycfs.com/2012/03/01/the-holy-grail/

      It’s important to note that the study was announced and funded before the Lombardi paper was retracted. One of my criticisms of the study is that it has taken far far too long, and I question whether it has any value given the retractions.

  2. rivka says:

    thanks for this info. it is helpful. — rivka

  3. Xmrv says:

    Last week dr lipkin emailed my friend and told her work on xmrv study is still on going.

  4. Bo says:

    The CII said the date was correct. This information is coming from the Government through people like Peterson.

    The study isn’t work it anyway. Government controlled study into a retroviruses that they ignored for 30 years – don’t make me laugh

    • Jennie Spotila says:

      Bo, can you cite the source of your information. CII told me directly the date was incorrect. And Dr. Nancy Lee from DHHS also revised the statement she made at the CFSAC meeting.

  5. Chobsingh says:

    Anyone who has received a death tharet or other harassment through email should GO TO THE POLICE. Period.Instead, those of us who DO try to participate in constructive criticism are tarred and feathered. Which results in leaving us out of the conversation entirely.Part of the problem is that several British psychiatrists use these methods to keep the spotlight focused on themselves instead of, for example, a new definition for ME that came out in the Journal of Internal Medicine this summer. That definition would put them out of business, so they would rather you be chasing the red herring of the dangerous patient.Myalgic Encephalomyelitis is a seriously disabling disease characterized by post-exertional relapse and significant cognitive dysfunction. Symptoms include severe muscle pain and weakness, headaches, photophobia, ataxia, dyslexia, disorientation, confusion, and expressive dysphasia. Roughly one-fourth of the victims remain housebound and/or bedridden for years sometimes for their entire lives. It is portrayed by a group of British psychiatrists as a modern form of neurasthenia, for which they actually cite a book written in 1869 that claimed girls who studied science risked either having their uteruses shrivel up (hysteria) or a permanent nervous condition neurasthenia.The prescription of CBT/GET (Cognitive Behaviour Therapy/Graded Exercise Therapy) preferred by British health authoritties, on the advice of these psychiatrists, is at best woefully inadequate, and at worst, makes the patients more disabled than when they started out. Every year, in May, the organization Invest in ME runs a research conference in London, bringing in researchers from around the globe. They have CD’s from each of those comferences, since 2006. For a truly free and intelligent debate, let me suggest the editor avail himself/herself of all this information, which is effectively censored in the UK. In 1999, Harvard medical school professor Anthony Komaroff wrote in the American Journal of Medicine that there were so many good published articles in peer-reviewed research journals that the psychiatric portrayal of this disease could be put to rest. He repeated that same statement ten years later.Wouldn’t it be interesting to have Drl Komaroff summarize this research for your Journal, to show the side of the story that is being left out by the British psychiatrists? It would also encourage rational discourse, instead of focusing so much attention on a small group of miscreants who do not speak for the 250,000 British citizens with M.E. or the one million US adults with CFS (Fukuda 1994).Thank you.

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