Thursday, May 27, 2010

"Never seen anything like it"



Prior to last week I was partial to Brigitte Huber. Why not? -she is working on an interesting retroviral idea the results of which will be revealed to us in five years (if she is still around).

I wrote a blog post of her several months ago. I debate now whether I should delete this post, as Huber's behavior is so very negative and unprofessional. I will leave it for now - in hopes that eventually it will amount to something.

Here is the story of this XMRV "controversy" as I know it. Huber was invited to the Invest in ME conference to give a presentation on her study regarding HERV-K18. At the end of her talk, as a clever sidelight, she revealed the results of a study that her lab had done of XMRV. The study, using samples from three sources, found zero evidence of XMRV. This was wonderfully convincing. Zero is a very low number (perhaps the lowest). A reasonable person, to be more convincing in engineering their negativity, would have at least found one or two positives, especially given the fact that XMRV is found in the general population in two studies at close to 4%. Maybe then we would have given the study some credibility. But these denialists tend to want to overdo it. They can't help themselves. They have "perfection" in mind.

It is important to recognize this unexpected revelation for what it was. This was an act of malice. One has to ask why this is and what are the consequences for the rest of us, those who are looking for answers in this complex and difficult disease?

On the day before the presentation Huber indicated to a group of people that she would not be presenting her XMRV study results the next day. She said that she did not want to create a controversy. "Someone" got to her in the meantime, most likely her money support or academic mentors (if she has any) - and she went ahead and released the study results. In the old days this would be called lying.

(One can visualize the situation: a mysterious voice from Boston rings up in the night and says this: "Swallow the pill, Brigitte, take the poison pill!" And she did it - what devotion to the cause. I heard coughing in the background.)

It was obvious, while this talk was unfolding, that Huber was making a terrific mistake. Huber misjudged her audience (and this is a generous interpretation). This was not a scientific conference where scientist knock heads (with certain "rules"). This was an audience of sick patients, looking for something to hang onto, some move in the right direction. They didn't come to this conference to hear this kind of political "take out". When Huber finished her report of XMRV I turned to a prominent CFS doctor sitting behind me and said, "What was with that?'. Shaking his head, he replied that "he had never seen anything like it".

Perhaps Dr. Huber does not get out enough? I suspect that she does not know any CFS patients. At a minimum she is insensitive, at the worst, well - you fill in the blank. Perhaps she does not have that many speaking engagements and this was her one big shot? Fortunately Huber's efforts to unseat XMRV backfired.

We have to ask this question. Why did Dr. Huber throw herself under the bus? What forces does she represent? What is happening here? How can we defeat them?

It is very irritating to watch these political attacks- as they are a distraction and defending attacks takes time and money. Science is a dirty business and unfortunately it is done by people. In the future maybe it can be done by robots. People are both wonderful and horrible. In recent months we have seen some nasty business going on and I think something needs to be done about this. We need to take sides. XMRV ought to be allowed to live or die based on its scientific merit and these phony studies have no place.

We need to take sides.

The problem is that this has happened before with Huber. At a cancer conference earlier this year Huber "went after" a young scientist, giving his first presentation - on XMRV. The scientist was unable to adequately answer questions from an aggressive Huber. This was fair game, as it was a scientific group - but again one has to ask why, what is the issue here? There are other ways that scientists communicate that is more productive. This unfortunate exchange had a very negative impact in the cancer audience (who are ignorant about CFS) - with serious consequences to those who want to get on with CFS and XMRV research.

I feel bad for the the wonderful people who sponsor the Invest in ME conference. Dr. Huber tried to wreck their conference. Perhaps next time they can invite Huber back to work in the cloakroom, or to punch tickets. (But I wouldn't pay for her lodging or airplane ticket.)

Dr. David Bell delivers the message here.: "After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up."

There is a battle going on now, and many of us have seen it before. This is not about the WPI, this is about serious scientific research moving forward in CFS/ME.

6 comments:

  1. GREAT, marvellous.

    Greetings from Spain

    We in the fight .To the barricades!

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  3. I would never want speech to be censored, but you're right - this was not the place for this. Especially after saying it would not be done - she can hardly claim now that she didn't know it would cause grief when she decided to go back on her word and launch the attack, As you say - bewildering. And disappointing.

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  4. Great post Chris. I thought Judy handled Huber's "Sucker Punch" with great grace and dignity. Perhaps next time Huber should stick to speaking about the topic for which she was invited to speak and not try to pooh-pooh other peoples work based on her own sloppy experiments which haven't even passed the basic test of peer review. I felt the conference would have been much better without Huber's Hubris.

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  5. It doesn't sound to me like Huber had any sort of agenda. Her research speaks for itself in regards to her views of psychological vs. physiological causation of CFS. You don't activate a HERV by being a lazy poof. She obviously felt her tests were appropriate and adequate and didn't find any XMRV. Whether they were or not is a whole another question. I think she showed courage and integrity by doing what she felt she had to do in spite of the consequences, not because she's some sort of gremlin who delights in disabusing sick patients ala certain others whom we have had the displeasure of their acquaintance for all these years.

    PS- The monkey study reported at the CROI found extensive XMRV infection in the absence of detectable PCR, and I think the CDC study reported at the same conference couldn't find RT PCR and maybe no antibodies as well in patients who were positive by another PCR method. Long story short, there's still a whole hell of a lot more that is unknown about testing for this virus than there is known, and that's just testing for the damn thing!

    PPS- You mention Peptide T in your other blog post on the Conference, do you have any info on that? I'd be very interested in hearing anything you know on the subject. Thanks.

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  6. Let's see

    You didn't like Dr. Huber's results and felt she was disrespectful to Dr. Mikovats for saying she disagreed, so you in turn wrote a disrespectful column about Dr. Huber because you disagree with her.

    So - is the moral of the story that you can be disrespectful, but Dr. Huber can't?

    There are many many reasons why studies get different results and scientists routinely disagree with each other.

    Agendas, incompetence and conspiracies, although out there, are not usually the reason for the differences.

    And since there doesn't seem to be a huge line of biomedical researchers queued up to study CFS it strikes me as somewhat self-defeating of patients and others to rant at the few who actually give a darn.

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