Tag Archives: WPI

Judy Mikovits in jail.

(Reposted from my Tumblr.)

Two years ago, researcher Judy Mikovits was riding high atop a wave of promise.

She had published one of the most discussed papers of the year in one of the most prestigious scientific publications in the world.

Her team’s findings were hailed as a potential breakthrough for an illness — chronic fatigue syndrome — that had long frustrated researchers. She was invited to speak at scientific conferences around the globe. Adoring patients crowded her at her talks.

Now, in a stunning twist, Mikovits is sitting in a California jail cell, held without bond, awaiting an arraignment hearing Tuesday. An arrest warrant issued by University of Nevada at Reno police lists two felony charges: possession of stolen property and conspiracy.

She was fired in September, and this month her former employer filed a lawsuit alleging she had wrongfully taken lab notebooks, a computer and other proprietary data. Other researchers have discredited her work, and the journal Science, which published her study, is investigating whether the data were manipulated.

The only constant is the patients who continue to rally around her.

“Remember that we are behind you every step of the way, even whilst you sit alone in jail wondering what will come next,” one person wrote on a blog called OslersWeb.

(source: Trine Tsouderos, Chicago Tribune)

Well, what in the seven hells is this now? Could this scientific soap opera get any more bizarre? Never mind, forget I asked.

“The only constant….” Yes, the only constant there will ever be are the patients who have completely abandoned critical thinking in favor of hero worship. These are the exact same types who continue to lionize Andrew Wakefield despite his incompetence, fraud, and penchant for giving colonoscopies and spinal taps to children without consent or approval. No matter whether Mikovits is found to have committed two federal crimes, or defrauded the entire ME/CFS community, these patients will be “behind [her] every step of the way.”

I’m pretty sure if Mikovits killed an ME/CFS patient with an XMRV-infected mouse, in front of two CCTV cameras and a network TV crew, this particular subset of the community would claim she’d been framed. Why am I not writing as much about ME/CFS anymore? Because these very people have completely worn me out with their ridiculous bullshit. I loathe having to be associated with them and I’m no longer going to sugarcoat it.

Happily, science has moved on to many more interesting research angles. What are these die-hards going to do when a cure or treatment comes from, say, gene research and not XMRV, I wonder? Admit they were wrong? I eagerly await that day for a number of reasons.

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Weekend sendoff: Oh, you again?

Yes, it’s me again. 2011 has not, so far, left me with much blogging energy. There have been major transitions, some still in progress. I am optimistic that things will improve, since I also have a few other projects I’m eager to get back to.

Anyway, I wanted to share two articles about CFS and XMRV that sum up the situation very well. Both touch on the relationship between patients and researchers. The first is from the Chicago Tribune, with a good summary of the state of XMRV research. The die-hards dislike this writer, but I think she’s seeing the big picture and the article reflects that: there are a lot of CFS patients who believe in XMRV, but the research is not yielding more evidence in favor of it.

The chasm between the WPI and its supporters and many in the scientific community is emblematic of a new, modern-day dynamic in which patients keep close tabs on the work of researchers and feel empowered to challenge that work and form strong opinions about the quality of it.

An editorial in Nature goes into more depth on this aspect, and exhorts both sides of the argument to listen to and respect each other. (The first comment, by Brian Foley, mentions different etiologies, something I harp on a lot.)

The challenge for scientists in this field, as in any other that involves patients, is to understand and be motivated by the plight of the patient community without letting their research be swayed by it.

Good reporting on this “mess” is great to see in mainstream media like the Tribune and The Wall Street Journal. However, I’m wondering whether CFS patients, who have tried for decades to shed the images of laziness, mental illness, and hypochondria, aren’t developing a new stereotype for themselves: mouthy and unswayed by science. Obviously, this describes only a portion of the patient community, but as I’ve fretted before, I believe the rest of us may be thought of as guilty by association.

I don’t really try to convince people of which side they should be on anymore. I only ask for clarity of thought and acceptance of solid evidence. If XMRV is proven to be implicated in chronic fatigue syndrome, I will accept that scientific consensus just as I’ll accept the other one that may be forming.

I recognize that there are political and scientific considerations that do cast a reasonable doubt on all the XMRV criticism, and which I don’t follow as closely as many do. I might not be informed enough about those aspects. I also have encountered very little medical resistance and have a doctor who is actually interested to find out exactly what’s wrong with me. Many of the WPI followers have been legitimately burned by their experiences with medical science, and I think they come by their suspicions honestly.

So I follow the science, and hope that the pro-XMRV crowd at least take it into account, which too many do not. Suspicion is okay; conspiracy theory is going too far. Just as people demand understanding and respect from their doctors, so should they reciprocate.

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Weekend sendoff: Judy Mikovits and bad science

No sendoff today, instead some strange news to discuss. A few days back, Data_Jack was kind enough to alert me to a new post at ERV, which briefly mentioned that Judy Mikovits will be presenting about XMRV at the AUTISMONE conference.

A little background. Mikovits is the lead researcher on the XMRV study done by the Whittemore Peterson Institute (WPI). Austimone.org lionizes the now completely discredited Andrew Wakefield, as well as the eminently irrelevant Jenny McCarthy, in their efforts to continue frightening parents with bad science about a nonexistent link between vaccines and autism. Given that the CFS-XMRV link itself is still utterly tenuous, I was somewhat alarmed to see that Mikovits has moved on to autism.

And with good reason, as it turns out. I did a little searching about XMRV and autism, and found this article from another bastion of antivax lunacy, the Huffington Post. In it, Mikovits is quoted as follows (emphasis mine):

“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.”

What. The. Fuck.

What is Mikovits up to, not only cozying up to one of the largest dangers to public health — the antivax movement — but spouting their party line that has no basis in scientific fact? What respectable scientist would perpetuate this myth, even with that gutless “I’m just speculating” caveat?

Here is the abstract for her presentation:

Chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD) share common clinical features including immune dysregulation, increased oxidative stress, increased expression of proinflammatory cytokines and chemokines, mitochondrial dysfunction and chronic active microbial infections suggesting an underlying immune deficiency may be involved in subgroups of CFS and ASD. We recently demonstrated the first direct isolation of an infectious gammaretrovirus, XMRV, from the blood of CFS patients. We have developed quantitative assays to detect XMRV replication and infection in cell culture. Moreover, we found evidence of XMRV infection in >85% of more than 200 CFS patients tested to date. These data implicate a role for XMRV infection in the pathogenesis of CFS. Because of the clinical similarities of CFS and ASD, we hypothesized that XMRV infection may also be detected in subgroups of ASD. This presentation will update the status of XMRV research, show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD.

Funny that the abstract promises to mention “evidence of XMRV infection in ASD” while leaving out any mention of the fact that XMRV is found in a percentage of healthy controls as well. (Aside from the WPI’s study, here’s a Japanese one that discovered the same thing.) Given this, I might expect that there’s evidence of XMRV infection in people with anemia, bipolar disorder, acne, a slight cough, myopia, etc. But because CFS patients and ASD patients share some symptoms, Mikovits is presenting at an antivax autism conference on the hypothesis — I see no study listed here that will be presented — that XMRV is involved.

CFS also shares symptoms with fibromyalgia, lupus, MS, and many other illnesses. Can we expect to see Mikovits presenting at conferences for all these diseases, sharing her speculation that XMRV is involved with all of them as well? Or has she simply identified another vulnerable, gullible population on which to push her extraordinarily premature agenda?

I wrote to the WPI this week about my concerns. As of this post, I have not received a reply. At the moment, therefore, I’m not seeing anything here to be positive about. If Mikovits is so eager to connect her research to a dangerous and fallacious area of “investigation,” my already iffy feelings about the WPI and the future of XMRV and CFS have plunged even further towards total pessimism.

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