Tag Archives: Whittemore Peterson Institute

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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XMRV: Wait for the science

People with chronic fatigue syndrome want answers. We have had our lives, friends, partners, jobs, and prospects taken away for reasons that science can’t even explain yet. We have seen the misuse of CDC funds supposed to go to researching our illness and constantly face implications that we’re just malingerers or even mentally ill.

So it wasn’t surprising when the Whittemore Peterson Institute‘s study showing that XMRV was present in a large percentage of one cohort of CFS patients caused so much excitement and hope among patients. For one thing, the news helped validate the fact that CFS is a real illness. I heard many stories of patients whose friends or family members changed their negative views about CFS after this story came out. I had a similar experience myself. For another thing, this has galvanized the discussion among researchers about whether there might be a treatment or even a cure.

I write a lot about how chronically ill people need to remain critical thinkers. Usually I’m referring to alternative medicine, but this applies to science-based treatments as well. I’m concerned right now about what seems to be a giant logical leap by many, many CFS patients from this single study to the notion that XMRV is absolutely the smoking gun behind CFS. They are asking about when they can get tested and treated. Some are even looking into anti-retroviral medications already.

The fact is, this single study has not been either replicated or corroborated yet. In fact, a study done in the UK showed no correlation between CFS and XMRV, although there are some questions about that study due to the involvement of Dr. Simon Wesseley, who has maintained for years that CFS is a psychological illness. But even those questions come into question, and so the controversy continues. What is not controversial but is a plain fact is that so far, the WPI study is the only one showing a high incidence of the XMRV retrovirus in a relatively small cohort of CFS patients.

I’m worried that patients are leaping onto the XMRV bandwagon before the science is anywhere close to verifying not only the presence of the retrovirus in CFS patients, but even whether it can be treated at all. It seems to me that since we’ve been relegated to trying alternative and even fringe treatments if we want to find relief, the idea of a science-based answer is so attractive that the actual scientific process is being ignored.

And it doesn’t help at all that the CFIDS Association, which should ideally provide balanced coverage of issues related to ME/CFS/CFIDS, seems to be encouraging this mindset. A recent public note on their Facebook page lists resources for obtaining XMRV tests. All of them cost between $300 and $400 and none of them are reimbursable by insurance. The note does include quoted caveats by three CFS experts:

Dr. David Bell: “I am reluctant to suggest to anyone that they spend big bucks for a commercial test now. We do not know if a particular test is accurate, and even if it is accurate we do not know what it means, and even if we did know what it meant we would not know what to do with it. I would be patient. Answers will start flowing soon, so stay tuned!”

Dr. Nancy Klimas: “Don’t rush to get the test. Why, because you’re not going to act on that test quite yet. The knowledge of being positive is not going to get you an antiviral prescription from anyone right now because we don’t know which one to give and if it’s safe or if it’s toxic….If you knew your status today it really wouldn’t change anything.”

Dr. Lucinda Bateman: “It’s definitely anyone’s prerogative to do what they want in terms of testing… I think it will not be long before we have local access to the lab test that will have been tested, perfected and validated and covered by insurance. The second most important thing is that we don’t know what to do with the information yet.”

I appreciate the comments that no one knows what to do with the information yet. But what about the information that the WPI’s study has not even been replicated or corroborated yet? Shouldn’t “CFS experts,” of all people, be reminding patients of this fact? There is no mention at all that medical science doesn’t accept conclusions based on one single study.

Additionally, I was particularly interested in this bit of information (emphasis mine):

The second test to market is offered [sic] VIP Diagnostics (www.VIPdx.com), a Nevada company owned by the Whittemore family….The website discloses that the tests have not been approved by FDA for diagnostic purposes and that medical expertise is required for test interpretation. VIP Dx will pay a royalty to WPI for each test it performs, according to a press release issued on Jan. 14, 2010.

So the family affiliated with the institute that performed the study owns a lab that performs these very expensive, non-FDA-approved tests, each of which provides a bonus to the institute. Did I get that right? And does this seem weird to anyone else? I want to make it clear I’m not alleging any wrongdoing, and I’m glad that this information is openly and easily available. Also, money that goes to the institute is (hopefully) likely to fund further research, which I don’t argue with. But the squeezing of this money out of vulnerable, credible CFS patients who are excited about the one XMRV study the institute has produced leaves me with a very bad taste in my mouth.

As soon as the XMRV news broke, I encouraged cautious and critical thinking about it. At this point I’m not just encouraging it; I’m begging for it. The de facto acceptance of this retrovirus as the cause of CFS by both patients and advocacy groups is worrisome, and the quick cropping-up of expensive and as yet pointless tests smacks of patient exploitation to me. Don’t get me wrong: I am not arguing that there is nothing to the XMRV study. I don’t have the medical expertise, and that isn’t my point. If further study and research does show that XMRV is a cause of CFS and treating it can help patients recover, I will be just as thrilled as everyone else.

But not until then.

(image via xkcd)

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