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)