The amount of writing and interacting I did last week helped push me into a crash, so it seems appropriate to talk about the interesting news that came out around the same time we blew up the moon and President Obama won the Nobel Peace Prize.
A study published online last Friday by the journal Science showed a possible link between chronic fatigue syndrome (CFS) and a retrovirus known as XMRV. The mainstream media, from the Wall Street Journal to the BBC, as well as major scientific organizations like the National Cancer Institute, reported on this story.
Even the small amount of data presented in these stories is enough to make a critical thinker cautious about the study and its implications. The study group was relatively small, and the findings of XMRV in only 67% of CFS patients makes it far from a smoking gun (especially given other retroviruses previously implicated in CFS), or something that warrants immediate treatment. There is also concern on the other hand, as mentioned in the BBC article, that given the disease’s variety among patients, a “smoking gun” theory is flawed to begin with. For more on the science behind this announcement, I recommend this article, and the analysis by England’s National Health Service, both of which discuss the findings with appropriate caution in their conclusions.
But there is something to be happy about here on a larger scale. I can’t remember the last time, and there might not have been one since I got sick, that there was so much mainstream media attention paid to a scientific study focusing on the etiology of CFS. It helps enormously to validate a disease that is still widely thought to be partly or entirely psychological in nature. (Did you notice that the NHS article was categorized under “Mental Health”?) I feel vindicated when the world sees that scientists are not only studying somatic causes, but making progress with their discoveries. From a purely PR standpoint, it’s a great awareness campaign. From a scientific standpoint, a potentially faulty study can inspire further research — and hopefully further research money — and the positive feedback loop continues.
Unless, of course, you are a questionable expert with an eponymous CFS treatment, such as Trevor Marshall, Ph.D. His protocol, which involves the complete elimination of vitamin D from the body in all forms, food and sunshine, is fringe science and rightfully controversial. (From a website question about why the protocol is not more widely used: “Furthermore it is more difficult to obtain acceptance of the Marshall Protocol because, like surgical operations, its efficacy and safety cannot be easily proven with double blind clinical trials.” Caveat emptor.)
Here is Marshall’s response to the news. He begins with some strange logical leaps (just because XMRV was not present in all CFS patients studied doesn’t eliminate all possibility of causality) and expresses concern about the results based on an opinion, but does manage to eke out a self-serving nod of congrats to a colleague. Then suddenly, he gets nasty. His ensuing comments are snippy and condescending, and he also expresses pride at supposedly annoying the editors of a respected journal.
As I’ve mentioned before, people suffering from chronic illness need to think critically at all times, no matter how tempting a treatment may look or how impressive an authority may seem. If Marshall finds the study utterly faulty, that’s certainly his prerogative and as I said, I agree there are problems with it. But there’s a lot to infer about a person who purportedly is interested in seeing CFS patients get better, yet who has nothing to say about the larger potential of this study, or the publicity, to positively affect people with CFS. Is he concerned about patients, or about the possible loss of his patients to a test or treatment that can be easily proven with double-blind clinical trials? His dismissive defensiveness is unseemly in someone who’s allegedly on our side, and I hope anyone considering his treatment takes this into account.
So, no, I am not heralding a cure, or anything like a cure. But to borrow some Christian vernacular, I am really happy to witness all this spreading of the good news. It should give us hope – not crazy, unrealistic hope, but well founded hope that there are people out there working to find parts of the puzzle. And hope that some people’s minds may be changed when stories like this come out. I’m a skeptic, but in this I believe.
