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.
8 Comments
Good post. I don’t think you should use the term “his patients” with Marshall though. He’s not a medical professional so thus by definition I don’t think he can have patients. Also referring to him as “Trevor Marshall, PhD” seems misleading, albeit technically accurate. Unless he has suddenly got a PhD in biosciences that I haven’t heard of, he is only a PhD in engineering or something like that (though he never forgets to flaunt his degree as if it was relevant to the dangerous treatments he recommends…)
I take your points about Marshall, of course. However, “patient” is defined as someone undergoing medical care or treatment; the definition is not based on who is providing that care. And I believe referring to him as “Trevor Marshall, Ph.D.” is considerably less misleading than “Dr. Trevor Marshall” which is how he refers to himself.
Hey Joey!
. I appreciate the points you are making, not simply because I agree with many of them, but because they are based on careful analysis of the facts, a sensitivity to those who may differ in belief, clear incorporation of your own experiences and views, and an overarching hopeful/optimistic tenor (despite the skepticism). I look forward to reading more!
I found your blog through the chronic babe forum. I was interested to see your take on the XMRV research. I wrote a similar blog, though not nearly as detailed or eloquent as your own, when I heard the news. I also started a similar post about invisible illness awareness week, but never finished it (the story of my life with CFS
Thank you for the very kind words! I read your blog and enjoyed it; nice to meet another person with a thoughtful approach to this news.
Very good post. The article by the National Health Service (UK) is probably one of the most balanced I’ve read thus far. WPI has done further testing with improved test and now claim that 95% of the CFS patients have XMRV antibodies, but they haven’t published results with this new test for ‘healthy’ persons yet.
Thanks for pointing that out. Based on the further amount of press on this — and even unrelated articles about XMRV — I am optimistic that we’re going to see more studies as soon as it’s feasible.
Fantastic & well balanced post which is marvellously written as always. I am in complete agreement that for the moment, the most positive thing to come out of this is the amount of international news coverage. I’ve not read the NHS resposnse to the research yet but will come back to it, it is strking that you mention that it falls under ‘mental health,’ not sure if you’re aware but Simon Wessley a psychiatrist is the main advisor to the UK government on CFS/ME and it is classed here for benefits etc as a mental illness. I’ve just seen a video, which makes me sick to the stomach, it is a training video for GP’s in the UK. http://www.youtube.com/watch?v=bvArXvqAMiA I think you’ll find it interesting.
Thanks for posting that. Someone, and I thought it was you but now I’m not sure, had mentioned Wessley to me and I had meant to ask them to weigh in about him here. I especially enjoyed his interview with the specialist on CFS from a psychiatric institute.
I will say I have never once had a doctor tell me my problems were psychological, and the more I see of how CFS patients are treated in other countries, the more grateful I am for that. (Not that it doesn’t happen regularly in the U.S., of course, but at least it’s not officially classified as a psych disease here!)
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[...] 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 [...]