New Hope in Fatigue Fight
New Hope in Fatigue Fight
Our Review Summary
First, we want to acknowledge that this is a very complex topic to write about.
But we know the Wall Street Journal is up to the task better than was demonstrated in this piece. Be sure you read our "Why This Matters" comments below.
And see how Phil Hilts wrote on the Knight Science Journalism Tracker about the two different paths chosen by this story and another. We don’t think this story chose the best path.
Finally, see how Tom Watkins of CNN wrote this up for their website, with no breathless enthusiasm about "new hope" but, rather, with cautions throughout such as:
- "Further studies are needed to determine whether the same strong association with MLV-related viruses is found in other groups of patients with CFS, whether these viruses play a causative role in the development of CFS, and whether they represent a threat to the blood supply," the authors concluded in their study
- "We haven’t studied enough people, we don’t know enough about the mechanisms," co-author Dr. Harvey J. Alter told reporters in a conference call.
- "Very good laboratories have come up with disparate results," Alter said. "We think there are reasons for this. We think it’s in the patient populations rather than in the laboratory testing, though the latter has not been completely ruled out." He added, "We need to sort it out."
- Monday’s study underscores how messy science can be. "These results do raise as many questions as they answer," said Dr. Steve Monroe, director of the division of high-consequence pathogens and pathology at the Centers for Disease Control and Prevention. "Clearly, the different findings from different laboratories now that have been reported suggest that there are still a lot of things about this virus that we do not know."
Why This Matters
Chronic fatigue syndrome (CFS) has challenged medicine for decades. While the name suggests a clear disease entity, patients with the disorder are not homogenous in their symptoms or the severity of their fatigue. While diagnostic criteria have been refined, the controversy over what is and what is not CFS remains.
Not surprisingly, a host of potential causes of CFS have been postulated over the years. Infection has been a prime candidate as the cause with numerous virus families identified in higher percentage of patients with CFS symptoms than in healthy people. During the 1980’s, the Epstein Barr virus was the leading candidate based on observational data. The MLV family of viruses is the latest in a series of potential infectious causes of the disorder. In addition to a viral infection as the potential cause, immune, metabolic and endocrine dysfunctions have all been suggested, to name a few. In each case, observational data strongly suggested a linkage and a potential cause. Unfortunately none of these initially promising study results have led to a definitive identifiable cause. This latest report, published in a peer reviewed journal by a highly regarded group of researchers should be viewed in this somewhat muddled context. At the moment, some researchers have identified the presence of the family of viruses in people with CFS and some have not. It is not clear why there is a discrepancy in the findings. While the results are encouraging, they are by no means definitive. And importantly, while the virus may indeed be present, it may not be the cause of the disorder.
One of the authors of the commentary accompanying the published paper is quoted as calling for trials testing anti-retroviral drugs in CFS patients. While his subsequent quote appears to be an endorsement of this treatment, the commentary is a bit more restrained noting that "…the potential benefits of treatment should outweigh the risks…" Anti-retroviral drugs are not benign, either clinically or financially. They bring with them a host of potentially serious side effects and are staggeringly expensive. Given the complexity of CFS diagnosis, the uncertainty of its cause and the lack of enthusiasm suggested on the part of drug makers, the story would seem to suggest a course of action for CFS patients that is not supported by the science at the moment.
The story did not discuss the cost of treating chronic fatigue patients with antiretroviral drugs, which are extremely expensive. As one of our medical editors wrote, "Anti-retroviral drugs are not benign, either clinically or financially."
We’ll give the story another hesitant split-vote "satisfactory" score on this criterion. Although the story presents the results objectively in absolute and relative terms, it also seems tilted, erroneously, toward a framing that there is a clear link between the presence of the virus and chronic fatigue syndrome and that anti-retroviral treatment is appropriate.
By stating that the research will “likely spur patients…to seek treatment with drugs used to fight HIV…,” the story may in fact promote this action on the part of many. The reality is that the distribution of the MLV-related virus in the general population is not known, the association between the virus and chronic fatigue syndrome has not been established, and the effectiveness of anti-retroviral drugs in either reducing symptoms or eradicating the infection are unknown. Furthermore, these anti-retroviral drugs have adverse effects, some of which can be serious.
This is a small study showing an association between a virus and chronic fatigue syndrome, but it does not prove a causative association. The study authors make this point clear in their paper: “It remains to be shown that the association that we have found, using the methods that we have described, can be generalized to a larger group of patients with CFS.” However, the WSJ story suggests that the research is more definitive: “…researchers said the variants of MLV-like viruses closely related to XMRV that they found in fatigue patients was evidence of a link between the virus family and the syndrome.”
While the story did not exaggerative the seriousness of chronic fatigue syndrome, it did raise unnecessary alarm by stating that “tens of millions of people in the U.S. and more world-wide” could be infected with the virus in question. This constitutes disease-mongering, since it is not definitive that a virus causes chronic fatigue syndrome.
The story includes interviews with those not affiliated with the research, including some from the pharmaceutical industry and one of the authors of a commentary that accompanied the journal article; however, the story provides a one-sided, anecdotal report of apparent success with anti-retroviral drugs in two people. Classic case of "the tyranny of the anecote." On balance, the story leans heavily in one direction.
As the story points out, there’s no one effective treatment for chronic fatigue syndrome, but there are therapies that can help, such as cognitive behavioral therapy, exercise, antidepressants, pain medication, etc. The story could have mentioned these alternatives. We just did – in about 15 words.