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.
"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.
The story mentions that chronic fatigue syndrome has “no effective treatment." It also states that "some doctors are already prescribing drugs approved for HIV for fatigue patients." We’ll give the story a satisfactory score on this criterion, although we have mixed feelings about the message it left with readers.
The story indicates that notion that chronic fatigue syndrome may be caused by a virus is not new, but the story is based on a very limited time frame and as a result gives the reader a false impression that this is indeed a new phenomenon. As noted previously, Epstein Barr virus was thought to be a cause of CFS during the 1980’s. In addition, the language used in the story, such as "new hope" in the headline, is questionable given the authors’ repeated caveats in this story and in public comments and in other stories. And the line – "the finding will likely spur patients with the condition to seek treatment with drugs used to fight HIV" seems to convey that this wouild be a new pursuit, when, indeed, the story later explains this is already happening. "Spur more patients" might have been better, but even then, whose crystal ball is being used here? Lead author Dr. Alter said, "It’s an association, but’s all it is."
This piece clearly does not rely on a press release.
Total Score: 3 of 10 Satisfactory
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Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
Here we go again w/more news about “Blood test finds 50 types of cancer.” And here we see again what’s missing from most such news stories. https://www.healthnewsreview.org/2021/06/blood-test-finds-50-types-of-cancer-weve-been-down-this-path-before/
Comments
Please note, comments are no longer published through this website. All previously made comments are still archived and available for viewing through select posts.
Our Comments Policy
But before leaving a comment, please review these notes about our policy.
You are responsible for any comments you leave on this site.
This site is primarily a forum for discussion about the quality (or lack thereof) in journalism or other media messages (advertising, marketing, public relations, medical journals, etc.) It is not intended to be a forum for definitive discussions about medicine or science.
We will delete comments that include personal attacks, unfounded allegations, unverified claims, product pitches, profanity or any from anyone who does not list a full name and a functioning email address. We will also end any thread of repetitive comments. We don”t give medical advice so we won”t respond to questions asking for it.
We don”t have sufficient staffing to contact each commenter who left such a message. If you have a question about why your comment was edited or removed, you can email us at feedback@healthnewsreview.org.
There has been a recent burst of attention to troubles with many comments left on science and science news/communication websites. Read “Online science comments: trolls, trash and treasure.”
The authors of the Retraction Watch comments policy urge commenters:
We”re also concerned about anonymous comments. We ask that all commenters leave their full name and provide an actual email address in case we feel we need to contact them. We may delete any comment left by someone who does not leave their name and a legitimate email address.
And, as noted, product pitches of any sort – pushing treatments, tests, products, procedures, physicians, medical centers, books, websites – are likely to be deleted. We don”t accept advertising on this site and are not going to give it away free.
The ability to leave comments expires after a certain period of time. So you may find that you’re unable to leave a comment on an article that is more than a few months old.