The highly publicized Reno study of chronic fatigue syndrome (CFS) at the Whittemore Peterson Institute in Reno has been challenged again—but has also apparently received its first high-level support.
In October 2009, scientists at the institute (WPI) reported that they had discovered a link between CFS (technically called myalgic encephalomyelitis) and a retrovirus, XMRV (xenotropic murine leukemia virus-related virus), related to a group of viruses found to infect mice. The report received wide attention all over the world (“Chronic fatigue breakthrough?” RN&R, Oct. 15, 2009).
Subsequently, eight researchers at London’s Imperial College reported that they had been unable to replicate the Reno work and that of 200 CFS patients tested, none had the XMRV retrovirus.
Later, a team at Britain’s National Institute of Medical Research had the same problem.
And a third team, at Nijmegen Medical Center in the Netherlands, again failed to repeat the Reno results. The publication of its results on Feb. 25 in the British Medical Journal was accompanied by an editorial reading, “Three papers from three well-respected European laboratories have now independently and unambiguously failed to find XMRV in CFS patients.”
The editorial speculated that there could be a couple of factors affecting the results. The patients studied at Whittemore Peterson are at Incline Village, Lake Tahoe, where an early outbreak of CFS occurred in 1985, and so narrow a geographic sample could be an anomaly—or “that XMRV infection is geographically confined to the United States.”
“It is possible that XMRV is implicated in the Lake Tahoe episode but does not play a substantial role in most cases of chronic fatigue syndrome elsewhere,” the editorial read.
And the patients in the Reno study were generally older than those studied in Europe.
The editorial was written by retrovirology professor Myra McClure and psychiatrist Simon Wessely, who were on one of the British teams that produced a study conflicting with the Reno study. The British Medical Journal, in which both the Dutch study and the editorial appeared, did not note this fact, which prompted a reader comment on a Los Angeles Times report on the Dutch research: “I thought it unprofessional of Myra McClure and Simon Wessely to write an editorial in BMJ commenting on these European studies without mentioning that they were the authors of one of them. But I think it’s worse for the Los Angeles Times to print the press release without independently checking the information and pointing out that conflict of interests.”
Whittemore Peterson Institute co-founder Annette Whittemore disputes that the European studies were actually replication studies. She faulted both the methodology of the British and Dutch researchers and their speed.
“We’ve always been very positive about our results and sure of the science behind it. We were disappointed that the studies were done so quickly and done with tests that were not clinically validated, which means that those tests were not checked to see if they could detect XMRV in a patient’s sample,” she said (the italics were in her tone of voice). “So even though we sent positive patients’ samples to a couple of those groups, they did not use the techniques that we used in order to validate. So it really was not a replication study. And of course, everyone knows there are many ways to fail to detect XMRV and only specific ways that will work to detect that virus.”
The steady drumbeat of adverse reports probably did the morale of the Reno research team no good. Then came some good news: U.S. National Institutes for Health (NIH) infectious disease chief Harvey Alter, a noted authority in the field—his research led to the discovery of hepatitis C—reportedly offered a reference in a slide at a conference in Zagreb that supported the link between XMRV and CFS.
It does not appear that Alter or the NIH planned for the release of this information. The workshop at which Alter spoke was closed. Apparently, journalists for the Dutch magazine Ortho obtained information on Alter’s lecture and reported it, prompting public relations firm Mass Media Distribution to send out a news release on the findings.
According to Ortho, the slide used in Alter’s presentation read, “The data in the [Reno study] are extremely strong and likely true, despite the controversy. … Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3% – 7%. We have independently confirmed the [Reno] group findings.”
The NIH and Alter were close-mouthed on the subject, though NIH confirmed that the slide is valid. It appears they are waiting until their study is published to comment, though there are some suspicions in Reno that the Centers for Disease Control are trying to prevent publication. The secrecy surrounding the NIH study and Alter’s silence certainly fuel that concern.
Still, the report of research that supported the Reno findings was enough for Annette Whittemore to take the Reno research team to a celebratory meal.
“We’re really excited,” she said. “We waited a long time for this news, and we’re celebrating internally. We’re waiting for the data to be published so that the rest of the world and the patients can also be [informed]. They’ve been sick for such a long time, and we feel that they deserve to be treated better. They deserve to be able to get significant and effective treatments as soon as possible, and so we’re trying to learn all we can about XMRV and its impact in human disease so that we can move that process forward.”
Unfortunately, until the NIH study is published, the Reno study will still be seen as wanting for support in the scientific community, so settling the publication issue can’t come too soon for the Reno team. In medical research, publication confers greater legitimacy.
The notion of celebrating one avenue to treatment of a disease raises the question of whether a group of scientists are rooting for their own findings over others instead of keeping their eyes on the objective ball of science. Whittemore, who has a daughter with CFS, said forcefully that’s not the case.
“Without a doubt we are in search of the truth,” she said. “When one has a family member that’s impacted you don’t really care what the truth is as long as you find that truth and then are able to take positive actions. And so it’s not a celebration as much of WPI findings but a celebration of finding a significant pathogen and then perhaps one day being able to treat for that pathogen and bring about, you know, renewed health.”