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Study that linked retrovirus with chronic fatigue syndrome was seriously flawed, research suggests

By Susan Perry | 06/02/11

It’s been two years since a study linking chronic fatigue syndrome (CFS) with the retrovirus xenotropic murine leukemia virus-related virus (XMRV) was published in the journal Science. The authors of that study reported finding XMRV in blood samples of 68 of 101 individuals with CFS, compared with just 8 of 218 samples from people without the illness.

Those results led the American Red Cross to announce last year that it would no longer accept blood donations from individuals with CFS. It also led some people with CFS to experiment off-label with antiretroviral drugs, which pose health risks of their own, including kidney damage.

As I’ve reported here before, the 2009 study was controversial from the start, and grew even more so as an increasing number of scientists were unable to replicate its findings. (One group of scientists did find a possible association last summer between CFS and an XMRV-related class of viruses that causes leukemia in mice, but they did not find a link to XMRV.)

The possibility that the genesis of CFS had finally been identified had raised the hopes of many of the more than 1 million Americans with this debilitating illness, which is characterized not only by severe and prolonged tiredness, but also by joint and muscle pain, headaches, sore throat, insomnia, difficulty with concentration and memory, and other symptoms.

Still baffling
For all too long, the medical community had treated CFS as a psychological disorder. Although that attitude no longer prevails, scientists remained baffled by what causes CFS as well as how to effectively treat it. (A new randomized clinical trial suggests cognitive behavior therapy and gradual exercise therapy may help patients recover.)

But those hopes surrounding the discovery of the XMRV link received a serious setback this week with the publication of two new studies in Science. One, using the same methodology as the 2009 study, was unable to find any evidence of XMRV or any other related virus in the blood samples of 61 people with CFS, including 43 individuals whose samples had tested positive in the earlier study.

The second study was even more damning. It found strong evidence that the XMRV found in the 2009 study originated not in the blood of CFS patients, but in the laboratory, the result of contamination from cell lines and chemicals used in the lab.

Journal sought retraction
Science has asked the authors of the 2009 study, which was led by Vincent Lombardi and other researchers at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., to voluntarily retract the paper. They have declined to do so.

“The authors of the Lombardi study believe that it is premature to conclude that the negative studies are accurate or change the conclusions of the original studies and we fully agree,” said the institute’s president, Annette Whittemore, in a press release [PDF] Tuesday.

Meanwhile, scientists at the National Institutes of Health are conducting a $1.3 million study on the subject. Results are expected within the next couple of years.

Comments (3)

Submitted by Jerrold Spinhirne on June 2, 2011 - 3:18pm.

Thank you, Susan Perry, for covering this story fairly and independently. This is rare in science journalism today. I find the action of the editors of Science in calling for the retraction of Lombardi et al. inexplicable. There still has not been a single study which has fully replicated the detection methods used in the Lombardi paper. Similar is not good enough. The editors of Science should know this.

Submitted by martin white on June 4, 2011 - 4:45pm.

http://files.me.com/jdj88/tnmi0f - This is the chart provided by Whittemore-Peterson Institute titled, ""A Comparison of Methods for the Detection and Association of XMRV in Chronic Fatigue Syndrome". This chart is very powerful and shows that the negative studies are not true replication studies, and indeed are methodologically weak in ways that raise serious doubts about their own validity and accuracy. Indeed, they seem to have performed only a few of the very critical methodological steps that are needed and were done by WPI in order to detect or rule out the presence of Retroviruses in ME/CFS patients. These negative studies are so shoddy, careless, weak that THEY should be retracted. However, real science does not work like that. Real science is open for debate and exchange of ideas but that is NOT what is going on with the WPI study. It is now apparent that some group wants to kill off all Retrovirus research especially the WPI research. Why? Soon we all will find out WHY and WHO is behind the attempts to kill of retrovirus research now as they did in the mid 1980's as done by Drs. Defreitas, Bell and Cheney. Something stinks with all of this...

Submitted by Kelly A. Latta on June 4, 2011 - 5:00pm.

Susan you have done a great job of covering these issues.

A few links you missed.

David Tuller MPH wrote a good piece for the New York Times, "Defining an Illness Is Fodder for Debate," on why the study you cite on exercise and cognitive behavioral therapy may not work for all CFS patients and why it did not meet the gold standard for an RCT.

The WSJ also covered the issue including an editorial by psychologist Dr. Leonard Jason, "An Illness That's Hard To Live With—Or Define."

As for XMRV and CFS, as the University of Utah researchers who published a negative study said, "It is also vital to state that there is still a wealth of prior data to encourage further research into the involvement of other infectious agents in CFS, and these efforts must continue."

Scientists with the University of New Jersey (Schutzer et al) who recently published a proteomics study looking at proteins in the spinal fluid, found that, "CFS patients carry a subset of proteins unique to their spinal fluid, compared to [Lyme] patients and healthy volunteers. Included in the subset are proteins implicated in Alzheimer's and Parkinson's diseases, supporting the idea that CFS has an underlying neurological cause."

Other scientists such as Dr. Jay Levy, who was a researcher with Knox et al whose study you write about, also noted problems with the immune systems of CFS patients.

Just as cognitive behavioral therapy or exercise wouldn't be considered the last word on treatment for cancer patients, patients with AIDS, MS, or many other organic diseases, CFS studies may need to continue to move past the psychological.