By Dov Michaeli

That was a sad chapter in the annals of science, and more importantly -in the search for the real cause of this debilitationg disease. In a previous post on TDWI we suggested that “it’s time to move on”, which provoked some anguished, and some angry responses Science titled Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome a group of scientists, led by Dr. Judy a. Mikovits, of the Whittmore Institute, affilliated with the University of Nevada, Reno, reported:

“Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide. Studying peripheral blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a human gammaretrovirus, xenotropicfrom patients.

In the October 8, 2009 issue of  murine leukemia virus–related virus (XMRV), in 68 of 101 patients (67%) as compared to 8 of 218 (3.7%) healthy controls. Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell-associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines after their exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients. These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS.”

Since then no fewer than 17 follow-up studies have failed to replicate the link between chronic fatigue and the retrovirus. Today, 12/23/2011, the journal Science issued a retraction of the paper.

The Washington Post quotes Bruce Alberts, the Editor in Chief of the Journal and a professor of molecular biology at The University of California, San Francisco:

“…  While the retraction removes the original study from the scientific record, it can’t undo two years of expensive sleuthing, including a $2.3 million National Institutes of Healthstudy now underway” that is “searching for XMRV in 150 patients and 150 healthy subjects. …  NIH will continue to support the study through its conclusion next year, said a spokeswoman for the NIH branch funding the study, the National Institute of Allergy and Infectious Diseases.”  Alberts, however, said that “there was no reason to continue the NIH-funded study” and called the episode “a tragedy for science.”

Some people, especially those associated with the original flawed paper and the present NIH study, think the retraction is premature. In my opinion, if anything it is late. Much money was diverted from good resarch into the cause(s) of CFS to refute, and refute again, and again, the association of XMRV with the disease. Too many sufferers of this real disease had the false hope that retroviral drugs would help them. All sufferers of CFS are the real losers of this episode.

Solid data suggest that there is an immune/inflammatory association with the disease. Time to move on, and focus on the tantalizing clues already available.

Dov Michaeli, MD, PhD
Dov Michaeli, MD, PhD loves to write about the brain and human behavior as well as translate complicated basic science concepts into entertainment for the rest of us. He was a professor at the University of California San Francisco before leaving to enter the world of biotech. He served as the Chief Medical Officer of biotech companies, including Aphton Corporation. He also founded and served as the CEO of Madah Medica, an early stage biotech company developing products to improve post-surgical pain control. He is now retired and enjoys working out, following the stock market, travelling the world, and, of course, writing for TDWI.

4 COMMENTS

  1. Couldn’t have put it better than you Lilly.
    Time for some people to educate themselves and look at the much bigger picture.

    There are a lot of papers out there that should be retracted now that every knowladgable ME scientist agrees that ME is a severe neuro-immune disease resulting in inflammation, specific immune disregulations, cognitive problems and post-exertional neuro-immune exhaustion.

    Retracting the PACE trial study would be a good beginning of a total clean-up of the “garbage studies” which continue to do ME patients a lot of harm.

  2. What you have so carefully chosen to omit is that other gamma retroviruses were found in these patients and in the patients tested by Alter, Lo and Komaroff. You have also omitted the fact that the later revelations re: the Science paper invalidated only the name of retrovirus(es), not its/their existence. The search is now for which human gamma retroviruses may be involved. Next Generation Sequencing will help to answer that question. Yes, those who care have moved on from xmrv, but not from HGRVs. Your lack of scientific curiosity on this subject is telling. Why studiously ignore the facts and promote the illusion that nothing useful was found?

    You claim to lament the money spent on xmrv; where have you and Jonathon Stoye, the instigator for this retraction, been all these decades of nothing being spent trying to find the physical cause and treatment for this devasting disease? That is the travesty and the injustice, not that someone looked for a misnamed retrovirus and found it and many others related to it.

    The fact that you and others are at last recognizing this is a neuroimmune disease probably wouldn’t have happened if not for the Mikovits research. If it had, it certainly would have been ignored like the 2 decades of previous research pointing to that very fact. And just what could be causing this immune dysfunction? The retroviral models of causation are very compelling.

    It would be helpful if you and others writing on this subject would stop counting the number of studies that couldn’t find anything in any patient, as if this were a sporting event where the teams lob a ball back and forth and you referees count the lobs. I would like to remind you that the quality of the study determines its validity in bona fide science. Most of the 0/0 “studies” were done by those whose long held agenda is to “prove” this disease is psychosomatic. This invalidates most “research” from UK and from the CDC, as they have already decided this disease is to be unfunded, ignored and patients denigrated and disdained. Doesn’t it bother you just a little that the first quick and dirty study to refute the Science paper in question was done by “researchers” who explicitly exclude patients with neuroimmune symptoms and explicitly include those with clinical depression? Where are the calls for retraction of these multiple papers that sought to reinforce the idea that cfs/me is nothing more than somatizing and has no biomedical basis? Why isn’t Stoye calling for the retraction of those papers in his own country? Why isn’t someone calling for retraction of those sham research papers that regularly come out of the CDC claiming things like child sexual abuse is the cause of those biomedical symptoms found in cfs/me?

    The research, or lack of it, in this disease has been controlled by politics since the CDC declared the 1984 outbreak in Incline Village to be “mass hysteria.” Patients from that era are still disabled and have multiple disabling symptoms, yet the CDC continues to pretend that never happened. The CDC went from stealing and diverting Congressionally mandated funds to using the funds to divert public and medical attention from the biomedical facts of this disease. If you know this, why do you never mention that elephant in the room? If you don’t know this, it would be pertinent to educate yourself on the history of the government medical establishment’s attempt to keep all progress out of sight and out of mind, strangled by the lack of funding, as it still is.

    Today it is announced that the government will spend $10 million to investigate Gulf War Syndrome, which has many of the same symptoms as cfs/me. Meanwhile, cfs/me is being studied, once again, mainly by private donations. It’s politics once again.

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