Thursday, June 10, 2010


A transatlantic battle rages over the role of a
newly discovered retrovirus in patients
with Chronic Fatigue Syndrome

Last fall, a group of American researchers published a study in Science that offered hope to the 17 million patients with Chronic Fatigue Syndrome (CFS) worldwide.  Identifying what may turn out to be an important clue to the illness, the researchers found that 67 percent of 101 patients were infected with a newly discovered retrovirus called XMRV.  More sophisticated testing later showed that 98 percent were infected.

The XMRV study has already had global consequences.  Concerned that the retrovirus may contaminate the blood supply, health officials in Australia, Canada and New Zealand announced new policies banning patients with CFS from giving blood.  The U.S. government has stopped short of prohibition, but the National Cancer Institute has advised CFS patients against blood donation.

Despite these significant actions worldwide, XMRV’s role in CFS is still very much in question.  In fact, the New Year ushered in a severe blow to patients when British XMRV researchers published a study that didn’t find the retrovirus in even one of 186 CFS patients—and the XMRV momentum was stopped dead, if temporarily, in its tracks.

Each XMRV camp blamed the other for flaws in methodology.  Pundits took potshots at CFS patients for defending the U.S. findings.  In Psychology Today, rheumatologist Mark Borigini christened CFS patients “terrorists of health, in full jihadist mode.”  More than a hundred patients fired back comments, several asking Psychology Today editors to delete his article (they did not) and one comparing Borigini to Nazi physician Josef Mengele.  But most responses were like this one:  “Please, please tell me you did not actually compare legitimately chronically ill patients, desperate to find relief from their pain and disability, to violent radical extremists?”

Clearly, this is no run-of-the-mill scientific dispute.  These new studies are just the latest twist in a quarter-century saga of backbiting and infighting, politics and money, accusations of flawed studies and covert alliances, allegations of patient abuse and blood-supply contamination, charges of paternalism and sexism, culminating in two XMRV studies that pit a longstanding cohort of British psychiatrists endorsing a psychological cause for the disease against a longstanding cohort of American researchers endorsing a physiological one.  The antagonists include the parents of an adult daughter seriously ill with CFS facing off against an influential British psychiatrist and medal recipient from the Royal College of Physicians, who has long been a bĂȘte noire  of the CFS community.

The feud between the physical and psychological camps simmered in the 1980s and ignited in 1991, when a young researcher at the University of Pennsylvania’s Wistar Institute named Dr. Elaine DeFreitas discovered a retrovirus in the blood of CFS patients.  Whether XMRV and DeFreitas’s retrovirus are one and the same is not known with certainty, though preliminary evidence indicates that they are not.  Twenty years ago, newspapers and TV news shows latched onto DeFreitas’s finding, spreading the word that the cause of the debilitating disease had, perhaps, been found.

The jubilant atmosphere was short-lived.  The Centers for Disease Control (CDC) failed to find DeFreitas’s retrovirus in patients and controls (without using DeFreitas’s protocol) and British researchers found the retrovirus in all the controls and the patients—again without using her protocol.  Given the diametrically opposed findings, DeFreitas reasoned the problem was rooted in the methods.  But by that time, retroviral disbelievers outnumbered believers, media interest flagged and the CDC took the unusual step of publicly chastising DeFreitas.  Tangling with the U.S. government proved costly to the researcher, which scared off likeminded scientists for nearly 20 years, silenced patients and split the research community into two nonintersecting camps.

Over the years, their disparate positions have only become more entrenched, evidenced by the inevitable exclamatory XMRV headline posted on one patient forum: “The fight is on!”

Contaminated blood supply
XMRV—which stands for xenotropic murine leukemia virus-related virus—is the human version of a mouse gammaretrovirus.  The last retrovirus to jump species was HIV—from monkeys to humans.  XMRV could impact us all. In the U.S. study, 3.7 percent of a control group of healthy subjects tested positive for the retrovirus.  If those numbers hold up on subsequent studies, that will translate to 10 million people in the U.S.—nearly 10 times the number living with HIV/AIDS.  How many may become ill as a result, no one yet knows.  But since the host’s DNA becomes inextricably intertwined with the retrovirus, an XMRV infection lasts for life.

How did so many people become infected?  Although the mode of transmission has not been established, the Japanese Red Cross issued a disturbing report that XMRV has been detected in nearly 2 percent of Japan’s blood supply.  In the U.S., the National Institutes of Health (NIH) is investigating the blood supply; results are expected by the fall.

In animals, XMRV can cause serious neuroimmune problems as well as blood cancers, which afflict CFS patients as well.  Few are aware of the seriousness of CFS, though the severe abnormalities it causes—including seizures, heart failure and serious infections from a damaged immune system—have been documented in two thousand Medline articles.  That’s partly due to the disease’s trivial name, coined by the CDC.

U.S. studies: XMRV link
The first report of an association of XMRV with human disease came in 2006—from U.S. researchers studying a virulent form of prostate cancer, not CFS.  But then a German study found no such association, echoing the conflicting findings of the CFS studies.

Three years later, Dr. Judy Mikovits of the Whittemore-Peterson Institute in Reno, Nevada, led the U.S. group that connected XMRV to CFS.  The National Cancer Institute and the Cleveland Clinic replicated the study before the troika published in the prestigious journal Science.

Harvey and Annette Whittemore co-founded the Whittemore-Peterson Institute and funded the study in support of their daughter, who has CFS.  The other name on the Institute’s shingle is Dr. Daniel Peterson who, along with then-partner Dr. Paul Cheney, was the first to contact the Centers for Disease Control (CDC) about a CFS outbreak in the tony resort town of Incline Village on Lake Tahoe, Nevada, in 1984.

The Whittemores and Peterson have a lot on the line:  The Whittemores want to help patients, including their 31-year-old daughter, who’s had the disease for 20 years and requires supplemental oxygen and experiences seizures; Peterson wants to find the cause of CFS and get down to the business of researching treatments.

It’s a position endorsed by CFS sufferers, who also want to put an end to the anemic name and the 25 years of ridicule by many doctors, researchers and government agencies that treat CFS as an inconsequential affliction of whiners, hysterics and depressives.  “As a longstanding patient, a parent of a son who died of CFS and an advocate who in 20 plus years has spoken to hundreds if not thousands of patients, I want the bias aired, the bigotry gone and our stories told,” CFS patient Pat Fero says.  “To be the subject of laughter and the butt of a joke because of an illness I have no control over is a disgrace.”

British study:  No XMRV
British psychiatrist Simon Wessely and two of his colleagues in the psychiatry department at King’s College London, along with virologists at Imperial College London, conducted the British study, which didn’t find XMRV in any patients.  Wessely’s psychiatry unit supplied the blood samples.  Critics question the patient group for two reasons:  First, the psychiatrist bills CFS as a biosocial disorder, in which a person’s negative “illness beliefs” cause physical symptoms. And second, his studies often lump CFS in with “chronic fatigue,” “fatigue”  and, most recently,  “burnout,” which are entirely different entities. 

On the heels of the British study’s publication came a statement from the Whittemore-Peterson Institute questioning whether the patients in the British study actually had CFS:  “Significant and critical questions remain as to the status of patient samples used in the U.K. study as those samples may have been confused with fatigued psychiatric patients, since the U.K. has relegated ‘CFS’ patients to psychiatric care and not traditional medical practices.”

Former Villanova University professor and patient advocate Dr. Mary Schweitzer, who’s had severe CFS for 15 years and is XMRV positive, puts it more directly: “There’s an old saying in computerized statistics:  GIGO—garbage in, garbage out.  The study is only as good as the data set.”

Wessely, however, maintains that the patients in his study “fulfill the international criteria for this illness, are quite disabled and most of them aren’t working.  It has been said in some quarters,” he adds, “that the reason we did not find XMRV is because the patients at King’s College London did not really have CFS but instead had mental disorders, psychiatric illness, whatever.  On the record, I do not mind people insulting me, but I dramatically and vehemently object to them insulting our patients, and you can take it from me—and every one else on this service—that whatever CFS is, these patients have it.”

Fresh blood
Columbia University virologists Dr. Stephen Goff and Dr. Vincent Racaniello have suggested that one way to solve the XMRV puzzle is for researchers to exchange samples.  “I would be reluctant to do this,” says Dr. Myra McClure, one of the retrovirologists on the British study, a hint of a Scottish lilt in her voice.  She believes contamination of the samples could result, potentially leading to false positives.  “Please believe me, I’m not accusing [the U.S.] lab of contamination or anything like that.  I’m sure they’re very careful workers.  The way to do this cleanly, so that there’s no ambiguity, is to take fresh blood from CFS patients.  And to send one part to one lab, one part to an independent lab and one part to my lab and see what results you get.”

Dr. Judy Mikovits, the U.S. study’s principal investigator, agrees that procedure would have been ideal. The problem, she says, is that the British cohort never requested fresh blood—“or anything else”—from her lab.  In fact, maintains Mikovits, her lab has sent fresh blood to researchers around the world and would gladly have supplied it to the British.  All they had to do, she says, was ask.

Swimming to England
Both women sport impressive resumes:  McClure trained at the Institute for Cancer Research in London under Dr. Robin Weiss, a top retrovirologist in England; Mikovits trained at the National Cancer Institute under Dr. Frank Ruscetti, the co-discoverer of the first known human retrovirus, HTLV-1, and a co-author on the U.S. XMRV study.

McClure and Mikovits have been butting heads since the British group published. “Mikovits has been critical of us publishing so quickly,” McClure says, to which Mikovits responds, “McClure is the one who said we rushed to judgment.” Besides, Mikovits adds, “We didn’t judge anything.  We isolated a retrovirus.”

The British study was published after only three days of review in PLoS One, in contrast to the Science study, which was published after a six-month peer review.  In addition, the Cleveland Clinic and the National Cancer Institute replicated the Mikovits findings before the U.S. results were published, whereas the British researchers didn’t use outside labs to confirm.  The U.S. group looked for the virus with a technique called polymerase chain reaction (PCR), as well as culture and antibody testing because, says Mikovits, XMRV is difficult to detect through PCR alone.  In contrast, the British researchers used only PCR.  And unlike the U.S. study, the British study didn’t include healthy controls.

“If we had found one positive, we would have had to go for controls,” McClure explains.  “It was because we didn’t find any that there was no need.”  To which Mikovits responds:  “That is unscientific and not worthy of comment.”

McClure says the British scientists published swiftly because they “wanted to put a stop to this stampede of patients who were demanding antiretroviral therapy.”  Despite its speed, McClure is confident of the study’s conclusions.

Still, given that the U.S. and Japan have found XMRV, it seems odd that the British researchers didn’t find the retrovirus in even a few patients.  Certainly the numbers in England could be far lower than in the U.S., but zero?

“We wondered about that, too,” McClure admits. And she and Wessely concede a XMRV background rate of about 1 to 1.5 percent is possible.  “Our study doesn’t mean XMRV doesn’t exist in Britain,” Wessely acknowledges.  “It might.  But clearly our study would be incompatible—if our study is correct—with a high prevalence in this country.”

Using the U.S. study’s assays, the Nevada-based lab VIP Dx has already found, in a different cohort, XMRV in eight out of 20 British CFS patients, triggering one CFS blogger to quip: “Apparently XMRV can swim!”

Fainting couches and hate mail
Far more heated than the Mikovits-McClure face-off is Simon Wessely’s roiling feud with CFS patients that’s finally reached boiling point.

“I’m aware that some people feel that because I am by background a psychiatrist that these patients [in his XMRV study] therefore suffer from imaginary psychiatric conditions and not Chronic Fatigue Syndrome,” Wessely says.  “That is a disgraceful and disgusting suggestion, which I find insulting on behalf of our patients who have Chronic Fatigue Syndrome.  And you can quote me on that.”

Wessely’s critics point to the more than one hundred CFS papers he’s written over the course of 20 years as evidence of his underlying beliefs about the illness.  In 1989, he gave six books a mostly thumbs-down review because instead of focusing on psychological problems, they chronicled neurological and immune dysfunction in CFS—or ME, short for the malignant-sounding Myalgic Encephalomyelitis, as it was known in England for 40 years until Simon Wessely and England’s Royal Colleges of Physicians, Psychiatrists and General Practitioners favored a name change to the benign-sounding CFS a decade ago.  In his review, Wessely maintained that the disease is an updated name for neurasthenia, a 19th century affliction of hysterical women swooning on fainting couches, clasped hand to furrowed brow.

The Golden Girls
In another article that same year, Wessely takes issue with the conclusion of a two-part Golden Girls episode in which a doctor gives a relieved Dorothy (Bea Arthur) a CFS diagnosis—after two other physicians write her off as lonely or in need of a change in hair color and suggest she visit a psychiatrist.  “Most of us believe it’s a virus, it just has not been identified yet,” the third doctor tells her.  At the heart of the CFS “movement,” Wessely asserts in his paper, “is the rejection of any form of psychological causation or treatment.”  Patients say it’s articles like these that cause the CFS community—two-thirds of whom are women—to label Wessely as sexist and paternalistic.

In more recent years, The Lancet published Wessely’s “Functional somatic syndromes:  One or many?” on CFS, irritable bowel syndrome and other poorly understood illnesses. “Functional somatic” is a clinical term for physical manifestations of psychiatric disorders.  In another Wessely study, 72 percent of his CFS patients by the study authors’ own description “were cases of psychiatric disorder.”

Critics also note Wessely’s uncanny ability to affirm both sides—or neither side—of a debate, sometimes in the same maddening sentence, as if he’s Lewis Carroll and they’ve tumbled down the rabbit hole:  “What lies behind CFS is neither a virus nor psychiatry, but our idea of what constitutes a real illness, what doesn’t, and what we do to make something real,” Wessely told The Independent in 1997.

Penned British investigative journalist Martin Walker in Cultural Dwarfs and Junk Journalism, “Professor Wessely should be granted a dictionary of his own, so far has he stretched the meaning of the English language while attempting to explain that ME although a ‘real’ illness, is often first imagined.” 

Wessely gets his share of hate mail, and, in turn, his quarrel with the CFS community sometimes seems curiously personal.  “If one reads the angry responses to any article that mentions Chronic Fatigue Syndrome and psychiatry in the same breath, it is clear that the drive to find a somatic biomarker for Chronic Fatigue Syndrome is driven not so much by a dispassionate thirst for knowledge but more by an overwhelming desire to get rid of the psychiatrists,” Wessely wrote in 2009.

Offering counsel to me a few weeks after publishing the XMRV study, Wessely suggests, “My advice to you—which of course you will not take—is to wait a little [before publishing].  I think your piece might be more informative in the coming weeks as other groups begin to publish.” 

This article, “Blood Feud,” Part 1 is copyright © CFS Central 2010.  All rights reserved.   You may quote up to two paragraphs from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is from CFS Central.

Next week:  BLOOD FEUD, Part 2.  As Dr. Simon Wessely forecasted, a second group of British CFS researchers weighed in within weeks with a study that didn’t find any firm evidence of XMRV in CFS patients.


  1. Excellent maiden post! Thank you for your work! Nice illustration of Wessely's double and triple speak and his all-around scumbaggery.

  2. Prof Wessely is getting backed into a corner by both reality and his own history. You can tell by how ludicrous and dishonest and tetchy his defence is getting.

    Patients, on the whole, have never been "prejudiced" against psych interpretations. That claim of Prof Wessely's is straight slander and propaganda. Patients have, quite rightly, been strongly biased against inappropriate psych interpretations, the sloppy pseudo-scientific basis on which they are made, and the appalling consequences of them. (And let's be honest here, psychiatry has a very long and troubling track record of doing exactly that. Many serious organic disease have been classified by psychiatry as psychosomatic in some way, until it turned out they weren't. In the meantime patients paid heavily. Bottom line is that psychiatry's diagnostic procedures are too subjective and unreliable, and hostory can repeat itself, and is doing so.)

    Does Prof W ever mention the many top level clinicians and researchers (eg Prof Anthony Komaroff, Prof Nancy Klimas, etc, etc, etc) who openly reject a primary psych interpretation? No, he only claims it is those hysterical, deluded and nasty patients, who just refuse to take their medicine.

    Does he ever mention in his rants against patients (from a position of great privilege and power) that his wonderful therapies have not actually delivered anything of real substance? And that the scientific basis for them is weak, to put it politely? No, he does not.

    Truth is that his model has failed, as patients and many clinicians/researchers knew it would, and he cannot cope with it, and the implications for his profession and him personally. So he does the usual tired old trick that medicine (especially psychiatry) has always indulged in, and blames the patients for failing to accept and conform to his deeply prejudiced view of reality. How inconsiderate of us.

    Truth is that if this particular venture by psychiatry fails, then that will be a major body blow, as 'somatising' (in all its various guises) is one of the major planks of psychiatry. If it turns out to be untrue, or at least far less important than is currently claimed, then psychiatry has a massive credibility problem, and Prof W, as one of the leading proponents of that theory, will be offered up as a sacrifice by the profession, in a desperate attempt to clean up their shabby, incompetent act.

    That is what he is really worried about.

  3. Very interesting, these quotes from Wessely. Before October 8, 2009, he attributed ME to "false illness beliefs." He allowed that there might be a real infection in the beginning, but that eventually the infection clears up, leaving sufferers with nothing but hypochondria in its wake.

    Now his ME patients are well and truly sick, and to say otherwise is to insult them.

    Which is it?

    Thanks for this article. I'm looking forward to the follow-up.

  4. Very very good if only you coukd send this to the Chicago Tribune !!!

  5. I think we need to spread it.

  6. I believe our UK comrades are much too polite. Wessely still has his job, being paid by our comrades. That doesn't hold water over here.

  7. Prof Wessley fails to mention that he and those who believe ME is a psychological led illness are now few and far between. These people began by stating that those who had CFS/ME were malingerers,liars and benefit scroungers now they say we are ill, the illness is real, we did have something trigger the illness but that illness has gone and we are now psychosocially sick, (forget the bio).
    On April 24, the Massachusetts CFIDS/ME & FM Association hosted a presentation on “The Latest Research on CFS” by Dr. Anthony L Komaroff, MD. Dr. Komaroff , a professor of medicine at Harvard Medical School and Editor in Chief of Harvard Health Publications, has treated hundreds of ME/CFS patients over the past 25 years.

    Owing to Dr. Komaroff’s unimpeachable reputation and status in the medical community, patients and advocates may wish to share links to these highly organized and informative videos with their own healthcare providers.

    Easy to Follow
    You can view each session from beginning to end - or click on any of the numbered topics listed down the left side of the screen, to view only those parts. (For a preview of the topics & questions covered, see our listings, below. If you’re like us, you may start with ‘dessert’ – the Q&A.)

    Notable Quotes
    In answer to question # 21 in the Q&A session – “Would you classify CFS as a neurological disease?” Dr. Komaroff stated:

    "I would certainly say, as I have said today, that there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. So that makes it neurological. That's why I think it makes sense, as Dr. Gurwitz said, to call it Myalgic Ecephalomyelitis or Encephalopathy, because I think those two words adequately classify or describe an underlying biology that tests have shown to be the case."

    In answer to question # 26 - “With respect to the study on the presence of metabolites after exercise, how do patients with depression compare to CFS patients?” Dr. Komaroff stated:

    “As a doctor who has taken care of patients with major depression for many years I can’t recall a single instance of someone with major depression saying, ‘The strangest thing has been happening to me, doctor, whenever I do anything, any physical exertion, the next day I feel completely beat up.’ I have never heard that from any patient with any illness other than chronic fatigue syndrome.”

    ME is accepted by Who as a neurological illness under ICD10.G93.3 along with post viral fatigue syndrome and CFS (the illness)

    It is not listed under neurasthenia which is listed as a mental illness along or fatigue syndrome -chronic (the symptom) and which ICD10 G93.3 is explicitly excluded.

    While ever some Psychiatrists treat CFS (the illness) or ME as a psychosocial illness many sufferers will tar all psychiatrists, psychologists and CBT therapists with same brush as Wessely school and miss out on the opportunity to receive vital counselling given to other illness like cancer AIDS and MS as an aid to helping with a devastating and difficult to treat illness. We are the deserving sick and we do deserve to be treated like any other physically and cognitively distressing illness..Proff Wessely never mentions that his version of what he thinks ME or CFS is exactly that, just an idea .

  8. Loved this ~thanks for the good work I really liked the quote I had never heard before“What lies behind CFS is neither a virus nor psychiatry, but our idea of what constitutes a real illness, what doesn’t, and what we do to make something real,”
    I mean WTF is this man saying ? Is it English?
    And for someone with ME/CFS,CFS,CFIDS whatever you call this monster the brain fog makes it impossible to comprehend.Thanks again

  9. Thank you Mindy for being a thorough investigator unlike other journalists your unbiased approach is refreshing !

  10. Excellent work - thank you. Would you consider looking into the issue of funding for serious ME/CFS research on both sides of the Atlantic, i.e. why is there so little money put into research? What about the links to the insurance industry - who benefits financially from the lack of research, and from calling the illness "CFS" rather than ME? (see for a discussion of terminology).

    Also: please consider interviewing Dr Byron Hyde in Canada. It would be interesting to learn why his excellent work in this field appears to be side-lined by many.

    Your request for financial support is noted. I may be wrong, but I suspect that AIDS research took off because many members of the gay community were very well-off and had substantial financial clout. Sadly the ME community lacks this clout - mostly women, we are already worse off to begin with, and most of us have either lost our jobs due to the illness, or have had to take on far less demanding positions. I would like to call on the well-off public figures who have ME/CFS, but have been reluctant to talk about it, to now step forward and play a more active role, both in funding, fund raising, and awareness-raising. You have a job to do!

  11. Excellent article! Thank you!

  12. Yes if you could interview Byron Hyde that would be great--his books are such a wealth of information!

    As for the money situation here are some sources:

    M.E./CFS costs about 20 billion.

    1: Jason LA, Benton MC, Valentine L, Johnson A, Torres-Harding S. The Economic impact of ME/CFS: Individual and societal costs. Dyn Med. 2008 Apr 8;7:6. PubMed PMID: 18397528; PubMed Central PMCID: PMC2324078.

    The NIH spends about five million(it doesn't even seem like that much, I wonder if some of those studies are to "Chronic Fatigue" like the CDC was doing in the early 90s... but I digress):

  13. Wonderful work - I look forward to the next installment.

    I found this bit particularly illuminating:
    In my interview with Wessely, however, he maintained that the patients in his study “fulfill the international criteria for this illness, are quite disabled and most of them aren’t working. It has been said in some quarters,” he added, “that the reason we did not find XMRV is because the patients at King’s College London did not really have CFS but instead had mental disorders, psychiatric illness, whatever. On the record, I do not mind people insulting me, but I dramatically and vehemently object to them insulting our patients, and you can take it from me—and every one else on this service—that whatever CFS is, these patients have it.”

    He seems to be saying that if someone implies that his CFS patients have "mental disorders, psychiatric illness, whatever" - that this is a huge insult. I find this highly ironic coming from a man who has spent his career attempting to prove exactly that.

  14. Another Bravo Excellent Maiden post...
    Please remember we have the SAME Battle with the entire psych lobby and profession and all of their Big Pharma meds in the UK and the USA..
    This is going to be a BIG Battle that we need to KEEP writing about and informing the public and keep Inspiring each other to "hang in there."
    It's Pleasure to see another excellent new blogger..Welcome to our Ranks ;) I will add you to my blogroll...

  15. Wonderful first post. Looking forward to reading more. Will add you to my blog roll.

  16. Thank you for the well researched article. I look forward to the next one, and will spread the word about your blog.

    You used the phrase "25 years of ridicule." You could just as have said "25 years of contempt." A horrible way to live.

  17. Excellent article Mindy! Bless you!

  18. "Critics also note Wessely’s uncanny ability to affirm both sides—or neither side—of a debate, sometimes in the same maddening sentence, as if he’s Lewis Carroll and they’ve tumbled down the rabbit hole: “What lies behind CFS is neither a virus nor psychiatry, but our idea of what constitutes a real illness, what doesn’t, and what we do to make something real,” Wessely told The Independent in 1997." This makes me think of this article , one of the most important I've ever read and everything since makes so much more sense - but is so much more scary - in the light of that. So I think that quote is actually an example of Wessely saying what he really thinks, if what I get out of it is right. I interpret it as saying the argument as to whether ME is a real illness is irrelevant, because illness itself isn't real unless we accept it as real and thus make it so.

    I do wonder if people with ME have been targeted in this way, telling us it's not real and that we can overcome what we think we're feeling, not because they specifically think this applies to ME more than other illnesses, but simply because it came along at the right time to use as a testing ground for their theories.


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