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Neurologists Intrigued, But Not Convinced, by Study Linking Retrovirus to CFS

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by dipic, Jan 12, 2010.

  1. dipic

    dipic Senior Member

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    ARTICLE IN BRIEF

    Neurologists who specialize in infectious disease questioned the reported association between a xenotropic murine leukemia virus-related virus and chronic fatigue syndrome, saying more data are needed to confirm the association.

    The latest study in a prominent journal seeking to cut through the fog surrounding chronic fatigue syndrome (CFS) with the light of objective test data has met with remarkable skepticism among neurologists.

    In an article published in the Oct. 23 Science, investigators - past and current staff of the National Cancer Institute (NCI) and the Cleveland Clinic - reported that the retrovirus, xenotropic murine leukemia virus-related virus (XMRV), could be detected in 67 percent of 101 patients with CFS, compared to just 3.7 percent of 218 healthy controls. The researchers also showed that the patient-derived XMRV was infectious in cell cultures.

    The retrovirus was first described three years ago in a handful of patients with prostate cancer, and has since been detected in nearly one in four prostate cancer biopsies.


    QUESTIONS ABOUT THE CFS CAUSE

    But neurologists emphasized the poor track record of other agents proposed to play a causative role in the disease. More fundamentally, they questioned whether CFS, still controversial after decades of study, is a real disease entity with any organic cause at all.

    Chronic fatigue syndrome has been previously associated with a large number of microbial agents, thyroid disease, heavy metal exposure, and organophosphate exposure, said Joseph R. Berger, MD, professor and chairman of neurology at the University of Kentucky College of Medicine in Lexington. This isn't the first time that a virus has been correlated with the disease - if it is truly a disease.

    Initially linked to Epstein-Barr virus in the 1980s, CFS has since been associated at one time or another to human herpes virus 6, enteroviruses, parvovirus, and human T-lymphotropic virus type 2.

    Although the Centers for Disease Control and Prevention (CDC) estimates that 4 million Americans have CFS (of whom only 20 percent have been diagnosed by a physician), according to its Web site no diagnostic laboratory test or biomarker has yet been conclusively linked to it. (See The CDC Diagnostic Criteria for CFS.)

    It's been one virus after another, said Thomas D. Sabin, MD, professor of neurology at Tufts Medical Center and co-editor of a 1993 book Chronic Fatigue Syndrome (Lippincott Williams & Wilkins). Each time, there's been great excitement, and then it's faded. Right now we should await confirmatory evidence from other laboratories.

    An editorial accompanying the new study in Science stated that in addition to laboratory studies, epidemiological studies are now needed to determine whether this virus has a causative role, not only in this disease, but perhaps in others as well. While acknowledging the many uncertainties regarding both CFS and XMRV, the editorial - by John M. Coffin, PhD, who heads a laboratory in the department of molecular microbiology at Tufts University, and Jonathan P. Stoye, PhD, head of the division of virology at the Institute of Medical Research in London - noted that even the 3.7 percent infection rate seen in controls would add up to 10 million Americans if confirmed in future studies, a concern underscored by the senior author of the paper in an interview with Neurology Today.

    The importance of the study is that it showed a new human retrovirus infection, and that 10 million Americans could be affected with it, said Judy A Mikovits, PhD, research director of the Whittemore Peterson Institute for Neuro-Immune Disease, a privately funded institution affiliated with the University of Nevada-Reno. We have no idea how this agent might cause disease. But retroviruses are never benign and they're not ubiquitous.

    Should the link between XMRV and CFS be confirmed, she said, clinical trials could test whether treatment with antiretroviral therapy might prove beneficial. We're talking with drug companies about screening existing antiretrovirals, she said. We could have some rational clinical trials soon.


    MORE DATA NEEDED

    But neurologists said such speculation is as yet unjustified by the single paper.

    The authors did not describe the characteristics of the patients or controls, said Karen Roos, MD, the John and Nancy Nelson Professor of Neurology at Indiana University, where she specializes in the study of CNS infections. I am surprised that Science published it. It is far too premature to comment on the significance of this.

    Even the association of XMRV with prostate cancer has been put in doubt by an Oct. 16 paper published in the journal Retrovirology, in which researchers at the Robert Koch Institute in Berlin, Germany, were unable to detect XMRV antibodies in 146 serum samples from prostate tumor patients.

    But Dr. Mikovits, who spent more than 20 years at the NCI before joining the Whittemore Institute, strongly defended the integrity of her study, noting that all patients defined as having CFS had been diagnosed with it by a physician and met the CDC criteria.

    For all his doubts, Dr. Berger pointed out that the recent history of medicine has been studded with examples of diseases thought by doctors to be primarily psychosomatic or caused by stress, until evidence established an organic cause.

    I'm not ready to sign onto the bandwagon yet, he said. But they seem to be onto something. Remember, we viewed Helicobacter pylori as a cause of peptic ulcers with great skepticism, until it turned out to be irrefutable.


    The CDC DIAGNOSTIC CRITERIA FOR CFS

    Despite the lack of objective measures, the CDC list of diagnostic criteria for CFS is careful both in what it requires and excludes. The clinical diagnosis includes:

    * unexplained persistent or relapsing chronic fatigue that is of new or definite onset (that is, not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction in previous levels of occupational, educational, social, or personal activities.

    * Four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. These symptoms must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue.

    A full description of the CDC's definition, diagnostic criteria, treatment options and research updates for healthcare professionals can be found on its Web site at www.cdc.gov/cfs/healthcareprofessionals.htm.


    REFERENCES
    • Lombardi VC, Ruscetti FW, Gupta JD, et al. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 2009; 326:585-589.
    • Coffin JM, Stoye JP. A new virus for old diseases? Science 2009;326:530-531.
    • Hohn O, Krause H, Barbarotto P, et al. Lack of evidence for xenotropic murine leukemia virus-related virus (XMRV) in German prostate cancer patients. Retrovirology 2009;6:92.

    Source: Neurology Today
     
  2. CBS

    CBS Senior Member

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    Reference

    Hi Dipic,

    This looks like it might have been taken from an article. If so, so you have a reference?

    Thanks
     
  3. dipic

    dipic Senior Member

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    Shane,

    Yep, source is at the bottom (Neurology Today). It's a link so you can just click it.

    -dip
     
  4. CBS

    CBS Senior Member

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    Looked right past it. It's started out as one of those days (after one of those nights). Thanks.
     
  5. fresh_eyes

    fresh_eyes happy to be here

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    Thanks for posting this, dipic. I'm happy to see this part, especially from a skeptic:

     
  6. CBS

    CBS Senior Member

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    Neurologists and Dx Critera

    A few comments:

    I found the paper a bit sloppy. They inaccurately go on about how the authors failed to describe their patients, using this in what appears to be an attempt to diminish the impact of the WPI study. They even question Science for publishing the article:

    The "they didn't describe their patients" criticism could not be more inaccurate. Perhaps the correct way of stating this would have been for Dr. Roos to have said "They didn't describe their patients in a manner that I understood." The patients were clearly described as having met both of the Canadian Consensus and Fukuda diagnostic criteria. If Dr. Roos was talking about patient and control demographics, that's not entirely true either. From the WPI "healthy controls were zip code matched, as well as age and sex matched." This was a first report. It was supposed to put a question out there. Why would it be inappropriate for Science to put out these early findings for further investigation? The standards by which some people are trying judge this paper are so far beyond what is ever required for most first reports. The Science editors and the WPI went back and forth over this for 8-9 months. Remember that the Science editors wanted the WPI to remove all references to CFS (Dr. Bateman, 12/2/09). Now that would have been inappropriate given that the patients were chosen based on their meeting the Canadian Consensus Dx Criteria for CFS.

    The Canadian Consensus Dx criteria is very clear. Here is a link to an easy to read copy: http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf

    Take it to your doctors. Send it to editors. Post relevant sections in forums every time you you see the phrase "The authors did not describe the characteristics of the patients..."

    The author of the Neurology Today article then inexplicably refers to the CDC diagnostic criteria:

    This was an opportunity to actually educate and perhaps interest neurologists. Perhaps even provide them with a useful tool (the Canadian Consensus Dx Criteria) to help in recognizing and appropriately treat CFS/ME.

    I do appreciate Dr. Berger's statement but I am afraid that the totality of the article was; "Here is another study linking CFS to some viral agent. This has happened before but on rare occasions these aren't always dead ends so lets no close the books entirely on this one yet." Granted, that's better than nothing, or was it?

    On a personal note, my neurologist is fantastic. She has no doubts about the neural issues and while she is waiting for more info on XMRV (as she should), she can clearly see how chronic infection has caused a significant amount of serious neural dysfunction.
     
  7. Advocate

    Advocate Senior Member

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    Hi Shane,

    That was a great post!

    In most of the CFS studies I've read, the authors take up half the paper simply restating the details of whatever criteria they are using. I find myself saying yes, yes, okay, let's get to the research...

    The WPI study did it differently. They specified what criteria they were using but didn't spoon feed the details to the reader. Apparently, however, their confidence that readers and reviewers would understand the Fukuda and Canadian consensus criteria was misplaced. An early critic stated that the patients were not well characterized, and that unfounded complaint was picked up unquestioningly by people who should have known better.

    On the hand, the Wessely study is very fuzzy about characterization. It fails to discuss WHICH CDC criteria it used.
     
  8. CBS

    CBS Senior Member

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    Thanks, I am in the process of drafting a very polite e-mail to the editor, the writer and all of those who contributed to the article.

    Any other suggestions?
     
  9. CBS

    CBS Senior Member

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    LBM, I know that things have been especially difficult for you, (especially lately?). I have a wonderful neurologist who when I started to decribe the infectious, endocrine, neuro problems - stopped me. She made it very clear that she understood that I had CFS and that she understoof CFS to be an infectious disease with signficant neurological consequenses. It was a huge relief. There are good doctors our there. I do hope you can keep looking (she was probably the 5th or 6th neuro I have seen).
     
  10. CBS

    CBS Senior Member

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    Don't let misinformation go unchallenged

    I just e-mailed this to the author, one of the doctors that was quoted and the two senior editors of Neurology Today (I attached a pdf copy of "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners):

     
  11. Lily

    Lily *Believe*

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    Don't let misinformation go unchallenged

    Well done, Shane!!!! Thanks for showing us how it's done! :victory::sofa:
     
  12. fresh_eyes

    fresh_eyes happy to be here

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    I agree! Shane, you are on it.
     
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Very good letter in response.

    Tina
     
  14. bakercape

    bakercape Senior Member

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    Awesome response. Thank you for writing it for all of us with CFS.
     
  15. CBS

    CBS Senior Member

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    Thanks

    Thanks to everyone for their support. I'll let you know if I get a response.

    Shane
     
  16. Dr. Yes

    Dr. Yes Shame on You

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    Wait - It Gets Worse!

    Hey dipic, Shane and all,

    Sorry about the 'novel', but I don't think you'll find it dull

    This is a piece of junk article, though that isn't entirely surprising coming from "Neurology Today", which is a non-academic, colorful, commercial magazine (not a journal) that you often find in neurologists' offices. Such magazines seem to be aimed at neurologists who don't want to look through actual research journals but feel obliged to keep up with the field in a low-brow kind of way. I agree with Sue; my personal experience as well as my general observation has been that neurologists (as opposed to neurobiologists) have been very hostile to the very notion of CFS (and don't get them started on myalgic encephalomyelitis!).

    The above article chose Thomas D. Sabin from Tufts as one of its 'experts'; unfortunately, they could not have chosen a worse one. He's pretty much as bad as it gets, and if he 'educated' the writer, it's a wonder that the article didn't turn out even worse.

    This article by Sabin shows the kind of crap we're up against:

    http://128.121.104.17/cfs-inform/Reviewcfs/sabin03.pdf

    "An Approach To Chronic Fatigue Syndrome in Adults"; it was published in "The Neurologist" : January 2003, Volume 9, Issue 1.

    You should really read the whole thing; there are more things wrong with it than I can quote here, but I'll try! He may well be right when he says in the second sentence of the 'Background':
    ...though I question any scientist or doctor who uses the word "believe" in this context. Then he opens unbelievably sarcastically with a quote from "The Marriage of Figaro", and refers back to it later in his article; he compares CFS to the 'vapors', or fainting spells, that 18th century noblewomen allegedly suffered from, and contrasts the noblewoman with her servant girl who notes wryly that peasants like her aren't privileged to have such conditions. Sabin actually derides CFS as neurasthenia and hysteria, and actually suggests that this is why CFS is not found in "inner cities", because only effete, bourgeois types are susceptible to the neurosis that is CFS!

    Apparently, Sabin is a psychologizer on par with Wessely, but unlike the modern incarnation of Wessely he is openly contemptuous in his public writing... But I'll just let him speak for himself:


    OK, kids, see if you can find anything right in that quote! Bear in mind that this was accepted for publication, and is intended to educate neurologists about our 'disease' (his quotation marks, not mine!). And remember that a decade before this the guy edited a book called "Chronic Fatigue Syndrome", yet compares "alleged" CFS epidemics to female mass hysteria:

    He also makes one false assertion after another about the lack of any physical findings in CFS, while diluting the few findings that he does admit to:

    Guess who's one of the authors he references above? That's right, SW! That in itself is not as disturbing as the number of others who seem to think likewise. The misinformation in this article is staggering. Among other things he insists that the viral onset cases, which he calls "the most convincing", are also the least severe, tend to improve in 3-5 years, and have a "much better" prognosis. He asserts that the term M.E. has been largely "abandoned" (he wishes), and states that swollen lymph nodes, fevers, and other "physical findings" are "not frequently seen in the patient with ordinary CFS." (What is "ordinary CFS"??) And the contempt that many doctors feel for CFS patients is evident in many places, as it does when he discusses how patients describe their symptoms:
    "A plethora of bizarre adjectives will often follow if the patient is given enough time."

    Then it gets worse! He echoes the UK psychologizers in advising doctors not to order labwork on any viruses, and in fact to make "a contract" with patients that will establish a limited amount of time and tests that doctors will be willing to spend or do. Note the similarity between this and the "negotiation" with patients Trudy Chalder and Dr. Wessely (his wife) recommend to doctors in their training video now on YouTube. He discourages doctors from prescribing antivirals, and says there is no good evidence of acyclovir ever helping - his single source for this powerful statement is one paper by Stephen Straus from 1988!

    Finally, he comes out and quotes Wessely directly, then makes a series of... well, read on:

    In other words, there's no easy way to tell us it's all in our heads. What he says "must" be told firmly to patients is:

    By the way, he distorts (or is unaware of?:rolleyes:) the brain scan research findings, advising neurologists not to order any MRI's, and omitting to mention the famous hypoperfusion findings in CFS (in fact, somehow he manages to say that hyperperfusion has been found in CFS, and hypoperfusion in depression!)

    But here's the one that got me:

    Sabin closes by saying that CBT and GET go together "nicely" as the best treatment plan, but blames patients for the high dropout rates, and so on. His source for these statements is Wessely, again.

    So is Sabin drinking Wessely's Kool-Aid, or are they both drinking someone else's? I've posted all this because I am convinced that Sabin is by no means an unusual case; I think it is becoming increasingly apparent to most of us (if it wasn't already) that the majority opinion in medicine is tilted against us, and that what doctors say to us or in public usually isn't what they say to one another when they train or make policy. The operative thinking behind the UK training videos is going on in the heads of probably a majority of doctors. Note that Sabin is an American, and not a psychiatrist. And the promoters of this thinking are, as far as I can tell, linked to insurance companies (and almost certainly a few other interests on which more light needs to be shed).

    Anyway, Shane, I hope this gives you a little more ammunition. I couldn't find anything on Roos - I mean NOTHING, no link to CFS whatsoever, from a brief search. You might mention to the editor/ writer that in this age of "balanced journalism", this article was more like Fox News! And that "Neurology Today" (which I suppose you will politely avoid calling waiting room tissue paper) should aspire to present the most significant scientific findings to their readership, and thus should have included actual neurobiological researchers working on CFS in their piece.

    But I hope it is clear that there's a much bigger problem behind the article; all those bad articles on CFS have behind them influential doctors who dismiss ME/CFS and promote only CBT and GET in order to 'fix' the way we 'think' about our bodies. The authors of the Canadian Consensus documents knew this full well, which is why they (well, not Klimas) urged doctors to end their association with CBT and the psychosomatic model on which it is based.

    Until the medical establishment as a whole recognizes the unscientific, unethical nature of using an automatic "default" of psychosomatic diagnosis when there are no clear physical findings, we will continue to struggle with ignorance and even cruelty from medical practitioners and society alike.

    ------------------------------------------------------------
    (ETA -- WHAT?? You already mailed the letter? Oh well. At least the bigger point still stands. So I don't have to feel that bad...:tear:)
     
  17. fresh_eyes

    fresh_eyes happy to be here

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    A quick thought on the above. Perhaps in the old days those who had the luxury of rest had 'neurasthenia', while those who kept pushing out of pure economic desperation ended up with something worse, and more clearly diagnosable - a heart attack, say. Certainly the rich weren't (and aren't) the only ones subject to life-altering breakdowns in health.

    I've completely revised my former view of neurasthenia a symptom of patriarchal repression now that, you know, I have it. :Retro wink:
     
  18. CBS

    CBS Senior Member

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  19. sleepwalking

    sleepwalking

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    My neurologist has been the most supportive of all of my doctors. When I couldn't even get my PCP to test me for EBV and Lyme a few years back, out of frustration I asked my Neurologist to test me and he did. Negative for Lyme but positive for EBV and Mono.

    I thought he would be enthusiastic about the XMRV news and perhaps might help me get tested but when I asked him about it his reply was "We've heard these things before. If there is something to it they will let us all know".

    I think that statement is probably the general consensus at this moment in time with Neurologists.
     
  20. starryeyes

    starryeyes Senior Member

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    What I saw when I read this article and Thread:


    That
    sounds very familiar! They sound like a bunch of Wessely-Reeves psychs.

    There are no Customer Reviews at Amazon for this book. Does that mean no one has read it?

    :victory:

    And what is it that the neuros think is wrong with the WPI, NCI and Cleveland Clinic XMRV studies?

    Say that again? I'm quite sure they did! Am I wrong?

    it doesn't look like I'm wrong and ComeBackShane agrees:

    yep! lol

    That would be because they didn't do testing the same way as the Americans.

    Lol!!~ And still this quack is being quoted in articles as if he knows what he's talking about? You could pay some people a million dollars and they still couldn't buy a clue.

    Then they list the CDC criteria? Puhleeze! Of course as ComeBackShane wrote they should have listed the Canadian Definition of CFS. Anyone who lists the CDC and not the Canadian Defin. Is NOT on our side!

    Thank you, Shane, for writing a letter to the author of the article at Neurology Today and educating him about the Canadian Definition and for pointing that the authors did describe the characteristics and differences of the patients and controls very well!

    I'm glad you and sleepwalking finally found a good neurologist. It took you 5 or 6 I see. The one I saw humiliated me and made me feel like he saw me as a “disgusting, neurotic” human being. Sound familiar anyone?

    Shane, I didn't know you were a former employee at the Stanford Center for Research in Disease Prevention and Stanford Research Affiliate and that your research career was cut short by severe CFS.

    Thank you so much for taking a stand and for being here! We are lucky to have you on board. :)

    Dr. Yes... wow! So that's who Sabin is? I recall now.. I knew his name sounded familiar!
     

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