TWiV 94: XMRV with Dr. Ila Singh

August 8, 2010

Hosts: Vincent Racaniello, Alan Dove, Rich Condit, and Ila Singh

Vincent, Alan, and Rich speak with Ila Singh about the new human retrovirus XMRV, and how her laboratory is studying its association with prostate cancer and chronic fatigue syndrome.

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Weekly Science Picks

Alan – The new Federal Register site (see also regulations.gov)
Rich – The Florida Museum of Nautural History Butterfly Rainforest
Vincent – JoVE, the Journal of Visualized Experiments

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  • Amilia

    I have CFS. I would like to be in this study with the HIV drugs. We all just want a chance to feel better.

  • LC

    Patients know full well that science takes time, and how it works. Unfortunately, when it come to CFS, this is not how it works. It is time that scientist's started to understand that CFS patients don't want things to happen quickly, they want things to actually happen. We want things to be certain, we don't want the norm of uncertain, unproven psychobabble. Also, we do not object to the idea that patients get depression or anxiety, some do, but it is not the cause, and should stop being used to excuse the absence of biomedical research.

  • ErikCarter

    I wouldn't say there's an absense of biomedical research, I just think that groundbreaking results lately have been few and far between, making it look as though there is less research being done than there really is. There are lots of scientists doing XMRV research, and of course the problem of XMRV and its potential causation of CFS is very well publisized. On this podcast alone XMRV has been featured in no fewer than 8 episodes (found by a simple keyword search). In comparison, HIV has been featured in 10 episodes.
    I personally have never heard of biomedical research on XMRV being halted because of a claim that depression or anxiety cause CFS. Probably most virologists understand that it's a virus well worth studying and that the correlations between XMRV and CFS, though not huge, should be researched thoroughly.
    Regards,
    ~Erik

  • Robin

    I had heard that Ila Singh was doing research but I had no idea she was being so thorough. It is a relief that independent researchers are seeking to replicate and validate the Science study, and even go beyond. Exceptional interview, thank you so much.

    Incidentally, motion sickness or seasickness is not a somatic reaction to seeing other people vomit. It is commonly thought to be a neurological response to discrepancy between the sensory perceptions of motion, for example if you're in the cabin of a ship — the inner ear senses motion yet the eyes don't. People can become ill from motion in the absence of other's affliction.

  • ixchelkali

    This was a great episode. Some of the things I've read about XMRV make more sense to me now that I've heard Dr Singh explain them. I hope you will have her back soon. This was one of the best discussions of the state of XMRV science today that I've heard. Thanks!

    I enjoyed this week's science picks, too. I hadn't come across JoVE; what a bright idea.

  • Alan Dove

    Sorry for the confusion about seasickness. My point wasn't that it's exclusively a response to seeing other people vomit, just that it's a neuro/psych condition that can occur in clusters. In other words, the occurrence of a cluster does not automatically exclude a psychiatric cause. Other purely psychiatric conditions can also cluster, with results that range from amusing (koro) to deadly (panic).

    Of course, none of this proves that CFS is entirely psychiatric, either. It could easily have multiple causes, even in a single patient. This uncertainty is one of the many reasons CFS is so difficult to study.

  • Annonymous

    Thanks for the informative podcast. I am anxious to learn about results for XMRV testing on tissue of people in the morgue Dr. Singh mentioned. I am watching research to see if XMRV will be linked to cervical cancer like prostate cancer in the future, since I think it would shed light on the retrovirus and how it operates. I am studying epigenetic mechanisms in disease and see in theory XMRV may interact with other viruses as well as trigger normally silent endogenous retroviruses to create disease. I wonder if XMRV will evolve from an exogenous to an endogenous retrovirus in view of epigenetics?

    I am involved in reserach on Herv's in neuropsychiatric and neurological disease and will undergo testing for Herv-W and XMRVsoon. I am curious to learn the results in view of my diagnosis with CFS and high incidence of cancer, autoimmune, and neuropsychiatric illness my family. I think the research will shed more light on the role of Herv's and XMRV in major disease one way or another. A podcast on the mechanism of endogenous retroviruses in disease would be great if you could manage it in the near future by the way. I tuned in to your podcast on the subject a while back and would like to learn more by you and other experts.

  • Mark

    I am a scientist, and I have to say that I felt that Vinnie, Rich and Alan seemed very insensitive to this point. I understand what they're saying: these are serious drugs to take. Perhaps what they don't understand fully is that many CFS patients can barely lead their lives. If you can't hold a job and are doing your best to just exist, you might be willing to risk taking antivirals, even if there are big side effects. And even if it hasn't been proven scientifically yet. If you can barely take a shower, you aren't too interested in assays for viral load: you would just like the chance to feel well enough to go to the supermarket again, if it's possible. Patients should be given this choice on their own, and we should be studying the outcome to the best of our ability scientifically. The clinical observations will give us an indication as to whether it's worth spending the time to do more detailed studies.

    Don't take my criticism too personally, fellas: it was a great episode. Ila was awesome and you all did a wonderful job as usual.

  • E. Johnson with ME/CFS

    Dr. Dove,
    I know that no single definition of illness/disease is entirely satisfactory. Still, I think it is fairly clear that ordinary nausea and vomiting shouldn't be considered an illness state, but should rather be considered more or less a phenomenon sui generis. I agree that the sight of a vomiting person induces nausea and vomiting, but it is highly likely that this is just the integration of useful information into the (usually mostly unconscious) “decision” to become nauseated and perhaps vomit. Suppose my friend and I are comrade australopithecines – we will typically eat together with several others and may frequently run the risk of eating food that is microbially contaminated to a greater or lesser degree. It is also commonplace for mammals to frequently eat, sparingly when necessary, plants that are mildly toxic (or merely noxious in some way). Naturally, plants often like to be mildly or severely toxic to at least some herbivore taxa, because it limits herbivory – and animals, correspondingly, love having portfolios of highly promiscuous CYP oxidases which can each “damage” (and solublize for excretion) broad arrays of small molecule species, be they toxic or not. Within a single plant taxon, the concentration of offensive chemicals may vary by season, or by individual plant.

    So in short, come mealtime I the australopithecine often deal with sub-optimal information about whether or not I should purge my dubious ingesta (or at least stop eating, or at the very least slow down). If I can be so astute as to note the queasiness, or outright technicolor yawns of my fellow anthropoids, I have gained additional information that can be significantly fitness-enhancing. The distressed individuals may have started eating earlier than me, or may have eaten faster, in which case their present is my future, but I can still act now to minimize my fitness-reducing dose of intoxication or of microbes. So if I'm feeling well when I notice the discomfort of my friends, I will just become a bit queasy and slow down a lot – and if I am already highly nauseous, the discomfort of my friends will push me to resolve the matter.

  • By the way,

    many thanks to all for a very fascinating discussion. I look forward to hearing any or all of the guests on XMRV again sometime. The Alter paper would make an interesting occasion, or the publication of Prof. Singh's work. I have of course been awaiting all of these publications with exactly the halcyon philosophical tranquility recommended in the podcast ;) OK, the opposite of that. Once the three positive papers widely spoken of come out, I think I will be calm about everything else, including the causation question.

  • Frogsquire

    Erik, I think you possibly don't appreciate that virtually no money has been spent on biomedical research on ME in the last 20 years. And indeed this current research was only possible due to private funding. There is a good deal of evidence that in fact biomedical research has stomped on by certain influential psychiatrists. So whilst we are all happy that things are moving forward, do not underestimated the fear from people suffering from this terrible illness that those same psychiatric lobbyists will fight tooth an nail to control this illness – some such have Wessely have built their entire careers on such. One could call almost fraudulent studies – designed to fail – have already come from Wessely et al, this shows that the fear is well founded.

  • LC

    In the UK the MRC (Medical Research Council) has not funded biomedical research into this disease for 10 years now. The total that all the UK ME charities can raise in one year is about £400,000.

  • LC

    I should also add that I was talking about research into ME/CFS, not XMRV. I did say this originally, but you obviously missed it.

  • Guest

    Alan, please be clear: ME/CFS is not a psychiatric condition.
    It is certainly a travesty that opportunistic segments of the psychiatric profession have latched onto this orphan disease, awaiting definitive biomarkers, and diverted government funding (all government funding in the UK, lion's share of government funding in US) to their unprovable psychiatric fictions for two decades. It is past time that this travesty end.
    Amusingly, the psychiatrists accuse their patients of 'false illness beliefs', yet to an outside observer, clearly those misguided most by false beliefs about the illness ME/CFS are the psychiatrists themselves.
    Just put it out of your mind for good. ME/CFS is not a psychiatric condition. You will not be able to think clearly about this disease until you grasp this fact.

  • Leonard

    Thank you all for discussing this very difficult and debilitating disease.

    I wanted to mention that a neuro/psych condition that can occur in clusters is often termed mass hysteria. Psychiatrists McEvedy and Beard in 1970 proposed this as a cause for outbreaks of Myalgic Encephalomyelitis,(1) which is generally considered to be what is now called Chronic Fatigue Syndrome in the United States. This hypothesis has long been rejected by leading researchers.(2) Additionally, this hypothesis does not explain why ME/CFS outbreaks were occurring in Incline Village, NV and Lyndonville, NY during the same time period in the 1980's. Neither the treating doctors nor patients were aware of the other outbreak, or even what the illness was. Further, hysteria does not explain why ME/CFS patients often have low natural killer cell numbers and function; SPECT scan abnormalities; extremely low VO2 Max stress test scores; low blood volume; neurally mediated hypotension; abnormal immune cell ratios; lymphadenopathy; gray matter volume reduction, and other persisting biomarkers.

    I believe the main reason that ME/CFS is so hard to study is that the NHS and CDC has broadened the diagnostic criteria with the Oxford criteria,(3) and The CDC Empirical Definition(4) of ME/CFS so that they lack specificity and include persons with depression and simple fatigue.(5) Confounding people with biological illness and persons with psych conditions in ME/CFS studies and not being able to identify them in the data sets indeed makes conclusions very difficult to interpret. The CDC apparently refuses to acknowledge that their studies do not distinguish between the patient groups.(6) The Canadian ME/CFS 2003 criteria(7) was created to try to correct this issue by excluding patients that have mental illness.(8)

    1. McEvedy CP, Beard AW. Concept of benign myalgic encephalomyelitis. BMJ 1970; 1: 11-15.

    2. Evengard B, Schacterle RS, Komaroff AL. Chronic fatigue syndrome: new insights and old ignorance. J Intern Med. 1999;246:455-469. doi: 10.1046/j.1365-2796.1999.00513.x.

    3. Sharpe MC, Archard LC, Banatvala JE, Borysiewicz, LK, Clare AW, David A, Edwards RH, et al. A report-chronic fatigue syndrome: guidelines for research. J R Soc Med 1991;84:118-21.

    4. Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome – a clinically empirical approach to its definition and study. BMC Med 2005, 3(1):19.

    5. Leonard A. Jason, Natasha Najar, Nicole Porter, and Christy Reh: Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition. Journal of Disability Policy Studies September 2009 20: 93-100

    6. Mindy Kitei: Q & A with CDC's STEVE MONROE. http://www.cfscentral.com/2010/08/sunday-monroe-5-am-f..., August 8, 2010

    7. Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles ACP, Sherkey JA, van de Sande MI (2003). Myalgic encephalomyalitis/chronic fatigue syndrome: Clinical working definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome 11 (1): 7-97. doi:10.1300/J092v11n01_02

    8. Wyller VB (2007). The chronic fatigue syndrome–an update”. Acta neurologica Scandinavica. Supplementum 187: 7-14. doi:10.1111/j.1600-0404.2007.00840.x

  • KFG

    It's a shame you came out with this comment. You have an enjoyable forthright style which has served you well on other podcasts. Unfortunately the “seasickness” subject just wasn't appropriate – there was no need to raise psychomatic issues in this podcast. The key thing about so-called “CFS” research is the cohorts used in the studies. Researchers working in the area, both good and bad ( and there are plenty of the latter ), know that the patient selection is the key to the whole enterprise. Bearing this in mind, William Reeves meddling with the diagnostic criteria was one of the most ill-advised and, for those with the illness some prefer to call “ME” ( incorrectly ), counter-productive measures yet seen. Anyone who looks into “CFS research” – such as it is – will be shocked at the level of manipulation possible with patient cohorts. It's apples and oranges. You don't even get as far as the laboratory methodology – what's the point when you have such a wide variety of patients? If XMRV is eventually shown to cause any pathology this will reduce the current sea of “CFS” patients by a certain percentage. I believe science will win out – the problem is that so little proper science has been done in “CFS”. This has allowed quacks, fraudsters and scientists of lesser skill to do pretty much anything they wanted for many years. And of course we have Psychiatrists – I can't imagine why losing lifelong patient referrals ( because it significantly improves no-one with the illness I'm referring to ) would mean they would have any kind of stake in this….
    Please – take a good look at what goes on. You guys are exactly the sort of proper scientists we need looking into this illness – whether XMRV is a bust or not.
    It's all about the diagnostic criteria and the cohorts. You will simply not believe some of what goes on….

  • Alan Dove

    Many folks here seem to be laboring under some serious misconceptions. First, and by far most disturbing, is the subtext that calling a disease psychiatric is tantamount to calling it bullshit. I don't believe that, and neither should you. Patients with chronic depression, schizophrenia, or bipolar disorder (to pick three examples off the top of my head) suffer from debilitating illnesses. Even insurance companies, who have an enormous motivation to deny a disease's existence, don't try to claim that psychiatric illness is fake.

    When I say that there's evidence for a psychiatric etiology, I mean exactly that – CFS could be a psychiatric disease, just as schizophrenia, depression, and bipolar disorder are. Psychiatric disease is real disease.

    The second misconception is that “psychiatric” and “somatic” are somehow mutually exclusive. The brain is part of the body. Immunological markers shift significantly in people with depression. Conversely, many infectious diseases cause behavioral changes in their hosts. It's a two-way street. Yes, there are studies showing hematological changes in CFS patients. I'd actually be kind of surprised if there weren't.

    The real question we'd all like answered is: what's the best way to treat and/or prevent this disease? Latching onto the first shred of data that fits your own preconceptions, and then using that as justification to ingest toxic substances that may not help, seems like the wrong approach. That's all I'm saying.

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  • Leonard

    Please specify where any of the many folks responding here called psychiatric disease bull shit, not real, or fake. I've read over all the comments four or five times and have not been able to find a single instance.

    Saying that ME/CFS is not a psychiatric disease does not belittle psychiatric disease. Serotonin levels in ME/CFS are elevated, low levels of serotonin are found in depression. Cortisol levels in ME/CFS are opposite to what is found in depression. Taken as a whole, the hematological and immunological markers suggest a reaction to an infectious agent,(1) not a psychological illness.

    Persons with ME/CFS intimately know the brain and body are one in that they have many neurological deficits such as short term memory loss and other cognitive and mood disturbances along with other physical symptoms. However, if you ask a PWME/CFS what they would do if they felt well, most would rattle off a list of activities they would love to get back to. Most persons with major depression could not because they experience anhedonia, an inability to experience pleasurable emotions from normally pleasurable life events.

    Many PWME/CFS have had this disease 20-30 years or longer. They have tried everything from antivirals, (Ampligen has shown efficacy in a subgroup,(2) but the FDA refused the NDA.(3) How can the FDA possibly approve an intravenous antiviral for a condition where the CDC Empirical Definition can't differentiate persons with ME/CFS from persons with psychiatric illness?) to Zantac and everything between, including psychiatric treatments. If psychiatric treatments had worked PWME/CFS would have gladly gone back to their previous healthy lives. Patients are now demanding to be listened to for heaven's sake. Dr. Marc Loveless states, “CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”(4)

    PWME/CFS aren't latching onto the first shred of data that fits their preconceptions. Data has been published for almost 20 years that for many the illness is likely infectious and a virus. Envision being ill for 20-30 years with an illness that makes you as sick as AIDS patients two months before death. Envision being ill for 20-30 years and having your most productive years lost forever. Envision being ill for 20-30 years and watching other PWME/CFS die young from cardiomyopathy's, rare cancers, and neurological illnesses. Envision being ill for 20-30 years, being 61 years old, and being faced with the choice of taking toxic drugs to possibly make you better, or wait until when?. Anti-viral treatment is a personal choice for PWME/CFS, the same choice that AIDS patients had to make when it was experimental for their illness in the 1980's.

    I agree the real question is, “what is the best way to treat and/or prevent this disease”. Unfortunately the real struggle has been who gets the meager scraps of research money for the illness, the psychiatric researchers, or the infectious disease researchers. My vote goes to the infectious disease researchers.

    1. Buchwald, D., et al. 1992. A chronic illness characterized neurological, and immunological disorders, and active type 6 infection. Ann. Intern. Med. 116:103-113.

    2. Strayer DR, Carter WA, Brodsky I, Cheney P, Peterson D, Salvato P, Thompson C, Loveless M, Shapiro DE, Elsasser W, Gillespie DH. A controlled clinical trial with a specifically configured RNA drug, poly(I)opoly(C 12 U), in chronic fatigue syndrome. Clin Infect Dis 18(suppl 1):S88-S95 1994).

    3. George, John: FDA rejects Hemispherx's chronic fatigue drug Ampligen. Philadelphia Business Journal. (Modified: Thursday, December 3, 2009).

    4. Dr. Marc Loveless, infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, Congressional Testimony, CFS Awareness Day, May 12, 1995

  • Guest

    I'm sorry Alan, but you are engaging in the typical doublespeak that has blighted the ME/CFS field for decades, with patients left in disability and decline as collateral damage whils
    t scientists who should know better engage in this sophistry.
    Everyone knows that psychiatric illnesses are real illnesses. The point is that ME/CFS is not a psychiatric illness.

  • CD

    The other alternative is to use patients who don’t have a relapsing/remitting form of the disease. This must be a tiny minority. They do exist but can be easily avoided.

    I’m met very few patients who have ever had a remission. It won’t be hard to find many hundreds of patients for research trials who have never had any form of spontaneous of relief over decades, since an acute viral onset.

  • CD

    Alan,

    Thanks for the great show and your willingness to engage with listeners.

    If someone developed vomiting as a response to seeing others vomit and could not stop, my assumption would be that they would be admitted to hospital and be give hydration, nutrients, drugs if needed and also tested for other possible causes etc.

    They would not be left to die due to the uncontrollable vomiting or told to see a psychiatrist as the only form of treatment?

    The reason you may have hit a raw nerve here is that many people with CFS (including those who are testing positive for XMRV) are only being offered psychological treatment. It’s not helping us to get better. We’ve tried that.

    Unlike the person being sick repeatedly, we are offered no help for the physical consequences – regardless of the cause. We are also not being offered immune system testing or pathogen testing. We are not being treated and treated for physical research findings such a low blood volume.

    It’s a sensitive point for patients and one that I hope you will understand.

    Great show as I said and please keep following the story as it develops.

  • LC

    Alan thank you for taking part in the podcast.

    I just want to point out, that it is not patients who are separating the mind and body, it is a small group of psychiatrists who are.

    “Although the distinctions between physical and psychiatric illnesses often are not useful or accurate, their differentiation is in part the basis for a diagnosis of somatization.” Chronic Fatigue Syndrome: A Review: http://ajp.psychiatryonline.org/cgi/reprint/160…

    Patients do not object to a psychiatric diagnosis, if it is correct. We know that psychiatric diseases are organic, and real. That is not the issue. It is a misconception about patients that was started by the same small powerful group of psychiatrists. Please do not confuse their attempts to label us, with are true demands.

    In the UK CFS/ME is the only disease to have the following words written into it's guidelines, as if it were different from other diseases:

    “biopsychosocial”

    Why do doctors need to be told this, if every disease is of course biopsychosocial?

    ME/CFS patients have been denied solid research for years. Truly this is no lie, or misunderstanding. People have continually obstructed those who wish to look at the abnormalities found in these patients, and a great many of these do not reside in the mind/brain. It has always been suspected that the disease had a viral cause. Whether XMRV is it, or part of it, is still to be discovered.

    What is not well understood, is that we already have biomarkers for the disease. Patients can already be grouped by their list of biological abnormalities. The question every scientist should be asking of the DHHS, and the NHS in the UK, is why are these not being used.

  • D.Y.

    My thanks to Dr. Ila Singh and to Dr. Racaniello for providing this excellent program.

    I am, however, concerned by a few of the statements made above by Alan Dove:

    “When I say that there's evidence for a psychiatric etiology, I mean exactly that – CFS could be a psychiatric disease, just as schizophrenia, depression, and bipolar disorder are.”

    Alan, please do not contribute to the facile reasoning that has plagued conceptions of CFS since the CDC/NIH involvement in the late 80's. I urge you to read more about this disease from specialists in the field; a good place to start would be the Canadian Consensus Document for ME/CFS (an overview can be found at http://www.mefmaction.net/documents/ME_Overview…). To understand why ME/CFS epidemics could not have been psychosomatic in nature, I recommend that you read the detailed clinical evaluations of these outbreaks, for example in Hyde et. al.'s “The Clinical and Scientific Basis of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome” (Nightingale Research Foundation, 1992).

    Whether your statement was hypothetical or pure conjecture, it would require some basis. Yet I do not think anyone can seriously propose that there is such a basis in CFS after thorough analysis of the data on its clinical presentation and progression, epidemiology, laboratory and research findings. There is no psychiatric disease that can account for these data, and thus psychosomatic interpretations have no explanatory power, and have no value as alternative hypotheses for causation and persistence of CFS. Even speculation along these lines would presuppose the invention of an utterly unique psychosomatic entity that somehow manages to – among other things – produce highly specific, shared signs and symptoms across broad patient populations (including neurological dysfunctions), mimics infectious onset and relapse right down to the presence of measurable fevers and swollen lymph nodes, and causes both increases in inflammatory cytokines and measurable reductions in physiological capacity after single or repeat exercise tests. And it hardly bears pointing out that the postulation of a disease entity for which there is neither scientific precedent nor explanation as an explanatory hypothesis for another disease lacks scientific fidelity.

    Furthermore, you stated:

    “The second misconception is that “psychiatric” and “somatic” are somehow mutually exclusive.”

    In which case, I must point out, the delineation of CFS as a psychiatric disease (like schizophrenia) would break down as well.

    Lastly, you argued that:

    “The real question we'd all like answered is: what's the best way to treat and/or prevent this disease? Latching onto the first shred of data that fits your own preconceptions, and then using that as justification to ingest toxic substances that may not help, seems like the wrong approach. That's all I'm saying.”

    The real question as you have stated it cannot be answered if we cannot agree that this disease is not psychosomatic. The excellent research by Dr. Singh and others will increase our understanding of the pathophysiology of this disease. In over two decades since the labeling of this disease as CFS, however, not one explanatory psychopathological model has been proposed, nor have even the speculations by advocates of such views stood up to scientific scrutiny. The psychosomatic paradigm is based upon unfalsifiable preconceptions. Using that as a justification for ingesting psychopharmaceuticals and prescribing psychotherapy aimed at eliminating “false illness beliefs” is thus equally, if not more invalid than clinical trials with antiretrovirals for those who test positive for XMRV. I will close by noting that the findings about XMRV in CFS are not the first “shred of data” for a pathogenic or other physical cause of this disease by any stretch of the imagination.

  • Empress_iii

    Many thanks to Dr Singh. It is scientists like her who will make a difference in this swamp of politically inspired pseudo-research.

    Alan, your comments indicate that you may know a lot about science but nothing about the politics of science and the politics of funding research. But thanks for making your bias known so that we know in future where you’re coming from.

    The CDC has been dishonest, fraudulent and unscientifically political in its approach to ME/CFS at least since 1984 when they summed up the Incline Village outbreak as “hysteria”. Drs. Peterson and Cheney spent their own money on brain scans, way back then, and found “punctate lesions” in most of their patients. You really want to argue that these brain abnormalities are psychosomatic? Any disabling illness may lead to psychological symptoms…cancer patients get depressed…but to turn it around backwards and attribute the illness to the symptoms that develop after the illness has been present for so long is simply not scientific. It’s a political viewpoint.

    Any honest scientist working in the National Center for Emerging and Zoonotic Infectious Diseases, which includes the Chronic Viral Diseases Branch, where the CFS program is housed would want to investigate these findings, but the CDC has never done so and will not acknowledge the findings of those who have. Since the Congressional hearings that found CDC totally misappropriating CFS research funds in the 1990s, these so-called virologists and retrovilogists have been spending their research funding on psychiatric pseudo-studies that attempt to explain away all the biomedical findings of honest researchers as somehow due to childhood abuse or poor coping styles of the personalities of those who have ME/CFS. Even the recent paper that claims patients’ personalities are at fault came up with the statistic that only 30% of their cohort has these “maladaptive” personality disorders, yet they came to the conclusion that maladaptive personalities cause CFS!!!

    As for stem cell treatments for CFS, pick your jaw up off the floor and get educated. Dr Cheney, who has been trying to help patients with the biomedical illness of CFS since 1984, has sent at least 30 patients for chord blood and autologous stem cell treatments. Several have recovered enough to go back to work full time, others have improved enough to work part time and several have improved enough that they are no longer bedridden. Only two have had no improvement. Others have improved to some degree. There is no other treatment with that kind of success record. Even if it’s not permanent, these patients are having, at the least, one good year and counting. And the cost is 1/3 the cost of 18 months of Ampligen, another treatment that is having some success, but is still “experimental” after several decades. (How can the FDA approve a drug for a disease the CDC says is a mental illness, after all…?)

    Of course stem cell treatment is still experimental. What other choices do patients have? The CDC just came out with another anti-patient, anti-science paper saying that none of the tests working clinicians use to find out which biomedical abnomalities to address, and that none of the treatments that have been found to help a significant number of suffers, is acceptable to CDC. This effectively tells insurance companies and the Social Security Admin. that people who aren’t wealthy enough to buy independent health care cannot get ANY treatment for their symptoms. With this one paper, the CDC effectively casts all the non-political research done on this illness into limbo or attempts to disappear the validity of it. The CDC is the whore of politically motivated science. We just don’t yet know who is paying them…the insurance industry or its lobby?

    Why would the insurance industry want ME/CFS to be a psychiatric illness? Because according to CDC, the treatment is pills, talk therapy for up to 6 months and….get this…exercise! People who don’t have the energy to bathe or cook are being told they are “deconditioned” and this is the cause of their fatigue and if they just push through the pain and heart palpitations, and in some cases, the heart attack induced by exercise, they’ll recover. And if they don’t, then they’re just faking it. They are denied disability insurance payments and health care of any kind.

    This, Alan, is the reality of living in a CDC controlled world view of this illness. Not only do patients not get humane treatment, many either get no treatment at all or get “treatment” that harms them. Consuming serotonin reuptake inhibitors when your serotonin is already above normal is not theraputic.

    Just as the horrible fatigue of this illness PRECEDES the “deconditioning”, so does the neurological damage PRECEDE the psychiatric symptoms. Twisting it around backwards is what the CDC, and the UK psycho-quacks, have been doing for decades while lives are destroyed by this illness.

    Alan, your equating CFS to motion sickness or koro is insulting to those who are educated about CFS, although it appears to be amusing to you. Would you equate the dementia of untreated syphilis to psychosomatic causes?

  • Robin

    Remission can just be improvement — a lot of patients do improve at various times without complete remission or near remission. I don’t think that’s as uncommon as you do!

    Another issue eliminating patients with a dynamic level of symptoms would be the fact that they may be a distinct subset. Would they respond better, or worse, to treatment? Should they be discluded at all? Perhaps the drug trial would fail on the static patients but do well with the dynamic patients.

    The other problem is that self-reportage studies aren’t always very reliable and are subjective. What “feeling a little better” , “feeling moderately better”, “feeling a lot better” means to different people can mean very different things. Even on patients with a stable energy and symptom level, actometers would be very useful.

  • CD

    One of the chaps on the video asked about changes in attitudes since the 1980's in patients to experimental treatment.

    I've been disabled since the 1980's as part of a cluster outbreak and tested XMRV+ this year.

    We have not changed since the 80's. All of us want to get well again and be able to work, socialise as before. As time goes on it becomes more important for some of us to takes calculated risks. We are now old with little family support, money or assets.

    In the 80's we simply did not have access to many immune modulating drugs. We did not normally have access to Immunologists. It was early days and patients / doctors had few choices in testing and treatment.

    We were always interested in viral / immune theories as most of the people in my patient groups were previously well adults with an acute onset. We had sore throats, swollen glands and raised temperatures from Day 1.

    Patients from these early days have experimented with immune modulators as they were developed. We never stopped and some of us found drugs that were useful. The most relief that I have ever had for the symptoms of this disease (sore throats, glands and flu-like) were from anti-viral or immune drugs. It is logical in my case to consider anti-retroviral treatment.

    The test for XMRV has lead to a renewed interest in this area. It never really went away. Some of us were involved in earlier retroviral research or were aware of it. Many thousands of people knew about earlier attempts. It's part of an ongoing process.

    Some of us have been damaged by drugs prescribed earlier by well meaning but ill-informed physicians. Antidepressantts and antibiotics and anti-inflamatories left much more disabled. We learned to trust our own judgement and make informed choices.

    We only have one life. The patients from the 80s acute cluster outbreaks, like myself, are now in our middle or late years. We have been in many cases bed or housebound for decades and now facing an old age of poverty or early death.

    We are not getting any better. Our quality of life is extremely low and getting worse. Other anti-viral drugs have helped. Anti-retroviral drugs are being considered with caution and the need for clinical trials is urgent.

  • Robin

    Ila Singh and one of the other gentlemen discussed the difficulty it testing outcomes of a clinical trial of antiretrovirals on CFS patients. I think the man said, “it's relapsing/remitting so any drug will help some people”. It sounds similar to the problems faced by researchers treating MS.

    One way to measure is the use of an actometer. It's a device that would serve as an objective measure of daily activty. People with CFS function at much lower levels than they did when they were healthy.

    A double-blind/placebo controlled trial could be set up where all of the patients wear an actometer for a certain period of time – perhaps a few months – to establish a baseline. And then after the trial starts, patients in both groups continue wearing actometers. The trial should be long enough to sufficiently eliminate relapse/remit as a confounding factor. A general upward trend in function via actometer in the drug group would then establish efficacy.

  • CD

    Alan,

    You said

    Latching onto the first shred of data that fits your own preconceptions, and then using that as justification to ingest toxic substances that may not help, seems like the wrong approach

    =========

    That’s what happened with conventional doctors and this disease. They stuffed us full of antidepressants and other drugs with little justification.

    Then there were the therapies – cbt and graded exercise. Many patients were damaged by the exercise programs. I certainly was. We still have patients being forced on dangerous exercise regimes by their insurance companies today.

    That’s why we are cautious and would like proper clinical trials. However, some patients are willing to take a calculated risk and I would hope that you could understand that as they may be bedbound and with only a short period of life left to them.

    Please speak out on all the damaging drugs, programes and regimes that people with CFS are being forced or recommended to do.

    To miss out the ones actually causing us damage today seems strange.

  • Guest

    Thanks to Dr Singh for taking the time to appear on such an great broadcast. I learned a lot about XMRV.
    Will be curious to see if XMRV is in cervical tissue. Both my sister and I had CIN2 changes before we developed ME in our early 20′s.

    Thanks Dr Singh.

  • LC

    Just want to say, keep doing the podcasts. There are absolutely wonderful.

  • Science_based

    WHY THE HEAVY PSYCHIATRIC BIAS?
    Initially I was perplexed on reading “Dr” Alan’s strident, unscientific, and illogical comments about patients with ME/CFS here (http://www.twiv.tv/2010/08/08/twiv-94-xmrv-with-dr-ila-singh ,http://dovdox.com/content/2010/08/xmrv-cfs-and-the-nature-of-science/comment-page-1/#respond ). To whit a few gems:

    1) “A couple of other studies have tried to reproduce those results, and failed.”
    Clearly Dr Alan hadn’t done his homework – or didn’t know that a reproduction (aka “replication”) of science required that the same patient cohort definition be used (it wasn’t); and that the same testing methods be used (they weren’t). Puzzling, to have this apples-and-oranges confusion coming from a PhD in Microbiology, and from an ostensibly prepared interviewer.

    2)“They’re ill (the ME/CFS patients) – often debilitatingly so – and want clear answers and a cure immediately, if not sooner. I’m not ill (thankfully), and I think like a scientist. And that’s the real problem.” The great “Doctor” clearly determined that he cornered the market on scientific thought, while the rabble – those pesky patients – were mired in emotion. An entertaining comment – albeit false. Time after time, patients attempted to educate the good Doctor on ME/CFS cohort definitions; glaring methodological flaws in the “failure” studies (i.e. patients with persistent viral symptoms were explicitly eliminated from the BMJ study); sweeping and unscientific conclusions made in liberally-interpreted “CFS” studies – that have historically obliterated precise scientific into ME/CFS; and the myriad of physical studies that support a viral etiology (http://dovdox.com/content/2010/08/xmrv-cfs-and-the-nature-of-science/comment-page-1/#respond ). Interestingly, Doctor Alan was incapable of grasping the scientific reality that if you pack enough depressed or out-of-shape patients – with no physical findings of illness – into Graded Exercise Therapy – they will get better! And the minority of genuine ME/CFS patients swept up in the excitement of this “CFS” cohort will appear as a tiny blip of “background noise”. Their often devastating immunological response to exercise will be ignored – as it has been for decades.

    3)“The second feature of science is its unique claim to truth. Its conclusions are equally valid for Christians, Muslims, Jews, and atheists.”. What Dr Alan has adoringly missed is that science is a product of humans, and at the end of the day, human frailties can railroad the best of science and its interpretations. Just ask Galileo. Thus scientific conclusions are NOT equally valid for retrovirologists versus psychiatrists in the bizarre inferno that is ME/CFS research. That’s the whole problem! If this podcast were “This Week in Psychiatry”, I could understand Doktor Alan’s segues into the psych domain. But the TWIV podcast should have been an objective discussion on the retroviral and lab science on XMRV – without psychiatry-infused overtones, such as that embodied in Alan’s comment on nausea being an example of an “outbreak”.

    4)“Following the scientific evidence means following all of the scientific evidence, not choosing only the studies you like…. The extremely vocal CFS community (just look at this comment thread) is not shy about shaping policy to favor their views. That’s acceptable practice in politics, but I wouldn’t call it scientific validation. And I wouldn’t call the psychiatrists who believe CFS is psychosomatic a “small” group.” I started to get that Spidey Sense about “HERE”. As Alan noted himself, he “left laboratory research to become a science journalist, a job better suited to his short attention span…” (http://dovdox.com/content/about-2 ). Why then was he so clearly invested with the psychiatric paradigm of ME/CFS? Why was he using emotive and motivational lines such as, “Many folks here seem to be laboring under some serious misconceptions. First, and by far most disturbing, is the subtext that calling a disease psychiatric is tantamount to calling it bullshit.” (http://www.twiv.tv/2010/08/08/twiv-94-xmrv-with-dr-ila-singh ). Would the good Doctor expect any other reaction if he were to say that another retroviral illness – say AIDS – was psychiatric – and that hence “treatments” should be psychiatric? Would he expect any different reaction if AIDS patients had almost exclusively been offered exercise-and-mind-control-as treatment for nigh on 3 decades? Aren’t “interviewers” supposed to be scientifically impartial?

    SO I DID SOME DIGGING.
    All it took really was one click from Alan’s petulant and ponderous “XMRV, CFS, and the NATURE of SCIENCE page (http://dovdox.com/content/2010/08/xmrv-cfs-and-the-nature-of-science/comment-page-1/#respond ) to his “About Us” page (http://dovdox.com/content/about-2 ) and “presto”, things started to fall into place.

    THE IMPACT OF SCIENTIFIC “DISCLOSURE” ON SCIENTIFIC CREDIBILITY
    One of the marks of an objective scientist is that (s)he will openly and freely make disclosures about factors that may impact their scientific objectivity – particularly when they are serving as an interviewer in a hotly contested subject. If ever there was a time to make such a disclosure, Alan’s TWIV “interview” on XMRV (and his grandiose, sweeping statements on ME/CFS) was IT!

    Yet he chose to remain curiously silent on the fact that he is not only married to a psychiatrist, but that her Areas of Interest are uniquely:

    Areas of Interest
    • Consult/Liaison Psychosomatic Medicine (http://www.baystatehealth.org/AcademicAffairs/Main+Nav/Departments/Psychiatry/Faculty/Dove)

    Knowing how much Alan loves science, and in the interests of transparency, I thought it might be helpful for his followers to see the following:

    Psychiatric Fellowship

    • “Dr. (Laura) Dove completed a fellowship in Psychosomatic Medicine at the Yale University School of Medicine in New Haven, CT.” (http://www.umassmemorial.org/WingIP.cfm?id=5470 )

    And so it is with tongue wedged firmly in cheek that I provide the following exact quote from Allan’s “About Us” section http://dovdox.com/content/about-2

    “Dovdox is the personal site of Alan Dove, Ph.D. (who actually writes the blog), and Laura Dove, M.D. (who keeps Alan in line).”

    This pun is just too good to pass up. Did someone mention sleeping with the devil?

    Postscript: Does the fact that Dr Alan Dove is married to a psychiatrist – with a specified “Interest” in Psychosomatic Medicine – automatically render his comments on ME/CFS null and void? No. Not automatically. And certainly not if his interview and subsequent comments on ME/CFS and XMRV reflect thoughtful, objective science and an unfettered thirst for the truth.

    However given Doktor Alan’s unscientific comments on XMRV and ME/CFS and his pro-psychiatry bias – presented without disclaimers nor disclosures – we might be heading in that direction.

    Busted

  • Science_based

    FIRSTLY DR RACANIELLO AND DR SINGH – AN OUTSTANDING, TIMELY, AND IMPORTANT INTERVIEW! Thank you so much for digging into XMRV and ME/CFS, with genuine intellectual thirst for answers!

    As for Dr Dove: Please accept my apologies if I have missed disclosures to this effect. I am having some difficulty reconciling “Dr” Alan’s strident emotive comments about “science”, with his non-disclosure of his marriage to psychiatrist Dr Laura Anna Dove (x), and the fact that her particular area of interest is Psychosomatic Medicine (http://www.baystatehealth.org/AcademicAffairs/Main+Nav/Departments/Psychiatry/Faculty/Dove )

    Dr R – please DO host future segments on XMRV… it’s only going to get bigger. But please also consider whether your fellow interviewers are indeed capable of being scientifically impartial. Dr Alan was a bust.

  • cfs since 1998

    While I am very grateful for the chance to hear Dr. Singh interviewed, I am very disappointed with the lack of knowledge regarding ME/CFS exhibited by the cohost Alan Dove and especially his dismissive, insulting, condescending attitude, and his unwillingness to learn about the illness.

    Hundreds of thousands of CFS patients are on their deathbeds, strung along barely alive for years, decades on end. The suffering is massive.

    The idea of a retrovirus causing CFS shouldn’t be controversial. It has been suspected for 23 years now.

    In 1987, a family physician wrote to what is now known as The British Journal of General Practice stating, “the syndrome is an acquired immune deficiency syndrome and we are presently searching for evidence of retrovirus infection in our patients.”

    In 1990, Dr. Nancy Klimas published a peer reviewed study in the Journal of Clinical Microbiology which concluded with the following: “The results of the present study…as well as the combined results of a number of studies in the literature…suggest that CFS is a form of acquired immunodeficiency.”

    In 1992, a peer reviewed study in the Annals of Internal Medicine concluded the disease was “an immunologically mediated inflammatory process of the central nervous system.”

    Study after study showing serious immune dysfunction have been published, for example, Bruno et. al. in the Journal of Translational Medicine, Jan. 2010.

    Meanwhile the CDC insists that CFS patients have no immune abnormalities, period; the outbreaks in Incline Village and Lyndonville were nothing but mass hysteria; and that CFS is caused by the inability of cope with the normal stress of everyday life.

    The discord is obvious.

    Patients don’t want “a cure sooner than now” or massive funding. They want the CDC to stop sabotaging real scientific research and stop publishing politically motivated propaganda.

    If you want to learn how the CDC sees CFS, just read this letter that was posted on a bulletin board at the CDC for several years:

    http://www.oslersweb.com/files/dear_sirs_I_am_sick0001.pdf

    I bet Alan would think that letter is actually funny rather than the disgraceful hate-speech that it is.

    While ignorance might be forgivable, willful ignorance is certainly not.

  • Tiggerkenwood

    Alan, I just recently read your blog. I think the reponses you have received are due to frustration from waiting so long. You say careful science takes years. Yes it does. However, there are many CFS/ME patients that have been waiting now for almost 20 years. A retro virus was found right after the Incline Village outbreak. The CDC did not follow through. When “psychology” is talked about in relation to CFS/ME we become justifiably fearful that once again that will be the only route the CDC will follow along with possibly the NIH, FDA, and DHHS. For us this means we may be waiting 20 more years and for many of us, we are out of time.

  • E. Johnson with ME/CFS

    Dr Dove,
    It’s my belief, not necessarily demonstrable, that CFS patients are more irritable than normals. After all, we have a neurologic illness and a difficult life situation. Prostate cancer patients don’t. Take a look and you are also going to find a number of personality differences, and ‘psychiatric’ diagnoses, in lupus and multiple sclerosis. From my perspective, having once had very severe neurological symptoms (luckily no more), your comments on your blog and ERV’s are likely to be experienced as highly antagonizing, regardless of how you intend them. You have to realize that, regardless of irritability, psychogenesis theories of CFS tend to prevent physiological research. It is hard for patients to see anything in psychologization other than promotion of the wastage of their lives, and for those with severe illness, frankly, torture. A strong word, but I have been in the ER screaming and crying due to akathisia (see wikipedia). Clearly, this conflict with promotors of psychogenesis is something prostate cancer patients haven’t experienced.

    As an example of what I stated, you will find that Susan Swedo maintains that OCD is 10-15x more prevalent in systemic lupus than in normals. Many, many other ‘psychiatric’ findings in lupus (again, including psychosis in ~10%), may be noted in _Dubois’ Lupus_, the unrivaled reference on lupus.

    It is also the case that patients experience alienation H. Hugh Fudenberg MD writes, in Byron Hyde MD’s monograph on ME/CFS, that 2/3 of of marriages and housemateships dissolve when one person involved gets CFS and this is termed psychogenic or factitious by multiple doctors. He claims (citing his own unpublished observations) that these persons usually re-unite after the patient sees him and he certifies the case to be physio-genic. Think of this what you will.

    I’m not necessarily saying that you should censor or modify your thoughts about CFS patients. The above are simply the facts and likelihoods as I know them, which I place at your disposal.

    Frankly, with no offense intended, it appears clear to me that you started by supporting the *possibility* of _psychogenesis_ of CFS, and are now switching to the possibility of psychiatric-ness, which you equate with or relate to brain disease in a way not sharply defined. But I doubt that you consider all multiple sclerosis symptoms psychiatric. How about depression or psychosis or OCD associated with lupus? More importantly, do you believe you can conclusively prove them to be psychogenic? How about major depression as a primary diagnosis? I will let you know that I am somewhat skeptical of psychogenesis in general, other than PTSD. If you wish to debate any of these matters, anything, I will do so with you – without any moralizing or ad hominem whatsoever. I am capable of being 100% detached. If you would rather not, well, I merely ask you to consider my words.

  • E. Johnson with ME/CFS

    > Many, many other ‘psychiatric’ findings in lupus (again, including psychosis in ~10%), may be noted in _Dubois’ Lupus_, the unrivaled reference on lupus.

    Pardon me, not only psychiatric findings, but also personality differences vs normals.

  • E. Johnson with ME/CFS

    > How about major depression as a primary diagnosis?

    This term “primary” is rather MDish not PhDish, so let me explain, just in case, that I mean major depression in the absence of MS, lupus, or any other diagnosis.

  • E. Johnson with ME/CFS

    > After all, we have a neurologic illness and a difficult life situation. Prostate cancer patients don’t.

    Excuse me, I did not mean to say prostate cancer is easy. I edited the first sentence without glancing at the second.

    What they don’t have is psychogenecists helping to minimize physiological research on their disease, a minimum of treatment options, and alientation from friends, family, and spouses (plus relative difficulty in getting disability stipends), which is apparently due in part to psychogenecists if the reference I have mentioned is even half-true

  • lancelot

    Alan Dove,

    Do you still believe “there’s evidence for a psychiatric etiology” and that “CFS could be a psychiatric disease, just as schizophrenia, depression, and bipolar disorder are”?

    Are you still ignorant or just stupid?

  • lancelot

    Dr Ila Singh sounds like a really wonderful and rational scientist! Thank you so much!

    Alan dove, CFS cluster outbreaks(dozens and dozens) does not equal people getting sea-sickness on boats! Do people take sea-sickness home and throw up everyday for years and decades? Grow up!

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  • http://pulse.yahoo.com/_PF5UOQNTOCGLZ4N34AZQUQFI5M Steve A

    Saying that seasickness occurs in clusters seems wrought with selection bias. Do these clusters exist because people are clustered on the same boat under the same motion conditions (and likely with comparable sea-legs, i.e. a boat full of tourists)? Furthermore, have seasickness clusters ever occurred on land? Consider:

    Death by grenade is not exclusively a response to seeing other people standing next to you being blown apart. It is a biophysical/psych condition that can occur in clusters.