Oh for fucks sake.

Just after Jenny McCarthys ‘keynote address‘ at an ‘autism’ conference sponsored by AUTISMONE and Generation Rescue, Judy Mikovits is going to talk to everyone about XMRV (3-4 pm).

Judy, you are one pathetic excuse of a ‘scientist’.

Comments

  1. #1 ZenMonkey
    March 31, 2010

    mgb: Amazing! You work for the WPI? Or are you monitoring my email? Because I’d love to know how you became so intimately familiar with the email I sent to characterize it as an “insignificant rant.” Please, for all our edification, provide a few quotes from the specific email I sent to demonstrate that it was a rant.

    And I reiterate that if this comment by Mikovits was an error, or she misspoke and didn’t mean it, I would expect WPI would wish to correct our misapprehensions. Until I or anyone else hears from them on this matter, then we have only Mikovits’ very own words to go by.

  2. #2 Moron
    March 31, 2010

    JustBelieve,
    If it’s contamination, why do negative controls work as expected with PCR and Ab-based visualization, for two or three labs including NCI? Why are the subjects seropositive for two or three labs including NCI. Why did Urisman et al 2006 visualize the gentlemen in situ, in tissue frozen immediately after prostatectomy, with both FISH and Ab. Why did PMID 19805305 also visualize it in situ with Ab.

    I wouldn’t necessarily rule contamination out completely. And yeah, the lack of quasispecies is discomfiting, no doubt.

    The Urisman paper is DeRisi: a hotshot who built his own DNA chip machine from scratch and went on to invent the Virochip. Not exactly a marginal PI. And he also found the same lack of diversity as you probably know.

  3. #3 ME
    March 31, 2010

    Soho, the pychiatric treatments on offer to sufferers ie CBT and GET are cheap therapies and if they do work they get some of the people off benefits. Those who recover after psychiatric intervention are most likely not suffering with neurological M.E but with depression. The thing about M.E/CFS (in the UK) is everyone with fatigue symptoms gets diagnosed with it. So it’s a grab-bag. The therapies will work on some simply because not everyone has true neurological M.E. and as further investigative testing is not recommended in the UK no one actually knows the true number with M.E. Those with M.E. who don’t recover are left to deal with their condition. No more treatment – no more costs.

  4. #4 mgb
    March 31, 2010

    Sorry Zenmonkey, just assumed after reading your emails that it was you preferred method of communicating.

  5. #5 mgb
    March 31, 2010

    correction- posts

  6. #6 Moron
    March 31, 2010

    Promo,
    By the way the CFS/fibro research outlays are much smaller, per sick capita, than for other diseases. Probably by 5x or so. I’ve looked it up (and more recently than that other information I attempted to cite from memory).

    Doesn’t exactly make me happy personally, though given the lack of biomarkers I can understand not funding it somewhat less than equally – when I look at it sub specie aeternitatis plus squint really hard.

    The thing is, actually, I just remembered, I think a whole lot of that money goes to psychobabble research – so actually scratch that sub specie thing. You’d be amazed how many neurological type diseases have had a very significat psychologic etiology school in the past, and sometimes that school dominated. One by one these diseases have fallen into the definitely-biological realm. Meanwhile psychological medicine has never one brought forth a radical cure – or even a really significant diminishment (like more than 30% or so better than placebo) – of any disease entity. That’s quite a record. I’m not saying it’s totally useless, but it is extremely unlikely to ever hold the key to the actual cause of any chronic illness.

  7. #7 ERV
    March 31, 2010

    Petra– ERV was started in 2007 2006 (Christ Im old). I am not, nor have I ever been, an anon blogger. And, my info has been on the Clergy Letter Project for just as long.

    This isnt new info.

    But the manner in which it was used here and in the ‘About ME/CFS’ forums is creepy.

    The only other people who do things like this are kooks, like HIV Deniers.

    Kooks also attempt to silence dissenting opinions via bullying and intimidating legal threats, like what A*** W*** did.

    Which doesnt speak well for the CFS community, if they want to be taken seriously.

    *shrug*

  8. #8 Justin Reilly
    March 31, 2010

    Weak!

    Really, erv, you and many others on this forum post some very weak stuff. Obviously for science to progress, which is the whole point of science, scientists must form hypotheses (ie speculate). Einstein said that imagination is more important than knowledge. I don’t know if this is true, but it is certainly the case that knowledge without imagination is not very useful. And to make a larger point, she’s a good scientist and a good person, so back off on the unprofessional ad hominem attacks.

  9. #9 Anonymous
    March 31, 2010

    Don’t mind the kooks, ERV. It could’ve been worse. An anonymous clan could’ve called in their politicians to shut off all funding to the state of Oklahoma until the authorities handed you over. On the bright side the subsequent compulsory long walk off a long pier would’ve positioned you well to investigate the existence of Tahoe Tessie.

  10. #10 John
    March 31, 2010

    @100 Soho- Wessely and co. say ME is ‘real’, not real. A lot of the time even complete with quotation marks! Kind of like how nightmares are ‘real’, ie yes you ‘really’ had a nightmare and a nightmare itself is a real event, but that doesn’t mean that what occured in the nightmare was real, hence the quotation marks. Confusing? Good! You’re halfway to psychville already.

    The thing is that there are different kinds of insurance- medical insurance and disability insurance. By including CFS as a psychiatric disorder, disability insurers can avoid paying claims related to CFS. It’s really just passing the buck, and it’s a mighty expensive buck at that.

    For most disorders(or at least a lot of them), you can run a simple blood test which tells you what the diagnosis is. Symptoms + specific abnormality= diagnosis(at least in general).

    However since there is no biomarker for CFS as yet, it’s the opposite- doctors must run a comprehensive battery of tests to exclude other diseases. I think I’ve read that ‘diagnosing’ CFS is one of the most expensive parts of modern medicine. Instead of running maybe a handful of tests, you’ve got to run a whole shitload of them. Over and over and over and over again since CFS patients will go from doctor to doctor in an attempt to find someone who actually believes them. So by hampering research into CFS in order to save money themselves, disability insurers have instead dug a money pit that a ton of other industries have to throw money in- medical insurances, hospitals, medicaid and medicare, etc.

    And as for that ‘therapy that works’(CBT?) as you call it, basically it’s a lot cheaper to tell someone there’s nothing wrong with them and if there is it’s because they’re not ‘committed’ enough to the ‘therapy’ than it is to pay a disability claim.

    [in b4 'if there's no biomarker then there's no disease': there are plenty of biological abnormalities in CFS patients, it's just that most of the time they only occur in a percentage of patients, which has given rise to the theory that CFS is actually a heterogenous disorder, similar to the recent hypothesis that MS also occurs in two forms, one characterized by gamma-interferon-secreting T cells and the other by IL-17-secreting T cells*. If CFS is heterogenous why would XMRV occur in most all patients? Good question.]

    *http://www.businessweek.com/lifestyle/content/healthday/637340.html

  11. #11 Moron
    April 1, 2010

    > there are plenty of biological abnormalities in CFS patients, it’s just that most of the time they only occur in a percentage of patients

    That’s only quasi-true – unless we assume the papers by V. Spence and by Maes, showing radical abnormalities, are correct. (They haven’t been confirmed in print so far, and I have to wonder whether they might have been disconfirmed without any publication).

    Other ‘softer’ abnormalities have been found. The most robust and confirmed of which is low NK cell function. However, this isn’t some thing that no normal person has and that 30% of CFSers have. Rather, ‘low’ NK cell function means lower than the 5th percentile, or the 2nd percentile, or the 0.1st percentile of healthy people (I’m not sure which). And whatever that threshold is, 30 or 40% or whatever it is of CFSers are below it. There’s nothing vague about this. It is a perfectly formal and proper abnormality even though not all of us have it, and it does help make an (objective) case for the physical nature of the disease.

    However, just because there is a molecular abnormality, that doesn’t absolutely prove the etiology to be physical (unless the abnormality is a gene with high penetrance). For example, it is not controversial that a big percentage of depressed subjects, in the neighborhood of 50%, show ‘elevated’ cortisol (whatever elevated means – and there is almost certainly some amount of healthy normals who also have elevated cortisol). Yet, the psychogenic theory of depression has hardly been driven from the field, though physiogenic theories exist too. The psychogenic school simply says that the psyche and psychical processes cause the hypercortisolism. Mind states are of course considered to simply be brain states by virtually all scientists, though certain difficulties are associated with this hypothesis and a truly radical proof of it is probably not possible, at least not anytime soon. So there is no separate ‘psyche,’ on this picture. But the word is still convenient. It refers to the supposed high-level integration of purely physical processes in the brain to produce emotion, desires, beliefs, and of course (and this is the sticking point philosophically) qualia.

  12. #12 Moron
    April 1, 2010

    Cortisol is of course a stress hormone secreted at elevated rates when stress is registered in the psyche, and misery can be considered stressful. So the psychogenic school of depression has a somewhat plausible story for the psyche causing cortisol to go up. (Though I don’t know whether or not it *stays* up chronically in a healthy person that is *chronically* stressed.)

    Why exactly the mind state of CFSers could lower NK cell function is a bit more of a stretch. There is no known reason for a mind state to have this effect, and it seems like plausible hypotheses would be really hard to think of. On the other hand it is certainly possible for the brain to modulate the immune system. So there’s certainly “a way” – whether there is “a will” is much more dubious.

  13. #13 ME
    April 1, 2010

    Soho. To Clarify as it appears from your statement that you aren’t from the UK.

    The insurance industry doesn’t pay for treatments in the UK, the NHS or the government does. We have a national health service here.

    Wessely DOESN’T believe it’s a ‘real’ debilitating condition but says it is caused by ‘abherrent illness beliefs’ i.e. it’s all in the head and can be cured with a little bit of his magical talk therapy. In my opinion, he’s selling his own brand of snake oil here. He’s probably making a mint from the government to set up and run the ME/CFS clinics, in addition to his consultancy services and work with DWP and UNUMProvident. The government desperately need a solution to the escalating disability costs; specifically the incapacity and disability benefits paid to UK sufferers.

    Disability benefits are not frowned upon in the way welfare benefits are in the US. Therefore most people who find themselves incapacitated for a long time will be in receipt of said benefits. If they can jump through the numerous hoops set up along the way and prove to government-paid doctors that they are truly deserving. This is expensive for the government.

    So, how do they alleviate these costs?

    1. In the UK doctors are told to stop testing after the initial round of blood tests. This will appease some patients who will often get the ‘all clear’ and soldier on alone until they have a health crisis. REDUCTION IN SERVICE LEADS TO REDUCTION IN COSTS. Check the NICE Guidelines for substantiation.

    2. If the patient continues to make a nuisance of himself and bothers the busy doctor then give him a diagnosis of ME/CFS and dish out a succession of antidepressants and sleeping pills. This will appease some patients and is cheaper than expensive testing.

    3. In the UK ME/CFS is diagnosed as a psychiatric condition, despite the fact that M.E. is classified as a NEUROLOGICAL disorder by the WHO (since 1969). The treatments offered (talk therapy and graded exercise) are cheaper than the convoluted tests and treatments required for neurological M.E. Remember I said that pretty much anyone with symptoms of fatigue is given the wastebasket diagnosis of ME/CFS. So, those with depression will most likely be relieved of their symptoms at this point. This takes some sufferers out of the equation with very little expenditure and reduces further costs.

    4. Doctors are told NOT to conduct further tests. Tests that will likely confirm the biological nature of the condition, such as the simple tilt table test. REDUCTION IN SERVICE LEADS TO REDUCTION IN COSTS. Only the very persistent will get through the testing threshold. Often patients are just too ill to fight. 25% are housebound/bedbound. Check the NICE Guidelines for substantiation.

    So, you are left with the very ill who may or may not be on benefits but will almost certainly not have been given appropriate testing and treatment or will have had that testing or treatment delayed. Costs have been cut by reducing the level of service to the sufferer. No conspiracy here but fact and makes perfect sense if your goal is to reduce expenditure. I know thousands of sufferers and I am unaware of anyone who has had proper testing without having to fight tooth and nail to get it. I retired from teaching 4 years ago, at age 38 and have been housebound ever since. I still haven’t received neurological testing or an investigation into my severely low blood pressure which is permanently in the 80’s/50’s. Just one of a multitude of other symptoms. I have saved the UK government thousands of pounds by being too ill too fight and because my doctor, seemingly, has no idea how to treat me. Very few sufferers have been given the tests required to confirm M.E. They are left in a vacuum. Many commit suicide. 3 in 4 will go on to develop cancer, in particular lymphoma.

    The situation in the UK is very different from the US. We are in the cold, hard grip of a psychiatric stranglehold and it’s a very unhealthy place to be. Sufferers are being sectioned because they refuse psychiatric treatment. Child sufferers are being taken away from their families and their mothers are labelled with having Munchausen Syndrome by Proxy. My god how can that be right? Call me a conspiracy theorist, scoff and ridicule me (I don’t really care, I’m far too old to be concerned about ego, leave that to you youngsters ;)) but I live with the disease daily and know that this cannot be ethical or just. I’m talking real politics, the politics that matter to everyday people, the politics that should matter to you let’s face it; you too could get it. No, not conspiracy. A conspiracy is something that is dubious and ill-substantiated. Wessley’s part in the ME/CFS fiasco is well documented.

    N.B. ME has been confused with the term CFS. In fact in the UK it is called ME/CFS. ME is a distinct illness, with over 70 recorded worldwide epidemics and has been in existence since at least the 1900’s. Not mysterious but well-defined with over 4,000 scientific papers written on its physiological nature. CFS is a false disease construct, brought into existence in the 1980’s after an unknown epidemic hit Lake Tahoe. Chronic Fatigue Syndrome – it’s like tuberculosis being called Chronic Cough Syndrome. The isolation of one symptom has been used to create a term that belies the severity of the illness. But this is good for the insurance industry because they can easily refuse to pay out on an illness that involves feeling tired because everyone gets tired, right? It can’t be that bad, can it? If they haven’t had the full tests conducted and have been given the ‘all clear’ by the doctor then that’s even better. Better still say that they are mentally ill and then no one will believe them or take them seriously.

    P.S. Bringing attention to my misspelling of Wessely is hardly relevant and was used in an attempt to disparage my comments. Didn’t work.

  14. #14 ERV
    April 1, 2010

    Justin Reilly– …unprofessional ad hominem attack…

    There are no ‘ad hominem’ attacks in this or any posting on ERV.

    I write ERV to improve scientific literacy. Your good old fashioned ‘illiteracy’ is not something I can help you with.

    Do you all have anything to say about the OP, or are you just going to keep posting tl;dr;dc crap?

  15. #15 Moron
    April 1, 2010

    > 3 in 4 will go on to develop cancer, in particular lymphoma.

    Interesting post, but that one statistic is very very hard to believe.

  16. #16 Moron
    April 1, 2010

    What about the tilt table thing, what’s the formal way of measuring the response and what’s the formal, precise statement of how patients differ from normals? And has it been confirmed by many different labs?

    I certainly have a wacky autonomic nervous system, myself. I used to have 80s over 40s BP all the time (all self-measured though, I think). And would be very woozy for a few seconds upon standing (though at times I felt faint constantly, even supine, which is a real misery). I still sweat buckets when I get really cold.

  17. #17 Soho
    April 1, 2010

    >Why exactly the mind state of CFSers could lower NK cell function is a bit more of a stretch. There is no known reason for a mind state to have this effect.

    What can decrease NK cell levels and function? Lack of exercise. Who doesn’t get much exercise? CFS patients. Like the people the ME malicia bully and brainwash to refuse GET. (I stole that malicia bit from Orac.)

    What else decreases NK cells? Stress. Like what happens when you cruise the internet looking for conspiracies and affronts. Or when you confront doctor after doctor after doctor and work yourself into conniptions until you find one to sign off on the diagnosis and treatment you want.

    What else? Sleep disturbances. How many people do you know who go from blog to blog to YouTube to news comment section and back around for days without sleep? I know some ME patients who do that, then they crash for a few days, then they go right back at it again.

    Why reach for a virus when stress, disrupted sleep, and sedentariness could explain the phenomenon? Because it’s easier to read a summary of a De Meirleir abstract on feelsorryforME dot com than to actually learn about NK cells. By the way, all three conditions can be treated by behavioral therapies and are associated with a variety of mental disorders. Don’t blame CFS patients for their conditions. They have serious problems. Blame the ME milicia who keep sufferers in denial and away from treatments.

  18. #18 stogoe
    April 1, 2010

    Dear University of Oklahoma Health Sciences Center,
    Abbie Smith (aka ERV) is totally awesome and I love the way she takes the piss out of frauds and kooks who lie to suffering people about fake treatments to steal their money. Please give her something awesome that she’ll appreciate. Like a dinosaur riding a jet-ski shredding a double-neck guitar. Or an Aye-Aye with a laser harp.

  19. #19 Moron
    April 1, 2010

    Soho,
    I acknowledge having a frank case of the disease, so I wonder whether you would acknowledge any possible conflict of interest you have (like working in psychiatry). But don’t get me wrong, I’m not demanding that you do so.

    I’m sure you can agree that there is an inside and outside version of the CFS question. I’m on the inside. I know I used to feel flu-like (colloquial sense, not influenza) every day, and be pained by bright light. I know I used to feel faint all the time, have thousands of heart palps per day, and break out in petechiae after showering or exercising. Just like I know the sky is blue. I am more certain of these things than I am certain that my mother loves me: they have less positive emotion associated with them, but that hardly matters much in epistemology; what matters is that they are simpler and more immediate. So I don’t acknowledge that there’s an inside question, but I do of course acknowledge the outside question.

    I would support 100% an experiment to see whether some period of inactivity, or stress, could lower NK cell function in normals. Or whether any other manipulation could do the same.

    I agree of course that CFSers have elevated rates of neuroses including depression, anxiety, and OCD. I have all three though I am much less depressed than I was. But I believe these have a physiologic origin.

    Your notion about people reading/blogging compulsively can be interpreted in other ways. CFSers can have major insomnia problems and can have a constant ‘tired but wired’ syndrome. Insomniacs, with or without CFS, of course have to read or something if they can’t sleep. Reading and chatting can also be a narcotic distraction from ill-being. So, not only is it conceivable that entertainment junkie-ism could cause ill-being. It is also conceivable that feeling ill could cause entertainment junkie-ism. The person who feels ill and has trouble feeling pleasure seeks pleasure clutchingly, like a miser. Also, partial and total sleep deprivation have acute anti-depressant properties which are well known to science.

    I myself have been really anxious about something in particular, which is why I’ve been writing so much on this blog for three days. While I do find these discussions fascinating, I would restrain myself if I were feeling better, and spend that energy doing something to further other goals.

    Here’s the thing though. Not all CFSers are physically inactive. Even back when I felt indescribably awful, and certainly had some fatigue, I walked 1.5 miles every day, or often 2.0, the most I could comfortably do. It was one of the few things I could get faint pleasure from, and I love the outdoors (once did a 300-mile hike, 20 miles a day in the Appalachains, and I loved one-day and two-day bike rides). There are even a few who are able to exercise aerobically, though not many, and when one is dealing with only a few it is more worrisome that they might actually have some other, separate disease. But I would suspect that a large fraction walk many miles per week. There might be an X such that quite a percentage of CFSers walk more than X miles per week and quite a percentage of normals walk less. If you wanted to look at the NK cells of such people I would certainly wish you godspeed, and I acknowledge that such explanations are quite conceivably true a priori.

    Speaking not of NK cell but the illness more generally, very large numbers of CFSers have been treated with graded exercise programs. Whether they have on average improved by 10-20% or something is highly debatable. What’s not debatable is that it hasn’t cured them.

    I don’t think many CFSers go around looking for affront on the internet. But when we find it, it’s almost impossible for it not to smart some. You can’t understand our underlying enraged mentality, though most of generally find some level of resignation about it, in time. You just can’t understand how piss-mad you would be if you longed to die every hour, and thus were withstanding far more than most people dream of, yet lots of people said or obviously at least suspected that you were just a weakling. Perhaps even your father. I am now nearly in normal health, but I remember it well. When you are in suicidal agony but haven’t killed yourself so far, your main companion and the thing you know most deeply, almost like a lover and a PhD thesis combined together and changed into evil, is your terror of the death you desire. It’s like being in hell, and having people in heaven jeer at you as a hilarious panicky weakling who is imagining hell. When there is less than zero joy in the present and no clear expectation of escape, your life is destroyed except for weak, intermittent hopes of eventual escape – and half the people you know might disdain you, maybe your family or spouse; you might well end up divorced or on the outs with your entire family.

    Eventually though, I just stopped caring all that much about CFS detractors. After all, being piss-mad for a few minutes is like a gnat buzzing in your ear, compared with the actual problem of dealing with the disease itself, assuming a severe case of it. I don’t really care anymore that my father doubted my experiences without even doing any significant reading on CFS, so I just hang out with him and largely forget that it all happened. Though this took a few years. I’m sure sick people are revolting to many people – and many organisms. After all, in terms of evolutionary analysis it is not exactly fitness-enhancing to ally with, or donate resources to, a chronically non-functional miserable organism such as I used to be. And I am a firm believer that humans are subject to, in many ways dominated by, hard-wired drives of an organismal nature rather than a uniquely human nature. Many people behave that way toward CFSers and I suspect it is largely genetically determined. I could easily have been born with a genome that partially determines the same traits.

    Even the hilarious jabs of Prometheus sting me, but then I laugh because it’s really not malevolent, it’s uproarious wit, and I believe in thick-skinnedness and the traditional virtues of hardness and toughness. Also, wit is profound when it has the strength to take a great deal of suffering somewhat lightly. It is necessary for both laughter and ecstasy to comprise and partially neutralize suffering and take precedence over it. The individual that has escaped suffering must move beyond it. Some won’t live to escape. But the rest of society has to largely move on past it to a very significant degree, or the result is a pathological culture where the highest value is compassion. This is somewhat what we have in the West today and it is not desirable. I largely side with Nietzsche against this. It is essential to have some compassion, but joy, celebration, cheerful struggle, and achievement must unmistakably be the highest values.

  20. #20 gf1
    April 1, 2010

    This thread’s moved on rather.

    @Prometheus: I’m afraid I’ve not read those pieces. Maybe they do justify your comment, but to me, it seemed unfair.

    @ Soho: That’s the problem with those who believe that the abnormal biological findings in CFS patients prove that the cause of the illness must be biological. On the other side though, the evidence that CFS is caused by psychological illness or abnormal beliefs is just as weak. Doctors tend to prefer to believe that it is not a medical problem for which they are responsible, and patients tend to prefer to believe it is not a psychological problem that they are responsible for.

    @ CFS patients: ERV’s said she’s not interested in the politics surrounding CFS. I think that this means she will not be able to judge to WPI’s actions within their proper context, but it shouldn’t affect the virology. We’ve now had three papers showing no link between CFS and XMRV, and it is almost impossible to believe that this could be driven by patient selection, the interests of insurance companies, Wessely’s influence or anything other than a genuine inability to find the thing. It could be that these studies failed to find a link because of some error or peculiarity of the virus, and that there is a link between XMRV and CFS, but I think we can be quietly confident that this will be sorted out in the lab.

  21. #21 Moron
    April 1, 2010

    Yeah, I’m fully confident that it will be sorted out empirically. I was just chatting idly about whether CFS=XMRV can be ruled out yet, just for the heck of it.

  22. #22 gf1
    April 1, 2010

    Sorry Moron and others.

    I should have made it clear that my comments only apply to some of the recent CFS posters.

  23. #23 pokeydna
    April 1, 2010

    If you do not have CFS/Me, please keep your assumptions(assumption is a proposition that is taken for granted, as if it were true based upon presupposition without preponderance of the facts.) to yourself. If you are not currently using the methods and protocol used by the WPI, NCI and Cleveland Clinic to find XMRV in CFS/ME,Prostate Cancer or any related neuroimmune illness, please keep your assumptions to yourself. Some here may not like Dr. Mikovits or her manner being in the public forum…Oh Well…She has, with only a handful of researchers moved CFS/ME Science into the 21st century.If you disagree with the Science Paper, Get off your ass and prove it to be incorrect.One would think with all the hard working LabRats here…The questions re: XMRV and/or CFS/ME would have been solved prior to the death of Gaetan Dugas.

  24. #24 FU
    April 1, 2010

    Replication Study of Whittemore-Peterson XMRV Findings
    “Glaxo Smith Kline, a pharmaceutical firm in Research Triangle Park, NC, has funded a new study that will evaluate CFS patients with characteristics similar to the Science paper

    http://www.prohealth.com/library/showarticle.cfm?libid=15255&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews

  25. #25 pokeydna
    April 2, 2010

    Guess these LabRats are doing these studies Just for Kicks!

    Raltegravir Is a Potent Inhibitor of XMRV, a Virus Implicated in Prostate Cancer and Chronic Fatigue Syndrome
    Xenotropic murine leukemia-related retrovirus (XMRV) is a recently discovered retrovirus that has been linked to human prostate cancer and chronic fatigue syndrome (CFS). Both diseases affect a large fraction of the world population, with prostate cancer affecting one in six men, and CFS affecting an estimated 0.4 to 1% of the population.

    Forty-five compounds, including twenty-eight drugs approved for use in humans, were evaluated against XMRV replication in vitro. We found that the retroviral integrase inhibitor, raltegravir, was potent and selective against XMRV at submicromolar concentrations, in MCF-7 and LNCaP cells, a breast cancer and prostate cancer cell line, respectively. Another integrase inhibitor, L-000870812, and two nucleoside reverse transcriptase inhibitors, zidovudine (ZDV), and tenofovir disoproxil fumarate (TDF) also inhibited XMRV replication. When combined, these drugs displayed mostly synergistic effects against this virus, suggesting that combination therapy may delay or prevent the selection of resistant viruses.

    If XMRV proves to be a causal factor in prostate cancer or CFS, these discoveries may allow for rational design of clinical trials.

  26. #27 Shirakawasuna
    April 2, 2010

    JAS, you’ve given no reason why we should show her any more respect than anyone else foolish (crass?) enough to attend antivax conferences to give people false hope and spread nonsense. That is what she’ll be doing, you know.

    Many criticisms have been listed in this thread and many earlier ones, I point you to them. Some of this stuff is very basic – undergrads wouldn’t make her mistakes. So why is a PI doing a PR nosedive with such poor science?

    The answer is not, “she’s a hero”, if that’s what you’re still thinking…

  27. #28 JAS
    April 2, 2010

    @Shirakawasuna That is your ‘view’….I do not happen to share it. I do not pretend to have a scientific background, I am XMRV+ve so I happen to believe that she is not ‘foolish or crass’, if you were XMRV+ve and were facing all the realities that entails I think you may feel the same way. I am also in the UK where ME is seen as a psychiatric disorder which I have always known is wholly untrue. Who knows where this will lead…? You are too quick to judge all this..give it time, this is only at the very start, why do you have to decide everything now? On this blog things are being said rather for personal entertainment or personal notoriety…but actually this is not a game…this is not ‘nonsense’, this is mine and many other people’s lives.

  28. #29 ERV
    April 2, 2010

    This is a flat out, 100% serious question to the ME Mafia: Are you people mentally handicapped?

    Do you honestly think this or this or this or this excuses Judy Mikovits presenting at an anti-vaccination rally?

    Do you understand the criticism being leveled on Judy Mikovits, or do you just see someone criticizing your Messiah, and “DISSENT MUST BE ATTACKED!”?

    Because people who are just plain stupid are different than people who are medically mentally handicapped, and I will deal with this issue differently depending on the answer.

  29. #30 Three Chord Monty
    April 2, 2010

    “ME Mafia.” Great. That’s helpful. Ever wonder why people might do this for any other reason than thinking that they’re mentally handicapped? I was afraid something like this would happen when I saw that Mikovits was doing something at this conference, but I didn’t think it would get this bad. And for the record, although it seems to be public info, I thought it was kinda shitty to post Abbie’s stuff in a comment. That said, Abbie’s been kind of shitty herself on this topic, not that it deserved something like that.

    Ask yourself this, Abbie. You have broken your leg just as CFS patients have broken bodies. No doctor will offer anything but that the fracture is a result of psychological causes and that inappropriate measures such as behavioral therapies and graded exercise are the only treatments. They don’t think there is anything wrong with you, which some will state flat-out, while others will just look upon you as a malingerer. Broken leg. Compound fracture. And you’ve in a quandary with a large number of other patients, all with a similar problem, if not completely identical symptoms.

    I know you’ve said you don’t give a shit about CFS, but humor me, if you will.

    What’s worse is that for every one of you, there are two or three others who have received the same diagnosis, but whose illness is not the physically broken leg you’re dealing with. They are dealing with mental issues, psychiatric illness, depression, psychological problems. Doctors are weary of dealing with them, and project that weariness onto you even though you have a broken leg. They won’t so much as take an x-ray. Think you’d get a little irritated?

    After being treated like a mental patient, you might try to explain things to a doctor, not that it will do any good. Somewhere along the way, you might try to reason with them that your condition is real, that your broken leg is an actual, genuine condition. Cue a horde of people whose interest in mental issues has trained them to pounce on anyone seeming to minimize the legitimately major problem of mental/psychiatric issues. How dare you characterize a psychiatric or mental issue as not ‘real.’ Shame on you for diminishing the suffering of the mentally ill. This scenario plays out time and time again. And there you are, in great pain, with a broken leg that’s being utterly and completely ignored by people who are trying to tell you the only things you can do are either talk therapy, which is worthless to your situation at best, or exercise, which will make you worse. And since those treatments do work well for the larger group who share the same diagnosis with you, there is an evidence base that undermines your position even though you know it’s going to damage you. Yet if you refuse those treatments, you may be at risk of losing your coverage.

    You might not believe this analogy, but it’s more accurate, at least for the UK, than perhaps you’d like to admit. And I’m going to ask that you think about that, just for a second–being trapped in a dead-end diagnosis that caters to people whose suffering is for reasons other than yours, and people like you lay in agony for years, ignored by medicine, thanks to Wessely & other like-minded folks.

    It’s a little better in the States, generally, a lot better for some, just as bad for others. But for those whom it is better, it’s better only in the sense that they are able to find a doctor who has a better understanding of the condition and at least doesn’t think you’re mentally handicapped. If so inclined, they can perform a test that shows an issue like NMH, which is not permitted in the UK. If you are put on a tilt table & given a diagnosis of NMH, you’re told to drink a lot of water & consume a lot of salt. In the UK they section you in a psychiatric ward for following through on this advice. And smarmy bloggers who don’t have an understanding of any of this, because, as she admits, she doesn’t give a shit, ends up focusing on an admittedly questionable series of quirks visible in the behavior and views of a person responsible for some of the most promising research being done in this condition, for which no significant treatments exist, in nearly two decades.

    For anything you had a problem with Mikovits for, you did something that other bloggers seem to do–you focused on a couple of things that bother the crap of you, to the exclusion of any other considerations. Fuck the big picture, the only recourse you have is to proclaim the woman a cunt. How professional.

    I knew there were issues with her statements to the press, and connection that could be made to questionable entities. You went after each one as though it was the only issue worth mentioning. But for others, there is a bigger picture. And it’s not lost on everyone who comprises the “ME Mafia” that some of the statements Mikovits has been taken to task for perhaps would not have made it to the press had she not found herself beset with circumstances she may not have been prepared for. Like the rigors of what amounted to a publicity tour, which I doubt anyone could have forseen. But forget about cutting any slack to a person who is traveling and probably not eating or sleeping properly, and finds themselves in that situation likely with little warning or understanding of what they were in for.

    That said, I am not her defender, because I think some of the issues you have jumped on her for could have been avoided. I’m not a fan of the anti-vax people, to put it mildly. I think she put her foot in her mouth, more than once. I’m less inclined to care about the association with ProHealth, or some of her remarks, but I don’t deny that they could be looked upon harshly. But enough already–call off the dogs. For the reasons I have described above, a population of extremely sick patients have seen her stumble upon something that does indeed cause them to view her with great admiration. And they certainly don’t care about you. So the resulting situation is unfortunate.

    But it’s unfortunate when a patient who is desperate to be part of your skeptic clique decides for herself that because a small number of patients don’t grasp that the XMRV connection is not settled science, that she has to reach out to the skeptic community to present the perfectly obvious. In doing so she chooses a source that has repeatedly offered the considered opinion that CFS = somatization. Yeah–I need someone from that group with those views to tell me what I already know about how XMRV is not exactly settled science. Said poster–whose comments appear above–isn’t interested in their view on her illness (that it’s all in her head), only a perceived much-needed response to a small group of people whose loud voices have somehow convinced people who are supposed to know something about critical thinking, that a couple of dozen desperate people with loud mouths represent millions’ worth of patients. Ah…no.

    Interesting that someone who claims to suffer with the same ailment, not that I don’t believe her, would think so little of her fellow patients–and herself, seeking out the counsel of folks who don’t even think there’s anything wrong with her or anyone else with this diagnosis. Yeah, she’s the only one capable of thinking for herself. The rest of us follow Mikovits around like lapdogs, believing anything & everything before independent confirmation is forthcoming. Sure.

    Complicating it further is that the European studies are given equal weight by you and others, in spite of Wessely in one, an equally dubious figure using a joke of a CFS cohort in another, with nearly 20-year-old blood samples, no less, in another, and a third perceived as more credible since it was led by CFS-friendly doctors. Well, even some doctors who are not great fans of Mikovits couldn’t understand why that second UK study didn’t bother following the WPI procedures.

    I wasn’t going to bother responding again to you, since you took my pointing out that your concern about rheumatoid arthritis, in juxtaposition with your lack of concern about CFS, to be worthy of the label ‘emotional trainwreck.’ Well, I’ll leave that to your readers to decide for themselves. This, from someone who could have criticized Mikovits for the litany of perceived offenses without calling her a…cunt? For Pete’s sake. If truth is on your side, which isn’t yet known either, this is the route you choose to take in your criticism. This says a lot more about you than it does about Mikovits, David Kirby or no David Kirby.

    If you dealt with decades of a broken body, while being told it’s all in your head and disbelieved by friends, family, and loved ones, you might be a little prone to anger at this point as well. Or a lot prone. You might even give someone the wrong impression on a comments thread because you perceive them as the same enemy you’ve dealt with for so long. But, hey, what do you care about any of this? Judy Mikovits is irresponsible and unprofessional, and that’s all that matters. These patients, they must all be nuts.

    Good luck with that.

  30. #31 ERV
    April 2, 2010

    Three Chord Monty– blah blah blah tl;dr;dc

    You think its ‘odd’ that I refer to people who treat criticism with legal and real-life threats as a ‘mafia’.

    You do think its a problem that I point out Judy Mikovits un-scientific behavior.

    This bizarre position is not the result of a real medical side effect of CFS (lower IQ, slower brain development, mental impairment), but of your own irrationality.

    Question answered. Decision made.

    Thanks for your help!

  31. #32 pi
    April 2, 2010

    ERV, go look up the difference between criticism and ad hominem.

  32. #33 ADS
    April 2, 2010

    ERV – I don’t think it’s odd that you should point out unscientific behaviour by a scientist. I’m a CFS/ME patient, and I’m not particularly invested in the whole XMRV thing one way or another; just waiting to see what pans out. Nor would I claim to understand the scientific details about virology and lab methods. I’m also uncomfortable with the how militant the so-called “ME Mafia” come across online. There are many of us who are not represented here.

    The only thing I would point out is that it appears that AW reacted (even if she perhaps over-reacted) above to personal attacks made by some of the people commenting here. That has nothing to do with the scientific debate. You’re conflating the two. Surely you can see the difference?

  33. #34 ERV
    April 2, 2010

    Criticisms of Judy Mikovits behavior on ERV:

    Just after Jenny McCarthys ‘keynote address’ at an ‘autism’ conference sponsored by AUTISMONE and Generation Rescue, Judy Mikovits is going to talk to everyone about XMRV (3-4 pm).

    Judy, you are one pathetic excuse of a ‘scientist’.

    Lets be 100% clear, here. What Mikovits is suggesting is an organized conspiracy, lying, and scientific fraud in another lab. How is this statement any different than anti-vaxers saying researchers ‘dont want to find the link between vaccines and autism’, and they sold out to BIG PHARMA? How is this statement any different than Creationists saying Average Joe/Jane scientists are SUPPRESSING evidence to support Creation?

    This is some serious shit. This accusation is no fucking joke. The scientific world runs on all of us being truthful– this is my reaction to a Creationist calling me a scientific liar. If another researcher said what Mikovits just said, to me, in real life, there would be a fight. If I were the British group, Id have an awful hard time not taking advantage of their loose slander/libel laws…

    …Unless, of course, Mikovits has evidence to support her claims. So where is the evidence that McClure et al were purposefully and knowingly performing scientific fraud? Intercepted emails? A whistle-blower from the inside? Why do I get the feeling that this evidence does not exist, and Mikovits is just a gigantic fucking cunt?

    …No one who has ever published anything would say something that goddamned stupid. You pay to publish in every journal, stupid! Thats the whole fucking point of PLOS! Classic journals make you pay to publish, then volunteers review your papers, then the journal charges for article access. PLOS, you pay, people volunteer, but everyone gets to read your shit…

    …So let me be 100% clear again. What Mikovits just did was misrepresent Science to the public in order to gain sympathy from laypeople and to discredit other scientists valid work, in a completely non-scientific manner. So, now she is a deceitful, conniving, gigantic fucking cunt. You think I get mad when journalists misrepresent Science, for a PhD, a principle investigator to do it in a malicious manner… Im not being funny, guys. I am genuinely angry at this woman.

    ‘Ad hominem’ statements that do not appear on ERV:

    Judy Mikovits is fat, therefore, her science is flawed.

    Judy Mikovits eats babies, therefore, her science is flawed.

    Judy Mikovits is a cunt, therefore, her science is flawed.

    ‘Ad hominem statements that do appear on ERV:

    Abbie is MEAN, therefore, her criticisms are invalid.

    Libelous statements that appear on ERV:

    You can’t claim to replicate a study if you don’t do a single thing that we did in our study,” she said. “They skewed their experimental design in order to not find XMRV in the blood.”

    “They paid to have their study published in the Public Library of Science, and it was then picked up by Science (magazine),” said Mikovits said, who suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study.

    As we say on SciBlogs, sir/madame, go fuck yourself sideways with a rusty knife.

  34. #35 ERV
    April 2, 2010

    ADS– The only thing I would point out is that it appears that AW reacted (even if she perhaps over-reacted) above to personal attacks made by some of the people commenting here.

    Quote it.

    A*** W*** has not been a topic of conversation on ERV in anything but a casual manner– “She got sick when she was 15″ “No she was 11 or 12″ whatever. This is all information available online/in press. A CFS patient brought up that Mikovits might be influenced by A*** W*** relapse after vaccination. It is 100% valid to wonder if WPI/Mikovits might be biased by their personal feelings for A*** W***.

    There is no excuse available to WPI for threatening and intimidating a grad student.

  35. #36 Prometheus
    April 2, 2010

    “I know you’ve said you don’t give a shit about CFS but humor me if you will.”

    Okay.

    *binnng*

    You’re humorous.

    Have fun at the convention, but don’t sit next to the aspies they won’t “get you” if you are humorous,

  36. #37 Shirakawasuna
    April 2, 2010

    JAS, you asked for criticism of her work as if there wasn’t any that was legitimate. I pointed out that there has been plenty listed, almost none of which has been addressed. Now you excuse yourself from that discussion by saying you don’t have a scientific background? It sounds like you didn’t really want or expect there to be legitimate criticism of her work or more recently her embarrassing public actions and now don’t know what to do.

    And no, if I was XMRV+ve I would still know how weak the science is at the moment. You keep saying we should ‘wait and see’. I agree, right now the data is very ambiguous, so much that one shouldn’t even speculate about XMRV unless it’s with colleagues. Not directly to people with diseases, that’s extremely irresponsible behavior. If every researcher (or doctor) talked about every ambiguous potential cause of a disorder you would be overwhelmed, even if it turns out to have only one etiology. That’s why they don’t do it: they don’t want to give false hope, they want to be clear about how little is known. ‘Possible’ often means ‘probable’ in common vernacular.

    You keep telling me not to decide too soon… and you keep thinking that it’s about any association between XMRV and ME. We’re not the ones deciding ‘too soon’, we’re simply pointing out how causality hasn’t been shown. In fact, mere *correlation* hasn’t been shown. Yet because she has done research which may be related to your disease, this excuses her irresponsible behavior? Her knee-jerk accusations of *fraud* when another group could not confirm her findings? Her public statements promoting her research, despite ambiguous results? Her speaking at an antivax convention? I don’t see how that could possibly work, even if you’re desperate.

    Your final comment is about tone. Just to be clear, you *came* to this blog, read it, and are now complaining about tone. You don’t actually have to read it and a blog is a ‘weblog’, a personal account. There’s absolutely no reason Abbie or anyone else has to censor themselves and not mock someone acting so stupidly as Mikovits. All kinds of crackpots attempt to speak about serious issues – should they not be mocked? Should they not be seriously criticized? Pointing out (humorously) that a researcher is acting crazy (or evil) is fair play. The researcher being irresponsible is the one playing games with you, giving you false hope.

  37. #38 Moron
    April 2, 2010

    ERV,
    I think your criticism is perfectly fine. Good, even. Two points not inconsistent with this are the points I was making.

    1. A person can be naive on one thing, and right on another. (I just thought of another: Lynn Margulis.) This has nothing to do with your criticism per se, but rather with the bigger controversy around the paper in Science.

    2. Even the best criticism should have the right tone. At least, most people would think so. One has to wonder what your thoughts are about the tone traditionally used in scientific conflicts, which your voice, uh, diverges from. Why does that tradition exist, how does it function? I suspect it is not totally without benefits to the process of science. Everyone knows that opposed scientists usually hate each other and that their restrained tone is ‘phony.’ But nevertheless, the human mind has lots of cognitive biases. Superficially different presentations of the same essential thing are not always treated the same way by the mind. It is possible that reading half-snide euphemisms is not as offensive as reading the actual thoughts we all know they really stand for. There is an compelling interest perhaps in not creating scientific factions that are not on speaking terms with each other, since obviously there is a great deal of protracted uncertainty and conflict in science, much more than laymen realize.

  38. #39 Shirakawasna
    April 2, 2010

    Three Chord Monty, Mikovits almost hypothetical contributions to CFS research do not excuse her behavior. Your desperation to have your condition treated as a legitimate illness does not excuse her behavior. It doesn’t matter if she won the Nobel Prize at some point, *she’s acting like an irresponsible, evil person* right now. Acting like this just once is often enough to ruin a reputation because there are actual standards in science. Publically displaying a lack of integrity, obviously and illegitimately accusing others of fraud, and jumping on the woo/antivax bandwagon are all very clear signs that she’s given up being a responsible scientist.

    And I suppose I shouldn’t even have to mention this, but it seems necessary: anecdotes are not correlation and correlation is not causation. There could be a user group of 50,000 people with CFS who ‘just know’ it’s not psychological and they would all be *anecdotes*. A handful on a blog who ‘just know’ is not impressive. It’s the same fallacious reasoning used for all kinds of pseudoscience and antiscience, so you should recognize why it’s not convincing and unimpressive to someone with a scientific bent. Your personal outrage at receiving rational skepticism is misplaced and does not constitute an argument for the legitimacy of an XMRV-CFS connection, the acceptability of Mikovits’ actions, or Abbie being incorrect.

    Now presumably all of you will get distracted by tone again, since mockery is just so ‘unprofessional’.

  39. #40 Moron
    April 2, 2010

    > we’re simply pointing out how causality hasn’t been shown. In fact, mere *correlation* hasn’t been shown

    Correlation has been shown by reports from three labs. But it hasn’t been shown to be true. Reports are reports, wide-scale replicability is truth.

    If a ~100% correlation is actually shown to be true, doubts about causation will be fairly limited. Koch’s postulates are an epistemological ideal, they are not a standard that can actually be met in most cases. The ideal is very useful nevertheless: it shows you what work should be done to make conclusions as strong as they possibly can be.

  40. #41 Moron
    April 2, 2010

    > Now presumably all of you will get distracted by tone again, since mockery is just so ‘unprofessional’.

    Why do you think professional decorum is traditional in science? No reason at all? That’s possible.

  41. #42 Petra
    April 2, 2010

    @Moron #99: “ERV’s not exactly the sweetest being on the planet but it’s a bit much to advocate messing with her in real life.”

    You’re right, of course. People: Please do not f*ck with ERV in real life! Srsly. But it does go to show that it’s all for lulz until it’s *you* being ripped on, by name, on the web. Perhaps Judy M feels equally creeped out by your ongoing vitriol, ERV – like why does this chick have some kind of vendetta against me (A** W** seems to). Remember that old golden rule! Maybe this can be a little afterschool special lesson for us all. C’mon, group hug. No? jk!

  42. #43 ME
    April 2, 2010

    Anything I have had published I have been paid for. In the publishing world if you have to pay to get something published it is usually by a vanity-type press and isn’t considered a legitimate form of publication.

  43. #44 ERV
    April 2, 2010

    An illiterate writer. How poetic.

    Let me try to make this more clear for you:

    EVERY PUBLICATION THAT ANY SCIENTIST HAS EVER SUBMITTED TO ANY JOURNAL HAS BEEN PAID FOR BY THE SCIENTIST. EVERYONE PAYS TO PUBLISH. THAT IS HOW IT FUCKING WORKS IN SCIENCE, LIKE I SAID FUCKING MONTHS AGO, YOU ILLITERATE RETARD:
    …No one who has ever published anything would say something that goddamned stupid. You pay to publish in every journal, stupid! Thats the whole fucking point of PLOS! Classic journals make you pay to publish, then volunteers review your papers, then the journal charges for article access. PLOS, you pay, people volunteer, but everyone gets to read your shit…

  44. #45 ben
    April 2, 2010

    ME: every single published paper in every scientific journal I have ever read has a small section on the bottom of the first page saying that the printing costs have been paid for in part by the publishing scientist and the paper must therefore be marked as an advertisement. Every grant has included in it funding to pay for the publication of papers for this reason. I suspect therefore that you aren’t in the habit of reading or publishing scientific papers, in the future I would refrain from commenting on them to avoid looking like a complete tit.

    The characterization of scientific journals as “vanity type press” might have some truth to it though.

  45. #46 Soho
    April 2, 2010

    ERV, I don’t know if the ME Mafia are mentally challenged, but what they describe here about themselves is often consistent with debilitating mental illness. Suicidal ideation, drastic sleep disturbances, obsessive/compulsive behavior, hypochondria, persecution complexes.

    In a psych ward, a patient may be treated with all sorts of medications and other therapies, but often the biggest contributor to recovery is being “reset” in an environment where illness-driven self-destructive behavior is replaced by regiment. Going to bed and getting up at a certain time every day. Eating three healthy meals per day. Interacting with other people in the real world. Getting some exercise and engaging in productive activities.

    Simple as it would seem, it’s easier and more attractive to deny the real problem and time-tested solutions and instead to construct an enemy–Simon Wessely, ERV, XMRV–and pour one’s life into destroying that enemy. It’s destructive for everyone involved, and the “enemy” Wessely, ERV, or XMRV is not real. He/She/It is a caricature, a construct.

    You could excuse this behavior with a kind of insanity defense but even very ill people probably including some of the ME commenters above understand that the EVIL ERV in their heads is different from the real Ms. Smith. Different enough to make them uncomfortable with real world attacks on her. The ME maliciosos and their truly twisted “scientific” and political puppeteers are happy to ignore the distinction.

  46. #47 Prometheus
    April 2, 2010

    Soho @ #145

    Uh-oh. You stuck the pin in the party pig.

    Please adjust your cluster B personality disorder headgear and keep your arms inside the gondola.

    We’re goin’ for a ride.

  47. #48 Moron
    April 2, 2010

    > what they describe here about themselves is often consistent with debilitating mental illness

    You are travelling in circles. You are assuming that a mental etiology is proven for ‘mental illness.’ Is this possible a priori, yes. Is it proven that depression is psychogenic? No. Is it proven that the cytokine hypothesis of depression is false? No, it is a vigorous hypothesis. Here is one of the most impressive papers that found many different cytokines to be very highly elevated in major depression. There are several more such reports. There are equally many that found nothing, so there is a big and very longstanding dispute. What is not controversial at all, and repletely confirmed, is that administration of exogenous cytokines for cancer, hepatitis, etc, is highly depressing, and mentally and physically fatiguing.

    ‘Mental illness’ is not a clearly objectionable phrase. It does describe the illness. But the fact that it implies a mental etiology is very unfortunate.

    > often the biggest contributor to recovery is being “reset” in an environment where illness-driven self-destructive behavior is replaced by regiment

    Fair. This may stabilize people, and there’s no doubt that behavior patterns can be a determinant of the waxing and waning of degrees of distress in mental illness. But can you show that it regularly effects radical cure? What’s the evidence for a long term effect on chronic mental illnesses? If there isn’t much, why should we think that this is pointing to the actual root of these conditions?

    > Suicidal ideation

    It should be pretty clear that suicide can result from any unbearable distress when there is little hope of relief – not only from the disease entities known as mental illnesses. Suicide rates are robustly elevated in severe physical illness. I would appreciate it if you would concede this point if I have convinced you on it; I will very readily do the same if you convince me of something.

  48. #49 Moron
    April 2, 2010

    Prometheus,
    Don’t be a wallflower. Since you get such a kick out of this, why not pitch in and join the pyrotechnical meltdown yourself? I realize you aren’t trained as a scientist, but you aren’t exactly slow witted. So whaddya think of the logic I just applied?

    By the way y’all, the paper I just cited is free online. If you just want to see the data, go here:
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2267745/table/T1/

    The paper is from Harvard. That doesn’t prove it’s true or imply that one should not appraise it on it’s technical merits. In reality, though, we all know that there is no belief or disbelief, only degrees of belief and disbelief, and being from Harvard increases the probability that the paper is true. If there were a betting market on scientific disagreements, and we were all betting in it, obviously none of us would completely discount the information of where a paper was written and where it was published.

  49. #50 Moron
    April 2, 2010

    > what they describe here about themselves is often consistent with debilitating mental illness. Suicidal ideation, drastic sleep disturbances, obsessive/compulsive behavior, hypochondria, persecution complexes.

    Google [insomnia lupus]. Then google [insomnia multiple sclerosis].

    > obsessive/compulsive behavior

    “CONCLUSION: Obsessive-compulsive disorder was 10 to 15 times more common in this cohort of patients with SLE [lupus] compared with those in community-based studies of OCD.”

    http://www.ncbi.nlm.nih.gov/pubmed/15096067

    If anyone doesn’t know what systemic lupus is, it’s a physical, inflammatory illness.

    > hypochondria, persecution complexes

    Obviously CFSers are in conflict with those that deny their physical illness. This conflict is legit if they really feel like they have the flu. When you say “persection complex” you are covertly assuming that they don’t really feel like they have the flu: else their beef would be legit. Therefore, your argument has the form:

    -CFSers don’t really feel like they have the flu

    -Hence, there is no reason for their anger at people who deny that they feel like they have the flu

    -Hence, they have a persecution complex, suggesting a mental rather than a physical illness

    -Hence, we can conclude they don’t really feel like they have the flu

    Do you see a logical fallacy here?

  50. #51 Prometheus
    April 2, 2010

    Moron,

    I don’t think your proposals are out of left field.

    I don’t draw mind-body bright lines.

    In the past when I have suggested that anybody battling a major illness can use a little cognitive behavioral therapy and depression treatment to avoid alienating social support systems and family the response was…well…crappy.

    The CFS gang accused of carrying water for a balding British bicycle enthusiast and the reactions were akin to walking onto the set of Romper Room and saying “Wow! You kids sure are sexy.”

    All psychiatric, psychological and cognitive treatment modes apparently incorporate straw, chains and shock therapy tailored to discredit the physiological causation model of CFS(who knew?).

    There is also the downside of discussing post-cartesian scientific models attracting christian apologists.

    I’m no wallflower but I will not dance with christian apologists. They step on your feet and want to saddleback in the parking lot.

  51. #52 Soho
    April 2, 2010

    I missed the part where I argued for complete mind-body separation. Must have been the other Soho who said that? Or maybe someone just knew what I meant, like they know what Wessely means? About time for me to make a negative behavior choice to grab a cold brown bottle. Happy weekend.

  52. #53 Moron
    April 2, 2010

    Oh, you’re gonna get all biopsychosocial. Uh oh.

  53. #54 Moron
    April 2, 2010

    I haven’t thought about that stuff much before. I mean I get what a diathesis-stress model is. But I haven’t like, pondered it much.

  54. #55 Moron
    April 2, 2010

    How about Swedo’s paper about 10-15x overrepresentation of OCD in lupus. That might let you make a decent argument that OCD, at least, might in some or all cases be *solely* physiogenic, not at all psychogenic.

    Such an argument might not convince everyone completely but here it is. OCD might cause lupus (rather implausible). Assume lupus often causes OCD. Why? Through a physical mechanism, a psychical one, or a mixed one. Lupus sucks, but it’s a lot like other inflammatory diseases mostly, and all diseases mostly have the same fundamental nature: they suck. So why would having lupus cause OCD through a psychical or mixed-psychical mechanism, when other diseases don’t? Therefore it is likely to cause OCD by a purely physical mechanism, not a mixed mechanism.

    I admit, something like 10% of lupus subjects are somewhat psychotic. That’s quite interesting, and unusual for a common chronic illness with well-known physical lesions, better known for bodily effects like arthritis, rashes, fatigue, and malaise. So maybe psychosis could cause the OCD of lupus through psychical mechanisms. This would explain why rheumatoid arthritis, cancer, and all kinds of other diseases doesn’t cause OCD: they don’t cause psychosis. But I really doubt that all the excess OCD Swedo found in lupus stems from psychosis.

  55. #56 whocares
    April 2, 2010

    @ “Soho”:
    “What can decrease NK cell levels and function? Lack of exercise.”

    In that case there would be no difference between CFSers and sedentary controls, and everyone who wasn’t exercising would be complaining of the things that poeple with ME are complaing of. If your answer to that is “yes they are”, that only demonstrates with great clarity you do not know what it is that ME sufferers are complaining of, that you do not care to know what it is sufferers are complaining of, and how much you buy into the enforced squaring of the circle which has been going on since before 1988 when the CDC laughed at the people/doctors of Incline Village they had yet to visit.

    “Like the people the ME malicia bully and brainwash to refuse GET.”

    GET is contraindicated in ME, which is a chronic exertional disease, not an acute or behavioural one. GET is however, suitable for the people you obviously have a greater interest in. In case you hadn’t noticed, the data from large reviews of GET in Europe shows working hours decreased after GET. And there are still no GET studies on those with significant disability. Of course you won’t hear that from those whose careers have been built on saying otherwise. It sounds like your the one who’s been “brainwashed”.

    “What else decreases NK cells? Stress. Like what happens when you cruise the internet looking for conspiracies and affronts.”

    Early outbreaks recorded in 1930s (atypical polio) and 1950s. No Internets. 1980s – still no internets to speak of. Sporadic cases = no knowledge from mass “hysteria”. Oh dear, your garbage theory is collapsing.

    “Or when you confront doctor after doctor after doctor and work yourself into conniptions until you find one to sign off on the diagnosis and treatment you want.”

    I shouldn’t really be dignifying this drivel with a response, but I was “signed off” by the first doctor who I saw. I think it’s supposed to be part of the agreement that doctors don’t have a right to foist treatments on people either, yet that hasn’t stopped many damaging cases of eg. children being forcefully removed.

    “How many people do you know who go from blog to blog to YouTube to news comment section and back around for days without sleep? I know some ME patients who do that”

    How do you “know” this with such avowed perception, are you living in some sort of field “hide” in some sort of ME commune in order to glean these anthropological pearls? Or is it, this is what the gossip says at the canteen and in the Daily Bigot? Or maybe you’ll just bullshit whatever reifying nonsense comes into your head? I hope you don’t treat your “other mentally ill” (sic) patients with such obvious disdain.

    “Why reach for a virus when stress, disrupted sleep, and sedentariness could explain the phenomenon?”

    Firstly, because science is about examining all possibilities to discover the facts and not merely making an assumption based on a dice-roll, and secondly, because it can’t. You’d have to be either a) very illiterate in the field or b) Very biased ie. prejudiced that CFS “unexplained” = “mentally ill” or c)Very stupid, to make such a claim. Oh, but I’m sure you’ll follow up by claiming that inactivity also “causes spinal inflammation”, as some wag at Crippen’s blog propounded, amidst a flurry of invective.

    “Blame the ME milicia who keep sufferers in denial and away from treatments.”

    Treatments that surveys show make 50% people worse, and which large reviews of RCTS show lead to reduced functionining? And when you say “ME milicia (sic)” who are in “denial”, you mean who reject your cultish belief system that “ME doesn’t exist”? Nice try.

    In your NK speil you managed to not mention any of the other plethora of “unexplained” (see, that means, “not explained by deconditioning or wackiness or laziness” as much as anything else) findings such as muscle function abnormalities, endothelial abnormalities, Co-Q10 and hormone deficiencies (opposite of “stress”), specific signs such as dysphasia, episodic blurred vision, wheat and alcohol intolerance, the possible presence of remissions (sometimes lasting years) in some cases. Many published studies show responses to exercise paradoxical to what would be expected in sedentary or deconditioned pts. Lynne Gilderdale had had GET at a hospital, it put her on morphine on her back permanently. No-one like her has ever been studied in your blessed RCTs, but hey, who cares about the facts!

    The day you can convince me (perhaps) of CBT/GET is the day you can show me a paper where the above symptoms/problems have been addressed and not merely “chronic fatigue”, whatever that is. How can deconditioning be causal if there can be spontaneous remissions?

    I don’t care if tired mentally ill depressed/anxious people want CBT/GET, more luck to them, but it’s the apathetic lumping of people with disparate diagnoses together and the cynical flying of all under a “ME/CFS” banner which is foolish at best.

    BTW, a recent paper seemed to confirm Bazelmann’s one that found a lack of deconditioning (which has never been proven, merely parroted with sneering arrogance by people like yourself). Anyway you got bit of a lesson here. If you’re a scientist or a clinican I hope your thinking cap is on straighter, normally, and you don’t make such an amateurish hash of it as you do with your “debating” or whatever your half-baked sophistry could be called.

    PS. Re Mikovits and XMRV, I’m still doubtful, and I do think the WPI suffer from poor PR judgement. But lets not forget the NCI and Cleveland clinic were also involved in the original study. Good science rather than hot air will clear this up, eventually.

  56. #57 whocaresevenless
    April 2, 2010

    And accusing ME sufferers of “bullying” is laughable, when the medical “profession” are the ones calling people “pond life” (prescribers’ journal) and “lazy bastards” (nurse in
    survey) and saying sufferers should have a bullet in the head (anon doctor on blog).

    They’re the ones calling patients “disgusting”, denying social and financial support, threatening to section, remove kids because to a pediatrician ME = child abuse obviously, and promoting therapies as “safe” which have a very high degree of worsened outcomes in the subset of CFS who meet ME criteria. You couldn’t make it up and nobody is making it up. What planet is it on that none of this exists and instead patients have the entire medical establishment in an armlock, and not merely, the reality of a dozen mild-mannered people at a May 12th demo and some letter-writers and bloggers?

    I think you’d have to have a very skewed perception to view a patient group who were so much disagreed with as somehow having this imaginary upper hand. Authorities and experts are called so for a reason (though not always the right one, as the MP expenses scandal illustrates).

    This sort of nonsense is the stuff calculated to keep the status quo and keep people hateful, mocking and suspicious of sufferers, which so belies your assertion of there being no affront and so on.

    Someone suggested suicidial ideation was a symptom of ME/CFS – it’s not, by the way.

  57. #58 Moron
    April 3, 2010

    Yes it is. Nice post though. Well, maybe it is. Are you saying there is no excess as compared to healthy normals? I couldn’t disprove that categorically. I’m relying on my impressions from reading thousands of pages of posts written by patients, not on real data.

  58. #59 meagain
    April 3, 2010

    “While vigorous aerobic exercise is beneficial for many chronic illnesses, CFS patients can’t tolerate traditional exercise routines. Exercise programs aimed at optimizing aerobic capacity are not recommended.”

    http://www.cdc.gov/cfs/cfstreatment.htm

    Compare with a UK (Liverpool) clinic:

    “The type of exercise needed for recovery is aerobic exercise”

    Are they really talking about the same illness?

  59. #60 Moron
    April 3, 2010

    I ran three miles, fast, three times a week for almost the entire 12 months of so of my decline. I cycled everywhere, not having a car. My running performance got lower and lower. After I was really severe, I ran three times, and got sick from it each time. Then I had to move out of where I lived with a few possessions and no furniture. My parents did most of it, but I got sick from the effort, had dyspnea for hours after stopping while lying perfectly still, and had total agony the next day. I was a competitive athlete from ages 14-18 and an avid recreational one from 18 until getting sick at 22. I’m hardly the only one meeting this description.

  60. #61 Moron
    April 3, 2010

    I did about fifteen bicycle rides of 80-120 miles, from ages 18-22.

    Twice I rode 120 miles to visit my folks and then rode back after two days of rest. Not exactly a world record. (The Race Across America covers 3,000 miles in about a week.) But not trivial.

  61. #62 Borges
    April 3, 2010

    @ERV EVERYONE PAYS TO PUBLISH.

    Like Mikovits had to pay to publish in Science? You cannot be serious. Your link is to a selective price comparison table of Gold Open Access journals, lol.

    Gold OA journals account for only 15-20% of research all told, and only half of those charge author fees.

    90% of authors don’t pay. You would know this if you actually published any research.

    What else are you an authority on?

  62. #63 Justin Reilly
    April 3, 2010

    erv-

    Are you a ‘pathetic excuse for a [future] scientist’, ‘mentally handicapped’ or ‘just plain stupid’ because of some irrelevant, superficial indicia like that you ‘just’ went to Truman State, are ‘just’ a grad student at Oklahoma State or aren’t knowledgeable about the whole sordid history of politics of ‘CFS’ posing as science? No, you are not.

    I would like to judge you on your thoughts and what you contribute to science and society. Please give Dr. M and other ME/CFIDS experts the same curtesy.

  63. #64 Borges
    April 3, 2010

    @ERV EVERYONE PAYS TO PUBLISH.

    Like Mikovits had to pay to publish in Science? You cannot be serious. Your link is to a selective price comparison table of Gold Open Access journals, lol.

    Gold OA journals account for only 15-20% of research all told, and only half of those charge author fees.

    90% of authors don’t pay. You would know this if you actually published any research.

    What else are you an authority on?

  64. #65 Sal
    April 3, 2010

    Wow, hadn’t checked this blog for a while, and now I read Abbie (the author, “ERV”) complaining that people are “threatening and intimidating a grad student” (i.e. her) in asking for a civil discussion, a request that has been made for quite some time.

    Oh my. Poor little grad student, who uses her internet platform to call well-respected scientists and sick patients names in a string of foul-mouthed ad hominem attacks, and appears simply as a bully who has to have her own way, damn the evidence?

    Really? Get a life, Abbie. Maybe this blogging thing ain’t your cup of tea.

  65. #66 pi
    April 3, 2010

    Even the tide wouldnae take ye oot, Bessie.

  66. #67 pi
    April 5, 2010

    A bit but and a bit ben maks a mim maiden at the board end.

  67. #68 docwithme
    April 6, 2010

    For the guy who wrote that people with ME\CFS were all mentally ill people who suffered suicidal ideation I am shocked at the absolute hatred in your post. It was vile and nasty.

    I am a medical doctor who really didn’t believe in ME\CFS. I knew patients were ill or thought they were ill but I didn’t know why they were ill. There were a few I thought were depressed etc but others were patients who had been healthy, happy outgoing people that I rarely saw except for well woman check ups etc etc. Suddenly they were ill, listless etc.

    But I still didn’t believe in ME/CFS as such. I believed that they might all have different illnesses or that they may be atypically depressed. Then I got ME/CFS.

    I am lucky as I have enough money to not have to work for a few years and I can rest as much as possible, afford to eat well and live a pretty stress free life. I do not have children either so my days really are my own.

    I am not suicidal, or depressed neither do I have any OCD symptoms (except checking the gas is off a couple of times before bed lol). Yet I am still physically ill over eighteen months later. One thing I have found in really beginning to talk to people who have contracted this illness is just how many ‘high acheivers’ get it. Lots of sports people suffer with it and many business people. That doesn’t fit with neurotic under acheivers moving from doctor to doctor desparate for a diagnosis that allows them to wallow in self pity.

    The remarks by some alleged scientists on here are enough to bring the whole profession into disrepute. Surely a scientist without a scratch of humanity is a poor scientist indeed?

    With regards to the psychologising of this disease – it is not just this disease – it is happening more and more with many illnesses. A patient of mine who had cancer was upset that she was told by a nurse that her attitude was not positive enough and that this would effect her outcome. This is now a pernicious belief within parts of the health service in the UK yet studies show no correlation whatsoever between positive mental attitude and recovery.

    As more and more illnesses are facing being re-classified as somatoform (asthma, interstital cystitis, etc) then scientists should keep an open mind and keep looking into possible causes even if they face many dead ends. Not just give up on huge swathes of patients and label them as mentally ill. Shame.

  68. #69 cynical1
    April 7, 2010

    Though I’m loath to even throw my two cents into this longwinded diatribe by many parties, I’m on vacation and I forgot the next book in my series with no local bookstores, so why not……

    I have published quite a few papers (as senior author) in several journals from work that I have done in industry. I never paid anything to publish. In the old days (the ones when you weren’t born yet Abbie – no you’re NOT old) we would have to pay extra if we wanted more than the standard 10-20 reprints we got when the manuscript published. However, neither I (nor my employer) ever paid any fees for publishing in the chemistry journals. So I believe you are mistaken on that point. I am NOT justifying the remarks made by Mikovits regarding PLOS vs. Science ect. and have never published in either journal. Paid subscriptions are usually required to view most journals, although reports of (some, all?) govt.(NIH?) sponsored studies are available to anyone for free. Perhaps, there is the distinction to which you refer. Journals may require fees for those types of publications for open access.

    Also, with regard to Moron’s statement in post #154 regarding 10% of lupus patients being “somewhat psychotic”. I would suggest that your knowledge of SLE is very limited. Demyelinating lesions in the white matter of lupus patients is very common and the disease falls in the differential of other demyelinating ailments including HIV infection, syphilis, Devec’s disease (neuromyelitis optica), lyme’s disease, HAM/TSP and, of course, multiple sclerosis. Suffice it to say that white matter lesions can cause a multitude of psychological manifestations too lengthy to list here. However, I do not believe that demyelinating lesions are commonly found in CFS patients.

    One other tiny piece of advice for the posters on this blog: Be humble – a lot was discovered before you were born.

  69. #70 Moron
    April 7, 2010

    Cynical,
    I own Dubois’ Lupus. But I haven’t read the whole thing, let alone scrutinized it. Or many papers. So, no true expertise claimed.

    Anyway, I didn’t say a single word about demyelination: I just said 10% of SLE patients were somewhat psychotic. It is, honestly, not clear in what way you are disagreeing.

    You are right that excess rates and amounts of demyelination, (compared to normals) are not found in CFS. Indeed, there don’t seem to be any kind of structural abnormalities in the brain that are visible on scans of the living person: but there are a number of claims of functional ones, visible on (at least) SPECT.

    Here is a ref claiming 10-15% lifetime incidence of acute psychosis in SLE (see the bottom of the page). This figure includes iatrogenic cases, but specifies that they are a minority. And here is Dubois’ Lupus giving a figure of 8%, seemingly also a lifetime prevalence including acute episodes.

    By psychosis I mean frank and disruptive hallucinations, or multiple wacky delusions of a sort not found in wacky normal people. When I googled on this, it seemed that some sources do use a very broad definition of psychosis in lupus that I would consider very strange. I also saw this estimate (of psychosis in SLE) running down to 2.5% (that’s a prevalence – and apparently a lifetime prevalence rather than a point prevalence).

    So yeah, estimates vary but I’m not sure my statement was way off-base. My statement was vague of course because I didn’t specify “lifetime prevalence, including acute episodes” or what have you.

  70. #71 cynical1
    April 8, 2010

    Moron – Your use of OCD in lupus patients to make or further any argument above is hopelessly flawed. Get over it. If you want your disease to be taken seriously (as I think it should), then you ought not try to be its scientific spokesperson. You are ill-suited to the task.

  71. #72 Moron
    April 8, 2010

    Cynical,
    Your arguments are mistaken. I think I see now (and only now) what you are saying about known, gross lesion types. You are suggesting that if there is a purely-physical cause of OCD in SLE, then said cause is probably some sort of known gross brain lesions. These lesions are absent in CFS, so you therefore suggest that there is not likely to be a purely physical cause of OCD in CFS.

    What you bring up is not uninteresting, but it is far from conclusive. You are making two important assumptions, without recognizing them as assumptions.

    First of all, the known brain lesions of SLE are not, to my knowledge, proven (or nearly-proven) to be the cause of any or all of the clinical symptoms termed neuropsychiatric. (I would request a reference, if you disagree.) In fact, while correlation is not causation, there is not even a 100% correlation between clinically-defined neuropsych lupus, and those lesions (seen on autopsy). The correlation is a fair ways south of 100%. Therefore, your criticism of me rests squarely on an assumption that is quite unwarranted: the assumption that those lesions are the only possible physical cause of OCD in SLE.

    Second, it is entirely possible that the gross lesions do cause the OCD of SLE, but that other lesions, yet-unknown and very fine, cause it in CFS. But anyway, I tried to make clear that my point was simply to suggest, and perhaps provisionally/experimentally prove, that OCD has a purely physical cause in lupus. If someone accepted my proof, he might go on to strongly suspect a purely-physical cause of OCD in other contexts. But he certainly shouldn’t be 100% confident that this suspicion is true – and I acknowledged this.

    To repeat an important point lest I be misunderstood, I’m not using a non-materialist philosophy of mind when I say “physical” or “psychical.” I am assuming that mind states are simply brain states, and using “psyche”, purely for succinctness, to refer to the particular brain states and brain state changes involved in what we call “the mind,” “psychological trauma,” and so on.

  72. #73 Cort
    April 19, 2010

    I don’t know who you are – oh I see – Abigail – if I was a future employer and I poked into this blog, as I’m sure they will, honestly I wouldn’t hire you if you were the last grad student standing. Forget about the science,you can always get good postdocs – my guess is that your blend of arrogance, bizarrely cutting remaks and misanthropic tendencies will cause most employers to run far and wide – as they should.

    Honestly I wonder – did you experiment on live animals when you were younger?

    I don’t care about your thoughts on Dr. Mikovits; you may be right, you may be wrong – but most people with CFS, depressed or not,unhealthy as they are, stressed to the hilt, chronically ill with no treatments in sight,dismissed by much of the medical profession – are in far, far better control of their emotions than you are.

    Its kind of strange….

  73. #74 sue
    April 29, 2010

    proofs in the pudding

  74. #75 Eco
    April 30, 2010

    You flatlanders amaze me with your hand wrapped around your brain like that and clicking you boots and uttering your heil slogans to the gods of good science but then you turn around and unravel and offer yourselves up to the gods of psychobabble. These gods offer up a pot fermented in the juices of Freudian, Jungian, a dash of Rogerian, a little dash of Gestalt but finding the stew lacking some meat, these gods throw in a bunch of frontal lobotomies from years past and zap it with some good old electric shock therapy. Finding it lacking in some kick, they spice it up with some pop psych I’m OK, You’re OK or should it be I’m not OK & Your Not OK, squeeze some Mars& Venus juices in it or some light energy therapy but then a thunderous voice from one of the gods speaks and all is still.

    Here’s what I want, throw in some CBT and GET. Booms the voice from the god Wessely but Wait is it from Prism? Yes, good because I only want the best, booms Wessely as he reads the recipe from NICE.

    Wessely stirs the fermented pot. Wow, did you see those vultures fly out of the pot. Don’t worry about them booms Wessely,that’s what you call UNUM Vultures. They occasionally drop DSM manual shit everywhere. Search through the crap to find the latest psychobabble disorders so we can mix em in, he booms. Don’t they need any scientific research for verification before they can come up with a disorder? Nope we just pull things out of the air and call it science and everyone believes the gods. We can make nothing into something and back into nothing. Booms Wessely.

    Remember the good ole days when they call people with Parkinson, Diabetes, MS, Polio SIDS with psychiatric disorders? Then the gods of science came linking them to organic conditions. I mean what field day we had playing around in medicine without having to actually examine an organ at treatment? Psychiatry? You Bet! Making nothing into something and back into nothing squawks Wessely. We can’t measure Serotonin, Dopamine, Noradrenaline but we can sure give you medication and we don’t even know how much to give? We guesstimate. Is that science? To them it is. Heck, We don’t take spect or mri or fmri scans. It is really psychobabble. Yes and the medical profession must bow down to us the gods of psychobabble! Nothing into something and back into nothing squawks Wessely.

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