No Good Deed Goes Unpunished

Yesterday made clear that it is going to be a circus. All that’s needed is cotton candy and clowns. Annette Whittemore is still selling fairy dust and the fate of humanity depends on whether Judy Mikovits was perfect or not. It’s more exciting than a high wire act. The CAA, the folks at the CDC, most of the scientific community are all gleeful. They wanted to turn the iconoclast into Joan of Arc. Since she isn’t a saint, the Salem Witch Trials is a better metaphor. If the scientific community had actually been impartial, they wouldn’t be so happy. They say it needs to be about the science, not the scientist, but in fact, it was, and is, very personal, not about the science at all.

I am not a lab scientist and cannot evaluate the slides written about in yesterday’s Chicago Tribune. I refuse to read ERV’s blog on general principles. Trine Tsouderos seems to be slumming for sources. And Annette Whittemore, who has no viable option but to blame Dr. Mikovits for everything that ever happened at the WPI, has turned to the journalist with an agenda. The debunker. Necessity makes strange bedfellows. Even discounting my own experience of Dr. Mikovits, which makes fraud as an explanation for an error extremely unlikely, it makes no sense that she would intentionally subject herself to the possibility of that fraud being detected by using the same slide again on purpose. The only person who has a reason right now to characterize a mistake, if one was made, as fraud, is the person trying to save the WPI. And maybe ERV and her ilk. Now all that money that was just raised at Vivant and the WPI annual fund raiser can be spent on lawyers to go after Dr. Mikovits, as they try to continue to lure patients down the yellow brick road. The baby in this divorce? The grants. An institute without a chief scientist and a scientist without a lab.

What’s left? A lab running a bunch of tests that I can order from Quest and LabCorp, for which insurance will pay. A CEO who, when I was there, had six people working for her, including a personal assistant, while Dr. Mikovits had two, and then one. A doctor working for himself. An awful lot of empty space. Less than no respect at the medical school. A post doc. A paper which looks like, one way or another, it will be completely discredited soon with everybody calling everybody a liar. Some GenBank sequences and related patents, which I know very little about, but which I imagine are enough to muddy the waters for everyone else, and therefore prevent work from seeing the light of day. Why would anyone want to get into this mess now? My fear is that the WPI will try to exist without substance to preserve their intellectual property. At this point, the counter on the top of the side bar is counting more lost time.

All this in the context of: I still think a gamma retroviral hypothesis is the best one we have.

Today’s song: Stuck In The Middle With You

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267 thoughts on “No Good Deed Goes Unpunished

  1. >WPI also say they do not have possession of Dr Judy notebooks, but have not said who does.

  2. >One of the anonymous posters wrote:
    "Once again, this is not correct. The monkeys were infected but did not get sick. Whether they ever would have gotten sick if they'd not been sacrificed after 9 months is unknown. Maybe they would have, maybe not."

    I think the point is that "False positives" are most likely not false. The retrovirus left the monkey blood fairly quickly infecting tissue including prostate gland tissue. Did the monkeys get sick before they were executed? I guess one would have to keep them alive a few years to see if they got prostate cancer or developed secondary infections common to monkeys. Please note, that no one has concluded that these murine leukemia retroviruses cause any particular disease, just that they can spread to humans and monkeys, that they are dangerous in labs were workers are exposed to them – they are contagious. Should I have said the "monkeys got sick"? I will give you that.

    Please sign your name. No one will come and hunt you down.

  3. >Anon at 12:29

    I will try to watch the video when I have time.

    "I would also hope it would help to explain why the tone of Abbie's blog is so offensive" I know that Abbie's tone can be very abbrasive. She doesn't 'frame' things well (and I dare someone to go to erv try and argue that she should – that's been tried and it's not pretty). Personally I don't agree with some positions that she holds and I have been pretty offended in the past. Sometimes, you just have to be offended. But when it comes to science, esp. virology, she knows her stuff (or will tell you when she's not sure) and she will give it to you straight (well as straight as it can be in lolspeak). That's pretty valuable, to me anyway.

    Jamie, "We need some out-of-the box thinkers in the scientific community to think about us. I am willing to be the target of their wrath, if they will take off the blinders and notice us." That's fine, but they don't call it risky science for nothing. In this case it is particularly difficult because of the circumstances (misrepresentation of experiments), but in general you miss more balls when you swing for the fences so you have to be prepared for that. You may well be right to feel that relying solely on incremental science is not serving you well – many scientists in many fields feel that way, we talk about it a lot – but the reason it is that way is because funders (granting agencies, industry, NGOs) want to see positive results. If they spend a lot and get "well that didn't work" they feel like they wasted their money and so do the voters, shareholders, politicians, and donors. If it's big risk science most of the results will be negative by definition, and when your hoped for hypothesis doesn't pan out it is counterproductive to lash out at those who are saying 'this hypothesis should be disgarded'. It is the very essence of a scientist to be skeptical and critical. The good ones are especially critical of their own work.


    Paula – There is a campaign on two of the forums to game google searches to associate Abbie's name and institution with some of her more colourful statements and to try to damage her reputation in the comments of the media stories about the scandal. People are also sending some pretty nasty emails. I appreciate your sentiments but I'm not confident that you speak for everyone who is reading this. That being said, a pseudonym were sure help tell all these anons apart from each other.

  4. >If people point out the offensive hate-speech ERV uses, it's a campaign?

    And then there are emails apparently?

    Spin Doctor much.

    ERV damages her own rep enough. Comments have had to be posted in the absence of plurality.

    These claims for some sort of moral superiority are laughable.

    The great thing about anons MattK is that astroturfers lose the weapon of discrediting the individual while ignoring the wider issues.

    Of course, they can't be stopped from framing the issue in their arrogant definitives.

  5. >@Matt
    "It is the very essence of a scientist to be skeptical and critical. The good ones are especially critical of their own work."

    I would agree with this but also would argue that that skepticism should extend, at least at times, to established scientific beliefs. Abbie comes off as an A+ student, but its not clear how much she has experienced or opened herself up to in the real world. She (or others on her site- I admit I am not distinguishing) calls patients who support Dr. Mikovitz "flat earthers" but fails to recognize that it was scientists who defended the flat earth theory against radicals like Aristotle. She may be brilliant but the smugness, in addition to being annoying can also present an obstacle to scientific discovery. While she (and/or her followers) ridicule Osler's Web, it was, if nothing else an eye opening demonstration of the epistemic closure present in the scientific community. The doctors/scientists who know this disease best are those who have listened to patients, by choice or circumstance.
    As a Clinical Social Worker, I often dismissed parents reports that the condition was brought on immunizations. "Well, it appears that way because that is the course of the developmental disorder. It appears around age 2 which is also the time when parents, looking for answers, recall the immunizations. An unfortunate coincidence. Psychologically, having an answer helps people to feel less powerless." That is what school had taught me. And it taught me that "research clearly disproved" any relation. And I bought and sold it because I was a good student. Now, I am not saying that I now know this to be false – only that after watching someone suffer from CFS for over a decade and seeing how poorly the mainstream conceptions of disease fit with the reality, I have learned to take the "established research and medical opinions" with a grain of salt, particularly when there is a significant group of patients in vocal and sustained disagreement.

    I think Jamie's requests to you are sincere. The community needs your help. But please, allow the experiences of patients to have a place in your work. Instead of dismissing their concerns as crazy, misinformed or uneducated, ask how, if what they were saying was true, it might be explained.
    (I apologize for the spelling and grammatical error contained in the last post and note doubt, in this one as well)

  6. >@ Paula Carnes

    Monkey's had to be abandoned for HIV research as their immune response is nothing like that of a human. Gammaretroviruses are known to preferentially propagate in tissue, and are very very rarely detected in the blood.

    No research has been conducted as yet into the pathogenesis of HGRVs.

  7. >ERV is a HIV student. She has no knowledge of gammaretroviruses and how most viruses propagate. These viruses use colonal expansion, not reverse transcriptase. This is why they can none to little sequence diversity. HTLV has been known to not alter over successive generations in families. People need to recognise that this is a highly specialised field, with very few with the knowledge necessary to grasp why there is nothing unique about HGRVs as a potential cause of multiple human diseases. Frank Ruscetti and Judy Mikovits are uniquely placed to be experts in this new field.

  8. >Another reason for why Paprotka et al. should be retracted is failure to base the results of the study and conclusion, on the only assay that had a predetermined sensitivity (1-3 copies per 100 cells). The sensitivity having been determined after this assay DID detect VP62/XMRV in the early xenografts, two strains of lab mice and derived cell lines, 22Rv1 and CWR-R1. These results were then discarded, claiming that they could not detect other regions of the virus, despite it being well known that more sensitive assays are required to detect other regions of VP62/XMRV.

  9. >MDM – "I think Jamie's requests to you are sincere. The community needs your help. But please, allow the experiences of patients to have a place in your work." I'm sorry if I left a misleading impression but I work in a totally different (non-medical) field. I hope that future research finds effective treatments for you guys as soon as possible.

    You sound very nice – I don't want to argue about vaccines. I get what you're saying. Sometimes I know better than my doctor too (seriously sometimes the guy is just wrong and is not listening to me). It sucks. But sometimes patients are wrong too (including me). If we could really work everything out with anecdotes, intuition, and common sense then science wouldn't be necessary.

    "I have learned to take the "established research and medical opinions" with a grain of salt" – While individual scientists and doctors may have established opinions the overwhelming impression that I get is that the disease is not well characterized and most scientists and physicians who have taken an interest seem to know it.

    "Abbie comes off as an A+ student, but its not clear how much she has experienced or opened herself up to in the real world." I think Abbie has very good scientific instincts, real world or otherwise, because she had this pretty much pegged a long time ago.

    "She (or others on her site- I am not distinguishing) calls patients who support Dr. Mikovitz "flat earthers"" – I would take the time to distinguish. Some of the people commenting are patients, some are straight up trolls, some are scientists, some are even virologists, some are doctors. They're fighting like cats and dogs so I'm pretty sure they wouldn't want to be lumped all together. A couple of them are even fighting about the PACE trial, which many patients seem to have a particular interest in. I can't find a flat earth comment but, I'm not going to lie and say that I don't think it's pretty obvious what the overall ghist of the XMRV situation is. -MattK

  10. >Lombardi et al. discovered HGRVs. All negative papers have looked for VP62 despite that strain not existing in nature and despite the fact Frank Ruscetti and Judy Mikovits have proven the viruses they discovered are not VP62.

    Smith is a HIV student, with very little experience of HIV. Most retrovirus behave nothing like HIV. They use colonel expansion to propagate in tissue, not blood. Although some particles will very rarely find their way into the blood. They have likely to no sequence diversity, as HTLV does. HTLV has been found to NOT mutate over several generations in the same family.

  11. >The PBMCs for Frank Ruscetti's western blot were already activated prior to the addition of AZA. AZA does not activate PBMCs. AZA was not germane to the study.

  12. >This really boils down to very simple science

    gammaretroviruses are only found in blood in the acute phase of infection.Thereafter they are undetectable in the blood by PCR.The antibody response also fades with time due to follicular dendritic cells being compromised

    .Intermittent viremia results from opportunistic infection which reactivates latent viruses in the spleen thymus lung gut and lymph nodes.This reactivation leads to the presence of RNA in the blood compartment with sequence variability.

    This variation would defeat high stringency primers but could be detected by a PCR assay using low annealing temperatures and higher concentrations of magnesium.

    There is some confusion about the VP-62 proviral sequence.This sequence is a composite taken from three different patients and other prostate tissues.This sequence does not exist in nature.Thus using this sequenced synthetic clone to optimise a PCR assay will not enable that assay to detect xenotropic MLV related gammaretroviruses which do exist in nature.

    We know of at least three xenotropic MLV relared gammaretroviruses which are found in the human population. In other words there are a number of different XMRVs.XMRV is a description and not a definition

  13. >Coffin and Pathak's paper Paprotka et al. also failed to predetermine the sensitivity of the PCR assay on which all the results were based. Which then at best detected 2000 copies per 100 cells in the derived cell lines, but not in the early xenografts. This was despite knowing that an assay would need to be capable of detecting at least 1-3 copies per 100 cells in the early xenografts after detecting VP62/XMRV with the qPCR assay in those same cells.

  14. >All results which were not the later xenografts, because as we all know they didn't put the details of the RT-PCR assay that was used on those cells into the paper.

    Paportka et al. is impossible to replicate, read, comprehend without this assay included, as the results for it are included.

  15. >Paprotka et al.

    Failure to objectively name the 1 mouse virus discovered. Instead they choose a political name and called it PreXMRV-2, despite them not knowing if it could be a descendant of VP62/XMRV or even a cousin.

  16. >I'm not sure who wrote this, or if I am wasting my time replying but someone wrote,

    "Paula – There is a campaign on two of the forums to game google searches to associate Abbie's name and institution with some of her more colourful statements and to try to damage her reputation in the comments of the media stories about the scandal. People are also sending some pretty nasty emails."

    My reply which I would like to send to dear Abbie is this:

    I have a brother who is a physicist and a son who is a PhD math researcher. Both have amazing careers in research and both will humbly tell you in a heartbeat, "I do not know" when you ask them questions. Or they might say that there are various perspectives, and that needs to be studied further.

    Abbie needs a mom to tell her to respect others so that she can learn from them and maybe save lives. This is not a contest to see who can call another scientist a c**t or see who can use the F word the largest number of times. I keep wanting to caution her that there is a study that shows lab workers could get infected with murine retroviruses. They do seem to pose some risk to humans. Let's take life and death seriously. Let's work together to find out what we may be missing.

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