Coming Clean

Let me start by saying that I did not know where the notebooks were, or even that they were missing, until the lawsuit was filed. If Judy did this, she didn’t tell me. I knew how concerned she was about them and I can tell you as Judy’s friend, she believed that, as the PI (principle investigator), she had a right to them. She had no legal representation until the law suit and the legal issues are very complex. There are issues with not just who owns, but who can even see the notebooks. She said to me that the notebooks documented mistakes that others wouldn’t want brought to light, something she had only realized recently. In our communications, her concern was always for the research and fulfilling her promises to patients. There didn’t seem to be anything she wanted or needed to hide for herself. She was mostly concerned about the specimens, in the months leading up to this. She feared that they could be tampered with. Freezing and thawing destroys them. Her specimens were like her babies. So whatever she did, it was in that context. She and Max are very close, so he must have been very frightened to have signed that statement. Was he offered immunity or a reduced sentence? Did he have a lawyer? Max was missing for two days before Judy was arrested (and not listed on the Washoe County arrest list). My last text to Judy, around when she was being arrested was about Max, “Is it time to call the police?”.

I still think what I thought. The Whittemore’s have destroyed a very talented scientist, through the most incompetent management imaginable. And now Max. From my vantage point, the whole thing seems to have spiraled out of control after Dr. Lipkin’s visit. My guess is that the patents and saving VIP Dx/Univex are at the bottom of it all. As Annette likes to say, “Follow the money”. Or in this case, the lack thereof. As Harvey allowed me to say in the blog about VIP Dx, he doesn’t have more money to pour into this, since the real estate market went south. Now I imagine they feel entitled to recoup their investment. VIP Dx brought them down. It all began with good intentions, but they have lost their way, in my opinion.Here is the first email I ever wrote to the WPI, dated 10/28/09, after learning that commercial testing was being offered, before I met Judy in Jan 2010:

I am trying hard to think of WPI as a resource full of people who want to help, when nobody else has. But it has come to my attention that the lab that is doing the testing has a financial tie to a member of your board of directors. I am broke. I think four members of my immediate family will test positive for this or another similar virus. I pretty much know that anyway, without the test, but it might make a difference to my disabled daughter to be able to walk into a doctor’s office and say, “I have Virus X”. And I can’t even give her that, at the moment, because her acute medical problems have to take precedence.

I know a conflict of interest when I smell one. Shame on you.

Jamie Deckoff-Jones, MD

Their PR person answered that Annette Whittemore would contact me directly, but she never did. And there you have it. It never changed. She is non-responsive. Doesn’t answer email or phone calls. I’m sure lots of you out there can verify that statement. Her voicemail is often full. She disappears for long periods. Can’t make a decision to save her life. And when she finally does, it was generally the wrong one, in my opinion. I never signed a contract; she spun her wheels about it for months, but never managed to actually give me one. Even so, I wrote nothing after I was fired, except that I’d gotten a “pink slip”, until Judy was fired. Though I knew how terribly flawed it all was, my opinion at that time was that it was better for the patient community for them to exist. But without Judy, it is just a black hole.

With the implosion of the research, I no longer felt there was a reason to try to protect them. When they knew that they didn’t have a reproducible assay, the sale of the XMRV test became fraud, in my opinion, and I advised Judy in the strongest terms that she should quit, since she apparently couldn’t make them do the right thing. In response to my direct question, she told me that she demanded they stop testing on August 1 or earlier. I cautioned her that she might be an accessory to a crime if she remained silent. I advised her to give a press conference on more than one occasion. I didn’t blog before the fund raiser because Judy asked me not to; she was still trying to figure out how she could save it at that point. She was desperate to keep her lab, to fulfill her promises to patients. I wasn’t there, so I let it be her decision. For that, I owe the patient community an apology. I knew that the program was without substance and kept it to myself for several months.

I’m not sure exactly what went wrong with the BWG, but part of it was an attempt to validate their commercial assay at the same time. So again, they shot themselves in the foot over the commercial lab. When Lipkin came to dinner, Annette told him she had 19 people on the payroll. Judy had Max and Cassie, both without graduate degrees. And then just Max. Annette has a personal assistant.

Many have asked me what happened with me at the WPI. Here it is, and then I hope I am done writing about the WPI. I have good things to report from my practice, which is what I should be writing about. I can’t tell you all how badly I would like to be done with this. My goal in writing this blog was to be of assistance, not be an energy suck, which is what this whole sordid affair has become.

I became involved with the WPI, because patients corresponding with Judy were sending me her answers to medical questions. I told her that answering those kinds of questions was a reflex for me, and since she was really bad at it, she should let me do it. She thought it was a great idea, but that I needed to have an official relationship with the institute. So I became ?; don’t even remember the title, but it was an official, volunteer position that enabled me to respond to patient information questions.

Without reviewing our email for dates, in late 2010, since the clinic seemed dead in the water, I presented Annette with a model for structuring it, fashioned after emergency medicine groups, generally a contract held by the physician group. It’s set up that way to protect the institution from medical liability. Annette loved the idea and asked me to make it so. An LLC was formed and we hired a physician recruiting company who started to send candidates. I wanted to set it up as a primary care clinic with specialty back-up. I was looking for competent doctors, not specifically CFS specialists. It is one very homogeneous disease after all (I can hear the gasps from here:). Annette expressed her relief to have me, saying that she knew she couldn’t evaluate doctors. She acknowledged that she knew nothing about running a medical practice.

On 3/23/11, already in conflict, I sent this to Annette in an email:

A good administrator:
1. Knows what she doesn’t know.
2. Knows how to delegate.
3. Protects the talent.

She said I was mean. I said I’m the best friend you have. You are paying me to be a consultant and I’m telling you what I think.

I provided a rough spreadsheet, with some numbers provided by the WPI accountant, that showed roughly a million dollars a year in profit with 10 doctors, which would be donated back to the institute for research. The budget asked for $100,000 up front, to be quickly repaid, which included my salary prior to opening. I even said that it was possible to get it open with no money, if I paid the doc’s a percentage of gross, the way we did in the ER. I thought the distribution of expenses at the WPI seemed not in favor of producing any meaningful science, so I do admit to wanting to have a say in how the money was used. I expressed this to Judy, but not to Annette, though she probably sensed it. There was no evidence of a presence of a board of directors that I could detect at all when I was there.

I went to Reno to interview doctors in early spring. Two weren’t right, but Chitra Bhakta was perfect. However, 15 minutes before Chitra arrived, Annette informed me that she had seen new lawyers in Las Vegas and had decided to employ the doctors rather than structure it as a separate corporation. I told her that I thought it a serious mistake for her to employ or try to manage doctors directly. Managing doctors is like herding cats, having done it before. Before my first crash, I was a 20% owner of an emergency medicine contract group and medical billing company in San Jose, CA. My 4 partners and I had 3 contracts and were responsible for 150,000 patient visits per year. I was vice president of human resources. I was responsible for recruiting, hiring, firing, knee-capping. We had 50 doctors and 20 PA’s. I was, in fact, the right man for the job at the WPI. Though sick, I was willing to go down for it. I figured I could last at least long enough to get it up and running, find an onsite director. Getting fired saved me from myself, but I wanted to offer treatment to those 2000 people on the interest list. I wanted to develop a large database, so we could look at treatments in a systematic way. And Judy and I were planning the first clinical trial of tenofovir.

So Annette decided to employ the doctors, including me. I said, it’s your baby, structure it however you like, but let me get to work. My attitude was that I owed her a debt of gratitude that could not be repaid and I would do what she needed me to. We agreed that Chitra should be the first hire. I told Chitra she was hired and that Annette would be in touch with a contract. Well, six weeks passed and no phone call to Chitra, no contract, nothing.

I was planning another recruiting trip. I had at least two interesting doctor candidates, as well as a nurse. I also had a couple of practice manager possibilities. Quite a few of the interested candidates for staff positions were a little sick, which Annette wasn’t happy with, but as it was with me, that’s what there was, except for training newbie primary care doctors. No famous CFS doctors were stepping up to the plate, except for Dr. Enlander who called me and offered to fly to Reno on a regular basis to teach. The other thing we locked horns about a bit was that my approach is non-invasive with respect to treatment choices. I have a strong bias against treatments that can kill, as well as unnecessary invasive procedures when there is plenty of necessary tissue harvesting happening in patients that would be happy to help. But it was always clear that I would not be determining protocol for other doctors. That was never the idea. I was actually thinking that with different doctors doing their own thing, the database would help us sort it out.

Shortly before that trip, Annette pulled the plug all together, deciding that there would be no clinic. Rather doctors would lease space and have their own practices. When I went to Reno for the Lipkin visit, I spoke to Dr. Fredericks and asked him if he would consider using Practice Fusion, free EMR, for the patients that he saw from the WPI wait list. I was still hoping to create the database somehow.

I also asked and received permission for Chitra to see patients under the same deal as Dr. Fredericks. After discussion with Chitra, Annette agreed, then, never got back to her, again. From what I could unravel after the fact, the WPI lawyer somehow decided there was something wrong with her credentials that would prevent her from getting a NV license. Chitra did her internship in NV and then her residency in California. Her NV license needed to be reactivated, but there shouldn’t have been a problem with it. Precisely the kind of thing they needed an administrator for, but they fired me, so there was nobody bird dogging it that had a clue about the sytem. In the meantime, Chitra’s father died and she had to go to India. By the time she got back, the WPI had decided that there was some problem with her. It seems they have even damaged her reputation with this nonsense. In the midst of all this, I was fired, “because we don’t need a clinical director”, but asked to still volunteer, to write for their website or something. I think it happened because Annette is a control freak and couldn’t stand the thought of not calling the shots for the clinic. She did pretty much the same thing with the research, as far as I can tell.The Whittemore’s went public saying that Andrea takes a pill that makes her well enough to work and exercise, but wouldn’t say what it is. So patients, sending in their $10/month from their social security checks can’t even know, let alone hope to access what Andrea has. I expressed my opinion on multiple occasions that this was wrong and an exceedingly poor decision on many levels. It would have been fine to say nothing, but to use it to bolster the reputation of the institute, without disclosing what that treatment is was disgusting. And then Annette lying on the news about all the miracles happening. Using another patient similarly. We got her out of a wheel chair, but won’t disclose her treatment… Fairy dust. My loyalty is to the patient community and I am feeling guilt about saying too little, not too much. People have a right to medical privacy and certainly saying nothing was an option. Many, many people have asked me, but it is not my place to disclose anyone else’s treatment. I never have and I never will. However, as I said to the Whittemore’s, being a public figure has it’s responsibilities and this went down with typical ineptitude.

I am not going to guess what happened with respect to the notebooks before speaking to Judy. The black and white thinking displayed here and on FaceBook is telling. Even poor Lilly Meehan, the sweetest woman on earth, is collateral damage. If Judy isn’t a saint, then Annette must again be one, and Judy now has to be the sinner. All black and white. The reality is all shades of gray, imperfect people in an imperfect world. Epic fail. And that includes me, since I was briefly on the payroll. No matter what just happened with the latest chapter of this disaster, it was very unfortunate that Judy was hogtied by incompetence the entire time. Annette should have stuck to her fund raising activities. But she doesn’t know what she doesn’t know. It was like Keystone Kops. Amateurs. And who are the biggest losers? As usual, it’s the patients.

Today’s song: All My Tears
by Julie Miller
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241 thoughts on “Coming Clean

  1. >I at first thought Dr. Enlander was wrong not to mention Dr. Mikovits' absence at the seminar, but then I thought that it is all so sticky and complicated and much of it was and is unknown, how could he have brought it up? And people might have wanted to discuss it, and it could have thrown the new Center's establishment and information off-track onto a whole other discussion, which probably nobody was prepared to deal with.

    There is still a lot left to know. Maybe more will be said. And I, for one, am not saying it's wrong to be dissatisfied with what's happened. I just don't want to be hung up on it. The idea of combining a for-profit and a nonprofit side bothered me. Knowing tests were expensive, and many people haven't gotten results or refunds; this wasn't handled well.

    I think that academia and labs set up as Dr. Enlander's or set up with other family foundation money may be the way to go now.

    There are lessons from the WPI situation for future research institutions.

  2. >Jamie,

    Yes, it makes me shudder. $300/hour was the fee you cited to get "good" doctors. But from what you say you were modelling it after the ER business, where doctors get a percentage of the profits. So for instance, in such an ER business, wouldn't the doctor be tempted to prescribe a catscan as often as feasible? Think of the profits. Are CFS doctors immune to the idea of generating more profits–how can you run medicine as a business?

    And then there would be a million profit *after* that, you are stating.

    That's a heckuva lot of money, for a very disabled and indigent patient population. I don't like it. The profit/business model runs across all of American medicine, and doctors are accustomed to thinking they actually deserve that $300/hour, which is considered a middle of the road salary by many. I don't think so. Is there some reason for instance that a teacher doesn't deserve as much money, teachers especially in the formative years can absolutely change students' lives in profound ways.

    You yourself complained that the ARVs could be cheaper but the pharmas are motivated by profit. But you laid out a plan here for a very profitable business, that apparently would have enticed doctors to join in the practice.

    And I pointed out back then, there was also no plan for transparency on how the clean million was going to be deployed for research, or which recommended tests were transparently really needed for which studies. There was no indication there would be that kind of transparency, as in: We are going to do a study measuring X because it is relevant to Y, and it requires this blood test, would you like to participate?

    That sounds like a really good business model–and apparently it worked in the ER.

    That is not what this patient community needs (if there is 'one' which I do not see evidence of, nor ever did–I am in agreement with the scientists who suggest that more than one pathogen can derail immunity in similar ways; as well as toxins).

    I think folks are lucky this did not happen.

    Jill Neimark

  3. >To In Vitro @3:38 AM:

    That was a pathetic little attempt to derail future research into neuroimmune diseases.

    (you must be beaming with glee in your dark little basement… oh what a sad, sad little creature)

  4. >Pre publication raw Lombardi data had nothing to do with a PowerPoint presentation. There is again no source for the gels on web, the Billy and RRM indicidually posting them at a time when Max claims he had the notebooks and when three days later Annette on Facebook said Mikovits took the notebooks from her office. It will be easy to investigated who RRM and Billy are and who they have been in contact with.

  5. >Mikovits gave away her rights to patents so that the world could have the discovery and treatments for free.

  6. >To the red herring gel conspiracist.

    Raw gels are scanned — how do you think they got it looking so pretty for the Lombardi et. al. paper. The scanned raw gel was used by Mikovits on different occasions all gussied up for her presentations. So you are wrong.

    Can you not get it's a copy of the original gel slide taken from a powerpoint slide. Are you going to accuse Jaime of stealing a copy of the original gel too — because the slide she posted on her blog, is a copy of the original gel slide with the raw data labels relabelled to make it look all pretty.

    What is this obsession you have with Billy and RRM. All three images were in the public domain. Do you have any proof the original gel was stolen? How was it stolen and prior to Sept 30th no less? Do me a favor, if you have a powerpoint, scan a picture into it. Put labels on the picture. Now send a friend a copy of the powerpoint slide and ask them to deformat it back to the original. Now when they tell you that they can see the original picture in all its glory, are you going to accuse them of coming into your house and stealing your original picture. Of course not.

    I am still waiting for an explanation of what all of this has to do with the Mikovits and Pfost debacle. At least if the gel with the raw data gets destroyed, the WPI does have a copy of it that they can find on the internet.

  7. >What is the purpose of the Lipkin study? It won't put the assays used by the two main researchers, Frank Ruscetti or Judy Mikovits, to the test and the reason for Collins/Fauci setting it up is now irrelevant. VP62/XMRV is not the viruses discovered in people with ME and it is impossible to claim an assay that is not clinically validated would ever detect a positive. Scientists are better left to develop new tissue assays, optimised to a clinical positive as would be legally required for HIV, as they did in Lombardi et al. lets have some answers and science instead of politics.

  8. >@YoYoMama

    The gel is from the raw data, not what Jamie posted on her blog with permission. You do realise that once a PowerPoint was out of Mikovits hands it was easily altered. As the material went missing prior to the 30th and Billy RRM posted that raw pre publication gel that had nothing to do with the PowerPoint presentation who gave it to them? Billy refused to come clean. The authorities will want to know exactly who has been in contact with them. Why does that worry you, Billy and RRM? It will be very easy to investigate and should be very revealing.

  9. >Wouldn't it be shocking if Billy and RRM turn out to be well known anti-retrovirus/ME researchers?

  10. >@Anon 8:16 AM
    "Why does that worry you, Billy and RRM? It will be very easy to investigate and should be very revealing."

    Strawman arguments to distract from the real perps in this fiasco. As for you, then shut up about it and do it. By the way, you and all your collegues are currentlty undergoing investigation yourself. It has begun….the sandbox kids. Expect more damaging info coming out from the Tribune.

  11. >Lol food writer declares some cheeses are bad for your health.

    Meanwhile who is Billy and who is RRM and how did they get hold of raw Lombardi data. Easy enough to investigate. This is a line of investigation not an argument, so cannot be blamed on strawmaning. I'm sensing panic?

  12. >@ Lisa Simpson

    Your 'old friend and well-respected senior epidemiologist' ALWAYS believed that ME is viral. Good to know? Only if they do something about their conviction.

  13. >ahahahahahahah. this all thing of people unable to understand how powerpoint works is AMAZING.. ahahaha
    I guess it takes an IQ of about 20 to able to understand such piece of information and use powerpoint, so no surprises!!!
    ahahaha and the idea of someone being prosecuted for being able to use powerpoint…. AAHHAHAHAHAHAH

    this is SOOOO entertaining… OMG!!!!!

  14. >@ Jill Neimark,

    The going rate for a new patient visit with an ME/CFS doctor is $500-$10,000 at the moment, for 2 to several hours. I know a couple of women doctors who charge less, because women often undervalue their services. The doctors keep it all, unless it's a franchise and then the guy at the top gets rich.

    It is a travesty that the patients need to pay for their own care, but that's the way it is. Maybe Dr. Enlander will be able to offer something better. I am the lucky one that it didn't happen. I can't imagine how terrible it would be to be working there after what has happened. Instead there are a couple of doctors working there for themselves, keeping all the money, if things are still set up the way they were when I left.

    Jamie

  15. >Lol you can alter a PowerPoint! Big hint. The raw Lombardi data was however nothing to do with the PowerPoint. Can anyone else see the over blown emotions of having RRM and Billy investigated? I am certain many cannot fail to see it.

    Another give away is what Billy did next. Can anyone guess?

  16. >ahahahahahahahaha.. I mean, this really redefines "denial".

    Powerpoint got altered ahahahahahahah!!!! everybody who downloaded the presentation can see the same gel, so a magic Billy or RRM or spaghetti monster or Sarah Palin entered in Judy's pc, altered the presentation so everybody who got it from her had the altered version… ahahahahahahahahah

    love it, I do, I really love this plot. will be an AMAZING tv movie.

  17. >Jamie,

    There are many doctors who use the same treatments the famous few CFS docs use for much less, way way less, than the figure you cited. Some take insurance, some don't, depending on how hamstrung they are by the powers that be in overseeing their practice.

    You can't justify your business model–while constantly saying you are there only for the patients. It was obviously meant to be a highly profitable model, and mentioning a few doctors who charge even more, doesn't justify it. I'm sure you can see how morally bankrupt that position is.

    Jill Neimark

  18. >Again no source and no explanation for raw Lombardi data on the web. But a pledging, some could say desperate attempt to stop the an investigation of Billy and RRM. If they had nothing to hide what is the fear?

  19. >To those saying you can't judge a book by it's cover:

    "There is another theory that recalls the old parental warning not to pull faces, because they might freeze that way. According to this theory, our personality moulds the way our faces look. It is supported by a study two decades ago which found that angry old people tend to look cross even when asked to strike a neutral expression. A lifetime of scowling, grumpiness and grimaces seemed to have left its mark.

    This takes us back to Darwin himself. He referred to how "different persons bringing into frequent use different facial muscles, according to their dispositions; the development of these muscles being perhaps thus increased, and the lines or furrows on the face, due to their habitual contraction, being thus rendered more conspicuous." Once again, Darwin was ahead of his time: in an intriguing way, we get the face we deserve.
    "
    – I still think you can read a lot of a persons personality by taking a look at their face.
    Isn't that why a lot of blind ppl are so well at reading a persons caracter by using their hands?
    Just stand in front of a mirror.
    Watch how you look if you put up a happy face, angry, sad, worried etc…
    When those expressions are made over and over – of course they leave marks…

    With that said, this was just one of several indicators.

    To the one saying Robin Hood was a criminal.
    Yes, did I ever say he wasn't?
    What he did was legally wrong – same as it seems what Judy has done now.
    In both cases it seems to me their intentions were good.
    They comitted crime not for their own benefit, but for the benefit of helping poor (economically or health) people.
    I stand by what I said earlier;
    They did what was morally right…

    Elisabeth

  20. >"
    The New Scientist face experiment

    Our experiment examined whether some subtle aspects of our psychological make-up might be related to facial appearance, while offering readers the chance to appear on the cover of this issue in a composite image.

    We asked readers to submit a photograph of themselves looking directly at the camera, and to complete a simple online personality questionnaire. In this they rated how lucky, humorous, religious and trustworthy they considered themselves to be. More than 1000 people were kind enough to submit their photographs and ratings.

    From these personality self-assessments we identified groups of men and women scoring at the extremes of each of the four dimensions. We then took these people's photographs and blended them electronically to make several composite images.

    The face-blending technique we used was pioneered more than a century ago by the Victorian polymath Francis Galton, a cousin of Darwin. The principle behind it is simple. Imagine having photographs of two people who look very different. To create a composite we manipulate digitised versions of the images to align key facial landmarks such as the corners of the mouth and eyes. This allows us to calculate an average of the two faces. For example, if both faces have bushy eyebrows and deep-set eyes, the resulting composite would also have these features. If one face has a small nose and the other has a large nose, the final image would have a medium-sized nose.

    The composites all looked very different from one another, but would people be able to identify the personalities of the people behind the images? To find out, we paired up composites from the extreme ends of each dimension and posted them online at http://www.facesexperiment.co.uk. So, for example, the composite face from the women who had rated themselves as extremely lucky was paired with the composite from those who had rated themselves as very unlucky. More than 6500 visitors to the site attempted to identify the lucky, humorous, religious and trustworthy faces.

    From this it seems that women's faces give away far more than men. An impressive 70 per cent of people were able to correctly identify the lucky face, and 73 per cent correctly identified the religious one. In line with past research, the female composite associated with trustworthiness was also accurately identified, with a statistically significant 54 per cent success rate. Only one of the female composites was not correctly identified – the one from the women who assessed themselves as humorous.

    The results for the male composites were very different. Here, our respondents failed to identify any of the composites correctly. The images identified with being humorous, trustworthy and religious all came in around chance, whilst the lucky composite was only correctly identified 22 per cent of the time. This suggests that our perception of lucky-looking male faces is at odds with reality.

    Why should these big sex differences have emerged? Perhaps female faces are simply more informative than male ones. It could also be that the men who sent us their portraits were less insightful when rating their personalities or less honest. Or perhaps the women were more thoughtful when selecting the photographs they submitted.

    The results of our pilot study were fascinating and should hopefully pave the way for additional work. They show that people readily associate facial appearance with certain personality traits, and suggest that there may be a kernel of truth in their judgements.

    Our findings explored some dimensions not usually examined in this kind of research, and raise the intriguing possibility that, among women at least, subtle aspects of an individual's personality may indeed be written all over her face.

    Roger Highfield is the editor of New Scientist
    Richard Wiseman is a psychologist at the University of Hertfordshire, UK
    Rob Jenkins is a psychologist at the University of Glasgow, UK"

    Elisabeth

  21. >Regarding the speculation that the unformatted, 'original' gel from the Science/XMRV paper was obtained by nefarious actions and not simply as a result of a copy of the ppt file being circulated in an email group, as was reported in the Chicago Tribune almost two whole months ago, with this being pointed out to Gerwyn approximately 9000 times by now. The ppt file has been uploaded and can be accessed here-

    Link to the Ottowa powerpoint presentation- (click 'open' instead of 'save' as I've had a hard time saving it to my computer but opening it generally works and then it can be saved from there)-
    http://www.filedropper.com/mikovitsjamiacfs20110923-copy_1

    Instructions on how to access the unformatted, 'original' gel-

    Go to Slide 13 > Double-click the image in PowerPoint > Click the 'picture' tab > Hit reset. From there the slide can be resized and saved.

  22. >@Anonymous November 25, 2011 7:12 AM

    Yes, three strains. Two full sequences (WPI-1106 and WPI-1178) and one partial ~3k bp sequence (WPI-1104).

    Just check Genbank. But hey, just keep maintaining it, because it would be a disaster to actually admit that you've made an error.

    @Anonymous November 25, 2011 6:59 AM/8:16 AM (or any time regarding the infamous raw data gel)

    I have given the source for that gel. I copied it from an earlier comment on ERV's blog.

    Since then, I was sent the PPT file. The source is the same as in the post from Anonymous November 25, 2011 10:23 AM. I have found another discrepancy after 2 minutes of investigation. But please keep shooting the messenger instead of the person doing the actual manipulation.

    http://i43.tinypic.com/xgk4qt.png

    Check out my PPT skilz!!!

    This is the original gel from slide 3 of that same presentation. Note that the third lane has again MAGICALLY changed and is not "patient-1178" anymore, while the other patient numbers remain the same. I am sure Mikovis can explain this one through a complex de-identification scheme, changing only some patients' id's….

    Incidentally, Silverman had just reported contamination in "patient-1178" before this presentation. Seems like Mikovits changed the data to make it appear that "patient-1178" was really, really confirmed positive through another experiment.

    But hey, this was a talk to mostly lay people, and then I'm sure this is quite normal behaviour.

  23. >i wish lipkin would say something to reassure patients at this time. they are excited about putting xmrv/hgrv's to rest….but do they really care about finding out what's wrong with us?

    what if he concludes that it is auto-immune like he did with the pig slaughterhouse neurological illness??!

  24. >RRM's prediction:

    Gerwyn shall no hypothesize that Billy (or ERV or I) have altered the file by inserting a photoshopped image in Mikovits's PPT.

    He can tell by some of the pixels and from seeing quite a few shops in his time.

  25. >That's not Gerwyn going on about the gel. That's V99. You can tell from all the "lol"s. Apparently there is no way to explain pp that he can understand. It's sad.

  26. >I just find it HILARIOUS!
    and the thing about being scared of an investigation because you can actually open a ppt and turn down the formatting?? THAT is just GREAT. I mean, really great.
    Why no reporter ever tracked down V99 and Gerwyn to interview them?? I think we deserve to see the stars behind all this mess and discredit for the CSF/ME community :)

  27. >Can i just remind people that it was Gerwyn and V99 that swore blue in face that those two blots were different, when every single other human being on the planet could *see* they were the same (and Mikovits & Ruscetti confirmed so).

    They are so riddled with emotional bias, that they are unable to think straight. If they are wrong about very simple things (that are a problem for their argument), then everyone should be very wary of the more complex arguments they try to present.

  28. >jamie:
    dr enlander charges 125/visit and spends lots of time with you; he also accepts medicare and most major insurances. he's hard at work looking for a less expensive alternative to cheneys 5K maf 314. he's in this for the patients not the money.

    dr montoya accepts most major insurances including medicare. also in this for the pts not the money.

    peterson accepts most major insurances and medicare

    klimas when practicing at UofMiami accepts most major insurances and medicare. her pvt practices fits into the overcharge the desperate patient model. she has both bases covered.

    cheney's model is a crime and i would not hold it up as a standard.

    gordon medical assoc in CA (1K/appt) is VERY expensive and accepts no insurance, once again would not hold up as a model to emulate.

    lerner and bateman i believe accept insurance and medicare.

    to hold up as models of emulation, me/cfs dr's who do not accept insurance and charge exorbitant fees is an insult and once again taking advantage of pts financial, emotional and disadvantaged location status/predicament. Live near a doc who accept insurance and doesn't have a 2 year waiting list your luck; otherwise for most ppl are SOL!!!! (shit out of luck)

    elisabeth: You obviously believe the end justifies the means…i do not.

    the study abt faces is interesting. i think before all this shit went down, i believed annette and harvey had kind trusting faces too. I met both of them and found harvey especially warm and charming. i believe john coffin, steven goff and dusty miller (santa claus looks) look trusting and likeable too and probably most agreed until they changed their positions on the science paper….stoye looks like a jerk, acts like a jerk but in the end may turn out to be right right in his harsh criticisms of wpi and judy…still he does not look or act like a nice human being. erv looks like a nice young lady and she is one of the cruelest ill-mannered ppl i have ever read or listened to…..so the theory you propose does not hold up well under the current situation…..IMHO….wonder what alan dove looks like….cuz he sounds like an asshole and says very insulting things abt our community…what if it turns out he has the face of an angel??!?!? Vincent R? hmmm weird looking guy, hard to figure out his position, but he appears to care abt me/cfs patients now that he has learned abt our plight and met a lot of pts…..does his face say he is trustworthy or a snake…jury is still out.

    The more i write and think abt this theory the more and more outlandish it becomes to me….what if i believe all black or brown ppl look untrustworthy and scary; what if i am raised to believe woman look physically and mentally weak and not as intellectually equipped for math or science as as men. Basing your belief on someone's actions/potential because of the way they look seems downright silly and in the examples i just wrote can lead to outright racism and sexism.

    judy probably is a nice person, like robin hood, but she MAY have been involved in criminal nefarious acts many at our expense ( and a young graduate student's)…..maybe you have a greater propensity for forgiveness than I ( respect u for that) but at this point of my life where i am desperate for help to live again…i do not have that propensity and to read all this excuses making: judy = robin hood; she has a trusting face, etc all seems ridiculous to me right now. i'm sick of this story. i hope someone (lipkin, enlander's team: singh/schadt), broderick, Klimas, peterson, levy) can salvage something useful from the work done over the past 5 years that will speed up a treatment for us….but i will not excuse the way we were mistreated, lied to and taken advantage of.

    "the ends DO NOT justify the means"
    "even a liar can look sweet and nice"

  29. >elizabeth: SORRY. i thought you posted the face experiment post. it was from an anonymous….please accept my apology……: )

    my thought remains the same abt the face experiment theory…..wish this money had been spent on bio-physical research of me/cfs……..how bad do i have to look before you believe i am really sick and suffering!?!?!??! (rhetorical question)

  30. >@ Jill Neimark.

    If the clinic had been run by me, it would all have been open and above board, including the numbers. Patients vote with their feet. If they preferred to go elsewhere, then they would have. It didn't happen, so it makes absolutely no difference now, unless you enjoy picking on me. If it pleases you, go right ahead. Question my motives. Your judgement is immaterial to me, since we both know that it is personal, and has nothing to do with the clinic or anything we are discussing here. You are pissed off at me and have been for some time, for reasons known only to you, really. Most peculiar.

    I know in my heart what my intentions were. I tried to do something wonderful and failed. For that, I am sorry.

    Jamie

  31. >"I tried to do something *wonderful* and failed." [My emphasis]

    Could we jsut try for "sensible"? It's not sexy, it's not necessarily exciting but it's how good science gets done. (It's also how good businesses, and good scientists operate. They might be visionary, but they go about it in careful,methodical and sensible ways.)

    Can we also remember that there is a reason why researchers, doctors, and clinicins are supposed to keep a professional distance from patients. It's to prevent emotive, hyperbolic, over-reaching promises from messing with people's heads, hearts and wallets. It also allows the clinicians enough space to be clear-thinking and SENSIBLE.

    We really need to examine our expectations of scientists/researchers in light of this fiasco. Sympathetic, charasmatic, inspirational do not equal competent. They really don't!

  32. >Western blots can look identical when scientists controls their variables. Regardless of that important point, Coffin and Science wanted the label change and saw all the raw Lombardi data before publication.

    RRM and Billy have no explanation for how they obtained that gel and posted it on the 4th October. It will be easy to investigate the matter and trace those who have been corresponding with them.

  33. >"I think it's time the Whittemores started watching what they write.

    Patricia Carter"

    OMG! There's the POT calling the kettle black if I ever heard it.

    Patty dear, have you seriously lost your mind?

  34. >@stella

    Who hasn't been in contact with patients. The entire team of Miller, Vaughan and Mendoza are on forums, Facebook pages, etc. trying to convince patients of their beliefs. I pity the entire human race that they have not gone away and used clinically validated assays to screen people instead of focusing on what ERV a cell line contains or what unnatural VP62 can do. Their excuses are wearing thin!

  35. >Addendum to my comment at 2 PM:

    The plan included lots of free care for patients that could otherwise not access it. But none of it matters now.

    Jamie

  36. >So we're still avoiding addressing the morality of Judy asking max to steal that stuff? Or do you think this was a lie? (mostly addressing Dr. D-J here).

  37. >"Anonymous said…
    Western blots can look identical when scientists controls their variables. Regardless of that important point, Coffin and Science wanted the label change and saw all the raw Lombardi data before publication.

    RRM and Billy have no explanation for how they obtained that gel and posted it on the 4th October. It will be easy to investigate the matter and trace those who have been corresponding with them.
    November 25, 2011 2:48 PM"

    OMG! Really: OMG! I want to weep now! Stop it!!!!! omg

  38. >Jamie,

    It is not personal.

    If you don't want to listen to me, listen to others who chimed in with similar points. Don't take the easy way out.

    Jill

  39. >Anon 3:12 PM,

    I think none of us know what happened, but Max is an adult. If he did this, I'm sure he had his reasons. He is much too intelligent to have followed Judy blindly. The idea that she "masterminded" something, Judy as Svengali, sounds silly to me.

    Jamie

  40. >Gerwyn etc wrote:

    "Western blots can look identical when scientists controls their variables."

    You know that NOBODY with blot experience agrees with you on that. Not a single actual scientist. Not a one.

    "Coffin and Science wanted the label change and saw all the raw Lombardi data before publication."

    This has been asked before but you ignored it. I want a source for those claims. Re. the label change, and that they saw *all* the data before publication. Seriously, you need to provide a (reliable) source for that.

    "RRM and Billy have no explanation for how they obtained that gel and posted it on the 4th October."

    Actually, RRM has explained lots of times. You don't understand how Powerpoint works so you don't seem to understand the explanation.

  41. >Jamie,

    Judy as Svengali may be silly but there is no question that a responsible person in authority would have done all she could to prevent a junior from risking his career in a move like this. If his story is true even in the broad strokes, even if he was more than willing to take part, even if it was all his idea and he convinced her… she still showed tragically bad judgement. If it's true.

  42. >Stella,

    Good luck with all of that explaining stuff. I think it's a lost cause. Many have tried, many have failed.

  43. >@Jamie 3:12

    Sure, he's an adult, but I think you're washing over the fact that most grad students pretty much look at their PIs as God (sometimes a vengeful god). When God asks you to do something you believe to be wrong, you do it anyway (I'm thinking Abraham and Isaac here).

    No matter how you slice it: Judy asking Max to steal notebooks = super not ok.

  44. >3:29 and 3:41,

    None of us has the slightest idea what happened other than that Max signed an affidavit notarized by Annette's secretary, so in the WPI office. I am not going to speculate until I know something real. Certainly not because some anonymous poster on my blog, who might even have a dog in the fight, is casting aspersions.

    I have mail from scientists who have been harsh critics of Judy in the past, but think her treatment has been outrageous. You people are like a lynch mob. Whatever happened, she in no way deserves what has happened to her. I would think that it would make other scientists very uneasy, that they could wind up in jail, if they have a conflict with their employers, which prevented them from meeting their responsibilities?

    Whatever happened, chances are everybody did something wrong. It is a train wreck. Totalled. We need to move on.

    Jamie

  45. >We don't know what happened! This is like a novel, where something happened, and the author writes a story about it.

    I think we should wait and see what happens and who says what before we make assumptions.

    Who's Billy?

    I still don't know who the anonymous bloggers are, so can they name themselves A, B, or # or 1, 2, 3 or by state or something.

  46. >Regarding this quote written above:

    "Can we also remember that there is a reason why researchers, doctors, and clinicins are supposed to keep a professional distance from patients."

    To be honest most of my doctors do not keep a institutions are actually changing direction on how they interact with patients.

    Recently they have been using methods such as this: Motivational interviewing is a participant-centered, directive method that enhances motivation to change by exploring and resolving an individual’s needs and concerns. So this is a nutshell is they are listening to their patients health concerns and working directly with them to achieve a better quality of health outcomes.

    My doctors value my opinion on what has helped me with this illness, as I am a longterm sufferer. There are many developing this illness in the area I'm in, and treatment is very challenging for the doctors.I feel very blessed that my doctors care enough to want to try and help however they can. They know we are suffering. I wish it were like this for everyone.

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