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. >Correction to post 4:16

    The sentence should have read "To be honest my doctors do not keep a distance from me and health care institutions are actually changing direction on how they interact with patients"

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

    Super not ok – that phrase is familiar.

    The fact is we don't know if Max lied, the fact is we don't know what Max would have said in a real affidavit, the fact is we don't know who legally owns the notebooks, the fact is we don't know why Annette Whittemore said Mikovits took the notebooks when at the time Max now claims he had them…

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

    I personally know several. Try researching the subject.

    "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."

    Science editors, John Coffin, Bob Silverman, Frank Ruscetti, Judy Mikovits…. They wanted the label simplified. Think about it. You put one in a paper but the experiments were blinded.

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

    Billy refused to name a source, RRM has also not provided a source. The raw Limbardi data is nothing to do with the PowerPoint presentation. Documents such as that are easily edited by the way. The investigation will uncover the real source, why would that worry anyone?

  5. >Kathy D.: I didn't see you tut-tutting about how "we don't know what happened yet" before it started to look bad for Judy. You were as happy as anyone to jump on the bandwagon, scolding the WPI and being horrified at the "persecution" of Judy. Your tone is so brown-nosing, I don't think you realize it. This isn't a classroom and Jamie's not the teacher. Just saying.

    If people are taking too much satisfaction in Judy's downfall, I think it's because we've been trying to say for many months that it was a mistake to hero-worship her, because it was putting too many of our eggs in one basket that was looking less and less solid. Finally, we can say "I told you so," as unattractive as that is, and as disturbing as the events are. I think I just really want Judy's acolytes to wake up and smell the coffee! Our future as ME/CFS patients does not at all rely on Judy–if it did we'd be in deep doo-doo.

    So take heart. There are other fish in the sea. Let's all move on soon, what say?

  6. >@anon 4:35 you are right Annette did say that and also 3 other versions I think it's up to now. I guess we will all just wait and see how it all unfolds.

  7. >No one needs to hero worship Ruscetti and Mikovits. They applied the scientific method and behaved like scientists unlike those who use assays not clinically validated and make wild claims about how their assays would just work. We only need stick with the basic tenants of that method and answers will be gained. A replication study is now needed, but the Lipkin study is not a replication study.

  8. >"@anon 4:35 you are right Annette did say that and also 3 other versions I think it's up to now. I guess we will all just wait and see how it all unfolds.

    When, where, to whom and what was said the other two times you name?

  9. >"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?"

    Gosh, is that all that happened? Just a little "conflict"? All this over just a "conflict", like a mild difference of opinion or something?

    Same old people making the same old silly excuses. You can keep making these excuses over and over again, just like all the silly gripes about invalid negative studies, but it doesn't change the outcome. It is what it is.

  10. >The "clinically unvalidated assay" person will be chanting this to the end of his/her days. Sort of like "Om Om Om." It's beginning to have a soporific effect…..

  11. >"the fact is we don't know what Max would have said in a real affidavit, the fact is we don't know who legally owns the notebooks,"

    That is a real affidavit. As far as legal ownership of the notebooks, you seem to be about the only one posting who doesn't understand how that works.

  12. >Jamie said: "this is a trainwreck i think we should move on….max is an adult judy is not a svengali." these are naive remarks……IMHO

    how can we move on so quickly when the story still is elusive and mysterious. after waiting patiently for judy and wpi to bring us treatment….do you think we can just drop this dream and hope with no clear explanation as to what reallly happen.

    if judy did in fact use max to take the notebooks,it at it's simplest was an abuse of her power and his goodwill and admiration of her. judy is not svengali but she is magnetic and persuasive; people like/love her, want to believe her and please her….we see this in ppl who never even met her, so imagine if you were her grad student working with her day in and out and trying to please. don't try to say this would not have had an affect on Max who is young, impressionable and striving to please his boss.

    ppl probably will not move on until the truth of the situation is revealed and or one of the other research groups come up with a new treatment/discovery to give us some hope to hang on to. that is what judy and wpi gave us and it has been snatched from us….many of us are in bitter mourning right now……thanks to you (seriously) we have a place to express our anger, fears and disappointments….maybe this final chapter will be a part of your redemption, jamie….giving ppl a a place to mourn the loss of their hope and belief in judy and wpi.

    ps i think most of us choose anony cuz it's the easiest one to deal with when posting.

    mourning my loss of health and now hope….anonymously cuz that's how I like it

  13. >Well said, Anon 5:35 PM,

    We do need to grieve. But this is going to drag on, unfortunately. As soon as we can, as soon as this dies down a bit, I want to get back to good news, because there is some. Dr. Enlander's center is very exciting. Except for all of this, my life is going very well. Ali is doing extremely well. I want to share my impressions in practice with you going forward.

    Warmly, but kind of worn out:),

  14. >Another explanation is that Mikovits may have broken no laws in regulations in having Max take anything in order to copy the material. The ownership issues won't rest with the WPI alone. If anything this highlights one of the worst failings of the system. Mikovits should not be separated from her research materials or gagged at a time when a breakthrough has been made. The negative studies are discredited. VP62 is not the viruses they discovered.

  15. >"That is a real affidavit. As far as legal ownership of the notebooks, you seem to be about the only one posting who doesn't understand how that works.

    It is an affidavidit, not one that will last in court. Ownership of the notebooks is not going to be simple as there will be multiple parties involved. Do you recollect that there were three labs in Lombardi et al. and more unnamed. There will also be collaborators on the other studies. Then there is the issue of how this impacts on research generally. The courts are against ownership of cells so that research can progress. This case may change things for the better.

  16. >Those studies are pretty much worthless. All they proved is that contamination is a lab can result in a wild goose chase and a waste of a lot of time and money.

  17. >I wonder if there is anybody capable of succinctly presenting both sides of the verifiable issues in these comments that seem to have two sides.

    This is not a call for repetition of the arguments we have seen. It is, to the contrary, an attempt at reducing repetition.

    It is a test of whether any participant is capable of it.


    No points if your description of the other side would not be agreed to by the other side. You get taken out of competition.

    No points if you use dirty rhetorical tricks or fallacies, merely claim the other side is not capable of this feat, use this challenge as a launching point, derail or demoralize discussion on this blog in any way (that means you need to be extremely restrained and also respect the purpose of the blog), do not use a consistent name for yourself that we can or do know you by, use sock puppets or lieutenants, get pedantic about the terms of the challenge or go against its spirit in any way, attack anybody, don't take any topic seriously, or repeat anything.


    You gain points by taking the high road. You gain points by being succinct.

    Links to relevant blog entries or websites or papers in order to back up your points succinctly are encouraged.

    You only get one shot per topic. If you repeat, you drop out.


    Of all of the issues with two prolific sides, the one I want to see responsibly presented in this way, by anybody willing to take up the challenge, is whether the hypothesis that gammaretroviruses are currently infecting a significant proportion of certain humans — specifically those who are sick with the serious multisystem disease clinically roughly described at minimum by ICC and any biomarkers to narrow it down further — is currently deserving of serious levels of scientific research.

    You can choose another topic if you want. Just remember that you drop out of the competition entirely (that means all topics) if you lose any points on any topic.


    This challenge is an invitation, not a demand. You are free to disregard it, but if you lose points, you can't change your mind later.

  18. >"Those studies are pretty much worthless. All they proved is that contamination is a lab can result in a wild goose chase and a waste of a lot of time and money.

    There is NO evidence of contamination in either paper. There is no source you can quote that shows contamination occurred and no explanation for a human gamma retrovirus being present other than people are infected. The immune response cannot be to a contaminant and can only be to a MLV related virus, the EM is of a budding maturing virus that must have been integrated and looks like a gamma retrovirus and is the sure of an MLV. Neither of those can be contamination. The PCR has been reproduced by a separate study where the gaga sequences are all polytropic. None of the negative stuidies have used clinically validated assays, none of the studies have replicated. The evidence supports that those viruses are present and causing an immune response, no evidence exists the suggests differently. A replication study that finds nothing would, but none have tried. A study using clinically validated assays with patients selected according to CCC would, but none have tried. No further answers are coming whilst this unscientific baloney continues.

  19. >The BWG results show that neither Mikovits nor Ruscetti were able to correctly identify positive and negative controls with any consistency. End of story. None of the lame silly excuses offered to try to explain this makes any scientific sense. Here's a very simply explanation – their assays are flawed.

  20. >Yes. Very good point that other scientists may worry about what happens if they disagree or otherwise conflict with their employers. This sets an awful precedent, and a pretty undemocratic one at that.

    Scientists do have rights; civil liberties issues arise here and now and arise for the future, too.

    Intimidation by employers at research institutions could have a chilling effect on research and how results are discussed. What happens if a researcher has a different outlook than the employer, even on the results?

    I wish some of the scientists would say something in a venue where they're heard.

    It's interesting how the media went after Judy Mikovits, and so did some researchers, but now that she is being so mistreated and her rights trampled, no news sources are writing about this to question this treatment or jailing her.

  21. >You get the impression from reading these posts, that ME/CFS patients are the only people that would eat their young. We all know that it is a few posters who may or may not be ME/CFS patients and do not represent the patient community as a whole.

    @Anon 2:48pm if you want to know where they got the gels ask Mikovits.

    @Jamie Mikovits has only herself to blame for the reaction within the scientific community. I probably know the reason for the strategy but it was flawed. When you associate other diseases that could be caused by xmrv without any scientific validation or research and attend conferences with anti-vaxers; when you claim that xmrv is bigger than the HIV epidemic without any scientific validation or research: is there any wonder then, that a few eyebrows were raised within the scientific community? This was when researchers started backpedaling away from Mikovits.

    About need for the replication studies from the ad nauseum. In the BWG, the chips were heavily stacked in favor of the WPI. The WPI were allowed to repeat or reproduce their exact methodolgy or steps to acheive the same results that were in 2009 Science Paper. They were unable to achieve those same results. People complain that about this or that about the study but the bottom line is the fact that Mikovits signed off on those results. If she felt that they were unfair then she had the opportunity not to sign off at that stage of the research.

    For the ME/CFS patient community as a whole. You need for your own health and sanity to forget about the Mikovits and WPI controversy. Reading these blogs and all the acerbic and toxic statements and comments will only highten your stress levels and impede your own recovery.

    To help your recovery, focus your thoughts and your mind instead on things that mnake you happy, do things that are fun, avoid stress and stressful events as much as possible. This will help you immune system immensely. Remember there are still a lot of good guys out there that are conducting research on your behalf.

    Too many people like to watch train wrecks. These rubberneckers tend to populate these forums. Live long and prosper.

  22. >Thanks for the reminder, Mr/Ms Live-long-and-prosper at 8:11 p.m. Yours is the most pleasant post I've read for a while. I think I'll take a break and savor a little serenity.

  23. >The best thing Mikovits and Annette could have done back in 2009 (using their names because they did most of the PR back then) was to say "we seemed to have found an association between XMRV and ME/CFS, of course these findings will have to be replicated before any conclusions can actually be made" Hindsight is 20/20. And when no association was found, they could have said "ok, we have learned from this, time to move on". Sensible responses.

    Of course, they never really said in the beginning there was any causation. Users on various forums and blogs announced the XMRV caused ME/CFS. They attacked those that were skeptics with rudeness (a small but very vocal population). They made up new rules about virology related matters and they sucked people into their meme. These people started leaving scientifically erroneous responses on scientific blogs and a whole bunch of people got sucked into this and are still arguing to this day. Not only is Mikovits, Whittemore to blame for the mess today, the blame also lies within a small but vocal group of ME/CFS patients. Hopefully, as the science moves forward, this small group of people will have learned to keep their mouths shut, instead of creating such a contentious environment on the internet. This group has done a lot of damage. It's pretty bad when you email a scientist with a question and they tell you they don't want to answer because they don't want to their comments misinterpreted and their reputations smeared all over the mecfsforums. Please stop. You people know who you are.

    Thank you so much.

  24. >The human race cannot afford to ignore any of this. Evidence was presented at multiple conferences by various scientists. IncludIng the results of negative studies that failed to use clinically validated assays. That a small cabal have hijacked the field and managed to fool others on what constitutes science is shameful to the entire scientific community. Mikovits and Ruscetti didn't do that. The others did.

    You don't complain about how the skipper of a ship announces the boat is sinking, you save lives. The human race is determined to kill itself off.

  25. >Mikovits never said XMRV/VP62 was the cause, she said associated. When the second positive paper came out others claimed they were different findings. How stupid! With the retraction of Silvermans incorrect data, they are the same finding and not VP62/XMRV. There is no other published study on HGRVs then Lombardi and Lo, thus there are 0 negative studies. Ruscetti has been clear. If this was HIV it would be 1983 and we better do something. Instead we will very likely see rates of diseases continue to increase and the cost of health care escalate. Making money only for the pharmaceutical industry that could be ruined by such a finding.

  26. >Do you have a tattoo that reads "clinically validated"?? I hope you do, you really love this expression!!


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

    I personally know several. Try researching the subject.""

    Gerwyn, V99, Science is waiting for you. You so smart and talented and alraedy know so many scientists. You ready to go.

  28. >Gerwyn, V99 and their ilk have made so many erroneous statements. Loved the thread on the mecfsforums where V99 claimed over and over that the slides in Ottawa and the 2009 paper were different — even after the scientists involved stated they were the same. Then when the original gel was posted, V99 stated a pixel was out of place and it was therefore doctored. Then she went on that Billy had stolen the raw data (so admitting that it was not a doctored slide) just because Billy was the first one to have posted the tinyurl link. It's ridiculous. The sad thing is, a whole bunch of people on the forum went on and on about this, ad nauseum, just because, I guess, if V99 and Gerwyn said it, it must be true.

    Can I point out here. V99 has no education in virology and basically regurgitates anything Gerwyn has to say. Gerwyn, back in the early days, posted on the website of a prominent journal that he had a PhD in psychology and a diploma in law. Then suddenly he has degrees in chemistry and microbiology. Why on earth didn't he say this on his post in the prominent journal. People are questioning Mikovits, Whittemore, but why not question the bigger voices in this whole debacle. Why not question the people who have damaged this community so badly. Why not question who they are, what credentials they actually have. Why not question yourselves, why do you believe these anonymous users know more than actual world renown virologists. Do you adhere so voraciously to their beliefs and erroneous conclusions because you don't want to believe anything else. It's disgusting. You have been sold a bill of goods by anonymous googlers.

    It's probably better to follow the science — the unbiased science. You can let Judy and Jamie, Gerwyn et al, tug at your emotions but when it comes down to it, the scientists are the ones you should be listening to.

    As a community of people with the same goal, do not be cowed by insults. Don't be afraid to be sceptical of results that are questionable. Don't be taken in by googleologists. Instead, look for all answers. I am over Gerwyn and his band of followers, you have damaged this community so badly. I have seen your new forum by the way. Same old crap. Dissing the WPI, loving Mikovits, insulting those who are sceptics. It's sad. Hopefully those wishing true answers will move on. Shame on those people who continue with this charade.

  29. >Gerwyn/V99

    Provide the source. Go on – if it's there, give it. If you don't, it's all just made up bubbles in the wind.

    I want a source for your claims about Coffin reviewing "all" the data. I want a source for your claim that Science required the blots to be relabelled. I want a source for your claim that there are some scientists that agree with your claim that two blots from two different experiments with the same variables would be "identical".

    And i assume, that you know what "source" means? (e.g. A link to a journal article, an opinion piece with a verifiable author, a published statement).

    Enough pompous bluster.

  30. >@Stella

    They won't post a source because there is no source. I can tell you where the story came from, and because it's a good example of how their "facts" are generated, here goes:

    1. First, there's the idea that Science's peer review process is much more rigorous than the peer review process of other journals. Therefore, unlike other journals, Science "must have" demanded to see all the original, not edited images that were used in the paper.

    2. V99 found a presentation of (Lombardi et al. co-author) D. Peterson that he gave within two weeks of publication. Dr. Coffin was present at Peterson's presentation. I'd give a link but for the spam filter.

    At one point, Peterson showed a slide that mentioned 5-aza (slide 1 of part 4). However, it was not brought up in relation to figure 2C of the Lombardi paper. In fact, it was not concerning the Lombardi paper at all, as it was said in relation to doing EXTRA experiments since the Lombardi findings, now finding 31 of the remaining 33 XMRV-negative Lombardi patients positive after all (to get to a whopping total of 99/101 positives).

    3. Clearly, the fact that Coffin attended a presentation by Peterson in late October 2009 that somewhere mentioned 5-aza in a different context, surely "proves" that Coffin knew about 5-aza being used for the figure 2C experiment all along. Because of the overwhelming evidence shown above, the idea now is forever implanted into their brains as being "true"

    BTW: it's not really a fact that Coffin was a peer reviewer on the Lombardi et al. paper., although that seems to be a more reasonable assumption than this "Science knew about the raw data" thing.

    BTW2: It was not just V99 and Gerwyn that thought the gels were not the same. Angela Kennedy also stated that the gels clearly looked "different".

  31. >@Jamie Deckoff-Jones MD – November 25, 2011 3:41 PM

    I appreciate that Dr Mikovits is your friend and also that this is your blog, and I agree that ‘moving on’ is desirable, however we can not ‘move on’ effectively without understanding where ‘we’ are now and where ‘we’ have been – part of that understanding , no matter how uncomfortable it is for their friends, involves a thorough examination of the actions of those involved in the WPI ‘train wreck’. Undoubtedly many researchers will look at Mikovits’ current position with deep concern, but Dr Mikovits is not some ‘mere’ wronged employee, she has played a seminal role in the development of the WPI and just because the regime has turned around and bitten her doesn’t mean she is not answerable for her role in ‘setting the points’ that put the WPI train on its course for disaster. It may well be galling for those who supported the WPI, to have others say ‘we told you so’ but ‘we’ did and the ‘wreck’ is not a surprise to everyone. I’ve no idea what other people think about Dr Mikovits beyond what they write, I can only say I do not want a lynch mob, what I want is for people who are affected by M.E/CFS, whether sufferers or carers, to ‘investigate’ the wreck and understand why things have ended up as they have. Mikovits’ as victim maybe one side of the story, but Mikovits as constructive contributor to the unsteady foundations of the WPI and its now questionable scientific robustness is of equal importance. There a lot of effusive sentimentality being written about Dr Mikovits which only serves to obfuscate the issues that are important, Mikovits’ good intentions or her ‘capacity to care’ are irrelevant, what is at issue is her role as scientist, manager and spokesperson at the WPI and her professional conduct in ending her relationship with the WPI. These are matters of significance to M.E/CFS affected people and they need to be discussed whether on this forum or elsewhere.

  32. >@Stella

    You like other don't like having your mistakes identified. That cannot be helped. The same experiments can look identical when variables are controlled. Try looking into western blots first and talk to some competent scientists. Easy to confirm.

    The sources for all data in Lombardi et al. having been viewed pre publication are given. Do you really imagine that Science/Coffin (fact – he was the reviewer) would have done a minimum review for such a paper. It was a six month review. You would now say there was a failure of the peer review. Lol

    Anyone who has watched Dr Peterson's presentation at that CFSAC knows he refers to the 3 assays in Lombardi et al. being used on all patients that were negative at the end of that study. So they were not new assays.

  33. >Here we go again.

    1. It is not established fact that Coffin was one of the three peer reviewers for the Lombardi et al. paper. All you need to really laugh out loud is to shame me with a proper source.

    2. See, Stella, exactly what I said was the "source". Science must have seen the raw data because their peer review process is so superrr.

    However, when you look historically (waiting for that person that found appeal to history through google but doesn't understand it, to comment on this), you'll see that even the most prestigious journals have had data manipulation like alleged here before.

    The idea that Science routinely asks for raw figures is simply not true. There are other reasons why their peer review can take longer. And looking at the original pictures wouldn't take that much longer anyway.

    But hey, never let the facts ruin the story that you're now emotionally attached to.

    3. Anon, tou are clearly wrong about that "six month peer review".

    The paper was submitted somewhere in May of 2009, and rejected on June 4th by Science with the remark that a re-review would be done if additional data were provided. Mikovits re-submitted the paper on July 14th and Science accepted the paper on August 31st. (Source: False Positive by Jon Cohen).

    In RRM's official "peer review counter" that makes a total of 2,5 months of peer review (I am generously assuming that the first submission was done early in May), not six months.

    But again, don't let actuals fact invade the discussion. Please keep it up with the six months of 24/7 checking everything with a fine-tooth comb.

    I have watched the Peterson presentation and it wssn't obvious to me. Mikovits also used the same 5-aza data in a early 2010 presentation, and there it was also not mentioned, implied or otherwise was made obvious that this 5-aza data was relating to experiments from the actual Science paper.

    We can go over and over about this (and we probably will), but the problem is this:

    –> When Science announce whatever action they take with regard to the 5-aza data, it will become clear that this 5-aza stuff wasn't known to them at the time of publication. Instead of you then admitting your misstake, you will cry foul and see it as evidence of Science making a "political" decision to "bury" because of it.

  34. >@ RRM – thank you for the explanation.

    @ Gerwyn/etc. You saying it, doesn't make it so. It really doesn't. If you wnat to go round the Internet claiming that the peer reviewers reviewed *all* the data, then you need to provide a credible source for that. It is not standard in the publication process (not standard at all), for *all* data to be peer reviewed before publication. You are claiming sometime extraordinary, so you need some evidence rather than you just saying so.

    Exsctly the same point with your claim about the blots. You're the one making the claim – you provide the source to some scientists with blot experience.

    Otherwise it looks like you're just making stuff up, and saying it over and over and over again……

  35. >Check again RRM the review was 6 months. The paper was submitted and extra testing was requested by Coffin. That took place and again the paper passed. It wasn't a case of the paper being turned down but saying well if that is true, because they asked to see all the raw data, you should also be able to show this and this. Which they did. There was no test that Coffin didn't want that the paper didn't pass.

    Both Peterson and Mikovits can be seen just after publication stating how they went back and used the same assays in the paper on the PCR negatives. Taking the total positives to 99/101. AZA use was known to Science and Coffin, but they requested the label change and they removed it from the paper. After all it was not germane to the paper. Science have once again been shown what they saw over two years ago. It would take minutes to investigate and nothing has come of the pathetic witch hunt.

    Science will soon investigate Paprotka et al. for the missing assay in that paper and the failure to demonstrate the other assays can detected less than 2000 copies per 100 cells. 22Rv1 must be contaminated with symtheyic P62, which is not the viruses in people with ME.

  36. >Makes me laugh. First they want to put Coffin on a pedestal and worship him, now they say Coffin/Science did a poor review.

  37. >Ok – no sources: you're making stuff up.

    Thanks for showing that – I wanted to make sure I wasn't pre-judging.

  38. >The sources are Coffin, Science, Ruscetti, Mikovits, Simverman etc. I don't think it's correct to suggest any of them would lie.

  39. >@wisden

    "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."

    I would have to strongly disagree with you on that one. Belief is key to solving this actually. Disbelief is where all the problems have stemmed from.

    And if you're desperately ill and losing hope knowing that belief exists can mean the difference between killing oneself or not.

    So, yeah, it's good to know.

    If we're splitting hairs here, it is governments that need to act, not individual scientists. Nothing can happen without funding.

    It's hard to imagine why any one individual would or should wish to put their professional career on the line on our behalf though. The malice that has been directed at those who have by the people posting on this blog alone should be enough to put anyone else off going there. Not worth the risk to their reputation.

  40. >Just a quick FYI on the Medicare issue. If you intend to offer free or discounted care to any patients, you cannot take Medicare, as you will be prosecuted for Medicare fraud. Medicare does not allow you to charge anybody less than the reimbursement rate you charge to Medicare.

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