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.
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.
>Oh I notice Andy Vaughan you have had the guts to put your name further down . So you are posting as yourself and as anonymous .I wonder just how many of these anonymous posts are actually just you . Interesting .
Jo (again)
>Yikes, I actually posted as anonymous for the same reason as you. I forgot to sign my name earlier, but it was just that, I forgot. I indicated I was copy / pasting from facebook, knowing that anyone could google that post and see it was me.
Trust me, I do not post anonymously to this blog. I post on XGA on facebook, and have within the last few days posted on ERV a couple times, and then here today. I used to post on ME/CFS, but that was a debacle. Dusty and I had our profiles deleted. Anyway, old news.
My overall point: Defending Mikovits' science and position within the WPI is one thing. Defending her asking Max to steal the material is another. It's absolutely amoral from pretty much any standpoint. But of course, if you believe it was a coerced confession, there's nothing I can say to dissuade anyone from that belief.
Uggh, too much negativity for Thanksgiving.
>Oh sorry Andy for the negativity on thanksgiving its just part of everyday life for me . Thats the joy of living with ME/CFS . folk are negative towards you 24/7 365 days a year . Thats why patients are so angry . We are so ill with no treatment yet patronised and ridiculed at evey opportunity by people who should know better .
jo (again)
>There is absolutely no doubt in my mind that if Annette Whittemore's frequently expressed concern for patients was genuine (& important to her), then she would not have made the choices that she did. I have seen nothing in her recent actions which suggests that she was prepared to put her own self-interest to the back of the queue.
Therefore, as has so often happened in the history of this illness, the patients once again fall victim to the crossfire in an ongoing battle where vested interests and personal egos prevail.
>Yes I'm laying in bed in agonizing pain and have barely been able to walk. Thanksgiving, that's just another fun filled day of agonizing pain. Just like every day has been for the last 18 years. Sorry for the negativity.
>Jamie,
Out of all of this mess, there is one thing I can't quite understand – and you allude to it here
'She said to me that the notebooks documented mistakes that others wouldn't want brought to light, something she had only realized recently'
The CFIDS Assn have said that Science are investigating – what I assume to be the original data from the original Science paper. Are there allegations of fraud? Given the number of people involved in the original study – Ruscettis etc and the 6mth peer review process , are we to pressume/believe that data was wrong or manipulated in some way? Surely this is in no-ones interests at all – least of all Judys.
Can you clarify what you mean by the sentence above
Thanks for your blog once again. All I can see is that the disease gets put into the too hard/ don't wanna go there bucket for another 20years. It's as you say, the patients that suffer.
Also, do you know if there is going to be a paper about Andreas treatment? Andrea said we had to wait for publication. That's if it was Andrea on the blog the other day.
cheers Jill
>Hey guys, I think we should all stop being so negative and let Andy Vaughan enjoy his thanksgiving dinner:
http://preview.tinyurl.com/andyvaughan
>Oops wrong url above, correct one here:
http://tinyurl.com/andyvaughan
>I can confirm that Annette Whittemore did not answer telephone calls. I went to a great deal of trouble to obtain promises of large donations to WPI from two wealthy individuals, and they called Annette Whittemore and they left messages saying they wanted to discuss making large donations to WPI. Mrs. Whittemore never call them back.
In addition, I spent a lot of time and energy cultivating a relationship with my local Congressman, seeking help in obtaining NIH grants for WPI. Finally, my Congressman's office called Annette Whittemore saying they wanted to discuss NIH grants for WPI. You guessed it. Mrs. Whittemore never called back.
>To me this is about what's legally right and what's morally right.
1. The Whittmore and their institution.
– Seems like they have the legal right to the notebooks and other materiel.
– Seems like they are known to be involved in lots of iffy affairs.
– Manage to get Judy treated like she was a serial killer by the police. This speaks volumes in my eyes about their power.
– Did I mention casino, alcohol, tobacco, lobbying…
– a look at Mrs Whittemore doesn't exactly give assosiation to an angel…
– maybe I have missed something, but have they showed a caring attitude towards the many patiens?
– they wanted to sell an expensive XMRVtest to MEpatiens…wheres their moral???
– why do they want the notebooks anyway – are they really comitted to keep up the science, or is it again all about money/fundation/grant…?
– I do wonder how much of the grants are used on salaries (read salary of Anette Wnittemore) and also how much of Andreas treatment are paid by being sorted as "Science" (all I would guess).
2. Judy Mikovits
– the really bad guy here, I mean, take a look at her picture…you can certainly see the cynical look at her face, and all the patients testifying how she always took time for time wether it was after a meeting/conference, email correspondence, telephone etc ;)
– she did NOT want to validate that XMRVtest for sale as it wasn't good enough – iow, showing money doesn't come before the care of the pasients and what's morally right…
– she was dedicated to her science and her care for the MEcommunity. Her big crime may have been to "mastermind" the teft of those notebooks.
But what was her purpose? I don't think it was about money. A greedy, mammonloving person wouldn't bother to answer all those mails, and use all that "unneccessary" time to talk to sick people.
In my opinion she has shown nothing but proof of being a dedicated, loving person who cares about the MEcommunity and wants to help find a cure.
She probably knew, based on her experience with the whittemores, that they would not bother too much about finding a cure, not now that Andrea got so well…
– the teft was legally wrong, but morally right. And I think Max thought so too. He knew Judy would use the data for the best interest of the MEcommunity. Unfortunately he was missing 2 days – next thing the whittemores had his confession…. – dont think I have to explain what I think of it.
Having the law on your side doesn't always mean you are the good guy…
I think Judy Mikovits can be compared to Robin Hood.
Elisabeth
PS – have you noticed that most of those speaking highly of WPI never put their names underneath? On facebook, you hardly ever see a personal picture either, and when I have checked their profile, they have like 1 friend and hardly no history — strange huh ;)
>Hey, anon @ 3:10, thats an awful picture. I don't see Andy as intentionally cruel, I think he's just unaware of the realities of this disease.
I dread birthdays and Christmas, the times when I am expected to join in the celebrations. Not because I'm a scrooge, or because I don't enjoy sharing good times with friends and family, but because I inevitably do too much and my illness gets worse because of it.
More fool me.
Either that, or I sensibly refuse to join in, and that gets lonely and can be hurtful to others.
The simple act of validating the severity and physical causation of this disease would go a long way to helping patients cope with ME. It's the under estimation of the suffering that creates unnecessary extra strain on our already strained relationships with the rest of the world, family, friends, doctors, support systems etc.
Andy, you would not enjoy ME. I hope you never get it. I wish that no-one had it. I have had four new sufferers referred to me for advice by a single family member in the last year. This disease epidemic needs controlling!
Jane Clout.
>Andy can take care of himself. He has been researching this illness for over 2 years now and just published a paper on it. So he does know a lot about the suffering in the patient community. He is quite aware of it and sympathetic to it.
What I can tell you is that a heavy hand and I mean really heavy hand is about ready to drop over this whole situation and where and when it falls watch out.
I just remember something from my law enforcement days that stuck me as odd about those affidavits and also all this negogiation. Something seemed very strange.
This is a criminal investigation. WPI reported they called the police in so it became a police investigation, a criminal matter not a civil matter now.
So Max Pfost affidavit was singed by a private notary public employed by the institution which employes him….hmmm. There was no signed confession by a police agency acting as a third disinterested party who is conducting the investigation witnessed by a detective. By the way,The university of Nevada police dept. is investigating the case. When the police feel that they have sufficient evidence they will present it to the DA's where he will assess the charges or present it before secret grand jury. Perhaps everything is sealed right now.
But it is strange that the WPI and Mikovits are in negotiation. You don't do that with the private party you just robbed in a criminal case but with the DA's Office…very strange.
These crimes become acts against the citizens of Nevada and whoever else is involved. You could have number of entities, Mikovits, WPI, Police, The DA, Feds and other perps involved in this. There are still some very serious charges that they are looking into.
If the events as stated were true you have conspiracy to commit a crime, stolen property, crossing state lines with the intent to commit a crime, crossing state lines in the commission of felony, stolen goods possession, research espionage, interfering in the operations of a business, stealing Federal property, using emails in the commission of a crime which could invoke RICO, destruction of stolen property, fraud…to name just a few. I believe the Feds will sooner or later get involve. On the other hand if Judy's version plays out, you will have false reporting of everything, filing false police reports, false imprisonment, perjury etc.
All of this is a bit odd though.
>This whole sorry mess has put our cause back decades, whatever the ending. I am trying SO hard to remain positive but I can't get past Judy getting Max to help her carry out something which she knows full well to be illegal and highly unethical.
I now doubt anyone that's been involved with the WPI, you included Jamie. This blog post stinks of you trying to save your own arse, worried about what may come out. However this plays out, the damage is already done, there's trust lost on all sides. We the patients have been duped and let down massively by all concerned.
I feel sick to my stomach by all of this, and no longer know what or who to believe. This really couldn't have happened at a worse time.
>Yikes, and all because a researcher wanted to protect and have her work, her thoughts, her creativity, her analyses, with her. It's her life's work and what her life was about.
I understand this. I don't think it's different from an artist being attached to his/her paintings, or a musician her scores for symphonies or an author, his books.
I don't think this is comparable to walking away with the cash register from a store.
I agree with one of the anonymous bloggers about what's morally right vs. legally right. There are many instances where we'd put morals first.
All the discussion on this lead to more questions. Unless someone really comes out and says what happened behind closed doors, we won't know more than what we read here. Dr. Deckoff-Jones was quite informative.
I wonder, as do others, including some anonymouses if there was an agreement among all at WPI to keep everything upbeat and positive and insist on the XMRV, and that progress was being made, to keep the funds rolling in for donations and for the testing. I just don't know — yet.
But I"m going to focus on Dr. Enlander's research and try to follow others.
David Tuller has a very extensive article on CFS and the CDC: history and more; interviews; commentary on exercise and CBT, and more, at Virology, I think.
Have a nice day if you can. I want a turkey dinner, but I can't go anywhere or cook. So I may order in a meal. Why not?
>"A "Happy Thanksgiving" message posted today on the WPI facebook page included this statement "We are thankful that most of our property has been returned."
Is that all they said. Then how do you know what material they mean and who returned it? Innocent until proven guilty! Why do others hate that.
>The false story around the western blot was investigated. The material was shown to Science again long before this all occurred. It would take only minutes to check. The fact is they saw all this prior to publication, requested the label change. There is no more story.
>This describes cognitive dysfunction perfectly for those who not have it. I can't phathom trying to deal with the stress Anette has been through with cognitive dysfunction.
"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."
Mark
>Something is wrong about Max Phost's affidavits. He confessed to numerous and very severe felony violations without any police presence? He admitted to committing these felony violations in a signed affidavit before the WPI notary Public. Where were the police? This is now a criminal investigation. It had been turned over to the police. Who gives her the right to illicit a confession?
His Miranda rights were never read to him! He had the right to an attorney. I don't believe this information is written into the affidavit.
These affidavits will be thrown out in a criminal trail case by the court for violation of Max Phost First Amendment Rights. Something is fishy here. Something doesn't smell right.
>"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."
>That sounds like Silverman sequencing the contaminant and not the virus.
>Yes why was Max put in that position with no police present.
>Mark, Annette isn't a patient. Andrea is the treated patient.
>So was the affidavit released to stop the Internet campaign agaist the WPI and to make them look like they are the injured party?
This is also interesting from the Q&A on the 7th October. Where Annette Whittemore answered questions. First is the question that was asked, then the answer.
Q
"The answers given about Mikovit's note books means you won't be returning them. Why not? It is her work."
A
"Whittemore Peterson Institute
Dr.Mikovits took her notebooks out of her office."
>From Dr. Mikovits' husband, David, via Lilly.
Nov 22, 2011
I have just spoken to David, Judy's husband, who asked me to get the following message out to the patient community. Dr. Mikovits and the WPI are in negotiations right now, and the criticism coming from the patient community towards the WPI is not helping Dr. Mikovits. They ask that everyone please hold off on their criticism of the WPI for the sake of Dr. Mikovits and the negotiations in progress. Many have asked me what they can do to help, and at the moment this is what you can do: please, everyone, despite the strong feelings everyone is experiencing, please back off in the furor being expressed online and in direct contact with the WPI. Please stop and urge your friends to stop. Later today Dr. Mikovits' husband is planning to send a direct message, but for now has asked me to convey this message to all of you.
Permission to repost
This message has been reviewed and approved by David, husband of Dr. Mikovits.
Thank you everyone,
Lilly Meehan
Nov. 22, 2011
From David, Dr. Mikovits' husband:
To all friends of Dr. Judy and the science research: Good news! Bail has been granted and Judy will be out in a few hours. We are currently negotiating for a just agreement between all parties in these recent events. Although your actions may be well intentioned, it is actually disruptive to the process for numerous blogs and messages to go out that are inflammatory. Pease use you energy to pray and ask for a peaceful resolution. David Nolde husband of Dr. Judy Mikovits
Permission is given to repost this message.
>"Whittemore Peterson Institute
Dr.Mikovits took her notebooks out of her office."
Why did Annette Whittemore on the 7th Oct say the notebooks were with Dr Mikovits?
>Just a note to let everyone know that Anon November 24, 2011 5:42 AM is Egoclimber from Pheonix Rising. The word "schadenfreude" springs to mind.
>Well Andy hasn't been researching ME for two years. Him and Miller have been very keen on the synthetic man man VP62.
"But it is strange that the WPI and Mikovits are in negotiation. You don't do that with the private party you just robbed in a criminal case but with the DA's Office…very strange. "
Not if this relates to other matters like the cells.
>This "coming clean" is pretty lame, in my opinion. First of all, since it appears Judy was lying on many fronts in recent weeks, there is no reason at all to believe that the notebooks documented the mistakes of other researchers, but that there "didn't seem to be anything she wanted or needed to hide for herself." Jamie, you are still assuming Judy to be a truth-teller and everyone else to be liars. Still the black and white, the saint and the evil conspirators. How much evidence will it take before you see that, if the whole world must be painted black to make your hero look unsullied, maybe you have got the entire composition wrong from start to finish.
"The Whittemores have destroyed a very talented scientist." What earthly evidence do you have for this? They rescued a scientist from oblivion and gave her another chance. I'm not saying they did this out of charity to Judy. She is obviously a very convincing person, since she has managed to draw in a lot of gullible people (and I think I'm being nice to call you gullible at this point). They probably hired her because she convinced them that she was a good bet. They are apparently used to gambling.
"And now Max." The Whittemores have destroyed Max?????? What are you saying? That Max made up his entire, detailed story, under pressure from the Whittemores, sacrificing his entire career and putting himself in jeopardy of criminal prosecution? A likely story, if you live in Never-never-land, as you appear to.
So, in order to continue defending Judy, you are willing to slime not just all the scientists who got negative results on XMRV, not just all the scientists who have expressed doubt about it, not just Judy's employers, who happened to be the first people to put up big money for research into ME/CFS (however incompetent they may have been as research administrators–and we have only the words of you and Judy to indicate that, words that seem to be losing value by the day), but also her research assistant, who apparently unwisely risked his career and freedom to do her bidding. I think you have sunk very very low indeed, and I think that in the long run you will be horrified, in looking back, at how low Judy dragged you.
"I can't tell you all how badly I would like to be done with this." No kidding. I suggest you be done with it, then.
>@anon 10:10AM
A statement taken without the police present and without having miranda rights read wont be allowed as evidence. And why did Annette, on the WPI facebook page on the 7th Oct say Mikovits had the notebooks?
>Negative results based on assays that have not been clinically validated are of no impact to the Lombardi and Lo findings.
>For me Judy is family. She will always be in my heart. Because of her scientific research, my quality and quantity of life has improved. There are many among us who have also benefited from her life's work.
I give thanks for what Judy has done for me and for the rest of the CFS and cancer communities. None of the things related to the notebooks are at all relevant to, or subtract from what she has done for us.
I have heard that everything is now being reviewed and negotiated. Was Judy treated in the professional manner that an elite scientist should expect? Was Judy offered the opportunity to copy the notebooks after she was fired and locked out? Was there concern that the notebooks if left in the WPI might be destroyed? Could the WPI complete the research grants that the notebooks were relevant to without Judy?
I am hoping for another reason to give thanks, a fair ending to this awful situation. If Judy loses, we all lose because it will be quite a while before a virologist of her ability will dare to take up our fight.
Michael Snyderman, MD
>@ Anon Nov.24.11 10.10am "not just Judy's employers, who happened to be the first people to put up big money for research into ME/CFS"
What 'money' ? certainly just over $1 million went from the Whittemore Family Tust to the building fund for the UofN Center for Molecular Medicine, but of all the WPI funding that's been declared in the public domain so far just $300,000 has come from the Whittemores, while over $500k has come from fundraising and $3 millon has come from Federal research grants. Of course $300k is a large sum but WPI research has been nearly 80% US Government funded. Then there's the small matter of up to $1million in test fees being paid to VIPdx by often impoverished M.E/CFS sufferers. http://cfsmirror.blogspot.com/2011/11/chronicle-of-embarrassment-foretold.html
>Anon 12:01 AM,
At the time I wrote that email, we were struggling to keep the lights on. I come from a wealthy family, from who I am estranged, due to disbelief. Including my savant brother who is now a billionaire, I am told. My house is in foreclosure. It is a lovely house, but multi-million is an exaggeration. It was a gift from my parents, but when my father died, my mother went nuts and refused to pay any bills, so the house is in foreclosure and her estate is tied up in the courts. My husband and I lost everything to the illness, in a financial sense. He is a plumber and we have 3 children and 2 grandchildren at home, facing the costs of college next year for our youngest. I am working, but just breaking even at this point, since I can only work part-time.
When I first learned of the XMRV test, $2400 was out of reach. We have been to the place of feeling we needed to choose between prescription meds and necessities of life, like food.
Jamie
>Anon 5:56 AM, Yes, they have brought down everyone that was involved with them. That is clear.
I have mail this morning from patients that are angry that I did not come clean sooner. For that, I am truly sorry. Though clearly very flawed, I still thought that the WPI was all we had, and it could be saved. Judy was still working. But without Judy there is no there there.
Somebody wrote that I am trying to save my own "arse". I'm not sure how anyone thinks writing what I have is a safe thing to do, when I could much more easily sit here in silence. And others have mentioned my "agenda" at various times. What agenda is that?
As for those that think I can't tell when a friend is lying to me, please remember that I know Judy very well. This entire affair has been handled in the way that bullies do things, and it is usually best to stand up to bullies.
Jamie
>Thankyou Dr. Snyderman. There are a large number of us who share your thoughts and feelings about Dr. Mikovits.
In contrast to your own courage and strong priciples, I note that while Anon @ 9:54am harbours a great deal of disdain for Dr Mikovits' supporters, he doen't possess the courage to put a name to his vitriolic rant.
>The WPI have nothing now. The Lipkin study is not needed and cannot be done whilst Judy is tied up having to get access to her research work. It could be a while before the viruses are fully sequenced and I personally blame the well fed Whittemores for it. All over cells!
>Regardless of who you've all been supporting to date, I'd start backing away quite quickly from this whole, sorry, unprofessional mess. Trying to sort out who's lying and who's telling the truth, is bizarre and confusing for a well person: if you're ill, you really don't need this stress.
Guard your heart, guard your money, guard your health. Back away, and let time sort this out.
>Until I know more about the situation, from what I can tell now, I agree with an earlier statement: Mikovits is our Robin Hood.
If Dr. Judy Mikovits stole the notebooks, she did so because she thought it had to be done to save the research. Research that she thinks could save our lives — and save many many more in the general public who are not yet inflicted with our illness, but are at risk.
And what about Dr. Jamie? Dr. Jamie is brave to publicly come forward and state, over and over again, her views of what is going on. How many of us would dare to be so brave? Without her, we'd be in the dark about so much of what is happening right now — and it is all happening in our name and with our lives.
Rivka
>Won't multiple parties also own the notebooks anyway? The whole affair is looking very silly to me.
>Regarding the affadavit — it is for use in the civil case and was added into evidence in the civil case. Don't think for one moment that Max Pfost has not written a statement for the police which can be used in the criminal case.
>Rivka – thing is that JM has shot herself in the foot – who would let her run a research programme now? It's not just the big allegations – the lack of reproducability and all the other things people keep going on about, it's the little things – like taking the lab notebooks home to work on – that's a major no-no in terms of lab protocol. She is not professional (i,e. trustworthy) in the way she manages herself as a researcher.
She might have marvelelous insights that would make a difference for patients (although the evidence for this is very flimsy) – but in the way that she has *chosen* to conduct herself, she has made it very difficult, if not impossible for her to do research work, and be considered a legitimate scientist.
(and I'm not excusing WPI in all this – they sound like they couldn't organise a piss-up in a brewery – to be frank)
>@ Rivka, whom I admire greatly. Lest not our hopes be dashed. I think it would be prudent to see what is in the notebooks before you use the "Robin Hood" analogy. As Dr. Jaimie says, the notbeooks deoict a failed experimeht. However, notebooks generally stay with the imstitution and a copy goes with the researcher. But they NEVER leave the Institute. Contracts dictate and supercede everything in court. Unless someone has seen the contract between WPI and Judy, all discussions are speculation and a waste of time.
>I really don't think I posted anything here that was even remotely negative to the ME/CFS community, just to Mikovits.
I'm sorry that I invoked enough ire to warrant that picture. That was a bummer.
Regardless of whether you like our research, I did spend the last two years working on XMRV in good faith, and have the publication record to prove it. I think the ME/CFS patient community is deserving of every bit of sympathy and every research dollar possible. So again, I'm sorry if anything I said was construed as insulting to any patients. Any negativity was only in regards to my difficulty with Mikovtis' involving her grad student, Max, in the situation.
Happy Thanksgiving,
Andy Vaughan
>this blog is the first one i turn to when i need to know something about the current state of research/treatment being conducted around me/cfs (i use this term mostly for clarity, not out of ignorance about the disease) – it was especially distasteful to log on and read the responses from the patient community about the fight going on at wpi. i have been to see peterson, and was treated with smug disdain by he and his staff. since that time i have been reluctant to jump on the bandwagon steered by any doctor's "info" about this illness. the responses to this blog reinforce my decision. all these speculations and opinions from people who basically know little about the actual situation are enough to turn any well person into a skeptic – and i'm sure any medical people reading these posts are reacting with the same disgust. it's one thing to discuss your illness with an online medical source, but another can of worms entirely to tar and feather everyone involved with an institute with the same materials all of you were clamoring for a few months ago.
thank you dr. jamie for continually putting your professional life on the line to keep the patient community informed – i just wish more people could post without all the opinions and misinformation – remember: opinion are like asses – they all stink and everyone's got one, making asses the primary source of the stink surrounding this entire sitch.
>I had a gut feeling all this would come to a head last year.But many told me WPI was suppose to help us.I have many emails from both parties.
All I know is I got the test and was told they would re-test it for free.I have called several times and was told that the paid customers were first.I did pay 500.00 and was told "negative" well My doctor shook his head and laughed.I was a fool.And I want a refund if its all fraud.
I have lost homes….. to this disease.And to pay 500.00 for a bogus fraud test.
I will never get well I can see this now.Its all about money and fame and to hell with millions of us dying here.
I feel like a damn fool donating to a Cause that had no intentions of helping the poor people.Get it people this is a Rich Man`s disease and we are doomed.So stop sending in your grocery money to these people.
Fools Gold!
>@anon 11:29
And you are? Yes nobody who can reveal if any of that is true. Having released Max's affidavidit won't help. As can that not prejudice the case? And what of Annette Whittemore saying on the 7 Oct, "Dr.Mikovits took her notebooks out of her office." in response to the question, "The answers given about Mikovit's note books means you won't be returning them. Why not? It is her work.". Max said he had the items at that time.
And how were two people hostile toward Mikovits able to post the raw gel on the internet on the 4th October?
>"Regardless of whether you like our research, I did spend the last two years working on XMRV in good faith, and have the publication record to prove it. I think the ME/CFS patient community is deserving of every bit of sympathy and every research dollar possible. So again, I'm sorry if anything I said was construed as insulting to any patients. Any negativity was only in regards to my difficulty with Mikovtis' involving her grad student, Max, in the situation."
But you did not spend two years researching ME or the viruses detected by Dr Mikovits and Dr Ruscetti. You studied a synthetic virus that Silverman made in 2006.
The problem with your actions Andy is that you have jumped to conclusions that Mikovits has done anything wrong. We do not know if Max's affidavit is true and if the police were not present it cannot be used as evidence. We also don't know what Mikovits and other had legal access to.
Your paper on finding part of an ERV in 3T3 cells was also only a repeat of the previously published Paprotka ERV.
>Dr. Mitkovits' husband specifically issued a statement yesterday requesting that people refrain from making comments regarding the case. If you sincerely care about your friend why are you doing this, you are not helping matters.
>Looks to me like someone else wrote that statement. And the issue was inflammatory posts not what has occurred and asking questions.
>For what reason did they post only certain affidavits on the web. No police present and no Miranda rights would make them impossible to use.