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.
>I had heard that Judy might go to Canada to research….maybe Alberta, where she was well-received. They have a large virology research building there..But now, she might not be hirable….this is all ao moritfying. Despite everything, I just can't see anyone else fighting as hard as Mikovits for us.
I think that before we judge her so harshly, we must remember that she was mostly single-handedly dealing with thousands and thousands of suicidal patients emailing, writing, and calling her. During all of this, she was expected to do the research, go to all the seminars, etc, etc. Eventually, even the strongest person in the world would crack.
>Ho hum @1:24 PM — a civil case is iniated by a complainant and the complainant files evidence about their complaint and has to pay the court to do so. Using a notary public makes the document legal and official. There was no arrest being made when Max Pfost swore out the affadavit, therefore no miranda rights were necessary. Police do not have to be present or even involved in a civil suit. The affadavit being signed by a notary public makes them usuable in a civil case. You are confusing criminal law with civil law. You may not lie in an affadavit in either type of case. Stop looking for excuses and using red herrings.
The affadavit can be used in the civil case and I am sure the police have interviewed Max Pfost for his statement about the events. He would be asked to sign that statement. Max would only have to use Miranda rights if he was being arrested. Max Pfost may be asked in court to repeat what happened under oath. If it turns out to be a different description, because the affadavit is notarized it can be used in the criminal trial as evidence. A court trial would also produce evidence of his statements — like phone records, car rental receipts etc.
So in short, these statements made by Max Pfost are extremely important for many different reasons.
>@1:58 PM
This is the reason why researchers should remain unbiased and remain removed from the patients who their research might affect. She should have realized it wasn't her job to coddle thousands of patients. Guess her messiah complex got in the way of that. Look what happened and who says she stole the materials for the patients, maybe she did, maybe she didn't. She could have done it for other reasons — she has certainly exposed herself to be extremely dishonest and unethical in many respects. She has slimed the WPI, the patient population and herself with her actions.
>Does anyone find it odd that in the first affadavit from 16 nov there is mention of Lombardi and the cell lines, but in the second affadavit from 21 nov, it is markedly absent? And instead there is some back-door aspersion-casting on Dr Peterson?
>Miranda rights are only read to someone when they are arrested. As far as we know, Max has not yet been arrested.
'An affidavit (pronounced /ˌæfɨˈdeɪvɨt/, a-fə-day-vət) is a written sworn statement of fact voluntarily made by an affiant or deponent under an oath or affirmation administered by a person authorized to do so by law. Such statement is witnessed as to the authenticity of the affiant's signature by a taker of oaths, such as a notary public or commissioner of oaths. The name is Medieval Latin for he has declared upon oath. An affidavit is a type of verified statement or showing, or in other words, it contains a verification, meaning it is under oath or penalty of perjury, and this serves as evidence to its veracity and is required for court proceedings. Not allow evidence to be gathered from witnesses or participants who may not be available to testify in person before the court, or who may otherwise fear for their safety if their true identities are revealed in court."
>Anon @1.58
You have clearly never met Dr. Mikovits if you can accuse her of having a messiah complex, I think we all here know the truth about who has the messiah complex and it is certainly Annette Whittemore. I say all here Whittemore trolls excused of course.
You will never stop the patients from following Dr.Judy Mikovits, just as you will never stop us rubbishing the WPI, for that is how we feel, they are absolutely contemptible to fire the researcher who helps their daughter get well. They think moral are pictures on walls and scruples a currency in Russia. SCUM.
>@ anon 2:06PM
Let's see who has been getting in contact with patients to "help". Dusty Miller, Andy Vaughan, Alan Dove, Mendoza on Bad Science. And who has responded to contact, McClure, Racaniello, etc. Looks like your argument fails.
>@anon 2:08
How do you know Max has not been arrested?
More importantly how did Billy & RRM get alledged raw material from Lombardi et al and post it on the web on the 4th October? There is no story to fit that with it being Mikovits.
>What a train wreck. Sounds like none of you knew what you were doing, and makes me ashamed to say I am a doctor.
>Puzzling how a lowly notary public from the WPI was able to 'get' him to 'confess' on a sworn affidavit no less. If he was willing to confess and since the police had been notified and the investigation had been turned over to them, why didn't they just call the police? I mean there are some issues surrounding his 5th Amendment Rights. What is the police going to do now. Grab the affidavits and charge him….'fruit of a poison tree' Strange how each of his affadavits and time lines differ somewhat?
>BreatheEasy — no, I don't find it odd. Different questions were probably asked for the different affidavits. Red Herring.
To the person with the original gel red herring. It's been explained over and over where the image came from, de-formatted powerpoint presentation. Are you trying to claim this gel went missing the same time that the other materials went missing from the WPI. The email with the image of the original gel was circulating prior to the day Mikovits got fired. It also has absolutely nothing to do with Mikovits behavior that led to her arrest and incarceration. Red herring. Why don't you email ERV and ask her where she got it from. Billy copied it off a blog.
Other person with the comment about how Mikovits has saved untold millions with her Messiah like behavior. When somebody says she is going to save the patient population with her research and only she can do it, it comes off as very Messiah-like.
I hope she apologizes to all for her bizarre and erratic behavior and issues a statement after all the legal stuff is over with a reason why she behaved the way she has. I also noticed she basically ignored the "patients" from the time she got fired until the present.
>Look forward , not backward. Donations made or about to be made to WPI or the Whittimores should be redirected. We are sending our donation to the best game in the nation The Mount Sinai ME/CFS clinical and Research Group in New York. The latest conference was an inspiration
>@BreatheEasy
"Does anyone find it odd that in the first affadavit from 16 nov there is mention of Lombardi and the cell lines, but in the second affadavit from 21 nov, it is markedly absent?"
No, this isn't odd, really. You won't expect two identical affidavits from the same person because the purpose of the second affidavit is to add new information.
Of course, when describing this new information, some old information may be repeated for the purpose of keeping things comprehensible, but if it not for this purpose, there is really no need to repeat earlier statements.
>1) robin hood was a criminal despite his intentions. so i really see no honor in that comparison.
2) you can not tell if someone is telling you the truth by the look on their face…if you can you should work for the fbi or cia
3) i don't know andy v's view of judy re: the circumstances she now finds herself in, but he is just as entitled to his view as you are of yours….and his has read the evidence of wrongdoing and unfair manipultion of a grad student and 1000's of sick patients (just like you)…surely an abuse of power at a minimum.
4) when will u ppl admit you were all hoodwinked and nothing will now come of judy or wpi's work at least not from them, they are DAMAGED /Morally corrupt goods.
5) i am very upset that this WPI and dr judy both took advantage of me and others like me, in my diseased weakened state; and I will not be defending, sending money or emotionally supporting either scummy side in this freak sideshow.
6) this is just another example of desperate ME/CFS patients being taken advantage of and screwed again…it's unreal to me how so many of you can not see that and continue to support someone who so obviously used and manipulated you.
7) i hope there is some organization or researcher or dr out there who really want to help ME/CFS patients and not just take their money or use them to feed their ego….otherwise we will all be sick until our end comes.
10) weird jamie, how u went so quickly from being wary of wpi to being one of their biggest supporters….did your family get xmrv tests for free and then judy massaged you dr. ego to get you in on her side of the racket.
11) wonder how deep the ruscettis are involved in the dirtiness of this whole escapade….sad thought.
>What struck me most in the blog, and which nobody has commented on, was the idea of doctors getting a percentage in the "business"–which beyond doctors' profits, would generate a million in profit a year.
It was a for-profit business, and when doctors are running a business, they tend to make decisions based on money. In an ER, that might be recommending a catscan for a nuisance bump on the head that shows no signs of being in any way dangerous, etc.
This "business" for a patient community that is often disabled, and on SSDI.
The model gave me the shudders back then, and I protested back then. I still think it's wrong, and I'm glad it didn't happen.
Jill Neimark
>Paul Watton, I am the anonymous you are excoriating here. I am writing as "anonymous," as are most commentators here, because there seem to be a lot of nutty and venomous folks here, and we really don't know who most of them are. You may be happy to share your name, especially because you are friendly to Dr. Jamie and Dr. Judy, but that doesn't mean it would be wise for me to do so. I am not cowardly, but I am not stupid either. And, by the way, if I wanted to, I could call myself "Joe Blow" or anything else, and you wouldn't be any the wiser. So "anonymous" is my honest identity right now.
As for those who pretend that those of us who are expressing disgust with Judy and Jamie are "Whittemore's trolls," I just want to make it clear that I am a 7-year patient on the east coast of the U.S. who has never met or spoken to or corresponded with any of the participants, except on this blog, and that I was a fan of Jamie's until pretty recently, only losing enthusiasm as her defense of the indefensible became more insistent and nutty-seeming.
This blog has been my main window into the whole WPI controversy. It really wasn't until I read the affidavit from Max that I finally realized how deceitful Judy must have been being all along, and how gullible Jamie has been (and still is). I am no big fan of the Whittemores either. They have obviously behaved foolishly and incompetently, perhaps unethically, and they have wasted a lot of their own money as well as patients' money. It's a big, shameful mess, and I'm just glad it has taken two years to unfold, because otherwise the letdown would be blowing me away right now. As it is, I let go of hope in XMRV and in Judy's research gradually over the past year, although I still assumed she was honest and well-intentioned (though probably mistaken) until very recently.
I hope that Judy's supporters here will face the fact that the patient group is diverse in our perspectives on this fiasco. You don't have to be a "troll" to see Judy in a negative light at this point!!!! A lot of us are dismayed at what she has done to our community, though I can see that some patients are still continuing to interpret everything in the best possible light for her. Perhaps if she was a friend of mine I would be doing the same. It is all very sad.
>"weird jamie, how u went so quickly from being wary of wpi to being one of their biggest supporters."
I thought the same. I've read Jamie's "Coming clean", three times since yesterday. After the first time I read it, it just kept bugging me…..it seemed disconnected/disjointed….contradictive.
And why would you keep deriding WPI when they could make a case for damages in suing Judy for damage to their reputation and business. It's time to be quiet, Jamie. If you're trying to ease your conscience, don't do it at Judy's expense. At anybody's expense.
>quote:
And why would you keep deriding WPI when they could make a case for damages in suing Judy for damage to their reputation and business.
I don't think so. Truth is an absolute defense to a defamation claim. See https://www.eff.org/issues/bloggers/legal/liability/defamation
I think it's time the Whittemores started watching what they write.
Patricia Carter
>No Billy never would say where he got the gel from, neither has RRM. It also should not have been circulating on an email as it us alleged raw Lombardi data. The question is how did that get onto the web?
>@Anon 5:28
The viruses discovered in people with ME have been proven to not be VP62/XMRV, that is why all the negatives papers are useless to the finding. They all, yes even those claiming to have looked for other MRVs, lol, failed to look for those viruses. Their assays were only optimised to the synthetic clone and were categorically NOT clinically validated. Doing that with HIV would have landed them in jail!
>Where did those human viruses come from? As the 22Rv1 story is totally destroyed!
>"I don't think so. Truth is an absolute defense to a defamation claim"
and u know the truth….how? is your knowledge also by looking in Judy's face and knowing she was not lying. Or beyond that…how do you know Jamie is telling the truth. You ppl must have magical powers…too bad they did not come into action earlier to recognize the sham that was being pulled on us.
this is becoming more and more ridiculous!
>:how many times and in differnet places to we have to read this excuse…..its as bad a jill mcclaughlins crazy ME/CFS skiped record stmt.
you ppl are giving me/cfs pts an even worse reputation….please stop worring abt judy's future, wpi's demise, what jamie knew and how great she is to share it with us 1.5 years after the fact; and start worrying abt our lives. we are the ones dying. and noone wants to help us because the loudest voices in the community are all the crazy/nonsensical voices.
>what is inspiring about the mt sinai CFS centre? are they looking for new pathogens? because unless they are, i am not interested in donating. i have had enough of rituxan, gcmaf, anti herpes, and ampligen. there is an unknown pathogen at play; that – and ONLY that – matters. millions do not start becoming ill from pathogens we already know about. it just does not happen.
>To the red herring poster. How does any raw data from a gel get onto a powerpoint? Let's see, it gets scanned, then the scan gets copied into a powerpoint slide. You can edit the slide from there, like add new labels with hand written labels to clean it up. Then you save what you have done which reformats the original slide. If you want to start over you can reformat the powerpoint slide back to the original. When you are ready to give a presentation, you can either copy your presentation to a CD or you can save a copy in your computer or both. Many researchers make extra copies of their presentations and give them out on CD's. Some will send a copy of the file of their presentation to interested parties. Either way, if you have not bothered to restrict access parameters on the copies, then people will be able to unformat your slides and see the original slides before you edited them. Now either you are not getting this or you can't get it or you just want to be in denial. Maybe you should contact Trine who wrote in the Chicago Tribune that a copy of the PPP slide was being circulated amongst an email group. It's not too difficult to understand this. Why keep accusing Billy or RRM. ERV posted on Bad Science on September 29th around 2:45 PM (US time) that she had received this information from an anonymous source. Now what on earth does this slide have to do with Mikovits and the disappearance of notebooks, computers, memory sticks, etc from the WPI. Are you trying to say that Billy or RRM or both broke into the WPI and made off with everything. I don't believe RRM even lives in the USA. OR was it ERV who miraculously was able to get into the lab before Mikovits was even fired, coming all the way from Oklahoma, and made off with all this stuff so she could write her snarky blog. The powerpoint explanation actually makes the most sense.
Really what is your obsession with this except to provide a red herring to the issue.
You seem to forget that there are 3 copies of this gel slide. The original, the slide that was in the original Lombardi et al paper, and the slide presented in Ottawa by Mikovits. Either way, Mikovits used the slide from the original paper, changed it's label, changed what it meant and then presented it in Ottawa. So whether, somebody stole it as you seem to be claiming, they didn't change it and present it in Ottawa, did they?
>Oh look the you people argument. Lacking isn't it. Lol
>Where is the replication study of Lombardi et al? Why are they avoiding testing the hypothesis?
>thank the lord i am an aussie
>The anonymous i.d. is just baffling, not only insulting to those of us who put our names or emails on the page.
For one thing, it's insensitive to people with this disease. I look and see 10 anonymous posts. I don't know who's replying to what, who's writing a second time after writing a few posts above it.
Give us a break! At least have an organized system like: Anonymous A, Anonymous B, Anonymous C, etc. Gee whiz!
I just hope the truth comes out. I don't cast aspersions on Dr. Mikowits because it's understandable to me why a scientist would want her research materials. It's her thinking and her work, as a musician's composition is theirs.
Also, she probably thought it was helpful.
None of this was handled properly from either or any side.
And in the balance, I don't think any side, any of it helps the CFS community.
From what I know Dr. Enlander's center has one geneticist, one immunologist, one virologist. It is hiring lab assistants. It sounds serious and committed.
I'm not throwing all my eggs into anyone's basket, just looking at all of the research going on and waiting to see what happens — and hope that it's quick.
>@ Jill Neimark,
It makes you shudder that someone wanted to charge the patients fairly, pay the doctors modestly and donate the profits back to research? While developing a large clinical database, and carrying out IRB approved clinical trials? Rather than line the doctors' pockets with no return for patients, as is usually how it goes.
>Oh, Please spare us the platitudes, Jamie. It's really between the haves and the have nots. The bottom line, it is about the money. The difference between those that can afford the treatment while dissing the Medicare recipient on disability who lay suffering in their beds. Begging for a donation from them as they reach for the small amount of spare change they have…a nickel here, a dime there to send to the institute; a letter here, a letter written there hoping that it will help just this one time. Juxtapose against patent filings and big pharmaceuticals interests, research funding, I think we get the picture now.
>I like Enlander, but he is going to work with Singh. Singh stated that assays must be clinically validated, she also had a previous assay that was clinically validated, she then used another assay NOT clinically validated to test patients. I have no faith in this person because of that. Bet she doesn't try it with other pathogens, but hey there is no hypothesis around them. We don't need anyone who would do that!
>@anon 10:56
That's is not Jamies fault.
>Anon 10:56 PM,
I don't disagree with you, but you are overlooking the reality of delivering medical care in the current system. Medicare is about to cut physician reimbursement by 27% this year, back to early '90's. I looked hard at the numbers. It wasn't possible to do it, given the overhead, and even break even. But we covered all this way back when. Most understood the reality. It is a moot point now in any case.
Jamie
>From what I've read of Annette Whittemore's behaviour, it seems likely has autism caused by a human gammaretroviral infection.
>@b Kathy d – the comparison with a composer isn't a particularly good one. If a composer sits in their room independantly slaving over their masterpiece, then the composition is solely theirs. However, in the good old Classical days, it was common for composers to have a patron – who paid for the compositions; may have provided accommodation, salary, expenses etc. WHile the composers name went on the composition – the output belonged to the patron (in as much as music can belong to anyone).
It's kind of similar for researchers workign in an institution. There is no way that an individual reearcher could typically afford the equipment, supplies and facilities that are required in lots of medical research. So the institution supplies the physical faciltiies and consumables, and pays the researcher a wage (etc.) – the researcher supplies the intellectual power.
The output (data, patents etc) typically belongs to the institution; the academic credit (bragging rights) usually goes to the researcher.
Mikovits was paid to do research *for* WPI.
>I don't think Gerwyn etc. know how Powerpoint works.
>Is "slimed" the new buzz word in the US?
There aren't any true villains here, just a business venture that has soured with the inevitable accusations and mud slinging from both sides. What Harvey Whittemore did or didn't do in a past life is irrelevant. He and his wife set up the WPI to try to solve the riddle of what causes this illness because government can't/won't, and Judy Mikovits got involved because she wanted to help the sick. Their intentions were good, their business management was not, things have soured. As is often the case in this kind of situation, a few lies have been told on both sides. Big deal. There is nothing unusual about that. Dry your tears.
Having Judy arrested was ridiculous certainly, but does not make Annette Whittemore the anti-Christ, nor is she a Bernie Maddoff type character trying to dupe patients of their money. She's not been an effective manager. She was perhaps not the right person for the job. And yes, businesses do need to make a profit or they can't run. As for what medication their daughter is taking, well that is entirely her own business. She is not under any obligation to disclose her personal medical information. Nobody is.
This forum has become a place for the disgruntled and those with an axe to grind to vent their bile and score points (mostly of the I know more about science than you kind (yawn))more than a discussion place for the exchange of ideas. It's become really boring.
I have been a staunch supporter of the WPI and Judy Mikovits from the beginning. I have also donated money, rallied friends and family to do so and stood up in defense of all concerned on several occasions. In spite of having done so I am not feeling personally aggrieved by current events nor feeling betrayed, and really don't think others should be either. Perhaps my reaction is due to the fact I have been sick so long (almost 30 years now) with an illness that has been ignored, ridiculed, had research money stolen and so forth so many times, that I never fully invest myself emotionally in anyone or anything offering solutions too early on. That way you can't be too disappointed. It's never over until the fat lady sings, and in terms of cause and available treatments for this illness, the fat lady has in no way sung yet. I agree with the earlier post who said that we have not yet found the single pathogen which is responsible for causing this illness. That work needs to continue.
I do not believe that these events will have too much impact on further research. There has never been money or resources allocated to the illness, only to smash down any research which has looked like proving a physical cause. So what's changed? For some reason they are scared shitless by a physical cause being uncovered. However, in spite of the uselessness of government agencies, very good research is going on in Norway, Belgium, the US and other countries, and we are starting to see the results of long-term antiviral medications and now chemotherapy – research that has been quietly going on regardless by those at the coal face. The future still looks bright. We are still going forward.
Don't turn this into a soap opera played out on the internet. It's not a Hollywood movie with good guys, bad guys, a moral and a happy ending.
It's real life and fallible human beings. They are not out to get you. It just seems that way sometimes when you've been sick a long time.
>I don't think Jamie DJ is a serial killer who needs to be outed either. Just to be clear.
>thank you dr jamie, for keeping "us" posted… & with your wonderful honestly, & straightforwardness !
for me *right now*, i am honoring judy's husband request, about keeping our big fat mouths shut !1:):)
What is behind this….will blow our minds !
But The.."TRUTH SHALL Prevail"
May "WE' send Lots of Prayer's, Spiritual Meditations,Our Lights….whatever it is for you,
to ALL involed in this 'drama' & May,..Truth & Peace,& be the outcome.
dr. judy………" You are Loved Greatly"
marie
>Oh, Lisa, you are way too sane for this forum. No sarcasm intended. It's nice to have a reality check, though.
Of course, many of us are stuck in bed and have too much time on our hands and rather relish a soap opera or Hollywood movie now and then (I'm not excluding myself from this group…I sometimes turn to this forum to see what the latest nuttiness or the latest combat is about).
It's good to be reminded that we are still going forward and the future still looks bright. On the whole, I agree with you, although I know there are patients for whom the future looks grim indeed.
>@Stella
Evidentally not, as, I have already explained Powerpoint formatting three times.
I have also already explained three times the source of the original gel.
Some people just have a hard time admitting they are wrong. With Gerwyn, V99 and the lot it's a little bit more extreme than that: when proven wrong, they will push their point even more aggresively. They are so emotionally invested into their "facts" that, when prophecy fails, altering their belief isn't really an option. Enlisting social support for their belief is another, more efficient option to reduce cognitive dissonace.
A small but nice example of this would be V99's contention that Silverman sequenced three full length clones. After somebody pointed out to her that there were just two full length clones sequenced, she was not only unable to give in, but she apparently had to repeat this "fact" in the petition letter that demanded a permanent halt to the Lipkin study (just look it up). Although such a basic error will undoubtedly hurt the whole purpose of letter as well as the people supporting it, the idea that she could incorperate this into a letter that was probably signed by a few dozens of patients, must have made her feel that she was right all along (despite the fact that she was clearly not).
>As I said earlier, this whole episode and perhaps all of the backstory wasn't handled properly all the way around.
On intellectual property, I do think that a scientist's thoughts and creativity belong to that person. They do own their own minds. No one should own another person's mind and its products.
I'm not saying this was all handled well at all, and frankly, I think we don't know a lot of what went on behind the scenes. All I have is more questions the more we read.
The arrest, jailing and detention, in my view, is ridiculous and mean-spirited, no matter what happened. That is bullying tactics, and not the proper way to handle disputes.
But as I've said here and at other blogs, how do the internal squabbles in an institute work for those of us with CFS? How do they help us? They don't.
And as I said, I haven't and won't put all of my hope into one basket and then be crestfallen when something doesn't work out. There are many doctors working on this now. I agree that the Norwegians Drs. Fluge and Malle; Lipkin, Klimas, Komaroff, the Lights and others in the U.S. and elsewhere, are making strides. They are not all working on the cause of CFS or trying to find the pathogen, but they are trying to find biomarkers and a lot of other things.
The Norwegians aren't only testing Rituximab, as far as I know, but they're doing research to find out how the B-cells are involved in CFS, and if it's an autoimmune disease and more.
David Tuller just wrote an excellent article on the history of CDC non-action on CFS, and he interviewed a number of people, including sufferers. He did a service to us with the article. I'll try to post exactly where it is.
There are developments, no giant breakthroughs, but steps are being taken. And there's a lot more research going on that ever before.
I credit Dr. Mikovits with getting CFS out of the closet and into the public domain, with more doctors and researchers getting educated about the real impact of this disease, with media coverage. And more are taking it on.
It is appalling that still the NIH only grants $4-6 million a year for research. That's just ridiculous.
So, some family foundations are putting up money for research, including for Dr. Enlander's facility. My worry is that his donation isn't all that much for running such a center; hopefully, more will donate.
But one more thing: Even though Medicare does not compensate doctors adequately and more cutbacks are coming in the federal budget, thanks to Congress, it really does not justify denial of any care to any of us.
At the CFSAC meeting, a Medicare executive said that 300,000 people with CFS were treated last year at a cost of $100 million.
A lot of CFS sufferers have Medicare and/or Medicaid; many are on SSDI or SSI. Many do not have private insurance or a spouse's insurance.
And everyone should be able to get medical care, all of us. It's not anyone's fault that they have governmental health coverage. It makes for a two-tier medical system, which it arguably is anyway, but why make it worse? It's just morally wrong otherwise.
Who even knows if Rituximab, if proven successful, will even be available, leaving aside toxicity for a minute, to anyone with public health insurance? It costs tens of thousands of dollars. It'll be available to those who can afford it, and not to others.
>@ Lisa Simpson:
I completely agree with you.
BB
>Anonymous A, B, and C (for kathy d.'s sake) said…
Oh, Lisa, you are way too sane for this forum.
Pwah haaaaa!
I'm not trying to trivialise the impact here or condone anything, but I do think we should keep it in perspective. For our own sanity.
>I'm keeping this whole thing in perspective by knowing that in the history of medicine and science, in general, that there are forward steps and backward steps, hypotheses which work out, and many that don't, zigs and zags.
I don't think any development comes from a straight line of progress. That's what I've thought through this whole thing.
It's just too bad that people were hurt, that people with little resources made big sacrifices to donate, that so many had their hopes up and they were dashed.
I'm just trying to look on the positive side of all of the research that was spurred on by the recent developments, and the knowledge of how serious is this disease, how debilitating to so many people. The reality came out.
>I know this is off-topic but want to share this before I sign off.
An old friend and well-respected senior epidemiologist said this to me recently (with much conviction):
"I have ALWAYS believed that ME is viral. There is no doubt about it."
Good to know.
>You cannot blame people for being dissatisfied with the failure of the scientific community to deal with this situation properly and thoroughly.
It is clear to me that the error made by the Silverman lab was disastrous and has been at the heart of the problems others have subsequently faced in reproducing the XMRV findings.
Why then, now that this fact is known, is nobody in a position of authority encouraging (by way of providing funding) those same labs to re-run their studies, but this time looking for the wider family of HGRVs that Alter/Lo found.
In order to address all of the legitimate (but as yet unaswered) questions and concerns that still remain, the only truly honest thing to do, would be to wind the clock back two years and start again.
Unless that happens, doubt and conspiracy theories will continue to abound …… and probably for very good reason.
For the future of XMRV / HGRV research to now ride on the outcome of a single study – the Lipkin study (if it actually goes ahead), is clearly unreliable.
>Lisa Simpson said… "He and his wife set up the WPI to try to solve the riddle of what causes this illness because government can't/won't, and Judy Mikovits got involved because she wanted to help the sick."
So why has 75% of the WPI funding come from Federal sources ? And was Mikovits in no way motivated by her $185k salary ? Putting emotional glosses on the WPI fiasco is just 'lipsticking the pig', it just makes a grubby snout look more ridiculous. The only benefit that can from an affair like this is to learn what was wrong and not repeat it – in the case of the WPI and Mikovits that means asking pertinent questions and using the answers as a guide to future action. The WPI was structurally flawed from the outset, its notional foundation (unscientific neuro-immune concept, grandiose plans, inadequate links to wider science etc) was predictive of failure. The association with a profit making operation Redlabs/VIPdx that had a higher economic through put than the non profit side was also always going to be a source of imbalance. There are still many pertinent questions that M.E/CFS affected people need to ask of the WPI and its participants – no sentimentalisation should get in the way of those questions. Truth is Annette, Judy, Harvey, Vinny – all screwed up, they owe explanations, not as 'friends' or 'heroes' but as occupants of positions that attracted public trust. At this stage the only reasoned conclusion is that the WPI is, and never has been 'fit for purpose'. Whatever the future of retroviral research, or M.E/CFS research, or the relatedness of those two fields, the best interests of M.E/CFS affected people wil be served by creation of a clear fire break between all future research and the WPI and all those who have had recent association with it.
>Some were upset that no comment about Judy was made by Dr Enlander at the 20th November (last Sunday). Obviously in retrospect he was correct. He chose to wait and see, making premature comment is not his mode. We also will direct our donation to the Mount Sinai ME/CFS group, contact email is denlander@aol.com