CFS Chronicles

There's No Business Like Show Business 02/29/2012

There’s No Business Like Show Business

Some recurring positive attributes given to the Whittemores in recent news articles are along the lines of affable, friendly, likeable. And I will admit, in part, they are exactly that in my experience. Annette struck me as charming, sincere, and gracious. Harvey as in command, always smiling and a devoted family man. They invited me into their home. I took that as a great honor because of their high profile and need, I was sure, to be careful about letting their guard down, even with some lowly patient from the East coast. I had no other intention than to be helpful to the institute, to the family running it, and to the former NCI retrovirologist in charge. As my confidence grew in WPI’s goals, I made plans to create county wide fundraisers for WPI along with penny drives in our schools to help make people aware of neuroimmune diseases. I, along with many other patients, made myself sick voting and soliciting votes daily for Chase giveaway and Vivant. All that was with the intention of raising money for Judy’s research. Not WPI research with whomever Annette chose to plug into the grant, but Judy’s research. In my eyes, and I think in most patients’ eyes, Annette’s main priority was to support and fund Judy Mikovits’ research.

As my concerns grew with WPI about a year ago, my priority became praying that the stress from the fight for HGRV validity did not rip the institute apart. I blamed it on the government pressures and scientific political pressures. I was not inclined to say, even to good friends, that I believed part of the stress was in mismanagement on Annette’s part, even though I knew better. I have several friends who would tell me what a fiasco the public relations was with WPI. All of them, highly intelligent, former business people. I made every excuse for WPI though, the primary one was what I was fed on a daily basis. They were straining financially and could not afford enough help.

Robbing Peter to Pay Paul

If the Seenos are correct in accusing the Whittemores of embezzling Wingfield funds to support their lavish lifestyle and run WPI, then the Whittemores have made an art out of robbing Peter to pay Paul. In fact, after reading several recent news articles, it seems ever since the real estate crash that is what the Whittemores have probably been doing. They rob one person blind in a law suit, or embezzle, in order to pay someone off who is breathing hot and heavy down their necks. You would have to fall on desperate time to embezzle from the Seenos. This is, of course, all pending trials. We're asked to reserve judgement on their guilt, although this is something we surely were not encouraged to do in regards to their allegations against Judy Mikovits. And suing Judy Mikovits is about self-preservation, not about patients. If WPI was truly concerned about patients, they would never have fired Judy Mikovits. They would have understood why patients were donating in the first place. They donated to Judy’s work. It borders on pure narcissism to be so out of touch with patient community feelings as to think firing Judy Mikovits would not directly result in withdraw of financial support. And the amount asked for in damages is the definition of extortion.

“The Whittemore Peterson Institute is apparently attempting to sue Dr. Judy Mikovits for ‘all costs associated with her work’, according to today’s article at RGJ.com, including every dime of her salary since she started working there, all of her research costs while working for the Institute, and, crazily, for the $133,100 drop in donations after Mikovits left.” (CFS Untied – blog)

So, they want her full salary back? A salary probably paid for by the Seenos in the first place through Wingfield? In order to hand it over to the Seenos who are suing them for the money back? Takes a lot of chutzpah and a lot of buddies in the legal system to believe you could make those claims against a wrongfully terminated employee and actually receive the requested damages. And then to claim that patients have been swayed by Judy Mikovits to stop donating is ludicrous and insulting. As though we are not intelligent enough to make up our own minds based on what we see publicly. Dr. Deckoff-Jones exposed personal communications and threats sent to her from WPI. One patient left a comment that sums up what many former supporters of the WPI are feeling.

Polly – “The only reason that the whittemores are not recieving donations is the appalling way they have treated patients since all this blew up in sept . This has nothing to do with Judy that donations have stopped . Ask anyone in the ME community why they have stopped donating and I bet they al say the same .Many people have infact tried to get their donations back as they feel they were not used for the purpose intended . Very sick patients donated a lot of money much coming from the UK and Europe as all they wanted was to further the research and hopefully get some treatment out of it . Now patients are distraught , angry and feel like they have been sold up the river by the whittemores . I urge the whittemores to drop this case against Judy who has only ever tried to help patients . This case is causing huge distress and damage to the ME community who merely want the science to continue and a stab at normal life again before its too late . So my message to the Whittemores stop blaming Judy for the sudden stop in donations Judy has nothing to do with that . Patients can think for themselves , would you continue to donate money when it was highly unlikely you would ever see any benefit from it ? Only a fool would .” X-RX.net

Jekyll and Hyde

As most people, I have my list of faults. You will not find disloyalty to friends among them though. So, the last year has been a difficult one for me, the last few months even more so. I tried in every way to merge the people I knew in Reno with the people who could fire Judy, sue her, be accused of embezzlement from mafia moguls, be in business in the first place with mafia moguls, accused of funneling illegal campaign contributions (Las Vegas Review Journal), (more in one day for Harry Reid than ever recorded), and then threaten patients by lurking online or sending emails to intimidate them for speaking their minds. What CEO of any organization does that sort of thing with disgruntled customers? With friends like that, I don’t need enemies. These people are not our friends, unfortunately. They have families too, of course. There are innocents involved, of course. And they do normal daily activities that would also make you feel there is good there. That humanity is not totally lost in that family. But, it reminds me of the story of Jekyll and Hyde. The overarching theme in many ways is how you can lose your soul to the evil side of your nature, that without proper maintenance of your integrity, you will metamorphosize permanently into the worst of who you can be.

Summary of the end of Dr. Jekyll and Mr. Hyde:

The letter continues describing Jekyll’s cry for help. Far from his laboratory and hunted by the police as a murderer, Hyde needed Lanyon’s help to get his potions and become Jekyll again—but when he undertook the transformation in Lanyon’s presence, the shock of the sight instigated Lanyon’s deterioration and death. Meanwhile, Jekyll returned to his home, only to find himself ever more helpless and trapped as the transformations increased in frequency and necessitated even larger doses of potion in order to reverse themselves. It was the onset of one of these spontaneous metamorphoses that caused Jekyll to slam his laboratory window shut in the middle of his conversation with Enfield and Utterson. Eventually, the potion began to run out, and Jekyll was unable to find a key ingredient to make more. His ability to change back from Hyde into Jekyll slowly vanished. Jekyll writes that even as he composes his letter he knows that he will soon become Hyde permanently, and he wonders if Hyde will face execution for his crimes or choose to kill himself. Jekyll notes that, in any case, the end of his letter marks the end of the life of Dr. Jekyll. With these words, both the document and the novel come to a close.

It was with great sadness at first that I distanced myself from WPI and everyone there. Then it became anger for the reverberations felt throughout the patient community after Judy Mikovits was wrongfully terminated. Past the anger though is just shock at times that this never ends. That patients continued to be harassed regarding lost donations. That they continue libeling Judy by saying she tainted the integrity of the WPI. What a load of crap that is. The place would have had no notoriety without her discovery. That there is no concern over a lost UK blood sample. That NIH and DOD grants were handed over to a researcher lacking expertise in this field and who has never won a grant on his own accord. That grants were handed over to an institute president under investigation. That the Seenos feel comfortable enough exposing Whittemore crimes to take them to court. That a grand jury may indict the Whittemores on felony charges for illegal campaign contributions today. What next?

I think the metamorphosis is almost complete.

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Vote of No Confidence 02/08/2012

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Vote of No Confidence

In the fall of 2006, as I scanned for information on ME/CFS research, I stumbled on a burgeoning institute called the Whittemore Peterson Institute. The institute was to be housed at the University of Nevada at Reno medical campus as part of their efforts to create the Center for Molecular Medicine. The WPI would take over the second and third floors of a building attached to the CMM. It would offer a translational clinic, an onsite lab, quality scientific research, and was backed by both state and private funding. On my second visit to their web site, I saw a biography of Dr. Judy Mikovits as their new Research Director. Her links to the NCI and ample publications were impressive, yet confusing. Cancer? What did this have to do with CFS? (I had just started more serious research into CFS after wifi and a laptop offered the online world to me from bed. I had a lot to learn.)

Still, the idea of a center of excellence for ME/CFS excited me. I began calling it my CFS Mecca. At that time, I was reeling from a bad relapse that left me in severe pain, mostly in bed, or on the couch, PEM after even a few minutes of caring for my then 2 year-old triplets, and paying our part-time babysitter overtime to take on extra hours. I had already missed out on too many “firsts” with my kids, like their first sled ride that winter. I had been sick since November of 1995 and pushed to have as normal a life as possible. As a moderately severe case with occasional semi-remission from my worst symptoms, I was lucky to be able to do so. But, pushing to have children was one step too much for what my body could tolerate. Motherhood, age and lack of any noteworthy basic medical care despite seeing several doctors, left me desperate for a solution. As any patient with an invisible, incurable disease knows, desperation can blind even the most pessimistic of patients. It is my opinion that anyone knowingly preying on patient desperation should be promptly shot on the spot.

For the next three years I would occasionally Google to see if the institute would get off the ground. It seemed stalled at points. Not enough private funding. The Whittemores were to come up with $5 million privately. In 2008, I saw an advertisement for their fundraising gala. I told my mother some day I would like to go to one. I tried to plan for the 2009 event, but was too sick and broke to attend. In October of 2009, the Science paper burst on the scene with a bang. As I told David Tuller of the New York Times, I said out loud, “BINGO! This is it.” To me, a low-level retrovirus made sense and how wonderful that it came from an institute that was working so hard for us, who understood the severity of the disease through their daughter’s struggles. I offered up my help in any way I could through their FB page. I worked hard with others to promote WPI to friends and family. Fundraised through joint FB efforts. Sent small donations as our budget would allow. Advocacy became easier with a single-minded goal to help Judy Mikovits and her team continue their scientific research and for WPI to open a translational clinic that would provide effective treatment. I would say hindsight is 20/20, but the details are still blurry as to what happened to the dream we all shared. One thing is very clear to me though. I do not have confidence that WPI is running their business in a professional, responsible manner. I vote no confidence in the Whittemores, and in turn, no confidence in their assessment of Vince Lombardi’s abilities.

NIH RENAMES PRINCIPAL INVESTIGATOR ON WPI GRANT AS VINCE LOMBARDI

What do we know about Vince Lombardi? For the most part, he has remained quiet and uninvolved in patient affairs. An article in Science Magazine focused on his late entry into science and his business experience.

Vincent Lombardi, who would soon play a prominent role in the XMRV saga, co-founded the new lab [RedLabs] and served as its director of operations. …Lombardi was a late bloomer in science. In 1990, while he worked as a securities trader in Lake Tahoe, he decided to pursue an under-graduate degree at a local school. As part of a biostatistics class, he worked with Peterson, analyzing immune parameters of CFS patients. After his graduation in 1995, he ran investment companies and also worked as a marketing director for a pawnbroker business. He went on to pursue a Ph.D., first studying RNase L but switching to peptides in the tobacco hornworm, which he completed at the University of Nevada, Reno, 2 years after starting RedLabs USA. Science Mag

His integrity, commitment to patient welfare, and his ability to bring strong collaborators to the ME/CFS arena has yet to be seen. His CV is unremarkable, but apparently adequate enough for the NIH coordinator, Christopher Beisel, to feel comfortable handing over $300K a year to him. This is his first chance to work as a Principal Investigator on any project. So far, he has been unable to secure a grant on his own according to the NIH Project Reporter. Since, for now at least, this grant has fallen into his incredibly fortunate lap, I would like to know exactly what Vince Lombardi has planned for this grant. I feel it is fair for patients who gave their time, health, money and blood to WPI research to request that the study design(s) be spelled out for us more clearly, especially since WPI seems to no longer support a retroviral etiology. If retroviruses will not be pursued, then what viruses, genetic factors or biomarkers will be pursued in the long list of items mentioned in the grant abstract? Ask Vince Lombardi and see if he responds. vclombardi@gmail.com. This is after all, tax payer money.

(Update: 2/9/12 - Science Insider reports that Lombardi will work on Aim 2 of the grant which includes genetic susceptibility and immune dysregulation.)

Even if Lombardi was a brilliant scientist, I have too many reservations at this point regarding the business aspect of WPI to continue my involvement with them in any way. For months I had heard whispers from friends who visited Reno, or had read news articles from Nevada, of the Whittemores' connection to “the mob”. I shrugged making the excuse that many wealthy politicians would be suspect of that, but it didn’t make it so. But, it turns out selling your soul to the devil is still an option. Faust would be proud.

WHITTEMORES VS SEENOS

The most recent news of the Whittemores finds them at odds with Harvey’s business partners, the Seeno brothers. Talk about being blinded by desperation. How could it have escaped my attention that Harvey Whittemore was in business with a billionaire group from California known for organized crime and part of an ongoing investigation by the FBI since 2010? The Seenos are suing both Harvey and Annette Whittemore for embezzling money from the Wingfield group, where supposedly the Seenos invested $44 million to save the crumbling business after Harvey went “broke” in 2008. But, Harvey had a history with the Seenos years before the Wingfield group. Jill Lufrano of the Daily Sparks Tribune writes that “In early 2004, the Whittemores sold half of their ownership interest in various companies, including Argus Media, Inc., Wild West Sound Company, Inc., Redlabs U.S.A., Inc., Dr. Pepper/7-Up Bottling Company of the West, Coyote Springs Water Corporation and Coyote Springs Land Development corporation to Thomas Seeno’s Company, TNSS, LLC.” Daily Sparks Tribune

The Whittemores countersued the Seenos claiming they are mafia-related, sent a burly guy named Ray to reclaim property directly from their home as well as cash from a safe, and threatened bodily harm to them. Through their lawyer they wrote, ‘“These allegations are false. We will take any and all steps necessary to preserve the reputation for integrity that we have built in this state for over 40 years.”’ Daily Sparks Tribune I hate to think of any of my friends, current or former, being threatened in this way. But, perhaps being a rich lobbyist/politician/lawyer precludes a person from understanding what integrity is in the first place. Integrity to me would mean choosing one’s business partners much more carefully than selling half of your assets to a long established organized crime family. There can be no claim of naivite on Harvey Whittemore’s part either in my opinion. As Francis McCabe points out “Whittemore once was considered the most powerful legislative lobbyist in Nevada and one of the nation's top gaming attorneys. He represented the Nevada Resort Association, an organization of the state's top casinos, individual casinos and 100 businesses. He had worked as managing partner for Lionel, Sawyer and Collins' Reno office for many years. He now operates a small law office in Reno.” Las Vegas Review Journal

How could a grant be handed over to people willing to be involved with the Seenos? And how can patients ever again trust that they are handling money honestly? It is a clear waste of tax payer money to hand over $300K to the Whittemores. I have withdrawn my consent to be involved in any study at WPI (see below) in large part because of the enlightening news of the Whittemores' involvement with the Seenos, but also because I do not like to be part of a brand new PI’s project. I tend to hate teaching hospitals as well. I like experience. I will also write to Dr. Beisel and his superior to request reconsideration based on the current legal scandal. I was considering writing to Chase Giving and Vivant as well, but I have a hard time lately finding anyone willing to support WPI fundraising anyway. In fact, it seems all support, even among doctors initially interested, has been partially lost at WPI.

MUSICAL CHAIRS

At one point, there was ample interest among doctors and advocates in WPI. During this time, permission was given for their support and roles in the institute to be published on their site. However, at this time, to my knowledge, many of those doctors you see listed, as well as a couple staff, are MIA. I find it unethical to continue using their names when they have no involvement in the institute at all. But, titles and names are how things are run.

One of the worst missteps was giving Vince Lombardi the title of 'Clinical Lab Director'. The terms 'laboratory director' and 'clinical director' are not interchangeable from a regulatory point of view. The regulatory term is 'laboratory director'. 'Clinical Lab Director' is a cross between these two titles, although it might have occurred as a way to differentiate between the research and clinical labs. The laboratory director of VIPdx is, and has been, Sanford Barsky. His name is on every record I have for lab results from VIPdx since 2010. He electronically signed off on each one.

In November 2011, an acquaintance began correspondence with the Nevada State Health Division regarding VIPdx and UNEVX's HGRV/XMRV tests. In the course of this correspondence, it was confirmed by Vickie Estes (Supervisor for the Medical Laboratory Services for the Bureau of Health Care Quality and Compliance) that “Unevyx is not licensed to perform XMRV testing to date. Dr. Vincent Lombardi is not now nor has ever been serving as the laboratory director for VIP.” Once Vickie Estes knew of this innacuracy, she contacted VIPdx who, subsequently, removed Lombardi's statement about the validity of XMRV tests (written in his capacity as Clinical Lab Director) and, later, took down the site altogether.

It may have been a minor oversight for Annette to create an inappropriate title, but for me, it is another instance of serious neglect to protocol. The search for the real laboratory director lead to some questions about Sanford Barsky, MD. Turns out he has had his own issues with scandals.

During his tenure at Ohio State Medical Center as Chair of Pathology, Dr. Gerard Nuovo informed him that up to 30% of female patients were receiving surgeries at OSMC based on misinterpreted Pap smear tests. They were told they had HPV. For his efforts, Dr. Nuovo was removed from his position and replaced with a junior pathologist by Barsky. (Read the full article here) Not only did Barsky allow continued surgeries and misinterpreted Pap smears to continue, he was accused of scientific fraud. Bob Fitrakis of Freepress writes, “At question is whether Barsky submitted research data that was passed off as new that had been duplicated and doctored from his own previous publications.” Freepress.org (see video at the end of this link for details regarding recycled images by Barsky – video is very fast) Despite repeatedly informing his superiors of unnecessary surgical procedures and possible scientific fraud with federal money, the whistleblower, Nuovo, was fired for bringing "frivolous charges" against Barsky after Barsky had already moved to his new home as the Chair of the Pathology Department at the University of Nevada and Nevada Cancer Institute’s Chief of Pathology.

One of his responsibilities is to oversee the WPI lab. As laboratory director of VIP/UNEVX, it would be his responsibility to make sure all testing is accurate and ethical. Where has he been? Vince Lombardi was the only one defending his work on the HGRV serology test. The more I learned, the more I became uncomfortable with every facet of WPI and the University of Nevada's involvement with them.

Patient Support

Patient support had been declining for some time for WPI. The number one reason I heard from patients over the last 18 months was lack of communication by Annette Whittemore and poor office management at the front desk. Globally, patients, doctors and interested parties wrote in to the info@wpinstitute.org email looking for information. I know of one doctor who was ignored on a regular basis despite trying in every way to get an answer back from Annette Whittemore, including phone calls and having her personal email address. I had patient advocates come to me assuming the WPI Patient Advocate of the Year would be able to help them get in contact with Annette regarding what they felt were important issues, but I had to tell them my emails were rarely replied to as well and any forwarding of their messages became useless. I told them what I was repeatedly told. Annette was too swamped by daily institute responsibilities to respond to all the thousands of emails she was receiving. My heart went out to her. It’s not an easy task. It’s a nightmare. However, after a point, I realized that not having any organized way to address the email overflow was just the tip of the iceberg when it came to the institute’s overall disorganization. There was an excuse for everything that was making patients impatient. At a certain point, business is business, and excuses are not acceptable. But, it seemed everything was put on the back burner, patient communication most of all.

Despite this, most patients continued fundraising in support of the research. Their lives still rested on the hope they placed in Judy Mikovits. Judy’s name became synonymous with hope because we all knew the answer to our prayers was in the science. The clinic had yet to open well past the timeline promised. Patient concerns were left unaddressed and the government scientists were poised to slam the door shut on retroviral studies. Patient hope hung by a thread the summer of 2011. Then Judy Mikovits was fired, sued and thrown into jail. The remaining patient support that I was aware of was lost at that point, not because we lost confidence in Judy because of the accusations, but because we consider this a wrongful firing, resulting in lack of scientific expertise at WPI. My wish would have been that a third party negotiator might have been brought in to settle any disputes. I would have donated another amount just to fund that.

As I see it, even if I could overlook the WPI connection with the Seenos, there is nothing left for me at WPI. The scientist I trusted is gone, and the clinic was not opened in the planned capacity. Instead of a WPI-run translational clinic, which was apparently "too costly" to create, they chose to move the Sierra Medical Group into the building with Dr. Cyrus Pourzan who among other interests claims to be able to resolve autoimmune and viral issues and cure allergies and chronic sinusitis. Dr. Pourzan may be a good doctor and perhaps even helpful for some patients. However, I steer clear of any doctor who would tell me he is able to resolve autoimmune issues. I’ve heard too many promises from ME/CFS doctors around the world who feel they have the answers, yet a quick inventory of how many patients have been “cured” or even significantly helped is quite low. The other option is Dr. Fredericks, an endocrinologist who was not treating ME/CFS patients prior to joining WPI. While that is not a big strike against him, I have an excellent endocrinologist and don’t need another one.

Moving On

As mentioned previously, I have withdrawn my consent to have any blood tested at WPI. If you would like to do the same and are currently part of WPI research, I have attached links, my letter, and the response from WPI below. Included is a link to a blog from a friend and patient involved in the UK study. When she asked to withdraw her consent, she was informed that the consent and blood were missing. Her experience in resolving this issue has been less than satisfactory.

It’s time to move on, hopefully, a little wiser and more cautious next time around. I don’t regret my enthusiasm or support. I could only go on what I knew at the time. But despite the threat of lawyers reading this blog, or possible harassment by email or text asking how I could betray them, I find it is time to cut loose and fly free. I was bound too long by my need to see WPI succeed despite my reservations. I simply held my breath and hoped we wouldn’t crash. I have to say at this point, I’m glad airbags were invented because this has been one insane ride.

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“The WPI Loses Blood and Consent Form by Chris Douglas”

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*This letter is taken in part from a fellow patient’s email. She used an example from ME/CFS Forums.

Dear Ms. Jones,

As a participant in the NIH study at the Whittemore Peterson Institute, I am requesting to be removed from the NEW STRATEGIES TO DECIPHER THE PATHOPHYSIOLOGY OF CHRONIC FATIGUE SYNDROME research grant studies. The consent form I signed states I may remove myself at any time and I am choosing to do so now. Please destroy all data and samples that would identify me as a participant to assure my privacy will be protected. Please send a receipt "reply all" e-mail that you have received this notification and that all actions of removing my information, data and samples have been destroyed.

In addition, any consents signed by Heidi Bauer for VIP/UNEVX testing that might indicate permission for research on those samples is hereby withdrawn as well. All samples in any part of WPI are to be destroyed. No results from any testing done previous to this letter are permitted for use in any publication.

Thank you.

Heidi Bauer

Christopher Beisel – grant coordinator cbeisel@niaid.nih.gov
Nancy Moody – U of Nevada IRB contact - nmoody@unr.edu
Kellen Jones-Monick – Office Manger/Study Coordinator – kjones@wpinstitute.org

Reply:

Dear Ms. Bauer,

Whittemore Peterson Institute (“WPI”) is in receipt of your email dated February 6, 2012. WPI confirms your withdrawal from the study entitled New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome. Your blood sample will be destroyed, but your consent document cannot be destroyed because it is a study record that must be maintained for grant and regulatory purposes. WPI will continue to protect your privacy and confidentiality according to the approved protocol for the study.

Best regards,

Kellen Jones
Study Coordinator

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First Post! 01/09/2012

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Heidi Bauer

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