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I began comparing Judy Mikovits to Joan of Arc.
The scientists will burn her at the stake, but her
faithful following will have her canonized.
âDr. John Coffin[1}
Friday, November 18, 2011
âIs Dr. Judy home? Iâm Jamie. Iâm a patient and she knows me very well. Sheâll remember me. She said to come by any time.â
Thatâs odd, Mikovits thought. Patients rarely showed up at her door. The only Jamie she could think of was miles across the ocean in Hawaii, hardly a place one comes from unannounced. âThatâs okay, David. Iâll take it,â she said. She swept past her husband, giving him a quick glance to indicate everything was okay as she walked to the door of her southern California beach bungalow.
Judy often wondered what David must think of her crazy life. Did he know he was signing up for a roller coaster ride when they married? She might be the world-famous rock-star scientist, but he was the rock. As a teenager growing up in Philadelphia, Judyâs husband David Nolde had danced on Dick Clarkâs American Bandstand to musicians such as Sam Cooke, Neil Sedaka, and the Everly Brothers. In his professional life he had been a personnel manager for various hospitals. He was the kind of man who was good at listening, understanding people, and defusing tense situations. She was often called the brilliant one, but it was David who understood what others tried to keep hidden.
The woman standing at the door was tall and dark-haired, dressed in black. âHi, Dr. Judy,â the woman said. âDo you remember me?â
Judy Mikovits had her PhD in biochemistry and molecular biology from George Washington University and was an AIDS and cancer researcher of more than thirty years, but people often said she had a second careerâa calling, in the language of her strong Christian faithâas a patient advocate. Over the years she had run volunteer cancer support groups and would often research and review treatment options for people and accompany them on doctor visits. Most people were terrified to be suddenly thrown into the medical system and were reassured by having someone along who understood the science. She also found that the majority of doctors welcomed the opinion of a researcher as they often complained that they didnât have time to keep current with the latest research.
Most people she helped referred to themselves as her âpatientsâ even though she was not a treating physician. In the past few years she had moved from cancer research into a high-profile investigation of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), taking the position of research director at the start-up Whittemore Peterson Institute for Neuro-Immune Disease (WPI), housed at the University of Nevada, Reno (UNR) campus. Mikovits developed the entire research program that culminated in an article in 2009 in the highly prestigious research journal, Science ̧ showing an association between a newly discovered human retrovirus, XMRV (xenotropic murine leukemia virus-related virus) and ME/CFS.[2] There had been a partial retraction of the work a month earlier,[3] but for many reasons Mikovits still believed the theory was sound and needed rigorous validation.
Over the past five years Mikovits had counseled ME/CFS patients in much the same manner as she had counseled cancer patients and felt she could tell pretty quickly if a person was suffering from the disorder. Patients were often unnaturally pale, sometimes too thin or overweight in a sickly way, and there was something about the eyes that looked different. She understood that calling what these patients suffered from âfatigueâ was like calling the atomic bomb dropped on Hiroshima âfireworks.â Over a spectrum of severity, many of the most severely affected spent twenty-three hours a day in bed with the shades drawn because of their utter weakness and light sensitivity. Many of the patients had been active, vital people before their affliction struck, with a good number engaging regularly in rigorous athletic pursuits, like running marathons or long-distance cycling. eir physical breakdown was often looked upon by doctors as some sort of unconscious psychological disorder, as if these people who lived life to the fullest had simply decided that life was no longer worth the trouble.
But the disease was without mercy, lasting for decades and taking decades from patientsâ expected lifetimes. The former chief of Viral Diseases for the Centers for Disease Control and Prevention (CDC) claimed the level of disability of many of these patients was similar to terminal AIDS patients and those in end-stage renal failure, so patient comparisons to a âliving deathâ were apt.[4] But the years generally did not bring death, although an unusual number of patients developed rare types of cancers, salivary gland tumors or B-cell lymphomas. This fact more than any other is what drew the former cancer and AIDS researcher toward this research. Why would years of a fatiguing illness result in an elevated rate of rare types of cancer? She felt there were some intriguing avenues to explore.
Yes, Judy Mikovits had learned a great deal about ME/CFS in the past ve years. Judy stared at the woman in her doorway and felt a sudden chill. She was certain the woman didnât have the disease and that she wasnât a patient she had ever seen before. âI donât know you,â Mikovits said to the woman and began to push the door shut.
* * *
Regan Harris first got to know Mikovits when she called the WPI in December of 2009, after reading the Science article.[5] Regan was surprised and flustered to suddenly be speaking to an internationally recognized scientist, but Mikovits quickly put her at ease and asked Regan to share her story. With a deep breath, Regan began by telling Mikovits she had become sick in October of 1989, at the age of fourteen after a bout of mononucleosis. The following year she had been diagnosed with ME/CFS and from that point on, life had been a roller coaster ride.
Despite her ME/CFS, Regan had been able to graduate high school and had attended college where she received a bachelorâs degree in psychology. While getting her degree, Regan researched the issue of suicide among the ME/CFS population and how these patients presented with a different psychological profile than people with depression. Reganâs work eventually culminated in a poster presentation before a meeting of the American Psychology Society in 1998. After listening to Reganâs tale, Mikovits told her about an ongoing research study and asked if she would like to participate. âI can never give you back the years of your childhood that were stolen from you,â said Mikovits, âbut I think we can prevent this from happening to other kids. Will you help me take this thing down forever?â
Galvanized by Mikovitsâs confidence, Regan signed the forms and went to the grand opening of the $77 million WPI and Center for Molecular Medicine at the University of Nevada, Reno in August of 2010. There she met Annette and Harvey Whittemore and their daughter Andrea, who had also been struck with ME/CFS from a young age. Regan couldnât wait to make her own contribution to this effort.
Regan moved to Nevada in September of 2010. She planned on volunteering for the WPI, hoping it would lead to a paying job. Judy and David were warm and welcoming, often taking Regan out to sample the local cuisine. When Regan first arrived, David spent some time driving her around Lake Tahoe, eventually shuttling her to Glenbrook, the exclusive gated lakefront neighborhood where the Whittemores had one of their many residences. When David approached the gatekeeper at Glenbrook the large gates opened as he said, âWhittemore.â
When they got to the Whittemore home, a historical residence known as the Lakeshore House, complete with its own private dock, David motioned with a hand and said, âWhat do you do when your family is too big to fit in one house? You buy the one next door as well!â The Whittemores owned two houses on Lake Tahoe. When Regan flew home to Massachusetts that Christmas, she couldnât wait to tell her mother all about her run-in with the Nevada royalty. Regan gushed about the wealth and influence of the Whittemores, noting, âMy God! Theyâve even got a movie theater in their house. You would not believe this, Mom! Can you imagine what itâs gonna be like if I can work for them? It would be so cool.â
Reganâs excitement was not fully celebrated by her New England mother, who said, âRegan, I never want you to be seduced by money and power. You remember one thing: anybody who is powerful enough to give you everything is also powerful enough to take it all away.â
* * *
Mikovits had almost latched the door when she heard a male voice shouting, âHold on there!â A man, identifying himself as University of Nevada, Reno campus security, stepped out from behind one of the large bushes in her yard and strode quickly to the door. Dr. Mikovits knew this manâhe had investigated the robberies that had taken place at the WPI when she had been the research director. Where she had been research director.
That was in the past now. On September 29, 2011, she was fired, receiving the dismissal call on her cell phone from Annette Whittemore, president of the WPI, as she walked home. While the experience of being red could shake anybody, how many could claim the news had been reported in the pages of the Wall Street Journal?[6] The article by the well-respected journalist Amy Dockser Marcus in her Health Blog section of the Wall Street Journal had given a fair account of her firing:
Whittemore told the Health Blog that she and Mikovits were not âseeing eye-to-eyeâ on who controlled the cells. Research on retroviruses and their possible connection to CFS as well as other diseases continues, she said.âWe will keep going down that path as long as it continues to show promise,â Whittemore says.
Annette Whittemoreâs given reasons for fi ring Mikovits would change several times over the ensuing months, but she detailed them in a letter sent to Dr. Mikovits on September 30, 2011, which among other things accused Dr. Mikovits of âinsubordinationâ.[7]
On October 1, 2011, Dr. Mikovits sent a response to Annette Whittemore addressing the event that had ostensibly caused her firing as well as more concerns she had about the management of the WPI. Mikovits told Annette that as the principal investigator on the National Institutes of Health (NIH) R01 grant, Mikovits alone was legally responsible for all resources on that grant and that Mikovits alone was the one who should have decided the appropriate allocation of those resources.
Mikovits was pleased that Annette hoped for âa smooth transitionâ regarding Mikovitsâs departure. However, as Mikovits was the principal investigator on three grants housed at the WPI, two from the NIH and one from the Department of Defense (DOD), she told Whittemore that she fully intended to continue her research on those same grants, but at another institutionâonce one was found. This is common practice in the scientific community; the principal investigator takes the grants with her if she leaves the institution.[8]
Her break six weeks earlier with the Whittemores had been sudden, but Mikovits was eager to move forward with her life and research. The next day, she was scheduled to fly out to New York City to participate in the celebration of a multi-million dollar ME/CFS initiative to be run by ME/CFS physician Dr. Derek Enlander of Mount Sinai Hospital. Mikovits and Enlander were also scheduled to discuss ways in which they might collaborate after her departure from the WPI. But she would never make that trip.
* * *
A thud at her feet made Dr. Mikovits look down. She realized the woman had dropped a microphone and a recording device. âThatâs illegal here,â said Mikovits. âYou canât record me without my permission.â
âWeâre just here to get your side of the story,â replied the woman as she picked up the fallen items.
âFine then. You can come with me to my lawyerâs office. Iâm on my way to meet him.â Mikovits again tried to close the door when three burly Ventura County sheriffâs deputies came around from the driveway. One of the deputies was brandishing a yellow piece of paper. âWe have a search warrant.â
The deputies came onto the landing, pushed the door open, and proceeded to enter the house, pushing Mikovitsâs husband along with them. âDavid,â she called out. âCall the lawyer!â
Just that morning she had called her attorneyâs office to ask if there were any warrants out for her arrest. On November 4, the WPI had filed a civil case against her, claiming she left with intellectual property, specifically her notebooks and computer files. As a principal investigator on three government grants, Mikovits knew she was legally required to maintain and protect copies of all data under federal regulations and her UNR contract as an adjunct professor.
In addition, since her research was being challenged by the scientific community, she needed to possess this information to defend the work. The attorney had found her trepidation humorous and said he didnât see anything that serious arising out of the civil case. Just to calm her, he had checked. There were no arrest warrants.
But Mikovits still sensed something terrible afoot. She believed she had caused her former employers considerable distress. Viral Immune Pathology Diagnostic (VIP Dx)âa for-profit clinical lab loosely associated with the WPI and owned by the Whittemores and Lombardiâwas selling an unvalidated diagnostic test for the XMRV retrovirus, one which they would later discontinue selling. They claimed that she had approved VIP Dxâs tests, including a new serological one announced under her name, when she was not employed by VIP Dx and had not evaluated data or statements made by the clinical lab.[9]
Mikovits believed she had cut off a lucrative source of revenue for the WPI when she had vocalized all of this on September 23, 2011, at the Ottawa Conference, saying âVIP Dx lab will not continue XMRV testing because it hasnât been shown to be reproducible in the Blood Working Group [BWG].â[10]
She was fired one week later.
Others were already concluding the test was problematic after the release of the report from the BWG, the group founded to investigate whether the retrovirus posed a threat to the blood supply.[11]
Next came the replication study coordinated by Dr. Ian Lipkin of Columbia, one of the worldâs most famous virologists. A few days after Mikovits was fired, Lipkin had called to ask if she had confidence in the integrity of her former employers, the Whittemores, to allow her to perform the study in Reno.[12]
Mikovits told Lipkin that she did not have confidence that the study could be performed at the WPI. It was not until November 14, 2011, that Lipkin emailed Mikovits saying he had decided not to have the WPI participate in the study, a decision which would potentially cost the institute a great deal of money.[13]
Despite these financial hardships to the Whittemores, Mikovits believed she was acting the only way she knew howâas an ethical scientist.
The woman in black took Mikovits by the arm and motioned for her to come out onto the porch. âWe just want to hear your side of the story,â the woman repeated. âDo you have any WPI property?â
âI do not,â Dr. Mikovits answered. âEverything in this house is mine.â
She knew what they were looking for. The research notebooks. The notebooks which she feared would have ended up on the bottom of Lake Tahoe, been altered, or otherwise kept from public view had she not secured them.
The open access to research, especially research funded by the government was the property of all. She didnât have the notebooks, didnât even know where they were, but she knew they were safe. She believed that her assistant, Max Pfost, had secured them. Whatever she had discovered, or the mistakes she had made, the evidence would be there for all the world to see.
âDo you have a black laptop?â the woman in black asked.
âYes, itâs sitting right on the table, but itâs mine. It was a gift.â
âFrom whom?â
âAnnette Whittemore.â
* * *
Mikovits remembered the extravagant 2007 Christmas party, the first WPI Christmas party, when Annette had presented her with the black laptop, a back-up disk drive, and a printer.[14] The only stipulation Annette put on her present was that Mikovits had to promise to back up the hard drive on the disk drive that stayed at the lab. us, as Mikovits understood it, there should be two copies of all data, one for the principal investigator, Mikovits, and one backed up on the drive at the lab. Annette even gave Mikovits the receipt for the computer in case there were any problems.
The Whittemores were political contributors to US Senator Harry Reid, a Democrat and the majority leader of the Senate, as well as many other politicians.[15] All four of Harry Reidâs sons had at one time worked for the law firm where Harvey Whittemore was a senior partner.[16] In addition, Harvey Whittemore had personally helped advance the legal careers of two of Reidâs sonsâand one of the sons, Leif Reid, had become Whittemoreâs personal lawyer.[17]
In a 2006 article in the Los Angeles Times, Harvey Whittemore is quoted as saying, âYou have to understand how close the Whittemore and Reid families are . . . My relationship with Sen. Reid goes back decades.â[18]
Harvey Whittemore was often identified as one of the most politically influential individuals in the state of Nevada, earning nicknames such as âthe 64th legislatorâ for his help in drafting the stateâs first business tax and being among a select group of four wealthy men known as the âPower Rangers,â[19] after the popular Saturday morning childrenâs show. One reporter of Nevada state politics had quipped, âGovernors come and go, but the Power Rangers stay the same.â[20] Ominously, one of Harvey former associates said âHarvey Whittemore has a different moral compass than the rest of us.â[21]
One of the Whittemoresâ children, their daughter Andrea, had been struck down with ME/CFS when she was just eleven years old. Her parents were tireless in trying to find a cure for her, and through the work of Mikovits and others, Andreaânow in her thirtiesâwas close to recovering her health. This personal connection to the disease made Mikovits believe that she and the Whittemores would always be on the same side.
* * *
The case brought by the WPI against Mikovits was an unusual one, according to her civil attorney, Dennis Neil Jones. âe complaint alleges what I guess you could call industrial espionage. And the defense is basically a whistleblower kind of defense.â[22]
It was much different than the typical cases Jones handled. Both Jones and Mikovitsâs bankruptcy attorney, David Follin, would be disturbed, however, by the legal maneuverings deployed against Mikovits. As attorneys, they understood the combativeness of the judicial system, but also knew there were rules and an expected logical progression of events.
But this case seemed very different from the start, in both the legal aspects, and the response of the scientific community. âIt seems like the eld was stacked against Judy and itâs continued to be so. Any allegations she was convicted of a crime or [that] there was a successful judgment against her, is wrong,â said Follin.[23] âJudy is just an amazing person. Sheâs probably one of the most brilliant people Iâve ever met. All Judy wants is fairness and I canât understand how her profession can turn its back on such a talented individual who has so much to offer and could help so many people.â[24]
* * *
When Mikovits thought about it later, she realized the problems had actually started soon after Mikovits and Annette Whittemore first appeared on a TV show in 2009 called Nevada Newsmakers,[25] shortly after the publication of the landmark article in Science linking a new human retrovirus to ME/CFS.
Mikovits and her team found evidence of the retrovirus in 68 out of 101 patients (67 percent) with CFS as compared to 8 out of 218 (3.7 percent) of healthy controls.[26] As if werenât enough that they were taking on a disease which had been looked upon for more than thirty years as some form of female âhysteria,â they were now planning to take on one of modern medicineâs most controversial disease: autism.
âItâs not in the paper and itâs not reported,â Mikovits said, speaking hesitantly at first, âbut weâve actually done some of these studies, and we found the virus present in a number, in a significant number of autistic samples that weâve tested so far.â
The showâs host noted that this news had tremendous potential for the autism community, holding out the possibility that this might lead to treatments or even a cure. Mikovits replied by saying XMRV might be âlinked to a number of neuro-immune diseases, including autism. It certainly wonât be all because there are genetic defects that result in autism, but there are also the environmental effects.â
Then, barely taking a breath, she crossed the Rubicon.
âThereâs always the hypothesis that my child was fine, then they got sick, and then they got autism. Interestingly, on that note, if I might speculate a little bit . . . This might explain why vaccines lead to autism in some children because these viruses live and divide and grow in the lymphocytes, the immune response cells, the B and T cells. So when you give a vaccine, you send your B and T cells in your immune cells into overdrive. atâs its job. Well, if youâre harboring one virus, and you replicate it a whole bunch, youâve now broken the balance between the immune response and the virus. So you could have had the underlying virus and then amplified it with that vaccine and then set off the disease, such that your immune system could no longer control other infections and created an immune deficiency.â
If these children were harboring a retrovirus it wasnât an outlandish claim to make. It has long been established that children born to HIV-infected mothers shouldnât be immunized until theyâre on antiretroviral drugs and their tests show the virus to be at extremely low levels. As explained at the University of California at San Francisco web page on HIV and immunizations,
Activation of the cellular immune system is important in the pathogenesis of HIV disease, and that fact has given rise to concerns that the activation of the immune system through vaccinations might accelerate the progression of HIV disease . . . These observations suggest that activation of the immune system through vaccinations could accelerate the progression of HIV disease through enhanced replication . . . If feasible, it is preferable to have patients on antiretroviral therapy (ART) prior to receipt of vaccination . . . [27]
Just as one wouldnât want an immunization to provoke AIDS in an HIV-positive child, one would also want to be sure a vaccination didnât trigger autism. Mikovits and Annette Whittemore had both grabbed onto the third rail of western science, the question of vaccine injury and the increasing numbers of children with neuro-developmental problems. The scientific community, often choosing comfortable-yet-unproven dogma over testing controversial ideas, made the funding of routine grant proposals even more difficult after the interview.Â
* * *Â
The saga of Harvey Whittemoreâs Coyote Springs development had started in 1998 when he purchased 43,000 acres of remote Nevada desert about an hour northeast of Las Vegas. The dry landscape was originally considered to be so barren that its best use was thought to be a weapons test range.[28] One reporter referred to the single outpost of civilization theyâd been able to build on that God-forsaken land as âThe Golf Course at the End of the World.â[29]
But Harvey Whittemore had big dreams. He envisioned ten golf courses as an anchor for retirees and hard-working families who wanted the good life, but couldnât afford Vegas prices.[30] In addition to the already built Jack Nicklaus signature course, there would eventually be 159,000 housing units. If fully realized, Coyote Springs would become the second largest city in Nevada. But it had all fallen through as the recession of 2008 started to take its toll and real estate markets across the country had bottomed out.
As of 2011, none of the housing units had been built and only the single golf course had been completed. The writer remarked that Nicklausâs single green golf oasis in the dry brush country of jagged edges and steep lines made it look like a vista out of the classic 1968 science fiction movie Planet of the Apes.[31]
And yet there was something audacious about Harvey Whittemoreâs ambitions, even in light of his troubles. The reporter who dubbed it âThe Golf Course at the Edge of the Worldâ also gave what might be considered a eulogy for many of Whittemoreâs projects. After first writing that normally when one sees a development gone bad you simply think the developer put his money in the wrong place and give a figurative shrug. The developer will go onto a new project. âBut a golf courseâat least one made with such high levels of devotion and talent as this oneâis different.â[32]
* * *Â
âYouâre under arrest,â said the woman in black, slapping a pair of handcuffs on Mikovits.
âBut itâs my laptop!â Mikovits protested.
The police would take and hold for almost one year not only Mikovitsâs black laptop, but also her iPad, iPhone, the MacBook Air she had recently purchased for her Ireland trip, and the silver laptop of her stepdaughter, who had been staying with them for a few days.Â
âDonât say anything!â David called out.
âI wonât!â she shouted back.
Four unmarked sheriffâs cars immediately came around the corner from Harbor Boulevard, staging what might have looked to the casual observer like an episode of Americaâs Most Wanted rather than the apprehension of a gure in a scientific controversy. Mikovitsâ five foot four of her, frizzy blonde hair, and just a shade over a hundred and forty poundsâstood on the road in her white jogging shirt and black knee-length shorts. She was shoeless, having left her flip-flops on the floor in the bathroom. One of the deputies noticed she was barefoot and asked if she had anything back at the house. âI was wearing my flip-flops,â she replied.
An officer went into the house to retrieve her shoes.
âWhy am I being arrested?â Mikovits asked one of the deputies.
âYou are a fugitive from justice.â
The arrest of Mikovits would confuse every legal expert who looked at the facts of this case for a simple reason. Nobody involved in any of these proceedings ever produced an arrest warrant. Under what law could a middle-aged scientist be taken into custody without an arrest warrant?
The question would remain unanswered.
* * *
A deputy returned with Mikovitsâs flip-flops and she was able to put them on her feet. A sheriffâs deputy opened the back door and she was escorted into the squad car for the eight-mile drive to the Ventura police station. At the police station, she was taken to an interrogation room and read her Miranda rights by an officer. âYes, I want an attorney and Iâll remain silent,â she told him.
The woman who had identified herself as âJamie,â now revealed as a member of the University of Nevada, Reno campus police, was also in the interrogation room. âWeâll give you a chance to go back to Reno,â she said.
One has to wonder how many times the UNR campus police have crossed the Nevada border to make an arrest of an adjunct professor in southern California.
Mikovits wondered if the whole song and dance had been an attempt to intimidate her so that she would agree to let the WPI participate in the Lipkin study, which would represent at least a quarter of a million dollars for the WPI. Arrest her in her home, drag her back to Reno, and let her stew in a jail cell until she agreed to let the WPI back into the Lipkin study? And if she didnât agree, who knew what might happen to her in a Nevada jail cell?
âIâm never going back to Reno,â Mikovits replied, as clearly as she could.
âWeâll see about that. See ya!â the campus cop sneered. After about two hours Mikovits was taken to the Ventura County Jail, booked, and told to stand for a mug shot. They gave her a thorough strip-search, including a body cavity search for drugs, took her only jewelryâher wedding bandâ her baseball cap, and her clothes, and issued her a standard prison orange jumpsuit. She tried to use her allotted phone call to reach David but outdated regulations disallowed calls to a cell phone. The only landline number she could remember was that of her long-time collaborator Dr. Frank Ruscetti back in Maryland. Nobody was home so the machine at his house picked up the call. Instead of allowing Mikovits to speak all that was left on the machine was a disembodied robot-like voice saying, âYou have a call from inmate.â
Later, Ruscetti recalled having no idea what to make of the crazy message.
Finally she called a bail bondsman and tried to post the $100,000 bond, which had been levied against her. The bondsman told her with a tone of disbelief in his voice that a âbail holdâ had been placed on her case and she wouldnât be able to be released that day. âYou must really have pissed off someone important,â he said.
* * *
âI never had a case where somebody was charged with stealing their own research,â Bill Burns of 101 Bail Bonds later recounted.[33]Â
When a potential client contacted Bill he usually performed a background investigation in order to get a sense of the person. Sometimes the people who found themselves arrested could be pretty smooth talkers, but their record usually told the real story. Burns talked to Mikovitsâs lawyer, who explained the nature of the dispute with the Whittemores and then he did his own research. He was quickly able to find out she had no criminal history, that she was a well-regarded scientist, and her husband David Nolde had also never been in trouble with the law.
A picture of his new client began to form in his mind. He had seen a similar scenario several times beforeâwhether it was an overzealous district attorney unfairly prosecuting somebody or when a wealthy individual had influence and knew how to make another personâs life miserable. The information he gathered about Mikovits in a short period of time convinced him that something was definitely out of whack.Â
âA lot of people suffer from this illusion of how great our legal system is,â Burns later recounted, âand it really isnât great. You talk about third world countries. You could feel like youâre in a third world country when youâre locked up and trying to get out. You canât use the phone. You donât have the ability to mount a defense. Itâs amazing in a country of this size that a lot of people get screwed very badly in our system. Itâs very easy to end up losing everything on a case that shouldnât have even been brought.â
Determining if a potential client was trustworthy was important to Burnâs business. Bail bonds donât get exonerated until the case is resolved, whether that takes two months or two years. The bail for Mikovits was one hundred thousand dollars, which meant she would put up 10 percent of that money up front. Burns would normally take a lien on her house or other property as collateral for the bond, but in this case he didnât have Mikovits or David Nolde sign over anything as collateral.
âI did a hundred thousand on a signature because I thought not only was the case full of shit, but everything about it was wrong,â he later said.Â
* * *Â
There were three holding cells in the basement of the Ventura County Courthouse. The cells were six-by-eight feet, with a three-foot-long steel bench, a small wall, and on the other side a steel commode, unfortunately without any toilet paper. The guards would alternate which cell a new prisoner would be put in, usually about five to a cell. When it was full or the hour was late, the group of prisoners would be taken to the new Ventura County facility down the road.
Many of the people in the holding cell were picked up that day for drug offenses or driving under the influence. For some of the prisoners it was their âappointment timeâ to serve all or part of their sentence. These were people whose cases had already been heard, and due to the overcrowding of the jails and the relative minor nature of their offense, would serve just a few days.
Shortly after Mikovits arrived in her cell, a woman named Karen (pseudonym), entered to serve her appointment time. She worked for a local newspaper, managing several of the vehicles, which made early morning deliveries. She had been picked up on a minor drug possession charge, was convicted, and as she told Mikovits, just wanted to put the mistake behind her and get it over with. Others were a little more frightening. One woman came in, teetering on six-inch heels, her hair eighteen different shades of the rainbow, clearly picked up for drugs. Karen and Judy exchanged thankful looks that she hadnât been put in their cell.
As the hours passed the cells continued to fill up, with some of them apparently regulars; they would warmly greet their fellow inmates or guards as they were processed in. At some point, one of the prisoners asked if any of them were first-timers.
âI am,â said Mikovits.
* * *
In the late evening, probably around ten or eleven, Ruth (pseudonym), a distraught woman in her mid-fifties, was brought into the jail. She was coughing and crying at the same time and lamenting that this was all a mistake. In the six or seven hours Mikovits had been in the holding cell she had learned a little about jail psychology: one didnât look directly at people and one kept oneâs head down. Everybody else was avoiding looking at Ruth as well.
âThis is all wrong! This is a mistake!â cried Ruth. âI shouldnât be here! I should be home!â Mikovits knew just how she felt.
 * * *
When Dr. Jamie Deckoff-Jones read the October 9, 2009, Science article by Mikovits and her team shortly after its publication, she looked up at her husband and said, âThis is it. This is what weâve got.â[34]
Deckoff-Jones was a graduate of Harvard and Albert Einstein College of Medicine and a board-certified emergency physician. Her father was a brilliant man and legendary surgeon, who graduated magna cum laude from Yale and finished Harvard Medical School at the age of twenty-one. Deckoff-Jones traced the beginning of her own neurological downfall to a series of hepatitis B shots she received when she was pregnant with her third child. She also often wondered about the sugar cube polio vaccine she received in 1961.[35]
Her symptoms waxed and waned over the years and she believed the constellation of her symptoms most closely resembled some sort of combination of Lyme disease and multiple sclerosis. Her daughter came down with ME/CFS when she was thirteen years old and around the same time her husband came down with Lyme carditis, a heart condition associated with Lyme disease.
In January of 2010 she wrote to Mikovits and was amazed at the lengthy emails Mikovits wrote in response to her questions as well as her openness and inclusiveness. As their relationship grew, Deckoff-Jones took over the role of answering much of Mikovitsâs email questions from patients. It was Deckoff-Jonesâs opinion that Mikovits was spending so much time responding to patient emails that it was limiting the amount of scientific work she could accomplish in a day.
Deckoff-Jones eventually came on as the clinical director of the WPI. Her relationship with the Whittemores quickly soured. Deckoff-Jones believed the problems arose because of Annetteâs inability to admit what she didnât know and protect her staff. Eventually Harvey took over as the person at the WPI to whom Deckoff-Jones directly reported. She found Harvey to be a smart man and generally easy to work with but he had his breaking point.[36]
In a text she sent to Harvey, she used the word ânepotismâ to describe many highly-placed individuals who worked at the WPI, like Carli West Kinne, legal counsel for the WPI, and Kellen Monick-Jones, the patient coordinator for the WPI, both Whittemore nieces. Other examples included not just relatives, but others who had long-standing personal or professional ties with the Whittemores.Â
âNow youâve really lit my fuse,â Harvey wrote back in a text after the ânepotismâ comment. Shortly after that, Annette Whittemore informed Deckoff-Jones they were going to have to shelve their plans for a clinic and her services wouldnât be needed. They had had conflicts over other issues as well, such as whether the clinic should treat kids with autism. Deckoff-Jones wanted to treat them, but believed Annette saw far too many problems with such an effort.[37]
For Deckoff-Jones, Mikovitsâs story is important in that Mikovits was like Pandora, opening a forbidden box. âShe made mistakes like everybody in the story. Me, everybody. An incredible opportunity has been lost as a result. But itâs mostly Harvey and Annetteâs fault. Judy never had a chance. They never supported her. She didnât have what she needed to pull it off. Ever. It was a joke.â[38]
* * *Â
Around two a.m. the day after her arrest, Mikovits was driven to the Todd Road Facility located in a lemon orchard about ten miles out of the city of Ventura. Upon being admitted to the facility, she was again required to strip, bend over, and submit to being cavity searched for drugs. Mikovits was given several pieces of paper with directions on how to be a model prisoner, but because she didnât have her reading glasses couldnât make out the words. When she complained to a guard about her need for reading glasses, the guard replied, âThis isnât a resort. Thatâs why they call it jail.â Apparently a model prisoner didnât âneed to read.â
At one point during her processing, Mikovits was asked if she was suicidal.
âNo,â she replied.
Even with her clear answer, Mikovits was placed in the suicide watch wing. The suicide watch wing was regularly used for people who were being arrested for the first time. It seemed that being arrested and placed in jail for the first time was such an overwhelming experience for the average person that it was presumed to make them suicidal. The light in the suicide watch cell was on the entire night, which allowed the guards to constantly monitor the prisoners for any signs of abnormal behavior. Mikovitsâs cellmate was a woman, Marie (pseudonym), who was undergoing treatment for a methamphetamine addiction. Because Marie was taking several powerful drugs to break her addiction and was thus at risk of falling out of bed, Mikovits was required to take the top bunk.
The cell was made of thick cinder block. The cell was about four feet wide, had a bottom and top bunk made of steel, a commode and sink attached to the wall, and a small window at the top. Instead of bars across the front entrance, there was a thick steel door with a small rectangular window. When the steel door closed, sealing her in, Mikovits felt as if she was in a tomb. The opening and closing of the heavy doors all night sent shivers through Mikovits. She could never have imagined herself in such a place. For a mattress, they were given the equivalent of an exercise mat and no pillow since they were in the suicide watch cell. Marie explained to Mikovits how to put her foot on one side of the small sink to climb into the top bunk. Upon making it to the upper bunk, Mikovits was greeted by the fluorescent, oblong light, which never went off.
Mikovits thought about one particular day in the WPI shortly after she had returned from the Invest in ME conference in England in May of 2011, when Harvey had stormed into her office. He shouted at her because he thought she had insulted Annetteâs efforts to reach out to another ME/CFS charity. Mikovits had done nothing of the sort but Harvey demanded, âYouâre going to go and apologize to Annette!â
âOkay! Okay!â Mikovits replied, hoping to defuse the situation.
Harveyâs booming voice had no doubt been overheard by other staff members, but as they left Mikovitsâs office, he put on a big smile and slid his arm around her shoulder. But his hand didnât reach all the way to her shoulder, stopping instead at the back of her neck, where it would be concealed by her shoulder-length blonde hair. As he walked past employees of UNR, all smiles and friendliness, Mikovits felt his hand squeezing the back of her neck so hard she thought it would leave bruises. To Mikovits, the message was unmistakable: she felt like he was saying he could end her at any time he wanted and all of these people he supported wouldnât raise a voice in protest.
Harvey pulled the same little neck-squeeze trick on Mikovits in August of 2011 when theyâd been leaving a restaurant with a representative of a drug company that Mikovits had introduced to the Whittemores. Harvey was hoping the company would initiate a clinical trial of a new drug therapy with the WPI and provide significant financing. Mikovits had been unusually quiet during the evening, and by the end of the meal the company had decided not to collaborate.
Since that time, Mikovits had been plagued by a recurring nightmare in which she was driving with friends of hers, having a great time, laughing and talking, when Harvey Whittemore suddenly sat up in the back seat, reached his long arm around her neck, and started strangling her. The metaphor was clear, he could do anything to her and she could not scream.
That first night in jail, Mikovits didnât worry about her own safety. She believed that Harveyâs plan had been to get her back to Reno and she knew the notebooks containing evidence had been secured by Max.
Who knew what was planned for her in Nevada?
But no matter how long his arms, Mikovits doubted Harvey could reach all the way from Reno, Nevada, to her jail cell in Ventura, California. It was ironic, but she felt safer in a cell with a recovering methamphetamine addict than she had felt in months.
* * *Â
Mikovits let her thoughts wander to Dr. John Coffin, whom many saw as the grand old man of virology, and his quote in Science comparing her to Joan of Arc.
Science at the highest levels is a territorial game of power. In many cases, if a young person discovers a novel finding in someone elseâs turf, the self-appointed head of that domain writes the second paper and first review article and effectively squeezes the young person out. Coffin had actually written an editorial in support of her original article in the journal Science entitled âA New Virus for Old Diseases.â[39] Now he was on the other side.
Who Mikovits wondered, compared a fellow researcher to Joan of Arc, a fourteenth century warrior saint unjustly accused of heresy, and prophesized, âThe scientists will burn her at the stakeâ: It was a ludicrous statement. Why should a scientist be burnt at the stake for publishing data that might turn out to be wrong? In the 1970s many papers were published falsely claiming the discovery of human disease-causing retroviruses. None of these people were burnt at the stake, some of them were elected to the National Academy. Was Coffin comparing the scientific community to the agents of the Inquisition? How might they feel about such a comparison? If her research turned out to be incorrect, let somebody else run the same experiments and disprove her. That was the way science went. People can be right one day and wrong the next. She could accept that. Coffin had been wrong about human retroviruses. Had he ended up in jail? Disgraced? No. There was so much more to this story.
But as much as she thought Coffin had acted inappropriately in many instances, she also felt that a great many of her problems stemmed from her former allies, the Whittemores. She believed that the recession had badly hurt the Whittemoreâs real estate holdings but also wondered if others with far more power might be forcing them to act against their natural inclinations.
But why would anybody not be interested in helping the millions of patients with ME/CFS and children with autism?
* * *
Even with all that had happened, as Mikovits lay in her bunk, she found herself trying to pray for the Whittemores. Mikovits had genuinely liked them. Many of her friends believed her downfall was due to her misplaced loyalty towards the Whittemores, maybe an emotional naivetĂŠ, an inability to tell when people were manipulating her. But there was no doubt that since the 1984â1985 outbreak of ME/CFS at Lake Tahoe, no other individual or group had done more to focus attention on this horrible disease than the WPI.
The poet Henry Wadsworth Longfellow once wrote, âIf we could read the secret history of our enemies, we should find in each manâs life sorrow and suffering enough to disarm all hostility.â It was in this vein that Mikovits thought of the Whittemores as she sat in her jail cell.
Mikovits believed Annette was in over her head with the WPI, but she was a parent fighting for her childâs life. She felt that so many things had conspired against them but especially the economy and not fully understanding how much the government wanted to avoid taking an honest look at ME/CFS or autism and the role vaccines might play. Mikovits tried to leave these thoughts behind and concentrate on something more elevated. She struggled to remember the words of certain Biblical verses she had heard over the years at church but couldnât recall any. It bothered her because she really wanted, needed, to pray.
Only the words to the Lordâs Prayer came to her. She began reciting it over and over, almost like a mantra, and it gave her a feeling of great peace as she faced the uncertain night ahead.
Our Father who art in Heaven,
Hallowed be thy name;
Thy kingdom come
Thy will be done
On Earth as it is in Heaven.
Give us this day our daily bread;
And forgive us our trespasses
As we forgive those who trespass against us;
And lead us not into temptation
But deliver us from evil.
âAct, and God will act,â Joan of Arc had once said. Despite all the times she had acted before and it had come to nothing, Mikovits thought she would try once again.
In science there isâmaybeâmore self-interest, a little more paranoia, a little more narcissism, or else why do we go into it? You think you are good enough to solve problems of nature. Many scientists tend to keep things to themselves. If the other person does not get funded, maybe you will be funded. All these things are in play, but these are the worst elements of science or scientists.
âDr. Robert Gallo.[1]
Barcelona, SpainâMay 1, 2006
Judy Mikovits searched for a seat just barely within earshot distance of the keynote speech of Dr. Robert Gallo[2] at the 5th International Conference on HHV-6 and -7 (human herpes viruses 6 and 7). Gallo was speaking in the stately grand ballroom at the Hilton Diagonal Mar Hotel in Barcelona, Spain. She hoped to fade into the diffuse lighting and subtle European accents of the room. Mikovits knew from previous encounters that she wanted to stay far away from the famed scientist.Â
Gallo was there to speak about human herpes virus number 6, which had been codiscovered in his lab in 1986 by [Dharam Vir Ablashi (born 1931)].[3] Ablashi was also the programâs committee chair of this conference dedicated to the HHV-6 virus and its possible connection to ME/CFS and other disorders.
Many Americans still consider Gallo to be the scientist who discovered the Human Immunodeficiency Virus (HIV), which causes Acquired Immune Deficiency Syndrome (AIDS). The World Health Organization estimates that since the known onset of the AIDS epidemic in the early 1980s, 70 million people have become infected with the HIV virus and about 30 million have died from the complications of AIDS,[4[ making it the greatest pandemic of the modern era and ensuring a place among the Louis Pasteurs and Jonas Salks of history for those at the forefront of HIV research, hence the ferocious fight among the participants for credit. Galloâs biography at the Institute of Human Virology at the University of Maryland, which he founded and still directs, claims he is âbest known for his codiscovery of HIV.â[5] However, when the Nobel Prize committee awarded the Nobel Prize in 2008 for the discovery of HIV to French scientists, Luc Montagnier and Françoise BarrĂŠ-Sinoussi, Galloâs name was conspicuously absent.
One canât doubt the ascendant accolades and recognition Gallo has received during his scientific career. Gallo holds an enviable twenty-nine honorary doctorates. In 1982 and 1986, he received the most prestigious American scientific award, the Lasker Prize, which is often called the American Nobel Prize for medical research. Gallo is the author of 1,200- plus scientific publications, and he authored the book, Virus Huntingâ AIDS, Cancer & the Human Retrovirus: A Story of Scientific Discovery. According to Galloâs own account, he decided to devote his life to science after the untimely death of his younger sister at the age of six from leukemia.[6] His story is an archetypal tale in science and medicine: those personally touched by an illness often want to conquer or cure it. His career choice seemed to be his natural mĂŠtier. Judy Mikovits made a similar decision to enter science after watching her beloved grandfather die of cancer, and later on her stepfather suffered the same fate.
The dispute over who actually discovered the HIV retrovirus, whether it was Gallo or a French team led by Luc Montagnier, became so heated that in 1987 it required intervention by US President Ronald Reagan and the French President Jacques Chirac.[7] The truce was struck when Gallo conceded he likely used the French HIV isolate to develop the test and allowed both Gallo and Montagnier to claim credit as âcodiscoverersâ of the retrovirus. These events likely marked thefirst time in history that credit for a scientific discovery has been decided by two heads of state.
Pulitzer-prize winning journalist John Crewdson of the Chicago Tribune was paramount among Galloâs early HIV critics. In several articles over a three-year period, Crewdson scrutinized many of Galloâs claims about his role in the discovery of the HIV retrovirus. Crewdsonâs investigative reporting culminated in a book-length special supplement to the Tribune of 55,000 words in November of 1988, entitled âThe Great AIDS Questâ.[8] In a later article in 1992, the Chicago Tribuneâs public editor Douglas Kneeland summarized Crewdonâs conclusions and the unresolved controversy:[9] After noting that Galloâs lab had not discovered the AIDS virus as they long claimed, they had benefited from the resulting test.
As a result, the United States has collected $20 million in patent royalties over the years from an AIDS test Gallo developed by using what even he now acknowledges was the French virus [emphasis added].
Kneeling finished his lengthy editorial by reflecting on what this investigation of high-profile science exposed about the pitfalls of money, ambition, and controversy.
This case was not of abiding importance because it was typical. It was not. But as a worst-case example, it tells us about the treacherous quicksands greed and ambition place in the path of even professional truth-tellers in the scientific research community. And it shows too well what happens when politicians, bureaucrats, lawyers and marketers get too close to science.
Mikovits found that many of the same criticisms would be just as applicable to her investigation of the XMRV retrovirus and ME/CFS, her own version of âtreacherous quicksandsâ that would entrap her in distortions and legal battles. But she was nothing like Robert Gallo.
She had seen the illustrious scientist at close range at the very beginning of her scientific career and did not want to imitate him.Â
* * *Â
Three years of investigation by the Federal Office of Research Integrity culminated in a report they released on December 30, 1992,[10] which found that Gallo had committed âscientific misconduct.â Gallo vigorously and vocally disputed the findings. However, on July 11, 1994, the Department of Health and Human Services stated â. . . a virus provided by the Institut Pasteur was used by the National Institute of Health scientists who invented the American HIV test kit in 1984â and promised the French $6 million dollars in restitution.[11]
Shortly after this acknowledgment, Gallo left the NIH for a position at the University of Maryland. The Chicago Tribune reporter, John Crewdson, would later turn the condemnatory information against Gallo into a 670- page book, Science Fictions: A Scientific Mystery, a Massive Cover-up, and the Dark Legacy of Robert Gallo, which would be published in March of 2002.[12]
However, it wasnât as if Gallo had contributed nothing to the field of retroviral research or had never taken risky positions. He had pushed the science further, demonstrating that the HIV virus caused AIDS, using a technique developed in Galloâs lab by Frank Ruscetti for growing T-cellsâ an immune response cell which the virus was found to infect. He had also been among the few who took the renegade position that a retrovirus could cause human cancer at a time when it had been almost laughable to believe such a thing. Right before AIDS, cancer was the most feared national disease, and he seemed willing to take on a fearsome challenge.
The scientists involved in the presidential dispute over HIV had also seemingly made peace with each other. When Montagnier was awarded the Nobel Prize in 2008, he wrote a gracious statement that Gallo was equally deserving of the award.[13] The two would later collaborate on several papers regarding the scientific history of the AIDS epidemic.
Maria Masucci, a member of the Nobel Assembly, had another take, telling the New York Times shortly after the awards were given, âthere was no doubt as to who made the fundamental discoveries.â[14]
* * *
The temporary truce between the two giants of retrovirology would deteriorate soon enough. Ironically the break would not be over HIV/AIDS, but rather over autism. Despite collaborating on the greatest pandemic of modern history, the winds between Gallo and Montagnier shifted dramatically around this other, underdog epidemic.
On June 4, 2012, Gallo wrote a letter to the Chantal Biya International Reference Center, an AIDS research center in the central African nation of Cameroon, calling for Montagnier to be removed from his part-time position as scientific director. Gallo was joined in this effort by several others whoâlike Montagnierâwere Nobel Prize winners.
A June 19, 2012, article in Nature recounted Galloâs efforts and Montagnierâs response [15]:
Montagnier deplores what he describes as âad hominem attacksâ and âplain liesâ, and says that there is an âignominious campaignâ against him and his group. He says that history is full of pioneers whose ideas were at first given a chilly reception by a conservative research community. âI believe this is happening again to me, and it is very sad that it involves Nobel Prize laureates attacking a fellow laureate,â he says.
The Nature article went on to detail what seems to have been the âlast strawâ justifying the efforts to remove Montagnier, his appearance at Autism One, a conference of autism parents and researchers in the field. Montagnierâs theory was that abnormal bacteria were causing at least some of the symptoms of autism, and that long-term treatment with antibiotics might be helpful. But it seemed his greatest crime was in listening to autism parents describe what happened to their children.
He says that he has never argued that vaccination could cause autism. âMany parents have observed a temporal association, which does not mean causation, between a vaccination and the appearance of autism symptoms,â he says. âPresumably vaccination, especially against multiple antigens, could be a trigger of a pre-existing pathological situation in some children.â[16]
Parents of children with autism were understandably frustrated that the scientific community disregarded that some of them noticed their childrenâs symptoms worsened or that health problems began shortly after the child was vaccinated.
Like Montagnier, Mikovits was not into arbitrary social divisions: she didnât like being told who to shun. She felt parents tended to be honest and accurate reporters about their own children. If she wanted to talk to an autism parent, she was going to talk to an autism parent. Being an aisle-crosser just didnât always make her popular amongst spotlight-grabbers.
One of the greatest thrills of her professional life came when she delivered a speech immediately following Montagnier, and the Nobel Prize winner directed the discussion toward her presentation and its ramifications. Then in a private conversation following the presentation, Montagnier commented on the XMRV controversy, compared it to his own battle with Gallo over HIV, and told her, âDonât let the critics get you down.â
* * *
Dr. Frank Ruscetti, Mikovitsâs mentor and long-time collaborator, was inclined to take a less charitable view of Gallo than Montagnier had offered on the morning he won the Nobel Prize. Ruscetti had seen Robert Gallo at close range, working in his lab from 1975 to 1982. Dr. Kendall Smith, a professor of medicine and immunology at Cornell University, recalled meeting Ruscetti during those early years at Galloâs lab as he worked on interleukin-2(IL-2), a protein molecule that regulates the bodyâs immune system, saying, âI always describe him as a cross between Leonardo Da Vinci and Rocky Marciano, because he is truly a pure intellectual, probably the most well-read scientist I know, and he never pulls punches.â[17]
Even before he joined her in later battles, Mikovits agreed that Ruscetti was one of the most brilliant, well-rounded men she had ever met. She saw him as both honest and incorruptible. These qualities and Mikovitsâs appreciation of them would form the basis of a more than thirty-year collaboration and friendship. Mikovits proclaimed that nobody on Earth knew her as well as Frank Ruscetti, as he had the soul-peering ability of an honestly-lived life.[18]
Smithâs fond memories of Frank Ruscetti stand in sharp contrast to what he told the reporter Seth Roberts of Spy magazine in 1990 about Robert Galloâs reaction to his work:
When, in 1988, Kendall Smith published a paper in the prestigious journal Science that accurately described the discovery of IL-2, Gallo was infuriated and phoned Smith from an AIDS conference in Stockholm. âKendall, I havenât read it, but people tell me you were not nice to me.â (It is a peculiar habit of Galloâs to claim he hasnât read or seen or heard whatever he is vociferously criticizing.)[19]
The article in Spy magazine also provided an account of the discovery of HTLV-1, the first known human retrovirus. It highlighted Galloâs reaction, and Frank Ruscettiâs response to Galloâs attempt to take credit.
In 1978, Bernie Poiesz arrived at the Gallo lab for a postdoctoral fellowship and was put under the tutelage of Ruscetti. For years Galloâs lab had been looking for retroviruses that infected myeloid cells, as retroviruses were known to cause cancer in animals. Researchers wondered whether they could do the same in humans.[20] With Ruscettiâs help, Poiesz found a retrovirus within months, and the two of them planned to publish an article on the discovery. en Gallo called Ruscetti down to his office and suggested Poiesz be taken off as first author. Ruscetti refused. Gallo told him he was unlikely to get far in life with an attitude like that.
Poiesz compares the discovery of HTLV-1 to the Celtics winning an NBA championship; Poiesz was like Larry Bird; Ruscetti was like the coach; and Gallo was like the general manager. Yet in the decade that followed, Gallo, who had not done any lab work for years, received almost all the credit.
Although Mikovits would never work directly under Gallo, she found herself locking horns with Gallo and NIH officials at her very first research job, and like Ruscetti she would not back down.
* * *
âScience is a very difficult thing to do well,â said Frank Ruscetti in 2013, reflecting on his research career of more than forty years and experience as the senior investigator and head of the Leukocyte Biology Section in the Laboratory of Experimental Immunology at the National Cancer Institute.[21] âAnd there are two ways to get ahead. You can struggle in the lab, work your tail off, and get some publications. The problem with that approach is that itâs a profession, which relies on the integrity of individuals to be anonymous. Anonymous in getting funding, anonymous in reviewing manuscripts, and that anonymity depends on the integrity of the individual.â[22]
In Ruscettiâs opinion, Galloâs brand of ruthless jockeying is common in research, as many scientists become intoxicated by scientific celebrity and quickly throw away their integrity. As in any field, science could involve substantial social networking and favoritism. âThen there are a group of scientists who believe itâs never important to be first, but to be second and third and write the first review article,â said Ruscetti. Those scientists will then âuse political connections to convince the world theyâre great. And unfortunately, our field is full of people like that. And they tend to be the more famous ones.â[23]
Ruscetti recalled an incident in the early 1980s when he went to see two leading scientists about obtaining some HIV samples for research. e scientists were happy to share the samples, but one couldnât stop talking about how much he hoped this research would land him a spot on e Tonight Show with Johnny Carson. To Ruscetti, there seemed to be to be a lust for the limelight, a Great Man complex, when in truth science should be a collaborative process. In Ruscettiâs view, this thirst for personal glory and recognition threatened the purity of science.[24]
* * *
Mikovits had entered her early professional life with enthusiastic determination. She graduated from the University of Virginia in May of 1980 with a BA in biological chemistry. She was the only one of the four children in her family to go to a four-year university. [25] Recognizing her promise, Anne Harpe Peabody, a high school English teacher at Jeb Stuart High in Falls Church, Virginia, was instrumental in getting Mikovits the financial aid to attend.
Right before Mikovitsâs graduation from college, TIME Magazine ran a cover story on March 30, 1980, about the discovery of interferon, which held the possibility of being a cure for cancer. From the day her grandfather had died several years earlier of cancer, Mikovits promised him and herself that this disease would not devastate other families as it had done hers. As with Gallo, her familial history of disease had thrust her into cancer research with a sense of calling. She also didnât want to waste any time getting started. On the Sunday following graduation, she saw an job listing in the Washington Post for a protein chemist to purify interferon as a biological treatment against kidney cancer in a lab contracted under the NCI in Frederick, Maryland. She applied for the job and landed it.
In 1982, Gallo contracted to Mikovits and her colleagues the task of purifying HTLV-1 retrovirus from infected cells grown in 250-liter fermentors using a continuous flow centrifuge. But there were risky issues with his methodology. Mikovits and her supervisor felt that the growing conditions for the retrovirus were unsafe for the lab workers, especially since there were several pregnant young women on staff.[26] The hazards to a developing fetus were at that time unknown and they wanted more safeguards. According to Mikovits, they brought these concerns to the supervisors, who were unbending and demanded that they go ahead and grow the retrovirus or sacrifice their jobs. Mikovits and her boss decided to do the work around-the-clock by themselves and still managed to complete the project on time, not putting any pregnant workers in harmâs way.
A few months later, Mikovits received a letter from her boss that the NCI no longer needed a protein chemist to purify interferon. She couldnât help but feel that the same dysfunctional environment that allowed Gallo to thrive was now turned against her as payback because she was a twenty-four-year-old lab technician who dared to challenge a lionized scientist. The guardians of public health had shown reckless disregard for the well- being of their own lab workers, even pregnant women, handling a poorly understood pathogen. What did this say about their concern for the rest of the public?
After her position was âeliminated,â she attended a seminar given by Dr. Joost J. Oppenheim. After his engrossing talk, she approached Oppenheim to discuss his current research.[27] He invited her to his office, and when she mentioned her position at the NCI lab had ended he suggested she talk to Frank Ruscetti, who Oppenheim had just hired as a principal investigator in his laboratory.
Mikovits was certain after the fact that she had blown the Ruscetti interview but had actually left quite a favorable impression with the scientist. When Ruscetti went to notify the personnel director to hire Mikovits he was told no, with the rationale that Mikovits âwas a troublemaker.â
âHow is she a troublemaker?â Ruscetti queried.
âShe asks too many questions.â
âBut sheâs a scientist!â he replied with outrage. âItâs her job to ask questions!â That settled it for him. Ruscetti insisted that they hire Mikovits and won his battle.
A few months later, Mikovits got a call from Robert Gallo, followed by Vince De Vita, who was head of the NCI. They wanted to take a look at a paper Ruscetti was writing confirming the isolation of HIV from blood and body fluids. Ruscetti was attending an overseas scientific convention in Europe at the time and thus could not weigh in.
Since Mikovits did not hold authorship, she told them she could not ethically give the paper to them. They threatened then to fire her for insubordination. (âInsubordinationâ seems to be a recurring theme in the ongoing career of Mikovits, earning respect from her supporters and angering her critics). Mikovits told Gallo and DeVita she wasnât going to hand over the paper. Mikovits challenged them to go ahead and fire her. When Frank returned from Europe and learned what she had done, he was incredulous. âYou did that for me?â he asked.
The stress of the past few weeks and the fear that she could be fired for a second time for standing up to powerful men got the better of her, and she angrily lashed out. âI didnât do it for you! I did it because it was the right thing to do!â[28] Ruscetti was impressed and bemused by the brassy courage of his young protĂŠgĂŠ. This was clearly a very special young woman.
Shortly after Mikovits told Ruscetti what had happened in his absence, he got a call from Gallo. âYou know, Frank, the NIH canât afford to have two different labs discovering this. You have to send me your virus to make sure itâs the same as my virus.â
But Ruscetti had been down too many dark alleys with Gallo to enter his circle of trust. Ruscetti replied, âWell, thanks, but no thanks. Congratulations on confirming the isolation. But Iâm going to flush my virus down the toilet rather than give it to you.â
Ruscetti would later observe that there were a number of dominant people in science who believed things were true simply because they spoke with an authoritative utterance. eir underlings lived in fear of them because of how they could change the trajectory of a researcherâs career. Unfortunately, a commanding phrase could take on a life of its own, outlasting even its definitive disproof, which was how some dominant figures rose to the upper echelon of the scientific hierarchy in Ruscettiâs estimation.
âGalloâs a classic example,â said Ruscetti. âUnfortunately, there are a lot of people like him in science.â[29]
* * *
When Gallo hit a crosswind several years later regarding his claim to have discovered the HIV retrovirus before Montagnier and BarrĂŠ-Sinousi, Mikovits and Ruscetti werenât exactly surprised to see him sputtering against a backlash.
However, there was no such controversy surrounding the discovery of human herpes-virus #6 (HHV-6). The dispute surrounding HHV-6 would be about its possible connection to various debilitating or deadly human diseases. Working at Galloâs lab a few years after Ruscetti had left, Drs. Syed Zaki Salahuddin and [Dharam Vir Ablashi (born 1931) ] first reported the isolation of the virus.[30] Pictures of white blood cells which had swelled (earning the nickname âjuicy cellsâ), showed they had been infected by the virus. These findings were published in the journal Science in October of 1986. The infected cells appeared to be B cells, but the virus also seemed to target T-4 lymphocytes (otherwise known as CD4 cells, a key part of the immune system).
Patients with AIDS soon tested positive for the newly discovered herpes virus, which may not have been initially groundbreaking since AIDS patients tested positive for numerous opportunistic infections including others in the herpes virus family. Then reports filtered in to Gallo, Salahuddin, and [Dharam Vir Ablashi (born 1931) ] that the so-called âjuicy cellsâ were seen in other patients with unrelated immune system disorders including young children with seizures as well as adults and children with blood disorders, kidney problems, or ME/CFS.[31] Of course, this raised the question of what causal factors could create commonality in these seemingly disparate hits to the immune system, and which virus or retrovirus was the driver (and which ones were passengers).
Even after more than twenty years, the question remains unanswered whether the HHV-6 virus lies at the heart of many serious diseases or whether it is just another telltale indicator of an even more elusive pathogen or type of pathogen which is decimating the immune system of its victims and leading the reactivation of dormant bugs or invasion by new bugs.
However, with AIDS, the one-two punch of HIV and its coinfections became textbook information: HIV compromised the immune system, leading to secondary opportunistic infections. To treat AIDS, antiretroviral drugs had to be used as primary treatment, with treatment for secondary infections as a next line of course, because this was the way to deal with the one-two punch.
Treating opportunistic infections alone, in the early years of AIDS, had resulted in gravely shortened lifespans and massive carnage, even when it did prolong life.
* * *
In late 2005, Mikovits was smiling and at ease in one of her favorite spots: tending bar at the Pierpont Bay Yacht Club (PBYC) in the Ventura Harbor in Ventura, California, not far from the beach house she shared with her husband, David.[32] There were no membership fees required to join the club and annual dues were minimal, giving the club a class-straddling joviality unreachable in many similar places. However, the small dues required that the facility run on volunteerism. Members were required to partake in various duties at the clubhouse at least once a year.
Judy and David Nolde did much more than the minimal duties. In addition to being rear commodore of the yacht club, Nolde (among their friends she is known as Judy Nolde, while professionally she retains the Mikovits name) liked filling in regularly as the bartender. The job allowed her to open up the club in the late afternoon or in early evening, pour beer and wine, clear her mind with the heft of a pinot noir in one hand, and connect with a diverse group of people. She loved the relaxed banter, hearing about the struggles and obstacles people had overcome. If asked, she would freely share tales of her own life.
She regaled the patrons with stories about her more than twenty years working at the National Cancer Institute in Maryland. Or, if they were in the mood for romance, she told them about meeting David at a conference in Ventura in 1999, getting married at the age of forty-two, commuting for a few months between the NCI on the East Coast and Davidâs home in Ventura, and finally deciding that if she wanted a real marriage she needed to be in the same time zone as her husband. It was his gentle magnetism that brought her there, to a place where an accomplished scientist might be found tending bar at an egalitarian yacht club.
To be nearer to David, she got a job as director of cancer research with a biotech start-up in Santa Barbara called EpiGenX Pharmaceuticals, which was developing drugs to regulate tumor suppressor genes, leading to more effective outcomes for cancer treatment. The drugs they were developing decreased DNA methylation (increased DNA methylation caused silencing of gene expression), which normally becomes disrupted as cancer spread through the body, thus causing further downstream damage. The intellectual property for the company was licensed out of the University of California at Santa Barbara (UCSB) and Judy was intimately involved in the construction of the lab EpiGenX built, as well as securing two SBIR grants from the NIH.[33]
The company had floundered in the wake of the sluggish economic climate after 9/11. In the spring of 2005, it was in the process of being bought out by a larger company. EpiGenX had generated a fair amount of its own intellectual property, but with no funding to pay employees, Mikovits was the only actual lab employee left. She would still go into the lab every day and run experiments, but the company had also put her in charge of handling due diligence for the upcoming sale, which took a few hours every day. Mikovits knew that when the sale went through she would in all likelihood need to look for a new job.
The sale wouldnât take place for several months, so on one Friday evening in late 2005, Judy found herself working behind the bar when then vice-commodore of PBYC, Joe Vetrano, walked in with his new girlfriend, Karen, an accountant. It would prove to be a moment of serendipity, with Judyâs candor working in her favor. The three of them chatted for a while and Karen started to talk about her boss, who had a daughter tragically sick with an illness believed to be caused by a human herpes virus HHV-6. Judy was intrigued as Karen conveyed the substantial level of impairment and suffering of her bossâs child. Karenâs boss, Kristin Loomis, had started an organization to go after the virus, called the HHV-6 Foundation. After Karen had talked for several minutes and Judy excitedly asked a few questions, Joe initiated, off-handedly, âJudy, maybe you could help them.â
âYes, Joe, why notâIâll check it out,â she replied with a grin, taking away their finished drinks.
* * *
Ken Richards joined EpiGenX in September of 2000, as chief financial officer, and recalled recruiting Mikovits from the NCI in May of 2001.[34] Ken was originally from Canada, having worked for seventeen years for a Canadian corporate investment bank before transferring with them to Los Angeles in 1997. He was surprised as a savvy money-man to find that the University of California at Santa Barbara (UCSB) had a phenomenal science and engineering program, but no systematic way to bring their research discoveries to market. Richards and two other ambitious partners founded the Santa Barbara chapter of Tech Coast Angels, the largest angel funding network in the United States.
It was at a meeting for Tech Coast Angels [ https://en.wikipedia.org/wiki/TCA_Venture_Group ]Â that Ken was introduced to EpiGenX, and through that company he would meet Mikovits. He later gushed about her: âJudy was a very well-spoken, knowledgeable, and dedicated scientist who wanted to do everything possible to find effective treatments for cancer,â said Richards. On the question of why Mikovits seemed to have both strong supporters and critics, Richards said, âI tell everybody, Judy is very controversial. Many people do not like her and many people admire her. I am in the later category. She speaks her mind. When she develops a view, she is dedicated to that view and will defend it fiercely. Sheâs combative in a positive sense, and that tends to irritate some people.â
Richards believed that many of Mikovitsâs detractors had fallen victim to an unconscious form of sexism in which an assertive woman was âviewed as a bitchâ while a man making a similarly impassioned defense of his position would be âadmired and respected for his firm stance.â[35] It seemed like the kind of post-feminist statement that perhaps only a man could make and be fully heard, especially regarding a disease like ME/CFS that was incorrectly thought to only affect women and had been derogatorily referred to as âYuppie fluâ in its early years, with mocking press implying that women contracting the disease were overly driven.
Even though Mikovits would eventually leave EpiGenX, her tie with Richards would remain solid and he would remain a steadfast supporter. In 2011, Richards was putting together a private equity firm to invest in early stage technology and biotechnology companies. â[We] needed somebody with a strong science background, the first person I thought of was Judy Mikovits.â
When a few higher-ups asked questions about bringing on this controversial figure, Richards had several cards to play on Judyâs behalf. In addition to a recommendation from the respected Frank Ruscetti, Nobel Prize winner Luc Montagnier was very supportive of Judy and wrote highly of her work and her integrity when he penned a recommendation to the Yorkbridge management.
* * *
After her chance run-in at the yacht club, Mikovits did some cursory research on HHV-6, and within a few hours felt comfortable that she understood most of the issues, mainly the question of whether HHV-6 initiated the disease process or was simply a consequence of a poorly functioning immune system. The questions were much the same as they had been in HIV/AIDS research.
Her doctoral thesis had in fact been on the development of AIDS from HIV infection.[36] She had the curious experience of defending her thesis shortly after the basketball player Magic Johnson had announced he had tested positive for HIV in November of 1991. Because Johnson was such a beloved sports star and defied widespread stereotypes about who got AIDS and who didnât, his revelation had shaken the country and cracked open borders for marginalized groups. The focus of the committee at her thesis defense was the question: based on your thesis do you think Magic Johnson will ultimately develop and die of AIDS?
The soon-to-be Dr. Mikovits answered that she thought Johnsonâs long-term prospects looked good. His infection appeared to have been recently acquired, so if he took the recently developed antiretroviral therapy (ART) that prevented the HIV virus from replicating and integrating into tissue reservoirs of the monocyte and macrophages, it would never cause the immune deficiency. For Johnson, HIV might not be able to establish itself in hidden reservoirs, if they started him on the antiretrovirals quickly after his initial infection.
In all likelihood, Mikovits told her thesis committee then, Johnson could look forward to an average life-span. Nearly fourteen years later, as Mikovits sat down to write an email to Loomis in November 2005, she reflected on Johnsonâs continuing good health, which many would have thought magical thinking in 1991. She included her rĂŠsumĂŠ in the email and details of the upcoming sale of EpiGenX. Loomis emailed Mikovits back within a few hours and they made plans to meet at Loomisâs house in Montecito. They talked for much of the afternoon. Loomis said she was interested in bringing Mikovits on staff in some sort of research capacity. [Dharam Vir Ablashi (born 1931) ] had the title of research director, so that would remain with him.
But some position would be found for Mikovits.
Mikovits wrote an excited email to Ruscetti about the job offer, noting how much she disliked the turmoil of EpiGenXâs pending sale, being put in charge of due diligence for the sale, and thatâmore than anything elseâ she wanted to get back to working with patients and doing research. Ruscetti was a little more cautious, hesitant about the involvement of [Dharam Vir Ablashi (born 1931) ]. He thought Ablashi was cut from the same cloth as Gallo, and part of what had gone wrong in retrovirology in the past thirty years, turning what should have been a collaborative search for truth about the greatest scourge of recent history into a cruel and brutish competition for individual glory.[37]
Against the advice of Ruscetti, Mikovits took the job.
* * *
Within the first couple of weeks she worked as a consultant for the HHV-6 Foundation, Mikovits took Loomis to her lab at EpiGenX. Loomis was excited over the large freezer they had at the facility and explained that she worked with Dr. Daniel Peterson, a physician in Incline Village, whoâ along with Dr. Paul Cheneyâstumbled upon and then started treating the âwalking woundedâ from the first modern outbreak of what was called at the time, chronic fatigue syndrome (CFS) at Lake Tahoe in 1984â1985.
The name would later be changed to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). It was a surreal reality for these small-town doctors in the placid setting nestled in the mountains, like being in a remote area of the Alps unaware that it was wartime and finding an office filled with never-before-seen injuries.
The patients kept stumbling into the practice in Incline Village, as baffled as the doctors, while Peterson and Cheney tried to take detailed testing and records with little certainty about what to offer beyond symptomatic treatments. Peterson reputedly had a repository of blood samples dating back to that first outbreak, which would be ideal for research. Mikovits dreamed of the diagnostic tests she could run on the blood. Loomis told Mikovits that she and Peterson should write papers together since that was not one of Petersonâs strengths, whereas Mikovits had more than forty published articles to her name.
After the initial burst of excitement of the first couple weeks, though, there was a disconnect between what Mikovits thought she would be doing and what she was assigned. Mikovits figured a bright spot might be preparing for the 5th International Conference on HHV-6 and -7, to be held later that year in Barcelona, Spain. Loomis wanted her to find companies and individuals to sponsor the meeting. She knew that Mikovits had many contacts from her years at the NCI and her years in the biotech field.
[Note - HHV-6: an underestimated virus /Proceedings of the 5th International Conference on HHV-6&7 and Abstracts from the 5th International Conference on HHV-6&7 /  1-3 May 2006 ⢠Barcelona, Spain /  https://www.sciencedirect.com/journal/journal-of-clinical-virology/vol/37/suppl/S1 ]Â
Mikovits reviewed the abstracts for the conference, knowing the rigorous standards the pharmaceutical companies and scientific experts would expect. After reading the abstracts she grew more despondent. There was no real uniformity to the papers and Mikovits felt she could not present the idea of sponsoring the conference to any of her colleagues due to the fact there was so little actual science in any of them. It wasnât necessarily a criticism of the scientists. It was largely a reflection of the paltry level of funding given to study the virus. Without serious money given to study a problem, nobody could be expected to produce high-quality science.
Loomis was upset when Mikovits said she couldnât find any sponsors for the conference among the scientists and organizations she knew. After those aimless early weeks and after talking it over with her husband, Mikovits made a decision. She had promised to go to the meeting in Barcelona, but when the conference was over she would leave the HHV-6 Foundation and look for another job.
* * *
Barcelona, SpainâMay 1, 2006
Gallo finished his dinner talk and Mikovits was glad she had been able to avoid listening too closely. The pharmaceutical reps at her table had been lively company. To the public, Gallo was still a respected figurehead, but some viewed him as somebody who had been âsavedâ because a true accounting of his misconduct would have been a stain on the prestige of American science.[38]
After Galloâs talk there was an award being given to one of the members of the board of directors of the HHV-6 Foundation, Annette Whittemore. Mikovits knew the name, but had not otherwise been aware of the Whittemores until the award announcement and the letter written by her husband Harvey as a prelude. Mikovits learned that Annetteâs father had been a doctor for small rural communities in eastern Nevada. Later Mikovits would learn that Annetteâs father had delivered all of Senator Reidâs children. Annette also had a degree in special education and had worked for several years with children who had autism. She appeared a bit overwhelmed by the tribute, kindly thanking the group before quickly exiting the stage.
As Annette stepped down from the podium, Mikovits couldnât help but reflect on the contents of Harveyâs letter, detailing what a loving, virtuous, person Annette seemed to be: just the kind of person Mikovits wanted to be around.
* * *
Barcelona, SpainâMay 3, 2006
Dan Peterson gave the morning presentation on the final day of the conference. He was listed in the program as âPrincipal Investigator, Chronic Fatigue Syndrome and Immune Dysfunction Syndromeâ[39] out of Incline Village, Nevada. It was only fitting he should have such an exalted title given his association with ME/CFS ever since it had appeared amongst those snow-capped peaks in 1984â1985.
Mikovits sat in the back of the room, thinking she had only a few more hours left of the conference and her attention was waning a bit, when Peterson came to his last slide. The slide contained data from sixteen people with ME/CFS and the various cancers they had developed over time, which obviously piqued her interest after so many years at the National Cancer Institute.[40] In addition to the cancers, the slide showed the results of their immune cell testing.
The T cells showed some unusual abnormalities known as clonal rearrangements. This meant instead of making many different generalized T cells to target all of the pathogens that might appear, these patientsâ cells seemed to be focused on a singular insult, leaving their immune systems vulnerable to other invaders as if the cells were obsessively staring down the crosshairs of a gun at one target while other invaders snuck in from behind.
This piqued Mikovitsâs attention because T cells eliminate virus and cancer cells and abnormalities meant the body would have a reduced ability to fight off a viral pathogen. A chronic viral infection lying in wait for many years might end up causing a cancer. Mikovits also saw on the slide a few mantle cell lymphoma cases. At the time she was participating in a cancer support group in Ventura, and a few of those women also had mantle cell lymphoma. Mikovitsâs years at the NCI working with Ruscetti had drilled into her the idea that whenever one saw a cluster occurrence of illnesses, one should think about pathogenic causes. This dictum wasnât always true, but it was a logical place to start.
Peterson told the assembled group that he didnât know what the unusual T-cell abnormality meant and stated that if anybody had any idea they should come up and talk to him. Mikovits nearly sprinted up to the podium to grab his attention. They talked for several minutes and Peterson was enthusiastic about her expertise and invited her up to Incline Village to look over his files and talk with patients. She would meet with the Whittemores and with Peterson, who was treating the Whittemoresâ aforementioned daughter, Andrea, to see if there were any ways she might assist their efforts. Mikovits also thought she might be able to link the mystery of the T-cell abnormality to the pathogenesis of ME/CFS.
Exciting collaborations seemed to be afoot and Mikovits was unexpectedly looking toward Nevada, a state that had used the slogans, âWide Openâ and âBattle Born.â Both slogans would prove prescient for her as she ventured into what seemed to be a wide-open field of possibility and found herself battling bullying opposition and intangible demons.
Reno had hosted its own slogans and nicknames over the years too, such as âA Little West of Centerâ and âFar From Expected,â catch phrases that seemed to connote a climate of broad-minded risk taking that would welcome an insubordinate scientist who stuck to her guns.
Throughout the 1990s and early 2000s . . . Whittemore . . . was the supreme legislative lobbyist. He represented the gaming, tobacco and liquor industries . . . He could get legislators to pass the legislation his clients wanted and then help the same legislators finance their next political campaigns.[1]
âLas Vegas Review, February 26, 2012
Sparks, Nevadaâearly June 2006
Judy Mikovits first met with Harvey and Annette Whittemore at the Red Hawk Resort and Country Club in Sparks, Nevada. Red Hawk was a place with preternaturally green golf courses rimmed with mountain views, finding areas with tasteful stonework and towering wood pillars, and a luxe-yet-earthy aesthetic: even the restaurantâs house wines were from La Terre (the earth) winery, a reminder that patrons were in a verdant but obviously man-made paradise.[2]
The juxtaposition of green fairways and the arid desert was one Harvey seemed to love as a Nevada developer. Other regions of the country had transitioned from dust bowl to arable plains, from marshy tall grass to farmland, and this process of revamping unruly land often involved both visionary thinkers and sometimes a heavy human hand. Sparks sat about thirty minutes east of Reno, and many initially thought it was a crazy location for a city. It was plunked right in the middle of the desert, where average rainfall was less than eight inches per year. Economic growth in Reno in the 1950s had created a rising demand for low cost housing, and Nevada was known for risk-takers seeking unexpected payoffs. Developers successfully grabbed water rights to divert streams from the Sierra Nevadas that towered to the West, thus allowing the city to prosper. e approximately 90,000 people of Sparks were housed in a neat layout around the centrally-located tower for John Ascuagaâs Nugget Casino, which was understatedly flashy by Nevada terms. Nevadans often joked, âReno is so close to hell you can see Sparks!â
Water rights, being so central to life and property and a protected commodity in the West, could be harder to secure than cattle in modern- day Nevada. The Silver State might as well have been named after the battle over silvery streams and rivers. When her car glided closer to the Red Hawk resort it was difficult to be unimpressed by the sheer audacity of what Harvey Whittemore had pulled off in the high desert. The Resort at Red Hawk sat on land that had originally belonged to George Wing field, who during his sixty-three years in Nevada had been a miner, banker, rancher, investor, andâlike Harvey Whittemoreâa developer and political power broker.[3]
Harvey and his fellow developer David Loeb chose to preserve the original ranch house of the man nicknamed âKing Georgeâ when they built their resort among the sage, reeds, and rushes where Wing field had once set his duck blinds and raised Labrador retrievers in the shadow of the nearby Pah Rah Mountains. In the spring of 1997, Harvey and his partner opened the first of their two golf courses, the Lakes Course, designed by the famed golf architect, Robert Trent Jones II. Sitting upon Audubon Certified protected natural wetlands and featuring natural lakes, murmuring springs, and cottonwood trees, the course was designed to embrace the idyllic landscape.
In the ensuing years the Lakes Course was named âBest Golf Course in Renoâ seven times by the Reno Gazette Journal.[4] In 2001, Harveyâs group built a second course designed by player-turned-golf-architect Hale Irwin. Then they broke ground on a permanent clubhouse and a variety of residential options ranging from large homes to condominiums.
Mikovits immediately noticed the respect bordering on reverence that the employees seemed to have for Harvey and Annette. Later she noticed glimmers of nepotism in the same Whittemore mirage, as she learned that many of the employees at Red Hawk were the children of close friends or even family members. In person, Harvey could be considered a physically intimidating man, standing well over six foot four, his reddish hair cropped and thinning, almost military style. He also had a well-trimmed goatee, giving him a rebellious look for a businessman and adding to the waft of celebrity that followed him around Red Hawk and beyond. Harveyâs office was mightily extravagant. An enormous bay window overlooked the Lakes Course and autographed sports memorabilia ornamented the walls along with flat screen TVs.
In many meetings to come, Mikovits would typically join the Whittemores in a small conference room. Before the meetings started, a waiter typically slipped in to ask if they needed drinks or food. This first meeting, however, they met in the evening in a conference room right off of the restaurant where they could dine properly on the restaurantâs New American cuisine. On the heels of the recent Barcelona conference, they were joined by Dan Peterson and Dr. Greg Pari, a professor at the Department of Microbiology and Immunology for the University of Nevada, Reno (UNR). In 2010, Pari would become chair of that department.[5]
During the meeting, the Whittemores first proposed to Mikovits their idea of starting a research institute in collaboration with UNR. They believed an institute dedicated to all aspects of neuroimmune disease, one that could encompass the work of the HHV-6 Foundation under the auspices of a common academic home, was the best approach to streamline the research and bring scientific powerhouses together.
Pari thought it was a terrible idea, even though the Whittemores had envisioned him as perfect for the job of research director. Pari told the Whittemores if he was involved in a significant capacity his salary alone would cost somewhere north of two hundred fifty thousand dollars a year. But Pari didnât want the job anyway.[6] Even with his protests, he did remain interested enough to show up at WPI parties, and he would later join its Scientific Advisory Board after Mikovits was fired.[7]
With Pari declining the offer to be research director of a still-not-yet-existent WPI, the others agreed that Mikovits should spend the summer commuting to Petersonâs office to learn about the disease and begin laying out plans for the WPI. Her routine quickly fell into place. She took a Southwest flight early Monday mornings, spent the week working at Petersonâs office at Incline Village, then flew home to be with David on Friday night. This would remain her routine before the WPI acquired laboratory space from the university.
* * *
One Friday, as Mikovits flew back to southern California, she thought of what she had learned over the week about Andrea Whittemore. Annette later wrote a long and thorough article, which gave much of her daughterâs history as well as the rationale for the founding of the institute. It was published in the June 2010 issue of Molecular Interventions[8]. She wrote of Andrea coming down with a mono-like illness in 1989, months of flu-like symptoms, and symptoms including tachycardia (abnormal heart rate), swollen lymph glands, muscle pain, and night sweats. The doctor diagnosed the condition as being psychological in nature, which seemed ridiculous to Annette.
In November of 2009, shortly after the publication of the article by Mikovits and her team in Science that showed an association between the XMRV retrovirus and ME/CFS Andrea Whittemore-Goad went public with her story on a Facebook posting for the WPI.[9]
âMy name is Andrea Whittemore-Goad,â she wrote. âUntil last year I was uncomfortable telling my story to complete strangers, but now if this is what it takes for all to understand the severity of this disease, I will.â She recounted how as a young girl sheâd had a poor reaction to a DPT booster and that in fourth grade she came down with a mono-like illness after a tonsillectomy. After the surgery she had gastrointestinal problems and tachycardia and none of the doctors could tell her parents what was wrong. But the medical professionals were scared. One psychiatrist told her to get out of her office because she didnât want to catch what Andrea had. Another told her parents that Andrea was âschool-phobic.â
Annette continued the story in her Molecular Interventions article.[10] A neighbor suggested they visit a Peterson who had treated patients from the Incline Village outbreak of 1984â1985. Peterson turned out to have a good understanding of the disease, and although his treatments seemed to provide mostly symptomatic relief, Andrea made slow but steady progress under his care. Her mother elaborated:
She continued this modest improvement until she decided to enroll at the University of Nevada, Reno. The admission policy required the measles, mumps, and rubella (MMR) vaccination prior to starting classes. Within five days of the MMR vaccination, Andrea had a severe relapse and never regained her previous level of health.[11]
Andreaâs Facebook post recounted that her reaction to the MMR vaccination left her confined to a wheelchair.[12] Over the next several years, the family tried numerous strategies to improve Andreaâs health, without much luck until Andrea was twenty-one and they stumbled upon Ampligen, a substance that acts to stimulate the bodyâs antiviral defenses.
Compared to other treatments, for Andrea it was a godsend, a gift she didnât take for granted since she was one of the very few patients with access to the drug under controlled trials. She took Ampligen off and on for eight years:
While taking Ampligen, Andrea improved to 75% of her previous levels of energy and stamina, but despite many of the positive outcomes, she continued to fall ill with opportunistic infections. For unknown reasons, Andrea began to develop reactions to Ampligen, making her too sick to continue.
In 2006, when Mikovits first started working in Nevada, Andrea was doing relatively well, although there were clear indications that the Ampligen was producing less than a full recovery. This had also been true of early monotherapy for AIDS, where stumbles and severe relapses often followed improvements.
* * *
When Mikovits first arrived at Petersonâs office in Incline Village to begin her investigation she encountered her new âstaff,ââthree summer student internsâwaiting for her.[13] The crew included David Pomeranz, who later went on to USC Medical School, and Byron Hsu, a young man from Berkeley: both hired from a job listing on Monster.com. The third member was Katy Hagen, whose mother was a friend of Annetteâs.
After talking with David, Byron, and Katy for a few minutes it became clear that none of them knew much about science in a research setting. Yet they all seemed like motivated, brainy, greenhorns and Mikovits had often worked with similarly raw students at the National Cancer Institute. She enjoyed the challenge and energy associated with new learning and often found that their inexperience could be a positive as they would work hard to master the right techniques, entering with what Buddhists call a âbeginnerâs mind.â
In their previous discussions, Mikovits remembered Peterson talking about his ârepositoryâ of samples. She had already compiled a mental list of investigative studies which might be conducted with them. Things were moving forward. There had been a meeting with Dr. John McDonald, who at the time was dean of the medical school, and Harvey and Annette had already started meeting with state and national politicians about the feasibility of putting an institute together at UNR.
Mikovits asked Byron to find a few patient samples using dates and patients from the original table Peterson had showed in Barcelona, especially the ones with Mantle Cell Lymphoma (MCL). Then she started discussing with David and Katy what they would need to do to build an Excel data sheet to match the critical records from each of the patients to their samples in the repository. It seemed to Mikovits that Byron had only been gone for just a minute or two when he was back.
âI think you need to see this,â Byron said. Mikovits followed Byron down the hallway to a small room which held a large deep freezer about six feet tall by three or four feet deep and just as wide. Byron opened the freezer and Mikovits saw it was filled from top to bottom with plastic bags containing tubes with written names and birthdates scribbled on the side of each tube.
Oh my God! This is the great repository? Mikovits thought. Many of these samples had in all likelihood been logged prior to the more stringent privacy laws. From a scientific standpoint there were more significant problems. Freezing whole blood destroyed evidence of RNA viruses and the even more delicate RNA messenger molecules whose importance was just beginning to be understood, leaving behind only DNA.
Mikovits and her new team drove down to the local grocery store and bought a block of dry ice, a few bottles of isopropynol, and cotton swabs. The interns would start the summer by rubbing the names off of thousands of tubes, putting dates and identification numbers on them as required under the more stringent privacy laws, and building the information into Excel files.
Mikovits would start by contacting the patients, making arrangements to draw new, fresh blood, properly harvested. On one of her weekends back in southern California she stopped by EpiGenX. She got permission to take some extra pipettes, bottles of trizol, vials that could withstand being cryogenically frozen, and reagents which would allow the samples to be frozen without destroying the nucleic acids.
The repository may not have been what she expected, but Mikovits would make sure that this new repository was a resource they could trust to answer their most challenging questions.
* * *
The first hypothesis Mikovits came up with was that they might be able to nd a biomarker of a viral infection in the sampled patients by measuring the ability to produce alpha interferon from plasmacytoid dendritic cells (PDCs) introduced into a patient culture sample. PDCs are immune cells circulating in the blood. A healthy individual will produce large amounts of interferon from their PDCs when exposed to retroviruses like HIV.
These cells can be harvested from blood and the amount of interferon they produce can be measured.
Frank Ruscetti had done some of the original work on PDCs and human retroviruses and had a good store of the cells. Mikovits was able to get fresh primary PDCs and the interferon-producing PDC cell line, CAL-1, and use them to test patient samples. To her surprise, none of the samples were pumping out interferon. It was an interesting finding as PDCs infected with HTLV-1 did not produce interferon either. A key part of the immune response was disabled in ME/CFS patients, just as in HTLV-1, which caused cancer and neuroinflammatory disease. Mikovits and Ruscetti were both intrigued.
Mikovits spent a good deal of time taking data from patients about their maladies. During this time she also did consulting work for a biotech company that had developed a unique chemokine/cytokine multiplexed assay. She used this test that measured inflammatory markers (usually a sign of infection) on the patients. In addition, she checked their levels of natural killer (NK) cell activity and RNase L (other indicators of an abnormality in the innate immune systems of ME/CFS patients). When using the cytokine/chemokine profiling test Mikovits later recalled that:
it was consistent with a viral infection. It didnât have to be a specific virus, itâs just what we found when we ran the original viral expression micro-array experiments that same summer. There was a highly dysregulated expression of RNase L, there were various levels of significant expression for many different kinds of virus. It really didnât matter. Lots of HHV-6, lots of enteroviruses. So much noise that I did remark that these people looked like AIDS patients.[14]
She was not the only person to make the clinical observation that ME/CFS patients resembled people with AIDS. Before HAART therapy for AIDS patients, when AIDS dementia complex (ADC) often went unchecked, Dr. Anthony Komaroff of Harvard University published a vivid paper that compared the brain SPECT scans (to measure blood flow) of patients with ADC, ME/CFS, and unipolar depression to controls.
Komaroffâs images showed well-lighted brains in depression and the control group (with the illuminated red, orange, and yellow tones representing blood flow to various areas of the brain), but an optically- stunning near âlights outâ in ADC and ME/CFS that was shockingly similar, as if a violent storm had knocked out the power grid in two neighboring states.[15]
That summer, Mikovits called Ruscetti and told him that among Petersonâs patients she had encountered a fifteen year old and a thirty year old with shingles.
âThatâs ridiculous,â Ruscetti replied. âTheyâd be AIDS patients.â
âYeah. Exactly what I was thinking.â
Since the patients werenât dying en masse as they did with AIDS, Mikovits knew it couldnât be the HIV retrovirus. But what if it was another retrovirus, leading not to the predictable degeneration and death of untreated HIV/AIDS, but to a chronic, long-term disease, characterized by a loss of cellular energy and a lowering of the defenses of the bodyâs immune system, as in the slower-moving retrovirus HTLV-1? That would explain why patients presented with pathogenic coinfections, just as AIDS patients did, as well as with cancers that often seemed to develop after decades of being sick.
Cancers were, of course, associated with both the retroviruses HIV and HTLV-1, though with AIDS in the years before aggressive therapies they took a swier course, and AIDS was even once called the âgay cancerâ due to the unlikely appearance of Kaposiâs Sarcoma (KS) in younger gay men before AIDS was definedâwhen KS at that time was thought to primarily target older Jewish men.
Retroviruses are a family of ribonucleic acid (RNA) viruses, which contain the enzyme reverse transcriptase. The virus enters a cell, uses the reverse transcriptase to direct the cell to create viral deoxyribonucleic acid (DNA), which then integrates into the DNA of the host cell. The virus thus becomes part of the DNA of many of the cells of an infected person. Retroviruses had documented transmission through sexual contact, exposure to infected blood or blood products, or passage from an infected mother to her newborn child during gestation, delivery, or even breastfeeding. Retroviruses are transferred via body fluids, rather than by a vector such as a mosquito or a tick.
Mikovits thought about the infections, conditions, and cancers associated with HIV infection. HIV causes problems by damaging the immune system, leaving it vulnerable to other organisms that can cause disease. The majority of people infected by HIV first develop a flu-like illness within a month or two of infection, often suffering fever, muscle soreness, headaches, swollen glands, and chronic diarrheaâsimilar to the relatively common âflu-likeâ onset of ME/CFS. Latent infection can last from eight to ten years, giving some patients in the early years of the pandemic the illusory impression that something they were doing was staving off the progressive decline.
Similar misattribution has at times impacted ME/CFS patients due to lack of viable treatmentsâor, more commonly, led to many claims from outsiders of pseudo-cures, which can thrive when an illnessâs course is unknown. Some with HIV develop full-blown AIDS sooner, and others later. Usually after one has been infected for ten years, the patients suffer from night sweats, fevers which last for weeks, weight loss, headaches, and chronic diarrhea.
In poor nations, those with HIV/AIDS commonly develop tuberculosis.[16] HIV/AIDS patients are also more susceptible to salmonella, cytomegalovirus, candida, cryptococcal meningitis (an inflammation of the membranes and fluid surrounding the brain and spinal cord), toxoplasma gondii (a parasite spread by cats), and cryptosporidium (a parasite which lives in the intestines and bile ducts, leading to chronic diarrhea).[17]
One of the common neurological disorders is AIDS dementia complex, which usually leads to behavioral changes and diminished mental functioning. Mikovits couldnât help but think about the mental and cognitive changes associated with ME/CFS, such as memory loss, drop in IQ, problems on neuropsychological testing, word-finding difficulties, computation problems, and many others.
Considering all the clues and in light of early observations that ME/CFS had overlap with AIDS, it seemed they were on the trail of a retrovirus.
* * *
Early in her work at Petersonâs office, he advised her to be extremely discreet about whom she saw in the office.[18] She was starting to learn the politics of ME/CFS.
Mainly, that if you had it, you didnât want anybody to know.
Peterson, given his prominent role during the first modern outbreak of 1984â1985 in Incline Village, was known as the doctor to the rich and famous. Mikovits was amazed at the small but steady flow of Hollywood actors and professional athletes who came through Petersonâs office to get some relief from the disease.
If one saw somebody famous in the waiting room, the protocol was to act like the person was like any other patient there. That came easily to Mikovits, as she never fancied herself a fan of anybody, and even if she found herself in an elevator with a favorite baseball player, she would let him have his privacy. When she wasnât talking about science or doing her volunteer work, she was actually a quiet person. She knew this would no doubt surprise many of her colleagues, who often referred to her as âTsunami Judyâ for the torrent of words that could pour forth from her when she was excited about a subject.
Since it was summer, the Whittemores were typically in residence at their home in the Glenbrook neighborhood at Lake Tahoe. Past the double- gated security checkpoint, residents often drove around in golf carts and the houses all had names. The historic name of the Whittemore home was the Lake Shore House and resembled a two-story southern mansion, with an enormous wrap-around porch, a beach where one could swim out into the cove, and a private dock out back where Harvey had several boats.
Mikovits enjoyed the life at Glenbrook, often walking out on the dock just as Harvey was pulling up in his new thirty-foot power boat, while an employee grabbed the line. Harvey would tell her and anybody else who might be on the dock to go ahead and jump in, and theyâd speed off across the enormous Alpine lake. Sometimes they would get all the way to the California side, tie up the boat at Jakeâs on the Lake restaurant, have dinner and drinks (for which Mikovits never saw the bill), and then hop back in the boat and race home. It was a lifestyle to which anyone could become accustomed.
There were some townhomes located next door, and the Whittemores bought one to host their friends and their children. The townhouse had a high loft with large windows and a reading cove where Andrea would often sit with a book while her familyâs guests enjoyed the beach. Mikovits couldnât help but think it was due to Andreaâs condition and not wanting to provoke what many ME/CFS patients called âa crashâ caused by overexerting her limited supplies of energy.
Down the road about a mile and an easy walk was âThe Barnâ which was owned by somebody else but was where the Whittemores held most of their social events and political fundraisers. It was once an actual barn but had been completely renovated with nice wooden floors, a bar, picnic tables, pinball machines, basketball hoops like the ones at a county fair, antique Coke machines which would dispense the soda in their classic hourglass shaped bottles, and horse saddles and other farming implements on the walls displayed like pieces of Fine art.[19]
The Whittemores were also crazy about sports, a passion they shared with Mikovits. They had a skybox on the fifty-yard line for the University of Nevada, Reno, football games, seats on the floor for basketball, and season tickets for the Reno Aces, a minor league baseball team. Mikovits couldnât help but notice that Harveyâs seats at Aces Stadium were in front of those for Dean Heller, the Republican Senator for the state who served alongside Senator Harry Reid in Washington, DC. Not far away from those seats were those for Congresswoman Shelley Berkeley, who would unsuccessfully challenge Heller for his US Senate seat.
Nevadaâs circle of power was small, and now, working for the Whittemores, Mikovits had a front row seat to it all.
* * *
Over the Fourth of July holiday in 2006 Judy and David went to Hawaii, but Judy wasnât participating in the Aloha spirit. Instead she spent the whole time parked in a cozy cabana chair with her silver laptop from EpiGenX writing grant proposals. Loomis, Whittemore, and Peterson would then determine if they could fund the research or if they could present it to one of their wealthier patients who might be interested in funding. It was an abnormal life for a researcher, but one that was becoming common for many scientists. As government sponsorship of science declined, the public was often left to fill the gap.
As Mikovits settled further into her weekly routine, the Whittemores arranged for her to get a free dorm room at Sierra Nevada College, which was close to Petersonâs office. Occasionally, the Whittemores would treat Mikovits to a few days in a luxurious condominium at Red Hawk. The condos were large with lavish marble appointments and beautiful faucets and sinks. There were always big soft robes and towels as well as fancy hand soaps and lotions. The attention to detail and elegance was almost intoxicating. Mikovits could go down to the restaurant or swimming pool and know she would be waited on hand and foot.
Mikovits had a friend, a coworker from the National Cancer Institute in Frederick, Maryland, who lived in Reno and was a professor at the university. On a couple of occasions, the two would meet at Red Hawk and theyâd spend time at the swimming pool.[20] While Mikovits friend didnât personally know the Whittemores, she knew of them and told Mikovits that the Whittemores had a good reputation among her colleagues. Several times that summer the Whittemores took Mikovits to dinner at Davidâs Grill at Red Hawk. They might start off with crab cakes with California pepper aioli or just dive right in to a fettucine alfredo with a gluten-free pasta option. Many prominent business people and local politicians would often drop by the table to say hello to the Whittemores. Harvey would always introduce Mikovits as their âdear friendâ who was helping them with Andreaâs disease and his wifeâs institution. And a few times theyâd jokingly say they were âtrying to make her family.â
Their family was so admirably close-knit and accomplished that it was hard not to be warmed by those words, and Judy Mikovits was already starting to feel like part of the Whittemore clan.
* * *
The summer was ending and Mikovits wasnât sure what she should do, but she had to transition from the luxuriant summer of power boats and her young assistants into something more stable. She had an offer from a biotech company for whom she had been consulting recently. The company had some natural product drugs which were close to clinical trial for cancer treatment and they offered her a lucrative compensation package to become the vice president of research. And while she had loved her âsummer staffâ and the patients, she didnât exactly know if this institute would ever get off the ground. Then there was the problem of funding. The research community didnât seem to believe ME/CFS was a priority, so there were lots of appeals to wealthy individuals or families who might have a loved one with the disease. The begging for philanthropy is a constant curse of a maligned illness, but ME/CFS had the additional curse of patients being too sick to pound on doors or to march through the streets and shout funding demands through a bullhorn.
âHarvey, you canât let her leave!â Annette had pouted when Mikovits had told Annette she was considering another opportunity. âMake her a good offer so sheâll stay!â
Harvey asked Mikovits what it would take to keep her.
Mikovits said she wanted a five-year guaranteed contract (as would one see for a valued player in baseball) and the ability to keep their beach home in Oxnard because thatâs where they planned to retire. If she did take the job in Reno, theyâd want to become full members of the community by purchasing a small home or condominium. Harvey asked if sheâd withhold making a decision for a while to see if he could use his influence and make some things happen.
Mikovits agreed to give Harvey some time.
By a happy coincidence Frank and Sandy Ruscetti had been invited to UNR by one of their former colleagues from the NCI to give a seminar at the end of the month. Mikovits thought it would be a perfect opportunity for him to meet the Whittemores and weigh in on the long-term prospect of her continuing to work for them.
Not that she had taken his advice in the past. When sheâd met and married David, Frank Ruscetti had told her it was a bad time to leave the NCI and try to get into the biotech industry. He had advised against her signing with EpiGenX, and heâd also advised against going to work for the HHV-6 Foundation.
* * *
Reno, NevadaâOctober 31, 2006
As Frank Ruscetti and his wife, Sandy, drove to the Whittemoreâs house in Glenbrook, Frank considered how far his dear friend had come in the twenty-three years since he had hired the protein chemist who could not find a cell under a microscope.
But even though sheâd left the East Coast for the West, Frank and Judy still talked on the phone several times a week. In the years theyâd worked together Judy had become like family, occasionally baby sitting their only son so that Frank and Sandy could have a night out at the Shakespeare theater. Now in this momentous decision of her life, whether to take a job as the research director of an institute which hadnât even been built, she wanted Frank and Sandy to come and check it out.
Frank liked the Whittemores and felt the offer to Judy was a fair one. He was impressed with the Whittemoreâs friendliness, how unpretentious they were, and their dedication to finding answers for the ME/CFS that plagued their daughter.
It all culminated in a small, simple dinner with the Whittemores at the Lake Shore house along with Mikovits and her husband and Dr. Peterson and his wife, Mary. The Whittemores cooked spaghetti and garlic bread and tossed a salad while the guests hovered about them in the kitchen and played Trivial Pursuit. Mary was an educator and an aspiring playwright like Frank. Everyone was enjoying a casual moment so comfortable it seemed theyâd been friends for years instead of just meeting a few hours earlier.
After the meal was over, Frank took Harvey aside and gave him the third degree: What were Harveyâs motivations? What did he want to get out of this? Harvey replied that his daughter was now in her mid-twenties and had been ill since she was twelve years old. Money could do a lot of things, but if your child was sick, how much did that matter? His taut face belied a fatherâs anguish that his daughter had lost her most carefree years to illness, with no end in sight.
Harvey seemed to know a great deal about local history and Frank was pleased that Harvey had interests beyond business. Frank thought he glimpsed a man who relished intellectual combat when he asked Harvey if he knew where the namesake of the city of Reno was buried. Harvey knew the city was named after Union General Jesse Reno who died in the Civil War, but didnât know where he was buried.
âHis grave is in Frederick, Maryland, near the National Cancer Institute,â Frank told him, a little smugly. âHe died at the Battle of South Mountain. Iâve been there a couple times.â
Frank could see Harvey was slightly unnerved that he had known a bit of Nevada trivia that Harvey didnât. Harvey was clearly a man who didnât like to lose. at could be a good thing. They talked for a while longer and then Frank abruptly said, âHarvey, this has been a lovely evening, but I must confess to a sense of disappointment.â
âWhyâs that?â Harvey asked, slightly taken aback.
âIâve always believed like the French philosopher Balzac that âbehind every fortune lies a great crime.â And during this time youâve made a lot of progress in disabusing me of that notion.â
They had a good laugh over that. When Frank and Sandy were at the airport the next day, Judy called him on his cell phone. âWhat should I do?â she asked.
âTake the damned job!â he grumbled.
She followed his advice, as she said she would.
Frank later lamented it was the worst advice