Hilary Johnson on Annette Whittemore, Dr. Mikovits and the London Conference

Cort

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A great blog by Hilary Johnson on the WPI's presentations at the Invest in ME's London Conference. It really gives you a sense of how committed these people are - they are talented and they are in it for the long run. Very inspiring.

For the rest of the blog: http://oslersweb.com/blog.htm?post=623914

American speakers outnumbered Europeans at this year’s conference. John Chia talked about enteroviruses and antivirals, Garth Nicholson about chronic infections and the complexities of studying them. In some part because patients on several continents have so much hope invested in the Whittemore Peterson Institute in Reno, Nevada, and in part because the clinical and scientific presentations from this group seemed so high-powered, the triumvirate from WPI seemed to make the biggest splash.

Annette Whittemore was invited by the Simpsons to give the keynote speech. Daniel Peterson, a rugged fighter whose clinical expertise is probably unparalleled, gave a wide-ranging presentation about the clinical entity. Judy Mikovits is the WPI's chief scientist whose CV includes a twenty-year career in molecular biology at the National Institutes of Health, years during which she investigated mechanisms by which retroviruses dysregulate cytokines in the immune response, followed by years during which she worked on the development of drugs for HIV and HIV-related malignancies.

Whittemore compared her to a "race horse in a world of plowhorses," adding, "The rest of us just pretend to keep up with her."

The last presenter of the day, Mikovits delivered a lively, rapid-fire description of WPI scientific successes, which include, among other developments, two apparently complimentary and potentially slam dunk diagnostic tests for this disease.

One of them is a custom-made probe for herpes virus infections. The test was invented with the use of a viral array chip developed by a Mikovits colleague at the National Cancer Institute within the NIH. The herpes virus "chip" looks for five herpes viruses: Epstein-Barr virus, human herpes virus 6 and hhv6-A, cytomegalovirus and human herpes virus 7. It distinguishes “CFS” patients from healthy controls. [/I]

Said Mikovits, the herpes infections are “a consequence of immune damage.”

“If we all isolate the samples the exact same way, we can use these herpes chips worldwide,” she added, "and we can translate (the technology) to other cohorts."


A company called VIPDX has licensed the test for clinical use, Mikovits said, and she added that any other company is also free to license the test.

The other diagnostic test has to do with what Mikovits called the “immune component” of the disease, which employs chemokine and cytokine profiling. Vince Lombardi, a post-doc who has worked with Mikovits for three years, is the developer of this test, which so far seems capable of identifying "cfs" patients with 94 percent certainty. The test is "easily done," Mikovits said, "and can translate to any lab."

WPI looked at 118 "cfs" patients within the severe disease cohort, and 138 healthy controls. This disease, as we've known for some time, causes a cytokine/chemokine "storm." The data from this study supports a number of laboratory obvervations that already have been made in this disease. For instance, interleukin-8 is highly upregulated on this test and suggests a destructive feed-back loop is occuring. It's known that IL-8, as Mikovits said, "turns up cytomegalo virus, and cytomegalo virus turns up IL-8."

In another instance, the test finds that Interferon alpha is "down regulated." One of the roles of Interferon alpha is to stimulate NK cells and macrophages. Mikovits reminded the audience that in "cfs" there are deficiencies in Natural Killer cells and macrophages.

She added that even fatigued cancer patients, who may have abnormal cytokine/chemokine values, "did NOT have this signature...They had their own profile."

One of the many sobering facts that Peterson and Mikovits reported in London was that 77 of three-hundred members of a cohort from the 1984-1987 epidemic in Nevada have an immunological defect, called a clonal T cell receptor gamma rearrangement. The abnormality indicates, among other things, that patients are suffering from a viral infection they can’t clear. That alone is hardly a surprise to anyone who suffers from this disease. Perhaps more surprising, the defect is also predictive of developing lymphoma.

We’ve known since the early to mid-1990’s that, once this disease is acquired, the risk of developing lymphoma is significantly greater than the risk in the general population. There were broad hints of this phenomenon as long ago as 1986 when Peterson and Paul Cheney noticed increased rates of lymphoma occurring in the close contacts, specifically spouses, of patients with "cfs." Since then, there have been lymphoma-related fatalities in the Tahoe cohort, among them the well-loved and long-time “Tahoe survivor” Gerald Crum of Nevada, who died in the summer of 2008 of Mantle cell lymphoma, a B-cell non-Hodgkin's lymphoma.

Seventy-seven out of 300? That's stunning. Let's take a moment to consider that Wm. Reeves told a producer for ABC news in 1996 immediately after Osler’ Web was published that what happened in Tahoe in the middle-1980s had nothing to do with disease and everything to do with “hysteria”--and meditate upon the harm done in 25 years by Reeves and his agency and anyone who aided and abetted them.


Mikovits has forged a close collaboration with the National Cancer Institute in Bethesda, Maryland. The WPI counts scientists at the Cleveland Cinic and the La Jolla Institute of Allergy and Immunology among its collaborators, as well. In truth, this disease has never before engaged scientists of this caliber, nor has such sophisticated technology been employed in its study. The phrase "world class" comes to mind--a glossy, lofty phrase one rarely if ever hears used in discussions of "cfs" science. Perhaps we should all drop to our knees in prayer, or turn toward Mecca, or simply observe a moment of silence at some mutually agreed upon point in the future, in recognition of the fact that the major leagues seem to have arrived...on little cat feet.

Are Mikovits and her collaborators going to blast little CDC into smithereens? Is the nature of this game changing?

I'll just note that one of the research projects named on the WPI site has to do with Mikovits' collaboration with the NCI to search for novel viruses and co-infections in subgroups of "cfs" patients. The group has used a virus DNA microarray chip, a "Virochip," which looks for every known mammalian and avian virus, to screen a cohort of "cfs" patients with immunological defects and an increased incidence of Mantle cell lymphoma.

Say, how about that new study out of CDC about the use of alternative and complementary medicine by "cfs" patients? The one that conluded, "Compared to non-fatigued persons, those with CFS-like illness or chronic fatigue were most likely to use body-based and mind-body therapies. These observations have important implications for provider education programs and development of intervention strategies for CFS." That really moves the ball down the court, doesn't it?

Is it any wonder the students working in Mikovits' labs have given the CDC a new name? They call the place "Can't/Don't Care."

(ANNETTE WHITTEMORE)
***
I gave a speech the night before this conference at a banquet dinner. I sought to outline the history of the CDC’s involvement in this field. Given that I was preaching to the choir I got little, if any, push-back, but I was touched by my warm reception nevertheless. I especially loved the way Annette Whittemore, by happenstance seated directly in my line of vision and not more than ten feet from me, sat absolutely erect, her eyes boring into mine, a broad smile on her face.

And the following morning, I sat in the front row listening to her deliver the keynote address of the conference. There is no need to interpret or editorialize upon her remarks. Here is some of what she said:

Regarding the institutes’s unique style that makes it virtually impossible to conduct research there without getting to know people with the disease, she observed:

“It’s a very, very powerful tool to have a research scientist sit in the same room with a patient who is so ill, and listen to their story…In fact, we have to tell our young students to go home, take a break. It’s no wonder they’re so loyal and enthusiastic. Their mentor outworks all of them,” Whittemore continued, in a reference to Mikovits.

“Dr. Judy, as she tells patients to call her, has taken this field by storm…Her expert, broad training in Frank Ruscetti’s (NIH) cancer lab, and drug development in southern California
taught her to realize when something is so terribly wrong. She answered a plea to come to Reno.”


In fact, Whittemore added, Mikovits happened to be sitting in the audience in Barcelona in the Spring of 2006 at an HHV6 conference when Dan Peterson presented data on his seriously ill patient cohort in Nevada. Peterson described his patients with adenopathy, HHV6 infections--and a tendency to develop lymphoma. He asked for help directly from scientists in the room.

“The most important difference (in the WPI’s science) is the broad approach” its scientists are taking, Whittemore continued. “We are poised to discover the causes of this disease, who is genetically susceptible, and what treatments best fit those patients' individual circumstances.”

The WPI scientists are currently “collaborating with the National Cancer Institute, the Cleveland Clinic, and experienced scientists from fields of virology, immunology, cancer and AIDS,” she said, adding, “we intend to discover what has yet to be confirmed: the underlying cause of the disease, sensitive and specific bio-markers.

“For I am one who very strongly who believes that not every virus associated with M.E. is the cause of the disease, but rather the evidence of something that has been acquired, resulting in a highly dysfunctional immune system,” Whittemore continued. “…The disease manifests itself in many different ways, but one thing is evident—it is not going away on its own. Sticking our heads in the sand and pretending it doesn’t exist is not helping those who are ill. Calling it ridiculous names doesn’t make the suffering go way. And rationing funding of serious research isn’t going to stop our work. We may have to work longer and harder to find the truth, but in the end, we will have our answers. And those answers will not be simple or benign, but neither is the disease.

“I am, yes, a parent of a sick child, like many of you, but she is not a child anymore. She is thirty-one. She has been ill since the age of twelve. In the beginning, I thought she might be dying of some type of cancer, but now I know she acquired a disease that was little known at the time…we went through the typical rounds of specialists. We paid tens of thousands of dollars and were cleverly sent off to psychiatrists who, fortunately for us, recognized how sick she was, and sent her back to her doctors.

"There were no answers then, and for the last 24 years, too little has changed. We are still seeking accurate diagnostics and effective treatments yet we consider ourselves to be the lucky ones...She found her way to Ampligen and had eight fairly good years in Dr. Peterson’s expert and caring hands. I can’t imagine what it must be like not to have that alternative, that option.

“…So many of you wonder how a mom of five, a homemaker, and educator, decided to build an institute. I was frightened of the future I saw for my daughter. I was saddened at the tremendous suffering I saw in the patients’ eyes. And I was angry that so little was being done to help. Then I began to get involved—slowly at first.

“Soon, it became apparent to me that something had to be done—I knew that Andrea and others soon would have no doctors to take care of them. Visits to our local emergency rooms are constant reminders of the ignorance that still exists everywhere. I thought about all the patients who couldn’t afford the very treatment that might end their suffering.

"I knew that something had to be done quickly. Luckily, Dr. Peterson was of the same mindset. He knew that he would retire soon and so would his contemporaries. He knew that no new doctors were coming into the field. The work was difficult, the hours long. And the same obstacles that existed twenty-five years ago still exist today--with no FDA-approved diagnostics and no FDA-approved treatments. And very little money dedicated to biological research.

"We needed nothing else than a new medical center where doctors could be trained and patients could be treated...


"There was no map to follow—no trail to be blazed.
We dedicated the first years of this institute to research. We couldn’t wait until the government decided to help pay for all that work. The granting process can take years to pay off.

"We hired Judy Mikovits and Vince Lombardi to open the lab and create the first research program. Little did we know that Mikovits was capable of pulling together a world class team in less than a year. She organized the studies, the samples, added a few students, created collaborations and wrote the grants.

"But she was told not to wait.

"...[T]he institute’s researchers intend to answer questions such as, what infectious pathogen changes a once healthy immune system into one that can no longer keep normal pathogens in check. Why cannot one return to normal and fight off infections as before? Why can’t the body refuel its stores of energy? Why is one weak and nauseated almost every day? Why do they have seizures? If we can answer these questions in a cohort of patients like my daughter, we’ll be able to answer those questions for many others with similar diseases using the same techniques.

"I promise the institute will not stop until we find the answers to these questions, to bring effective treatments, to bring patients back to their friends and families, and finally to discover a preventative strategy that prevents others from falling ill."



(Annette's daughter, despite the best treatments they can find, is apparently VERY ill.)

For the rest of the blog: http://oslersweb.com/blog.htm?post=623914
***
 

KC22

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Thanks, Cort!!!

This was a great article. These people give me hope!!! It never ceases to amaze me that there can be these wonderful scientists/doctors working tirelessly for our cause and the govt. gives them no help...

I am going over to WPI and give my little contribution.

Thanks for sharing this with us...
 

Cort

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Good for you; it's taken a mother with a sick daughter with clout and, a top researcher (finally) and honestly, a cancer cluster to make this thing go. That cancer cluster was essential - it got the attention of Dr. Mikovits who, of course, has big connections at the NCI. We hear a lot about the bad stuff - the researchers that aren't interested - but we don't hear about the genuine excitement that many researchers feel when they do get into this field. I think they sense they can make an incredible difference here and they really feel for all the patients that have been so poorly treated over the years. It's great to hear that they are jazzed about the work!:D
 

Navid

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Mike's Dr and Dr. Judy

I don't know if it's just me or if others had a similar thought...but as soon as i read these posts....my mind yelled to itself: why isn't mike's doctor talking to dr. judy at wpi?

just askin'


thanks, lisa
 

Cort

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Not yet; the WPI is on an entirely different track. They want to produce something that insurance company's will pick up and make available to everyone. They are looking for immune modulators - which would presumably have a similar effect to Mike's treatment.

Annette Whittemore's daughter is very ill; she relapsed badly after she had to go off of Ampligen. We're keeping her informed of how the patients do in the trial. She's in a difficult position; I doubt Dr Peterson thinks much of homeopathy injections or neural therapy but she definitely wants to keep informed. Believe me, we informing her as much as we can!
 

Navid

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thanks for the response

as soon as i posted it, i realized it was naive (sp?) to think that this was even possible. pie in the sky dreamin....oh well : )
 

Cort

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I was naive alot longer than you were (months longer!). Still you never know. Some of the people going in there are well connected; they know Annette. If they can turn the table on their illness......Annette is obviously a very determined woman! Despite Mike trying to keep my feet to the ground I still have hope. Who knows what could happen??????:)
 

Andrew

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I'm glad I stumbled onto this thread. I was wondering how they found Mikovits. Her experience seems perfect for CFS. Turns out she was sitting in the audience when Peterson asked for help.