Wednesday, November 4, 2009


The Patient Advocate has known about the ImmuKnow test from Viracor for several years. Here are some quotes from the ViraCor site:

“ImmuKnow is a noninvasive biomarker of immune function that assesses cellular immune status by detecting cell-mediated immunity (CMI) in adult immunosuppressed patients. It measures the concentration of adenosine triphosphate (ATP) released from CD4 cells following cell stimulation.”

“ImmuKnow is the first and only FDA-cleared blood test to measure the vitality of a patient's immune system.”

This means that the test is regulated and that it does as advertised. The ImmuKnow test takes a small sample of blood and exposes it to a proprietary reagent (made by Cylex) that stimulates the CD4 cells. ATP activity is measured in these CD4 cells. ViraCor has created a scale (<225 – weak immune response, 225-525 – moderate immune response and >525 – strong immune response) and this test is a measurement of immune function. The ImmuKnow test is used for tracking immune function in AIDS management and in transplant patients who take immunosuppressant drugs. It is being tested in diabetic patients undergoing Islet Cell transplant. At a CFS conference, Dr. Dharam Ablashi (see picture above) suggested using it for CFS. The PA is unaware of anyone with CFS actively doing it - except for his daughter. A number of CFS patients were given this test and their average number was 281. Further information on the ImmuKnow test is available at the ViraCor website. The ImmuKnow test is a quick and easy blood test that can be done through various labs, including Focus Diagnostics.

Ablashi’s study of 2005, using Dr. Daniel Peterson’s patient population, tested the functionality of the global T-cell response using an FDA cleared response for cell-mediated immunity assessment (Cylex Immune Function Assay, ImmuKnow) - and these cellular responses were compared to patients with HIV and immunosuppressed transplant patients. The ImmuKnow test was assessed based on the amount of ATP expressed in ng/ml. All three groups has median immune function that was not statistically different. The transplant patients averaged 259 ng/ml ATP, followed by HIV patients at 263 and CFS patients at 281. CFS patients showed consistency with both the transplant and HIV patients - with the majority of patients in the median zone, followed by patients in the low zone, with the smallest percentage in the strong zone. More can be read in Ablashi’s and Krueger’s book Human Herpesvirus-6.

Dr. Dale Guyer uses this test in his practice and has a positive feeling about it, believing that the numbers rise as the immune system becomes stronger. This Patient Advocate is not aware of other CFS doctors using this test. It is an easy blood test and relatively cheap and fast - $180. Whether it is useful or not, is anyone's guess.

Sunday, November 1, 2009

Judy Mikovits and serendipity – how lucky we are.

The Patient Advocate took a picture of Judy Mikovits from the 2009 UK conference DVD and gave it to his daughter, saying, “This is the woman who is going to make you well”. My daughter put Judy’s picture on the wall of her room where she rests.

The Patient Advocate first saw Judy Mikovits at the CFS conference in Ft. Lauderdale, FL in January 2007. She was presenting a paper on “Incidence of Chromosomally Integrated HHV-6 (CIHHV-6) in a Cohort of CFS patients with Clonal TCR-g and Lymphoid Malignancies”. The PA did not take any special note of this lecture except to note that Dr. Mikovits talked like a typewriter.

In April of 2008, the PA saw Dr. Mikovits give another presentation in London. The PA’s report at the time said this: “The last major lecture was an incredibly high-powered presentation by the American researcher, Dr. Judy Mikovits. She is the research director of the new Whittemore-Peterson Institute of Neuro-Immune disease in Reno, NV. In a lecture of which I understood next to nothing, she gave every indication that this institute has the funding, the drive and the independence to reveal some important elements of this disease. She also indicated a no-nonsense willingness to cooperate with others world-wide in this struggle. I have seen many scientists make presentations, and this gal was amazing. With this presentation, along with the others, there was a clear picture that the Americans were back in the UK doing what they do best.”

Another attendee of this conference wrote this: “Dr Judy Mikovits is Research Director of the Whittemore Peterson Institute in Nevada and she presented a most enthralling presentation on the focus the Institute's research although most of the technical detail was way over my head. The research looks at abnormal inflammatory response to viruses and part of it piggybacks off Dr Kerr's work.”

Of the Reno conference in 2009, the PA wrote this: Mikovits, the director of the Whittemore-Peterson gave a slam-bang talk, one similar to what she delivered in the UK last May. However, this time she had less time and she really had to whirl through it. This gal is generally accepted as being a serious researcher and in a position to get some results. She is obviously bringing money and people over from her former research field in cancer. Here is a quote from Judy Mikovits that surfaced on Cort Johnson’s site after the Reno conference: “We have a piece of data that would just knock your socks off but I’m not showing it. “

The PA has developed the habit of sitting through days of scientific or quasi- scientific lectures. It is possible to nose out the more scientifically interesting talks, even for a non-scientist. After awhile one can sense the “cannon fodder” talks that dominate all of these conferences – those happy little academic talks that are going to go nowhere.

Consequently this Patient Advocate was ready to really listen to Judy Mikovits in May 2009 at the London CFS/ME conference. “Dr. Judy Mikovits, who astonished so many folks at this conference last year, was back for another lecture. She made her usual complex and far reaching talk, most of which passed over my head. (I should have studied biochemistry.) Her work at the Institute involves sub-setting CFS through gene array chips and cytokine testing. The Institute is moving very fast and I get a sense that specific information is going to emerge here sooner rather than later. Certainly talking to Annette Whittemore and hearing Mikovits and Peterson makes one sense something is afoot, although they are smart enough not to say anything. During the question period Dr. Mikovits was asked if they had been working on a specific virus involved in CFS. She coyly answered, almost in a whisper, “yes” - and then she followed up that there is a novel virus not previously associated with CFS and that the WPI had submitted their research paper for publication at Science magazine.”

And then came October 9, 2009 and the world of CFS/ME turned.

The connection between Judy Mikovits and the Whittemore-Peterson Institute was a bit of serendipity. Dan Peterson was giving the last lecture of the day at a HHV6 conference in Spain in 2005. Judy Mikovits was in the audience and responded to Dr. Peterson’s plea to the audience (during the question period) for help with a problem that he was having. Ten of his CFS patients had developed mantle cell lymphoma and he was stumped. The following comes from an interview with Mikovits on Cort Johnson’s site: “These people were getting lymphoma and they were getting it before anyone gets lymphoma and to me that says virus.” “My background is in virus caused cancers. My training for over 22 years at the NCI was in how viruses dysregulate the immune system and cause disease – cancer. So when he told me to come meet with him after the talk I beat my way up to the front of the room because it was the only interesting thing that I had heard at the meeting, and I said, “There is something there, that’s a smoking gun”, so I gave him my card, told him that I’m interested, told him what I thought was going on, and he and Annette invited me out to Reno. Within two weeks of that meeting, they talked about setting up a summer research program.”

Judy Mikovits showed up in the right place at the right time. However, she is not solving this problem on her own. Many physicians and researchers have plowed the ground ahead of her. She is the beneficiary of many efforts.. It is a bit like volleyball. The ball is controlled, set up and then spiked. Judy is the spike.

From all accounts, Dr. Mikovits has great empathy with the CFS/ME patient population. All good artists have empathy for their subject. An artist, as well as a scientist, benefits from “attachment to the subject”. This empathy, this connection. does not come easy, and is not taught in schools. Not everyone has it. It is inherent in the personality of the individual. Dr. Mikovits seems to “have it”. A recent article in the Reno Gazette Journal had a personal bit about Dr. Mikovits: "My grandfather was dying of cancer, and nobody would talk about it," Mikovits said. "One day I said to him, 'Don't you know you're dying?' And he said, 'Don't say that. I don't want your grandmother or your dog, George, to know." "He was dying of cancer, and nobody would talk about it. That's what bothered me most."

Annette Whittemore has spoken of how much Dr. Judy Mikovits lab collaborators enjoy working with her. “Dr. Judy”, as her students call her, is both disciplined and relaxed, with a good sense of humor. “Dr. Judy” works long hours, setting the tone and direction. Others follow suit.

A recent article in the Reno Gazette Journal has a number of good quotes from Mikovits.

About the moment of truth with XMRV: “It was January 22, and we were in a San Diego restaurant called the Yard House,” said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world’s leading virologists. “We kept waiting for them to say something,” Mikovits said. “I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, ‘Well, this is going to change their world.’” 
And it has.

About getting traction: “They want us to send them the (XMRV) retrovirus so they can screen huge libraries of compounds and see what they have that could work,” Mikovits said. “They already have drugs to treat HIV, so they could redesign a compound for the XMRV virus. Since they already have FDA approval, they could get something out to people fast.”

"I've gotten more than 100 e-mails from physicians, and I've gotten calls from the head of the Mayo Clinic and the clinical director at Sloan-Kettering," she said. "Those people wouldn't take the time if they didn't think this was a significant finding."

"We've got about 500 samples from the United Kingdom, and we also were approached by the head of the syndrome organization in Spain," she said. "We eventually expect to collaborate with many other countries: Norway, Germany and others. Everybody is asking if we can test their samples and asking how they can get in the clinical trials."

About the Barcelona presentation in October 2009: "They applauded before I gave my presentation," she said. "It was such a surprise, because they never applaud before a presentation."