Dr. Judy Mikovits talks about her new book Plague, the discovery of gamma retroviruses in ME/CFS, smarter vaccination, scientific censorship, and more
Before jumping into this episode, consider First reading Plague and listen to an interview with Dr. Mikovits on Fearless Parent Radio.
Full Text Transcript:
Dr. Craig: You’re listening to Spoonie Radio. I’m your host Dr. Courtney Craig. My guest today needs no introduction. I am joined with Dr. Judy Mikovits. Judy has spent her life training to be a cancer research scientist to honor her late grandfather who succumbed to the illness. In her 35 year quest to understand and treat chronic diseases, she studied immunology, natural products chemistry, epigenetics, virology, and drug development.
She rose to become a lab director at The National Cancer Institute and later director of the Cancer biology program at Epigenix Pharmaceuticals. In 2006 she became involved with Chronic Fatigue Syndrome and Autism research. She has published over 50 scientific, peer-reviewed papers.
One paper alone stands out. And that’s a paper from 2009 that her and her team published in the prestigious Journal of Science, which shook the CFS community.
The details of the story and the aftermath are outlined in great detail in her new book Plague, which she co-wrote with Kent Heckenlively. On this journey, Dr. Mikovits faced the scientific prejudices against Chronic Fatigue Syndrome, wandered into the minefield that is vaccination and autism and through it all, struggled to maintain her faith in God and the profession to which she had dedicated her life. This is the important story for anybody interested in the peril and promise of science at the very highest levels in our country and that’s exactly what we’re going to talk about in today’s episode.
Thank you so much for being on the show today Judy.
Judy: Thank you Courtney, I appreciate it.
Dr. Craig: Now before we get into all the details of the book and this story, I want to start and really cater to our lay audience who may be does not have a good grasp of exactly what your findings were. So in your book it reads like a novel in a lot of places but it does have a lot of heavy scientific jargon in it as well. So I think is really important to lay the foundation for the rest of the story and the weight and the magnitude of this discovery. So if you could start by just giving a clear explanation to our lay audience about this replication competent virus; XMRV.
Judy: Well, that’s the subject of the entire two years of writing the book, that’s why we wrote the book, because what we learned we didn’t actually set out in any way to identify a retrovirus. Chapter 2 really describes clearly a plague, how I got involved, how I first learned about the patients through contact in Santa Barbara California who had a sick child.
And as I looked at the disease and met Dr. Peterson and we discussed at length, the cancer patients in his particular cohort, and what I saw in my own community of Ventura California, as a cluster of not only neuro-degenerative diseases but lymphomas, leukemia’s, mantle cell lymphoma, that prior to hearing about… prior to 2005 or 2006 which was very, very rare. And here I was seeing in my own cancer community and in my various support groups in the community I was working with at Epigenix, a lot of mantle cell lymphoma, a lot of multiple myeloma, both.
And what I saw when I went to and spent the summer of 2006 in Dan Peterson’s office, that’s detailed in chapter 2, was just a myriad of very heterogenous diseases, opportunistic infections. I write at one time in the book, when I first started looking at this I called my longtime colleague and mentor Frank Ruscetti and I said, “Frank, what would you say if I told you I was sitting in front of a 9-year-old and 14-year-old with shingles?” And he said, “Oh, don’t be ridiculous Judy, they would be AIDS patients.” And I basically said, “Exactly what I was thinking.”
So we started looking, we used the systems biology approach and really looked at every aspect, we looked at their methylation machinery because that’s what epigenetics was all about – if you change the transcription of the gene, you’ve changed that gene. So keeping things silent and latent have having tumor suppressor genes go off, promoting a tumor whereas oncogenes get turned on when they are hypermethylated as to endogenous elements lines, sign elements we used to call them jumping genes.
So we looked at that methylation, we looked at the immune system and at the same time we did a whole genome essentially of pathogens screening technology at the time, very similar to the one that Bob Silverman had used to identify sequences of what they later named XMRV. So I knew of their work because of my work in aggressive prostate cancer. And cancers in general with cytokine driven tumors and immune suppression.
We have been doing all of this in a drug company I was working with that was designed to cure the problem by making the immune system healthy again. So that was the original look in designing the five year plan, decided to look at the very well-defined cohort which Dan Petersons’ was to come from around the world but in areas where they were the sickest. They were associated with these various immune dysfunctions. So clonal rearrangements of certain subsets of T cells, which he had described when I first met him at the first meeting.
You’ll love chapter 2 because this really goes into the meat of it a patients and readers can really understand what we were thinking at the time. And it was actually misrepresented later on because you can’t possibly tell the story because there was nothing linear about our thinking. It was – look at the patient, see the heterogeneity of this disease and begin to track down clues whether they be environmental or whether they be pathogen.
In fact one of my earliest hypotheses, since the patients came to Nevada, is Nevada is a silver state so there is lots and lots of heavy metals in the water – arsenic. Well we used arsenic trioxide as a cancer therapy in the mid-and late 80s to de-methylate genes so that the tumor suppressor genes could actually have the cells differentiate out. At the time they were looking at a cohort of children who were developing cancers there in an area of Nevada.
And so one of the initial hypotheses was in fact the heavy metals in the environment where causing the activation or the inappropriate expression of various genes. And that’s still a viable hypothesis because in that cancer cluster with the kids, many of the adults could have been diagnosed and then several were, with Chronic Fatigue Syndrome, ALS, some of the neurodegenerative diseases that have been associated with retroviruses but none ever identified.
Dr. Craig: Right, I want to spend a lot more time talking about those environmental triggers later on in this episode or follow-up episode. So let’s kind of take a step back here. XMRV was originated in the lab and we passed human tissue through an immunodeficient mouse. So what happened there?
Judy: We isolated gamma retroviruses where we isolated them from patients, from Dan Peterson’s group with both cancer and CFS, very sick patients, extreme immune deficiencies and methylation defects as I mentioned. We isolated viruses, we got electron micrographs on those viruses and we found gamma retroviruses.
So knowing XMRV literature and we did a microarray and as I said, and in fact XMRV did not come up in that microarray in part because sequences specific to XMRV were not on that microarray. But there were family members of the virus, one known as Spleen Focus Forming Virus (SFFV) and that virus had sequences that came in our array.
So we went to Bob Silverman and Frank Ruscetti and we showed them the data there in January 2009, Max Pfost in the lab had done some preliminary PCR experiments and of course this is really well described in the book and we didn’t see exactly Bob’s sequences, but we were getting things that we explored and when we sequenced them, they looked like family members. So we all agreed in January 2009, we signed a collaborative research agreement to look at this and see if in fact the viruses we isolated were XMRV that Bob was looking at in the prostate cancer patients.
And I wrote a perspective article that was published a few years later to describe all of the thinking that I’m talking about now. So as we published the paper, this is chapter in the book known as The Silverman Mistake. It’s something like chapter 18 or 20, and what we did not find until late 2011, as we were looking at why others could not design tests in PCR proteins or sequencing tests to detect XMRV, the original Silverman clones. See he cloned the viruses he identified on the microarray. We isolated the viruses and there is a huge distinction.
Dr. Craig: Important distinction, right.
Judy: Very important distinction. As I had said even as early as January in 2010 at an Invest in ME meeting in London and I said it is very, this was in a debate that I believed we filmed. And I said, “Oh no, it makes all the difference in the world, this is the first human retrovirus that I cloned before it was isolated.”
And so at that time things were moving pretty fast and it just sort of went away. But what has been lost but which I never failed to bring up in every single slideshow, and in fact very intelligent patients send is, people would say to me, “Judy, you have made a mistake in figure 2 of your paper. And so in figure 1, you identified sample number 1118 as completely negative by PCR and yet in figure 2, you show proteins isolated from that patient which are very strongly positive for gamma retrovirus, envelope and gag proteins.”
And so that antibody that we used throughout that paper, we used several of them but the key antibodies, the monoclonal antibody known to us as 7C10. And 7C10 as I said in every talk, was developed and characterized by Sandy Ruscetti who worked on Spleen Focused Forming Virus and it’s pathogenesis and literally throughout her entire 35+ year career.
And so that antibody was fully characterized to recognize all known polytrophic and xenotropic retroviruses and it was the antibody around which we developed all of our tests. So it recognized XMRV and you can look at other antibodies and the recognized XMRV but not the other retroviruses. Or they recognized our retroviruses, but not XMRV.
So when you have an antibody that recognizes all known of these viruses and in fact we use that antibodies in the Lo & Alter study and we would compete our immune assay, we would compete that flow cytometry assay described in the original Science paper that is we bind it with the patient’s serum and you would see reactivity indicating there was an antibody there. But if we mix 7C10 with the patient sera then it would block the binding showing they were looking at the same epitope or the same… They were seeing the same thing.
So clearly it was a cross-reactivity with XMRV-Silverman because the diagnostic test assays designed by Abbott and Company, never recognized the single positive in a human population. So that should have been our clue back in the summer of 2009, after we had submitted our paper that in fact, we were looking at different viruses. And so as I said in the chapter well, well detailed, our mistake was that the virus we isolated wasn’t XMRV-Silverman.
But that doesn’t mean we did not isolate viruses and we still had evidence of those viruses as I show quite clearly in the talk in Ottawa, where I discussed all of the methylation defects, the latency, everything. And there very much still is and was both immune deficits in these patients and methylation deficits, and we did all of these samples from the same sample, from the same patient at multiple time points.
And we published much of this immune data that was done by my PhD student Deborah Gehtz, she was in the lab from 2008 until she graduated in October 2010, and this was the basis of her thesis research. So she took the samples where we found evidence of XMRV, of a gamma retrovirus, which is what I called them HGRVs, human gamma retroviruses, because they were indeed xenotropic.
So people don’t understand, until you go back and look at a TED talk that Joe DeRisi gave, I guess it was in this spring of 2005, well before I had even heard of Chronic Fatigue Syndrome, he gave this talk describing this new technology and the power of this technology to identify new pathogens, new drug targets, new things. And he said at the time, “We named it XMRV,” that stands for “Xeno” not in a mouse, it’s in a human, it’s a different species. MLV-related is the “M”, MLV-related retrovirus so MRV retrovirus.
So it’s related to the mouse leukemia viruses but the sequence work that we did and they did and we showed in great detail in the July 22 meeting, I forgot which chapter it was in the book but it says “The Invitation Only July 22 Meeting.” And what people don’t realize with this paper and the publication of this paper, it was submitted May 6, of 2009. It was on June 4, we got the review asking us, the review is one of them said, and “I’m 95% convinced. Show me an immune response.” And Bob Silverman said, “Boy, I hope you can do it Judy and Frank, because Abbott can’t do it.”
And so we developed, with the help of some people I won’t name in here just in case, one of my former technicians and Frank’s technician, we worked very hard for the next 3 to 4 weeks to design that test that confirmational test that we show in the paper. And we in fact showed that that could detect an immune response. And we resubmitted the paper July 6, to get a response and whether or not it would be accepted.
They also asked us to show the association with RNAseL, which there was none so we included those data to show that there was no association. So basically most people don’t understand, when a scientific paper is under review, the reviewers will ask for things that will convince them. So one reviewer said, and they are all anonymous said, “I am 95% convinced, show me an immune response.” And we did.
And unbeknownst to us at this time, there were other papers being submitted, one on prostate cancer showing proteins in the tissue with an antibody assay that were similar to the proteins we had shown in our paper. There was a study done by the Japanese that suggested there was some of this in the blood supply in Japan. A number of papers suggesting in fact that XMRV, or whatever you wanted to call it, might be a real problem.
So they called this special invitation only meeting at NIH and because Frank was who first author on this paper he said, “You really need to invite these folks.” Because one of the reviewers said, “I don’t know what CFS is but it seems lost on these authors that 3.5-7.5%, evidence of positivity and the controls, is 10 million Americans.”
So they didn’t care much about this disease CFS. What they cared about was, there is a retrovirus loose and 10 million Americans have it. Now compare that to HIV at the height of infectivity which was 1995, only 1 million Americans, less than 1%, had this disease; and HTLV was less than 0.1% Human T-lymphotropic virus, the virus Frank, the first human retrovirus isolated by Frank Ruscetti so also associated with the very aggressive cancer and neurological diseases.
In fact it’s causative for that cancer so if we ever want to talk about the cause word, yeah, yeah, yeah, the “C” word. So it’s important about all of this is the viewpoint we are coming from, Frank Ruscetti, the father of human retroviruses arguably, me starting in his lab at age 22 or 23 and looking at AIDS patients and then looking at CFS patients with shingles, with opportunistic infections, no healthy immune system spits shingles at a 15 year old.
That for me as Frank said, they would be an AIDS patient. They have an acquired immune deficiency syndrome. Acquired from what? Nobody knows but certainly they are genetic susceptibilities. If you don’t have functioning RNAseL, you do not degrade viral nucleic acids – if you have BRCA-1 which is the cancer 1 gene. And it’s really important to think about all of these genes because we thought about this, this breast cancer 1 gene, BRCA 1, but it’s actually a DNA repair gene. So if you mutate your DNA with ionizing radiation chemicals, even integration or reintegration of various expressed retroviral elements, you can’t prepare that, that chain, you can’t prepare that if you are born with the BRCA-1 mutation as in the Ashkenazi Jews and some other populations that are different cultures.
We know the Swedish have Sjogren’s syndrome, also an autoimmune disease, so there are various cultural genetic susceptibilities--the familial hereditary prostate cancer gene 1. Only in 2003, when we sequenced the genome did we realize that that was RNAseL, and then we started looking at women with aggressive breast cancers just like men with aggressive prostate cancers because they can’t degrade viral nucleic acids of all times.
So this is why even if you don’t understand data, as in that second figure of our paper, you leave all the data in the paper, we never cherry-picked the data, there was never anything done wrong. As I wrote--that’s why the chapter was called The Silverman Mistake.
Mistakes in science and in this particular study, we learned things we could not possibly have known about the exotic biology – a good study raises more questions than an answer so being wrong about this sequence we isolated from these patients, we learned the viruses can aerosolize. We learned that a lot of the cell cultures learn use in technology, could actually have these things spreading through the air.
When Frank and I read the Gazdar & Zhang paper in July 2011 where he showed how these things could aerosolize and contaminate things in an incubator where you have a shut flask in a .1 µm filter, you never opened it up! We put 10 flasks in an incubator and we put XMRV next to it, all of them shut. We left them there for 4 days un-touching them, we brought them out and 3 of the 10 had XMRV in them.
How does that happen? Nobody could understand that so we learned so much and it changed our thinking about how we make some of our biologicals; the safeties of drugs and the extra level of protection we need to go through to protect laboratory staff that might be susceptible; like if you have a history of cancer in your family. You could actually develop these cancers working in the lab because you can, you don’t have the immune mechanisms, apoE pathways, the RNAaseL, BRCA 1 for degrading and for preventing damage by these agents, they are no different from toxins in that regard.
Dr. Craig: Right and the book draws an excellent parallel. I forget what chapter it is, it talks about the historical timeline of vaccine creation, particularly the polio vaccine, and that was one of my favorite chapters in the book because that was very informative. And especially when we think about the history of Chronic Fatigue Syndrome and look at these little clusters and a lot of them are affecting healthcare workers; and it’s really just kind of connected some pieces of the puzzles there potentially, now that we understand these virus can aerolize like it does.
Judy: And these viruses, we always say these viruses because again when you tailor the assay only to find the sequences XMRV-Silverman, you won’t find it. I showed a slide a lot if I am happy to pop up on our website or anywhere else, share it with you, I’ve shown it since April 2010, and it was a sequence across individual clones from a patient and that was a patient who actually did quite well on antiretroviral therapy. Nobody gets cured, we don’t use the “C” word, cause or cure but actually had a remission of disease of sorts later on.
And so what we did with the punchline of that slide, was the major strain of HGRV or XMRV in this patient is unlikely to be XMRV-Silverman. It’s a different Xenotropic MLV related virus. There was no doubt it was xenotropic, we pull it out of individual clones of the human being, it couldn’t possibly be contamination of any kind and the sequence was undoubtedly not from any clone, not XMRV-Silverman. So those pieces of data, that’s why we wrote the book – I will just use the word, “crimes.” that’s the crimes against the patient population. Just because we don’t understand science to make a spectacle, to make a mistake about a patient population which it was very clearly directed against you, not prostate cancer patients, not anybody else but this patient population.
And I think Hillary Johnson said it really nicely in her foreword, she interviewed a scientist at that meeting in 2013 from NIH and she said, “What does the NIH think of us?” And the scientist spent a long time and I was sitting right next to them, and they said, “They hate you.” And so what Hillary writes, “And so this is about misogyny?”
And then another comment, a quote in the book is somewhere in the area of October of 2010, Frank Ruscetti was called into a meeting John Coffin’s office where he said to Frank angrily, “Science (the journal), started this and Science is going to end this.” So when you look really, and I think that is what Frank said, “Really John? What did they start? We’re doing an honest investigation of a very sick, suffering preparation of people. What are you talking about?”
But you could look at what was done at this Science article that came out on September 22, that the Blood Working Group paper was never about an association. It’s – do we have an assay or do we not have an assay? The conclusion about should it have been, “No, we don’t have an assay.” Clearly we don’t have an assay, not there is no association with CFS. The study was not designed to do it, it didn’t do that.
And yet Science engineered, they put this paper through so fast. I mean I saw the first version of it somewhere in the neighborhood of September 1, and it had to be published to coincide with the first day of the Ottawa conference where I am going to debate John Coffin about the presence or absence of gamma retroviruses in this human patient population. And so Science and Hillary Johnson also described this.
So Martin Enserink of Science talks to me in our retrovirology conference in Belgium, and this is described really clear in her foreword, and this conference was described in a different part of the book. And she said he followed her (Judy) around for 2 days. She talked endlessly (as I often do) and I failed to see one word of what she said in this story. This story comes up with a big X, false-positive, and they brutally attacked not only the institute but the patient population. There is no place for that in science, there is no place for that anywhere.
And so we have to ask ourselves, that’s why the book was written. Why was a mistake made in prostate cancer? There are mistakes made all the time and we learned a great deal. Why was my career ruined? And the next article that was forced, “Oh, let’s get a mug shot of Judy from jail.” Well the judge denied it. The judge in Ventura denied it. Said, “I failed to see how an innocence woman mug shot is going to help the community.” And that’s what John Cohen said.
John Cohen and Martin Enserink, he is there in the courtroom saying, “Over the scientific community really needs to send this message.” What’s the message? “Don’t go there or your life will be ruined. Don’t dare study these retroviruses”? And then of course we’ve all talked about the quote of Lipkin who in fact found 85% of Montoya’s cohort to have retroviruses, but we are not going to go there given what’s happened before.
That was an ethical response by Ian Lipkin, that was a political response by Ian Lipkin. So when you look at everything that was done, all you can say is misogyny? This is because women and children are suffering and you hate them because you can’t figure it out? Or in fact you might have missed something infecting families as I think Kent wrote this really well in that chapter, “Maybe by honest effort of trying to cure one disease, we created new diseases.”
Unwittingly but we as a population and public health owe it to a community with diseases debilitating economically, everything, you know it. It is horrid to go from doctor to doctor and all you are told is, “You have exercise anxiety.” Oh my God! We don’t tell an AIDS patient exercise!
Dr. Craig: You can’t turn on the news today without hearing about this ongoing debate about the vaccines. And I really encourage people who are tired of hearing that message on television to read this book and really get an informed kind of look at it because this part of the book was frightening. And when you first introduced this research to a room full of scientists, I mean jaws dropped, and it’s kind of like a Frankenstein scenario and what have we created? And what is the major implication and it’s really frightening.
Judy: Exactly and as we talk about these vaccines, some of the techniques that were used to make XMRV go away as it were with the press, was Science, was Science (the journal) tailoring, unilaterally retracting a paper where the only thing that we had ever demonstrated was wrong, was the sequence and those first figures.
So unilaterally retracting, hammering so it could never be looked at – XMRV doesn’t exist, XMRV doesn’t exist… well what about everything else? And it brings me to the CDC--so Thompson is a scientist who discovers that in fact the MMR vaccine given to black children, black boys under the age of 3 would have, in fact, a 5 time increase risk of developing autism. And yet it was covered up for 13 years. They didn’t understand those data so they covered it up, and now that’s the subject of Congressional hearings as he’s come out with whistle blower status. I call him a reluctant informant.
So what’s important about that is what I immediately said is, “Oh my God, those people: black women, black men, hereditary prostate cancer gene number 1; if they happen to be among the 10% of the population that has that single nucleotide polymorphism (snp) that makes them less able to degrade viruses, well giving any vaccine to that child, he is immune deficient. We don’t give it to AIDS patient, which is clearly explained in the book. And Chapter 5 was the fascinating chapter.
Dr. Craig: Yeah, it really is. It’s a really interesting historical perspective there. And this is the issue now with this vaccine debate, is not that you anti-vaccine, is not what anyone is saying here we need to be smarter about vaccination. I know many in the CFS community have said that they think or believe that a vaccine was their trigger and that actually could have been the case for my own in this as well.
And you see this in the literature, there is papers written about vaccines triggering fibromyalgia-like illnesses, chronic fatigue-like illnesses. So we need to be smarter in our vaccination and determine what group and what populations are going to be susceptible genetically to react poorly from them.
Judy: Absolutely, and one thing that is lost in the debate is so everybody is talking about the measles vaccines. Well of course in the measles vaccine, it was demonstrated to be safe and efficacious. But what happened is we did, we combined measles, mumps and rubella and that was never tested as a combination as efficacious. And now you’ve complicated the problem for somebody who might have an underlying immune deficiency in that you are looking at a square, triangle, and a circle.
Your immune system has no idea what to do with that and so it’s the timing, giving young children. Remember what I just said about the MMR in little boys under 3. Let an immune system develop before you give a vaccine. We give hepatitis B vaccine to 24-hour old infants and I always say, I have been an immunologist for 30 years and I have no idea what a 24-hour old immune system is, what it looks like, and I defy anybody to tell me that.
So you set them up with hepatitis B that happens to replicate through a reverse transcriptase, something that could continue to be expressed and aberrantly express other genes and you set up children with that when they are born? For me that’s incredible! Who are you protecting? Well, you are protecting the hospital from a lawsuit. And so it’s really has to stop and so this mass media… hammer people for being anti-vaccers, we are not anit-vaccers. We say use some sense, one antigen at a time, we went through it in the book.
We always, he called UCSF and say, “How do you vaccinate children of HIV-infected people? Well, you don’t vaccinate them with multiple antigens and you wait until they are old enough so that they have developed a good methylation, good epigenetic pathway, a good strong immune system, and then they can have an appropriate immune response instead of maybe setting up an auto-antibody situation or an autoimmune response which you won’t see in a baby and an infant.
Dr. Craig: No, it will come out much later.
Now the title of the book Plague, when I first heard about this book and saw the title and I imagine a lot of people thought, “Oh, this is about chronic fatigue and saying it’s a plague, but really I think the meaning of the title here is the plague in science and the way that science is biased and all of these conflicts of interest going on. So could you talk a little bit about the background for the title of this book what you did?
Judy: Well again, Kent and I discussed it, it was Kent’s idea and that’s exactly it. It’s a plague of corruption. It’s a situation where the entire medical research system is broken. As I mentioned, you can’t succeed and this is detailed that is why we talked about my early life and how you get grants and how it matters to work with the right people and what you are doing.
Well we are censored from the beginning. When I wrote the very first grants with Jonathan Kerr in 2007, late '06 and '07, to study this, we naturally went to his gene expression work and we also went to my background of saying, “We are going to run an unbiased pathogen array, a viral array, because I am not a bacterial microbiologist, I am more a virologist and that’s what I know.” So we are going to run a viral array and we are going to have it unbiased and look for everything.
And when we wrote that proposal to the CFS grant thing which is reviewed, it’s been a big problem in the CFS community. It’s reviewed by psychiatrists and the only virologist on the panel to review the grants is a Jim Jones of the CDC. And he basically writes, “Oh you idiot, don’t you know retroviruses have nothing to do with CFS, or any virus has anything to do with CFS?” And of course there are anonymous reviews but then your grant doesn’t get favorably reviewed and you don’t make a living. So you can’t have a job unless you are a good little girl or boy and you follow what you are allowed to study.
And that’s not how Frank Ruscetti trained me and any question you want to ask as long as you support it with data and that’s how you change paradigms, that’s how you find new things. Fluge & Mela met with them in 2010 and they said to me, “Judy we are really sorry. We don’t see XMRV.” I said, “Hey don’t worry about it, you made an important discovery because you are seeing the same B cell abnormality we are seeing in certain subgroups,” not in everybody, of course not.
So using these kind of technologies can show you sub groups that say, “One subgroup should get this type of immunotherapy. One subgroup should get to this type of immunotherapy. These guys should never see this and these guys should never see that.” So it allows you to personalize medicine as it were in a complex disease which is exactly what we do with cancer. And certainly no single agent, you need multiple therapeutics.
Dr. Craig: And that’s one thing I learned from reading the book is just this whole process of scientific publication, it’s very eye-opening and it’s like an expose of the corruption, the censorship, the misogyny perhaps of this community which was really surprising and I think a lot of laypeople just have no clue about. But there is now so much distrust. And when we think about the scientific method and the scientific process we would think that yes, we would have some rigor to actually uncover these ideas no matter how far-fetched, or no matter who they affect but that’s just not the case.
And one thing that struck me about you in this whole story is through it all you have been very transparent, you share all you information on your websites, you speak about it at conferences all the time, and you maintained your integrity through all of it and the other characters in this book, I don’t know if I can say the same thing about. So you are applauded for that by me as well as the whole community for maintaining your integrity and holding onto this hope of what science truly is.
Judy: Holding onto my integrity, it’s no question. And so that’s why we put all of this in the book because to understand that the scientific process done right, I mean we can do it. We have the technology, that’s the hope for the patient population. If we simply look at it, we have so much technology.
So the one that disappoints me the most about what happened is the only thing I said to Frank and others when this paper was published is, “I hope if it does anything, it won’t leave somebody desperately ill for 6 months before a diagnosis can be made because in that 6 months if you are replicating a retrovirus, the damage can be too severe to overcome.
Now I have learned because of various technologies that were more plastic than I thought at that time and we can fix these things and we can rewire brains: stem cell technology, these immune modulators and things like that, we can yin-yang and fix and if not cure which we don’t talk, certainly give her a quality of life as we have done with HIV infected people around the world.
That’s the reason I keep working and putting everything on the website because… So I am happy to work for free at this time and just keep trying to think outside the box. So our website at MAR Consulting and you can go there and you can learn what they are thinking and certainly design some studies and carry it on. We are working with investigators around the world literally who are doing just that. Germany, Northern California… essentially everywhere where doctors who do know us and do know that there was no wrongdoing of any kind, not from Silverman, not from anybody. There was a mistake so what? We learned a great deal. We can do these studies if we think outside of the box and have treatments.
Dr. Craig: This is a great place I think for us to stop and leave the science for a little bit, leave the laboratory, and talk about the future of this illness and what we have learned and how this discovery and this story impacted the CFS community.
So stay tuned for part 2 here on Spoonie Radio with Dr. Judy Mikovits...