Last year as I visited the Whittemore Peterson Institute I was struck, more than anything, by what an immense accomplishment it was. Built in the pre-XMRV era when chronic fatigue syndrome (ME/CFS) hardly registered on the national scene, the idea that a $15.5 million dollar facility mostly dedicated to ME/CFS research and treatment could be built seemed fantastical, and even now, walking through the beautiful corridors, rooms and labs there, I felt a bit like pinching myself. This is a project the ME/CFS community can only hope will succeed and succeed very well.
With the XMRV finding failing, and the Institute, once the darling of the ME/CFS community, getting hammered by some after Dr. Mikovits dismissal, the WPI went through some rough times. They’ve kept their heads down recently but their ability to land a Department of Defense grant, to get their original NIH grant renewed and publish a study on HERV’s and autoimmunity suggested things are on something of an upturn.
I was eager to get WPI President, Annette Whittemore’s take on the past, find out what she’d learned and what, if anything in hindsight, she’d have done differently and where the WPI was heading now. I also wanted to get Dr. Lombardi’s take on some research issues in general and where he planned to be taking ME/CFS research at the WPI.
Annette Whittemore Talks
I imagine you could not in your wildest dreams have imagined the ups and downs the WPI has gone through. Somehow you built that beautiful facility, the first of its kind, dedicated to ME/CFS. Then you, a first-time Research/Treatment Institute Director were immediately thrust into a high stakes environment with a passionate community and a strong-willed Research Director. That must have tested you in so many ways. What did you learn from that experience?
It has been challenging at times, but it has also been incredibly rewarding to be able to be a part of this institute. WPI was created to add to the medical and scientific knowledge around a group of very disabling diseases for the benefit of patients. That has not changed. As a result of past experiences, I’ve learned that there has to be a more cautious approach to all of this work.
It is easy to understand why individuals in this community are so passionate and involved. Many have to be their own advocates in a situation where there are so few answers. Advocating on behalf of particular diseases is an important part of the work that we can all do to increase awareness of the need for private and federal research funding.
Is there anything looking back you would have done differently?
Of course, we have always worked to make sure our research and data were pristinely accurate and we take that with the utmost seriousness. Despite assurances that every possible step had been taken to rule out contamination, I should have absolutely insisted on additional support to help ensure our findings were accurate and credible, rather than relying on a single researcher and her collaborators. I think, at some point, it became difficult for some of these folks to remain objective when they felt they had to defend these findings and their reputations.
In retrospect, should the WPI have brought in outside researchers or investigators or begun assessing contamination possibilities more when doubt began to arise regarding XMRV?
Dr. Lombardi did seek outside advice after the Singh paper was published. He was advised to try to deconstruct both studies to see if he could understand why there were discrepancies in the results. The possibility of contamination was definitely in the back of everyone’s mind. However, it turned out to be very difficult to identify the problems with the studies despite the best efforts of many experts.
XMRV turned out to be a tough nut to crack. That first paper was published in one of the premier scientific journals and the research world embraced the finding and I think most people, including yourselves, expected the finding to be immediately validated. In the end, though, you had to let go of what had appeared to be the biggest breakthrough for ME/CFS ever. The process of letting go of that huge possibility must have been very difficult. Can you talk about that?
The demise of XMRV was a double-edged sword. On the one hand, it was deeply disappointing to learn that XMRV was not involved in the disease because many were hoping that XMRV would validate this illnesses’ physical nature and lead to effective treatments. On the other hand, I think that most were thrilled to know that the retrovirus, XMRV, wasn’t causing their illness.
You had such great support from the patient community and once XMRV took off the feeling was that the WPI could do no wrong. Dr. Mikovits was a dynamic, passionate leader and she became the face, for better or worse, of the Whittemore-Peterson-Institute and when she was let go there was an understandable backlash against you and the WPI. After spending five years working on getting the WPI funded and built that must have hurt. How did you deal with the upset Dr. Mikovits removal resulted in?
The institute is not about one person or one idea. It took a tremendous amount of work by many individuals to create this institute and most are still here working hard every day to help us move our goals forward. We never entertained the idea of giving up on our commitment to the patients. When so many are still suffering, we have no other choice but to continue to move forward. Although it is painful to be attacked by individuals who stand to gain by our work, we hope that they will soon realize that we are making every effort to help them and stop trying to sabotage our efforts.
Any final words on XMRV?
We have taken what we could from those experiences and moved on. XMRV gave us all a glimmer of hope as to what is possible; a cause and potential treatment. It is my hope that this community can begin to heal from the negativity that was generated by a few individuals after the collapse of XMRV.
What is the status of the civil case regarding Dr. Mikovits?
Two separate judges ruled in favor of the institute on all of the claims in the lawsuit. Dr. Mikovits was found liable for the theft of WPI’s property and for causing the WPI other damage.
Have all the materials taken from the WPI at the time of Dr. Mikovits departure been returned?
If not what is missing?
We are still missing information that was erased from the institute’s computers and research notebooks.
Dr. Mikovits was a dynamic, passionate and sometimes controversial figure at the WPI. What is the difference between the WPI in the Mikovits era and the WPI in the Lombardi era?
There is a stronger sense of camaraderie and certainty under Dr. Lombardi’s leadership. He’s a team builder and a very positive influence. His calm, methodical demeanor is a contrast to Dr. Mikovits’ mercurial personality.
Dr. Peterson’s name is still on the building….Of all the things that happened during the turbulent XMRV era I wonder if his departure was the most significant. If Dr. Peterson stays you probably have a full clinic, and you have outreach to numerous investigators and the WPI looks very different.
It works the same for Dr. Peterson. While his leaving meant he didn’t have to be associated with the XMRV letdown, he had a superb lab and great facilities waiting for him and he doesn’t have access to that anymore. It’s a shame for everyone concerned that that partnership didn’t work out. What are your thoughts on this?
Dr. Peterson recently reconfirmed that he made the decision not to move his medical practice to the institute for a number of personal, family, and work related reasons. I’m sure that it was not an easy decision for him to make. Although we were very disappointed that things didn’t work out the way we had envisioned, we ended our relationship on a respectful note. It is still our goal to have multiple physicians from various medical specialties practicing together at the institute for the benefit of these patients.
I think everyone, honestly, was surprised when in the midst of the XMRV turmoil the WPI was the only CFS research group, I believe, to pick up a DOD grant. Then an NIH team came in, scoured the lab, and gave you a thumbs up to continue on the big NIH grant you’d scored earlier. These were good signs that the Lombardi lab has the kind of scientific integrity federal officials are looking for and suggests the WPI can be successful in bringing in grant money. Has the WPI or is it in the process of applying for more grants?
We were all greatly encouraged by the comments we received after the site visit by the NIH. Dr. Lombardi stepped into this important leadership role under very difficult circumstances and was able to add detailed studies and resources to the existing RO1, without adding costs to the government. It is a testimony to his scientific abilities and to his work ethic that he is able to take the lead in this significant work. His team will continue to apply for grants and to publish findings from various studies. I’m hopeful that our soon-to-be-published research efforts will provide new avenues of possibilities both for research and patient treatment.
You’ve had some big dreams for the WPI; you saw it as a center for collaboration amongst researchers, as a hub of learning for physicians, there was the idea that the WPI might be the first of several regional centers. After the XMRV letdown and Dr. Mikovits departure you’re kind of starting over in a way and I imagine that you have different priorities now. What role do you see the WPI serving in the immediate future?
We haven’t given up on our dreams, but we know that it is going to take more time to get where we would ultimately like to be. As we continue to build connections between ME, GWI, and other autoimmune and inflammatory diseases, we can build connections to additional resources. I believe that greater success will come to this field as we build a stronger base of practical knowledge for doctors.
Hopefully, comprehensive translational research centers like the institute will be supported by the federal government in the near future. Centers such as these can offer clinical trials based on the most current research, speeding up the length of time between discovery and effective therapies. It’s been encouraging to see other groups of doctors combine their resources to create similar organizations. The more people we have working to find the answers, the greater chance we have of being successful.
If you were to give three words that summed up the WPI right now, what would they be?
“Moving steadily forward”.
What’s one thing most people don’t know about the WPI?
Most people don’t know that we are in the process of hiring a new medical director for the institute. We are also planning studies in Alzheimer’s disease, HIV, and autoimmunity. They may not know that WPI’s vision is expanding, creating a deeper knowledge of neuro-immune diseases and hopefully additional sources of funding.
You’re well versed in the science. Even though XMRV didn’t turn out how do you feel about the state of the science of ME/CFS. Are you optimistic? Any areas in particular grab you?
The science of ME/CFS is beginning to include new discoveries that go beyond EBV, HHV-6 and NK cell dysfunction. Many successful discoveries in human disease have come from uncovering similarities between various disease processes. These similarities provide valuable clues to the illness and can aid our search for biological markers as well as effective treatments. For instance, work which is being done in autism and the gut micro-biome may have important ramifications for those with ME who are known to have gut associated dysfunction.
Lesions have been found in the brains of some patients with ME, resembling those found in MS. Symptoms of ME are similar to those with MS, including ataxia, muscle weakness, cognitive impairment and fatigue. Therefore, knowledge gained in MS research could lead to cutting edge treatments for MS patients as well as those with ME. Much of the work being done involving HIV and opportunistic pathogens can help us learn about the difficulties many ME patients experience with chronic and/or reactivated infectious pathogens.
Meanwhile, WPI researchers are doing tissue studies to take a deeper look into the immunological changes in ME that have been found in those with autoimmune disease.
One of the keys to speedier discovery and future treatment lies in having access to sophisticated research tools such as next generation genomic sequencing. We believe that by combining WPI’s research tools and expertise with researchers, who study similar disease processes, we can speed discoveries made in the laboratories to effective treatments for those who are ill with ME.
What are you committed to have happen over the next couple of years at the WPI? What would you like to see happen?
We have very ambitious goals for the institute and this field of medicine within the next couple of years. We would like to see the creation of a one sentence disease definition for ME; the validation of at least one biological marker of disease; the start of clinical trials at the Center for Translational Medicine; and the completion of several significant publications surrounding ME and other complex diseases. (The Center for Translational Medicine is the clinical side of the WPI.)
If we could receive one gift, it would be enough funding to hold various clinical trials at the WPI for the next several years. We know that patients with ME are waiting and willing to participate in such trials as critical financial support becomes available.
Dr. Lombardi Talks
The WPI and the University of Nevada, Reno (UNR) are reportedly pursuing a next-generation gene sequencer. whose capabilities UNR researcher Dr. Hunter stated were “mind-boggling”. What’s the status of that instrument? Do you have it and if you do what are you planning to use it for?
The next generation sequencer (NGS) platforms have been delivered, and we are in the final stages of installation. Presently, we have several projects that will take advantage of this equipment. Our NIH grant, New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome, was originally proposed to use data obtained with a viral micro-array. Unfortunately, the leads generated by this data have been unproductive; therefore, we will be utilizing NGS technology going forward. Our DOD grant, Pathogen and Biomarker Discovery in Gulf War Illness, will also utilize this new equipment.
The advantage of this technology is that it has the capacity to identify pathogens that are not represented in a specific viral micro-array. Moreover, it has the added ability to evaluate transcriptional differences of genes between study subjects.
Therefore, in addition to the pathogen discovery aim of these studies, we will also be unbiasedly assessing differences in immune and metabolic pathways. This aim was not proposed in the original grant applications, and therefore, represents a significant improvement of the original proposals. Also, we are conducting a tissue-based ME/CFS study using NGS technology as well as two other studies that are not uniquely ME/CFS related, but may provide useful information to direct future work in ME/CFS and autoimmunity.
Annette Whittemore described the DOD grant as ‘wide-open’ ‘discovery’ grant you’re using to look for biomarkers both in ME/CFS and Gulf War Syndrome. Can you describe what kinds of biomarkers you’re looking for and where you are with that grant?
Although our primary interest is in the innate immune system and its dysregulation; particularly, the regulation of inflammatory cytokines, the NGS platform will give us the ability to look at virtually any difference between study subjects.
The WPI has a big Biobank and it was presumably used extensively for the XMRV studies. What is the status of the Biobank now? Have any other researchers asked to use it? Does the issue XMRV contamination was found (origin unknown) affect the Biobanks usability in any way? What are your plans for the Biobank?
We are writing a human subjects protocol to expand the Biobank and allow outside researchers to use stored specimens and information, but it will take some time in light of the number of projects we have ongoing. XMRV contamination isn’t an issue for the Biobank.
If I remember correctly Dr. Peterson introduced you, as a graduate student, to Dr. Suhadolnik, the developer of the RNase L tests. Drs. DeMeirler and Englebienne wrote a book,”CFS A Biological Approach”, suggesting a unique dysfunction in interferon system played a major role in ME/CFS yet the last RNase L study was in 2008. As research director for RedLabs and then Univex you routinely ran RNase L tests. Where are we on this putative, past breakthrough now? Does it figure in any WPI studies? Do you believe RNase L has relevance to ME/CFS?
I believe that the interferon system is dysregulated in ME/CFS, and this can indirectly affect the RNase L pathway as well as several others immune pathways. The entire 2-5A/PRK/RNase L pathway is upregulated by interferon so the dysregulation of interferon would certainly affect this entire pathway. Additionally, type I interferon is critical for the activation of NK cells, which are also known to be dysregulated in ME/CFS.
It’s also likely that one of the mechanisms of Ampligen is the upregulation of interferon. It is for these reasons, as well as a number of others, that the primary focus of my research continues to center on the dysregulation of interferon production. I do believe RNase L dysfunction is a downstream effect of a problem that occurs earlier in the immune response; however, I’m not specifically working on RNase L at this time.
Where do you think we are in the hunt for biomarkers? Are we close? Do you think in the next five years we’ll have a biomarker for a group of ME/CFS patients?
Although biomarkers are important to give the disease credibility, it’s conceivable that we won’t identify just one unique biomarker. Even lupus and multiple sclerosis aren’t diagnosed by a single biomarker. However, I do believe that it is conceivable that we will find biomarkers for discrete subgroups of ME/CFS patients.
For instance, recently, we had a manuscript accepted for publication that reports an observation that is found in more than half of ME subjects tested, but none of the healthy controls. However, it’s likely that this marker will be observed in subjects with lupus, MS, and other autoimmune diseases that have overlapping symptoms with ME.
The obvious limitation of this potential biomarker is that it is tissue-related and is not convenient for routine laboratory screening. Therefore, we are currently exploring its potential in more accessible biological samples. I won’t go into more detail about it now since the manuscript should be published within the next month or two, and the readers can make their own conclusions about the work.
- Dig Deeper: Dr. Lomardi on the potential biomarker in Study Suggests Retroviral Activation/Autoimmunity Possibly Linked in ME/CFS: Dr. Lombardi of WPI Talks
The almost complete focus the WPI had on XMRV for several years had a surprising silver lining; the technology progressed enough to make their pre-XMRV NIH grant more effective. A study that was supposed simply to detect viruses is now, using new ‘unbiased gene sequencing equipment’ that is able to detect all pathogens AND pick out unusual immune sequences. What is the status of this study now?
It’s true that a considerable amount of time was spent working on XMRV; however, I’m fortunate that I was personally able to dedicate a significant amount of my time working on the inflammatory component of ME/CFS, which is the primary reason we are as far along as we are. Because all the original biological samples were manipulated in trying to culture virus and virtually no controls were collected, we found it necessary to recruit new study subjects, and that process is ongoing at this time. However, we anticipate the NGS analysis will commence sometime in the middle of this year.
You did graduate work at the University of Nevada, Reno where the WPI is based and you have ties there. Do those ties help your work at the WPI?
Absolutely, in many positive ways! Having strong ties and a good working relationship with many of the excellent researchers at UNR has been instrumental in being able continue my research and being able make the advances we have made. In spite of the problems of the past, most of the research faculty at UNR have been very supportive and have made every effort to help me.
A second study will use transcriptome analysis to deeply scrutinize innate immune system functioning in Gulf War Syndrome (GWS) and ME/CFS patients. Do you see the early warning or innate immune system being key in ME/CFS and, if so, is that unusual?
Yes. Everything we have seen in ME/CFS suggests a chronic innate immune activation. It’s likely that there is more to this story than just innate immune activation, but it’s clearly part of the puzzle. So to answer your question, its unusual in the context of what is found in a healthy individual, but it’s typical of what is observed in other diseases; particularly in inflammatory diseases like Crohn’s disease and autoimmune diseases like lupus.
What can we expect to see from the Lombardi lab from the next six months to a year?
In addition to the NIH and DOD projects, which will continue until 2014, we are currently working on a number of basic virology projects, including HHV-6 and EBV, as well as some basic immunology projects with a focus on cells of the innate immune system. At this time, we have two manuscripts that have been accepted for publication, one of which is a ME/CFS project. We also have two others that are in the works and should be submitted for publication in the next few months. We also hope to present some of this data at some national meetings this year.
What do you want to see happen in your lab over the next couple of years?
At this time, we have more projects and ideas than can be realistically handled with the research staff we have; therefore, we are hoping to expand our research operation and personnel at least twofold over the next two years. If we can expand upon the work conducted over the last year, we will be in very good shape as a research group, and I believe we will have made progress into understanding the mechanism of this disease.
this article appears rather one sided, cort. so will you also be interviewing mikovits to get her perspective? i am sure it differs greatly.
from what it looks like to many of us patients, the history is a bit different than what was laid out above. for many of us, we think mikovits blew the whistle on the WPI’s corrupt XMRV test, then was fired for blowing the whistle, and then was arrested under fabricated charges. in fact, the criminal case was dismissed by a judge. of course i was not there so can’t prove anything, but it smells an awful lot like the WPI was trying to cover up their bad xmrv tests (that they were charging patients and medicare for), and then blame mikovits for their own wrong-doing in terms of the xmrv test.
why did you not ask annette about the xmrv test?
also, re: this line in the interview: “Despite assurances that every possible step had been taken to rule out contamination, I should have absolutely insisted on additional support to help ensure our findings were accurate and credible, rather than relying on a single researcher and her collaborators.”
i’d like to remind people that it was dr. silverman who spread the contamination around to the whole world, not mikovits. everyone thought they were studying xmrv when they were studying silverman’s sample of xmrv. instead, they were studying something that had been made up in a lab. but somehow everyone blames mikovits for this, not silverman. see the article by long-time ME/CFS journalist Hillary Johnson in Discover magazine (march 2013), found here:
I won’t be interviewing Dr. Mikovits…I’m sorry but despite her passion for people with ME/CFS, I just don’t find her credible ..
For the record I think everybody (including Annette) made big mistakes …. I also acknowledge it was a very difficult situation that neither Annette or Judy (both first-timers at their jobs) had had experience with.
My timeline is a bit different..
You completely side-stepped the bogus XMRV test issue. The WPI has taken absolutely no responsibility or even attempted to explain that debacle. As someone who coughed up $500, I’d like to know what happened. Until they address this and Annette Whittemore steps down from her role (a reasonable thing after what has just transpired) I will continue to put the WPI in the same category as Bernie Madoff.
You must have insider information to think that the Whittemores are some how way more credible than Mikovits. That just boggles the mind after reading about the imbroglio with the Seenos, Harry Reid, the State of Nevada and their other business dealings and legal “difficulties”.
I think it behooves you to explain why Annette and the WPI are more deserving of a “second chance” and far more “credibility” than Mikovits who was put through the ringer and was believed to be credible enough by Ian Lipkin to be included in his investigation of XMRV.
And unlike some I am not a cheerleader for Mikovits. However, I am puzzled why the WPI is now suddenly a “credible” institution worthy of receiving lots of Federal money and respect from the patient community.
It’s easy Floydguy…all it takes is being lied to in the face, being mislead on many occasions, reading emails in which Judy denigrated other researchers and organizations, reading outrageous comments in public forums that no one responsible for the integrity of a Research Institute should ever make….It was just too much for me…
But why is the WPI getting a second chance? Because they were proved worthy of one by an NIH committee that scoured the labs and talked to Dr. Lombardi. That committee was there to pull the grant if they weren’t up to snuff.. The fact that they didn’t pull it indicates they were in good shape….they were given a second chance by the NIH…I imagine it would have been easy to pull that grant after all that went on…the denunciations of other researchers…the conspiracy theories, etc.
Because their next grant proposal was deemed good enough for funding and its really, really tough to get grants and yet they got one
They deserve a second chance because they were able to get a multi-million dollar instrument to use for ME/CFS studies.and having that toy could allow them to get at the heart of ME/CFS.
They deserve a second chance because they have a wonderful facility devoted to the study of ME/CFS and we need every resource we can get….
Because they were inexperienced and they’re taking a sober approach to ME/CFS now….
Having that building full of research would be a very good thing….
however, just because *you* don’t find mikovits credible, does not mean she is not credible. others may find mikovits’s side of the story much more credible than annette whittemore’s side of the story.
maybe if you interviewed mikovits and allowed her to share her side the community could decide which perspective they believe is more credible. and of course if you interviewed her then you could have someone who could knowledgeably respond to what you stated are the facts and the timeline.
i can’t do that fully and knowledgeably, but on first glance i see a number of what i’d think are errors in yr timeline. my comments have ** before them.
Dr. Mikovits is dismissed for refusing to collaborate with Dr. Lombardi
** that is annette whittemore’s publicly stated reason for the dismissal. but again, mikovits has another perspective. if you could ask her for it, that would be helpful. historically speaking, when someone blows the whistle on an institution, the institution that hires them will want to say another reason for the dismissal, to obfuscate the real reason.
Shortly thereafter many materials from the WPI disppear
** from what i understand, it is not clear who took the materials that are said to have been taken from WPI.
Her putative collaborator states she asked him to remove those materials and that she was also out to get Dr. Peterson
** some think that perhaps that statement was made under pressure.
After her dismissal Dr. Mikovits called the test bogus, not in the year and a half before…and that seems to have gone nowhere
** actually, mikovitis’s whistle blowing (calling the test unreliable) came before her dismissal.
Where-ever the contamination came from Dr. Mikovits refused to acknowledge the possibility that it was present until the very end – which costs the WPI greatly in credibility as did many of her public statements
** from what i understand, she went back and checked many times to look for contamination and did not find it.
it is silly for me to refute your charges, because i can’t knowledgeably do so and i don’t want to state something that is not accurate, and since i was not present at any of these scenes i’m the wrong person to do the refuting. it is better to ask mikovits herself. otherwise it appears that Health Rising’s presentation of, and discussion of, these issues are one-sided. i know you want to allow the patients to hear the whole story — both perspectives — and i’m sure you even feel obligated to do so. so the best way to do that would be to hear from mikovits, if you are going to also hear from the whittemores. otherwise, by an editorial decision (deciding who the patient community gets to hear from) you could be seen as being biased. and i know that is not your intent.
thanks for hearing me out.
In a way it’s a moot topic…the breakup occurred (I know what that’s like :)) and I don’t know if we should rehash old ground – although I readily admit I was the one who opened PANDORA’s box, so to speak. I probably in retrospect shouldn’t have put those questions in there since the interview is mostly about or should mostly be about what’s next.
I don’t know what Dr. Mikovits is doing but here we have the WPI……what to do with them? I know there are hurt feelings and that Dr. Mikovits was a passionate researcher ever who really spoke to patients hearts…… but at least for the moment, she’s not around….but the WPI is still standing…..I say let’s admit mistakes were made
I think we can agree that Annette is passionate about furthering the health of ME/CFS patients; she poured years of work, after all, into the WPI…I say we acknowledge that….realize that we’re all human and we all make mistakes and continue to support, if we think its appropriate, the commitment that created the WPI in the first place.
We have heard Mikovit’s side of the story over and over again. It’s nice to finally hear the truth.
annette whittemore’s side is the truth?
Thank you, Cort, for clearing up unanswered questions. Perhaps not all of them, but we as patients thrive on knowledge of different research being conducted. I, like many, was greatly disappointed in the events that occurred, yet it was the lack of information that was so dismaying. I hope to hear more of future studies as we need the hope that there are scientists continuing to study this disabling condition. So many are in need of a futuristic perspective, with hope for more treatments and finally, a cure. Thanks for sharing these interviews. Mary Silvey, RN
The Whittemores drove a good person and a fine scientist to financial ruin. Their motivation appears to have been nothing more than vengeance.
I want my donations to their institute back. My friends, who bought their bogus test, want their money back. But the Whittemores will not refund our money. They need it to finance their numerous lawsuits and to defend Harvey, who has been indicted by a federal grand jury on four counts involving illegal campaign contributions and lying to the FBI.
If the WPI under Lombardi is being run as well as Annette Whittemore claims, why didn’t Ian Lipkin allow WPI to participate in his study? No, he selected Dr. Mikovits to do the work. Interesting.
Cort, I’m afraid I do not buy this attempt to rehabilitate Annette’s image.
Meanwhile, Dr. Mikovits continues to work tirelessly on behalf of patients. We’re lucky to have her.
I can see this is going to be fun 🙂
With regards to the Lipkin study… Dr. Mikovits was the lead researcher for the WPI during the XMRV era; to have anybody else do that study would have left Lipkin open to charges that he didn’t have Mikovits and that if he’d had her things would have been different. Without knowing why he chose her, it’s pretty clear to me that in order to get complete with XMRV, Dr. Mikovits had to participate….
actually, lipkin has publicly stated that mikovits is a person of great integrity and he is proud to be associated with her. he helped try to get her out of jail when the whittemores had her arrested under false charges because he believed her side of things, not the whittemores side of things. this was stated in a few publications — or was it radio interviews?
I didn’t see the interviews but I agree that Lipkin seemed to be appalled that Judy was arrested and he definitely stood by her in a very public way at the conference stating the results of the study. That was good to see. For what its worth I felt Judy acquitted herself very well at that conference. (As I remember I was kind of slammed for reporting that (lol).)
Asking why “Ian Lipkin didn’t allow the WPI to participate in his study”, but rather selected Dr. Mikovits, is again completely misrepresenting the issue and is rather emblematic of the ignorance surrounding the issue- the entire reason why Lipkin selected Mikovits to begin with was because a bunch of ill-informed patients had it in their heads that Dr. Mikovits had some magic formula to find XMRV and it was Mikovits and only Mikovits who could do this. If Lipkin had nixed Mikovits in favor of the WPI, I’m sure this ignorant group of patients would still to this day be lambasting the results of the Lipkin study, calling it a hoax and continuing with their conspiracy theories, etc, instead of moving on and accepting reality.
If there’s on thing that the XMRV issue has taught me, it’s that there’s a huge difference between the self-styled ‘patient advocacy’ promoted by the ignoramuses vs. actual informed patient advocacy.
The whole thing about ‘XMRV being Silverman’s contamination’ only serves to show how deep the ignorance of the entire subject still is to this day on the part of the individuals making this claim. Yes Silverman was the one who originally incorrectly identified XMRV as being a human pathogen, however any subsequent ‘positive’ reports were the sole responsibility of the investigators making these claims and not Robert Silverman. Also, the 22rv1 cell line that XMRV resides in was in widespread use in labs throughout the world for many years prior to anyone knowing that it contained XMRV, therefore to say that it was ‘Robert Silverman who spread the contamination’ is disingenuous at best.
Furthermore, while Silverman did sequence the XMRV from the WPI’s Science study, the majority of the work for this study was done by the WPI and their collaborators at the NCI and not at the Cleveland Clinic. The WPI also independently published numerous other XMRV sequences completely by themselves as well as publishing subsequent papers on supposedly ‘XMRV positive’ patients without any collaboration with the Cleveland Clinic, thereby to say that ‘XMRV was Silverman’s contamination’ again completely misrepresents the facts of the issue. Of course this goes without mentioning that it is still to this day disputed as to exactly who it was who contaminated the WPI’s samples that were sequenced at the Cleveland Clinic as part of the Science/XMRV study.
Finally, people have complained that it has taken some time for the WPI to publish studies from the ‘post-XMRV’ phase of its research and have blamed the WPI for this. However what commonly gets left out of this argument is the fact that it was Dr. Mikovits who completely revamped the WPI’s entire research program to focus almost solely on XMRV. Just in case no one has thought of it, it’s probably pretty hard for a new Institute to get things quickly back on track after your entire research program has been almost completely side-tracked for several years in order to search for a lab contaminant by your ex-Director of Research.
“We really retooled our entire programme and did nothing but focus on that [XMRV],” she [Mikovits] says.
Fighting for a cause
by Ewen Callaway
Nature 471, 282-285 (2011) doi:10.1038/471282a
I have followed this story from the very beginning.
I’m sorry haven’t we heard enough lies from Dr. Mikovits? Nothing but since the xmrv finding. After all she is the one who made outlandish claims. I sat in amazement listening to the stuff she came up with for why it wasn’t contamination. Yelling at other scientists in public forums, writing nasty letters to researchers that just oops found their way out to the internet. IE Erv, Calling it a government conspiracy to cover up the suffering of CFS through friend Dr. Deckoff Jones . Ruscetti and Mikovits are both at fault for asking WPI to license their test to Redlabs without being completely sure. VIPdx tried to offer a test because Cooperative Diagnostics and Dr. Mikovits said to. .All that matters is the Science paper for them.
RRR Your comments are not correct. They are not based on facts. Fact: Max Pfost confessed. Fact: Amanda McKenzie made a deposition. What don’t you get? It seems to me she starting losing out when she knew it was contamination in May when the Blood Working Group study came out and went off the deep end. Dr. Lipkin was going to find out the truth and he did. Dr. Lombardi became Director of Basic Research,she became Director of Translational Medicine and VIpDx stopped the tests. UNevx never ran xmrv tests. Read all their website and their press releases. Dr. Mikovits should have admitted her mistake not stolen materials imperative to the daily operations and studies of the research lab.
Wingfield Nevada Group vs. Whittemore Peterson Institute Stipulation and Order of Dismissal with Prejudice
Reply To Opposition To Motion For Preliminary Injunction
Exhibit 1: Affidavit of Max Pfost
Exhibit 2: Affidavit of Max Pfost
Exhibit 3: Affidavit of Amanda McKenzie
The Whittemore’s private lives are no ones business and a settlement has been reached.
Cort: i want to thank you for the update on WPI and the report on what they plan to accomplish as we go forward.
I donated money as did a number of friends who did so on my behalf. Did I at times feel guilty for asking them to participate? Short answer … YES.
However, I remain hopeful and am a believer that the WPI will remain instrumental in finding answers to the M.E. and Neuro-Immune Disease puzzle in the future. Very few have made such commitments to us patients over the years and i’m not about to turn my back on one so invested in the cause.
Some of these comments are just baffling.
1) Whittemores spend a lot of money to build non-profit WPI institute;
2) WPI hires Mikovitz;
3) Mikovitz is fired;
4) An arrest warrant is issued by state of Nevada, and Mikovitz is arrested for taking note books;
5) Mikovitz loses court case, and is found by a judge to be liable for taking note books;
6) Mikovitz blames everyone but herself for a faulty study she conducted, supervised and published;
Which of the above facts is not true? This not a “version.” That’s what facts are. They are provable, supportable, statements. What you people have is innuendo and speculation, and you draw the conclusion Mikovitz did nothing wrong and Annette is to blame???
I’m sorry. I’m late to the CFS party, but I don’t get the conspiracy theories. The disease is real, and my sister needs help. Thank you Cort for writing an informative piece. Thank you WPI for your work. We need medical solutions. Tearing down Annette for a study she didn’t conduct and didn’t publish, isn’t just foolish, it’s factually inaccurate.
Note that the criminal charges against Dr. Mikovits were dropped. District Attorney John Helzer cited a lack of evidence. He said, “…[W]e have witness issues that have arisen.”
Note that the criminal charges against Harvey Whittemore have NOT been dropped. He was led into the courtroom last June wearing shackles, and will stand trial this spring.
Shame on you Rebecca. You are not helping the community of patients by spreading your vitriol against Harvey Whittemore, a person who as far as I can tell has nothing to do with XMRV, Judy Mikovitz, doesn’t “own” the WPI or is not gainfully employed by the WPI.
My word. The insanity of these arguments. Harvey is a meany. Harvey is accused of this. Harvey did business with bad people. PLEASE.
What is at stake here??? The disease. The people trying to find the cure. The patients suffering. And commentors want to focus on circumstances and people so far outside the issue, it would be laughable if it wasn’t a tragic waste of energy focusing on our common enemy: ME/CFS.
These CFS forums always seem to devolve into ad hominem attacks. More than any other forum I have ever seen!!!
I’m sad for my sister. I’m sad for those patients without a voice. I’m sad for those patients who can’t leave a dark room, let alone sit at a computer and write. I think about what their voice would say…in my heart I know it wouldn’t be wasted vitriol and personal attacks.
I imagine they would say: “Help me. Love me. Stop fighting. Pray for those trying to find a cure.”
I see that you have a lot of energy to sit around saying “Shame on you” to severely ill patients.
You wrote, “I’m sad for my sister. I’m sad for those patients without a voice. I’m sad for those patients who can’t leave a dark room, let alone sit at a computer and write. I think about what their voice would say…”
It would be more constructive for you to write that sentiment in a letter to the editor; a CFSAC testimony; or a letter to Congress asking for more funding, as many of us have already done.
Note: Criminal charges can be brought up again at anytime in the next 3 years against Mikovits. Most likely after witness issues are dealt with.
a friend, who did not want to get into the fray here, asked me to post this. these are his words below. — rrrr
Here are the important things to remember:
1. The WPI was selling an unvalidated test and making million. Are they still selling it? No!
2. Since Judy was fired and never went back to the institute, how could she have erased anything on the computers?
3. Harvey Whittemore is facing 20 years in jail for election violations.
4. Harvey and Annette were sued for embezzling $44 million dollars by their former business partner and settled privately.
5. Judy never got her day in court because of a ruling from a judge who later recused himself because he got $10,400 from Harvey Whittemore AND didn’t have enough money to donate that to charity.
6. Judy was fired because she refused to let the director of the for-proft clinical lab have cells which were purchased with money from a government grant.
7. Researchers always get their notebooks!
Please feel free to post this on your fridge if you ever wonder whose side you should support.
Less emotion and more logic, please, from everybody.
I totally agree with Chris. One of the things I’ve noticed is with this community everyone is so angry. Why because now there is more private funding in this disease than ever before? Because Dr. Lipkin a highly regarded individual is now involved in seeking the answers? Why because we have more interest in this field than ever before? Seriously xmrv and the wpi brought this disease out of the shadows.Can’t we focus on the positive instead of always trying to break each other down. This community is so passionate. If we could use it for good do you know how much further we could get?
Dr. Mikovits has her story so does Annette. Let’s all move forward working TOGETHER to find the answers.
Who has a more passionate community? No one! The FDA was overwhelmed at the ME/CFS communities response to the Ampligen…Great idea to funnel that passion into constructive action…as we did there.
We all want the same thing but at times we get sidetracked – lose sight of the main goal…That’s just part of being human but we’re so much effective if we keep our eyes on the main goal 🙂
I myself am guilty of letting my emotions take control of my thought processes, but I strive to reign them as successfully as Surak himself.
Anyway, I find the healthier I feel neurologically the easier it is to control my emotion. I still feel them but I’m able to acknowledge them and continue my train of thought instead of becoming sidetracked by them and losing the forest. When I am unwell, my emotions outweigh my willpower.
I believe the neurological impairment we experience are a major factor for our lack of successful long-term advocacy.
When will you be interviewing Incline Village CFS survivor Erik Johnson, Cort? As someone who has testified before members of the United States Congress of my experience with this illness — and of my ability to control my symptoms via Erik’s advice — I think this represents a third side of this story. I am a member of a growing and documented cohort of people, both male and female, that have been able to achieve a functional level of recovery from illness that has every symptom of CFS, something that to date has been vigorously avoided by both the advocate and research community.
Yeah, I agree after enduring articles on Gupta, the Lightning Process, “stress” management, WPI love-ins, etc I think an article with Erik and Slayadragon should be a consideration. It’s an interesting question as to why X% are so sensitive to the “environment” and Y% claim not to be.
Thanks, Floydguy! I think an even more interesting question would be why people with no apparent financial motivations or conflicts of interests are calling for acknowledgement of Erik Johnsons observations, while those in positions of authority — or striving to be aligned with it — are so bent on dismissing this information. As I have stated in the congressional record, Erik Johnson’s protocols saved me from a near certain death. Understanding why this evidence is being ignored is crucial for the CFS patient community.
I get the message 🙂
I assure you Jonathan I’m not bent on dismissing Mold recovery stories. In fact I hope to publicize them. I have been gathering recovery stories over the past year and several involving mold avoidance have popped up; enough to be a category.
Lots of stuff in ME/CFS is ignored; mold avoidance is just one of many and I think it’s unfortunate that all of them are ignored, get short shrift, etc.
Anyway this is an opportunity to get more mold recovery stories…(One of the hopes of the project is that publishing them will cause more to flood in…So please flood your and other recovery stories in . I hope to start doing the recovery story blogs in about a month…Please provide a name you’d like to have associated with your story.
The story will be broken down into its constituent parts (see below) and those parts entered into a database. Some stories will be provided whole (with permission) on the website. Please send them to email@example.com
” If you’ve recovered or have mostly recovered please give us your stories. If you know someone who’s recovered please let them know about this project (or give us their contact info and we will contact them.)
Neither your story or your contact information will be made public without your permission. Basic information (see below) about your recovery will be entered into a spreadsheet which will be made public. You can remain anonymous or use a pseudonym.
Some of the things we’re looking for include
Type of onset
Age at onset
Degree of debility at its worst (how sick were you?)
Length of illness
Degree of Recovery
Comments/Advice for others
You’ve really endured alot Floydguy 🙂 and have a good memory; the Gupta and Lightning Process articles were about two years ago. Hey, everybody gets their shot on this website; if somebody is getting better that’s through Gupta or mold avoidance or fecal transplants (:)) (I know those are coming…I hope they’re coming) – you get your shot!
This is a big community. I’m looking forward to exploring mold avoidance more (see below).
See below….An interview with Erik could be part of recovery story blogs…..There will be blogs featuring different ways people recover – and there are a bunch of them; one way, of course, being mold avoidance.
As always, let’s focus our energies as patients on healing ourselves, and supporting any individual or group with any hypothesis we view to be speaking to our situation personally. There is no need to attack others for not supporting our particular interests, but as we gather significant proof that something is working for us and others, or studies that a hypothesis is worth considering, let’s submit those and share with the community for them to make their own decisions about it [either through Cort, or in a blog]. I personally was saddened at how this whole situation devolved, but I would be open to any significant work either the WPI or Mikovits puts out in future – I am only interested in progress and real contributions, not drama.
It is a shame that many put their own funds into a study that ultimately they feel cheated by, but let that be a lesson to all of us that we are sick and struggling, and not to put more of our energy or income than we can ever afford to lose into any cause, because like any other investment studies are a gamble. [Fighting about whether or not the WPI is responsible for that loss is only suited to a legal action you can choose to take against that organization to get your money back, it really does not relate to the majority of patients here who are only concerned about treating their symptoms and finding a cure – take it up with the police if you believe you have a case, not the community.]
Please, let’s remember to stay emotionally calm so we stay healthy today, and not to drain all our energy into worrying about personal issues of these various researchers that have nothing to do with our only reason for being concerned with them in the first place – searching for a cure. If we were well by now, none of us would have the time to put all this frustration into this drama, and yet all the bickering in the comments after each article Cort puts out makes it clear how sick and lacking in any productive daily focus we really are. Let’s try to be supportive of each other, as I know so many of us are grateful for the work patients, doctors, and organizations do to help all of us get better.
Since we are dealing with many different subsets here, it is reasonable not to have a consensus among us about which is the best path toward improvement – let’s keep pursuing as many as we can manage to learn about until we find a cure. Let’s move forward, we have no time for looking back. There are still many other pathways that are yet to be disproved, and in some of them may still lie the keys to us regaining life. I am open to anything that works, no matter who it comes from.
[Cort, if you don’t want us to rehash, you are right that it might be better in future to keep articles focused on moving forward, rather than the drama behind us – you can simply address at the beginning of an article that you are consciously doing so because you find the future more relevant than the past.]
Agree Sunshine…I opened the door 🙂
doing whatever you can to lessen any pre-existing or post-existing inflammation will go a long way towards making you feel better, whether it be mold avoidance, resolving digestive issues, or re-activated infection control. the fact is. though, that this will not result in “recovery”. it will result only in improvement, possibly tremendous improvement – during the time that you are avoiding inflammation.
…but you will still have the disease.
I have nothing to say about how the Whittemores run their business, including WPI, after all WPI workers were on mr. Whittemore’s payroll instead of WPI. Probably a practicality issue but it does establish his financial link to WPI.
All this doesn’t matter, I have certain standards and despise people who are making money over the backs of seriously, severely and desperately ill people. I was tested twice for XMRV, a worthless piece of paper. I am not the only one, they made a nice sum of selling us a test that they knew was completely worthless. I will never ever trust people who duped me and hurt me like that again.
People who play with lives of severely ill people like this and have so little respect for those same people do not deserve a second chance in my book. I don’t care what anyone else does I have to take care of myself, who says their next test/treatment is not going to be just as bogus? As far as I’m concerned they lost all their credibility with me.
I keep in mind that if it walks like a duck, quacks like a duck, it probably is a duck.
I can understand your upset at the test not working out but why would the WPI market a test they knew was ‘worthless’? They would surely be found out later – damaging their credibility – which is vital to the successful operation of every research institute. Any money they collected in the meantime would hardly recoup their losses long term. It makes more sense to believe that they believed the test was good enough given the situation; another test appearing on the market. All their (Dr. Mikovits) actions, their vocal defense of XMRV to the bitter end suggested they believed they had the key…
Besides the problem wasn’t the test; the problem was XMRV. I never heard that the test was unable to pick up XMRV! The test was able to do that – the problem was that the XMRV in the blood samples it found was a contaminant.
I remember Dr. Mikovits, who now accuses the WPI of putting out a bad test, being very positive publicly about the test; in fact, I remember her saying that all you needed was one positive test result out of several tries to be considered positive.
I also remember her saying XMRV was going to be worse than HIV AIDS in Africa or something to that effect. I remember her going on television and suggesting it might be in mothers milk. I remember her accusing others of conspiring against her and the WPI -she was so certain she was right. She created an environment of such certainty that it was difficult not to take the test.
There were so many red flags; the need to culture the blood samples far, far beyond normal, in retrospect was a huge red flag because the longer you culture something the better chance you have of contaminating it. So the pattern… the virus shows up more the more you culture should have been a red flag early on.
Science doesn’t always work out. I remember the proviso’s they attached to the test…Taking a test unvalidated by other labs was always a gamble..
That simply isn’t true. You can look at all financials right here. As a 501 c3 charity all financials are available to the public, as well as an outside source should be doing a review. WPI has both.
WPI also publishes an Annual Report. 2012 Financials and Report will be added very soon. Until then you can read about all financials here.
By the most incredible misfortune of bad timing, I happened to walk up to the door of Dr Judy’s office at the exact moment she was loudly ripping Dr Lombardi a new butthole for failing to find XMRV on PCR.
Dr Mikovits accused Dr Lombardi of incompetence and blamed his mishandling of a delicate procedure that requires meticulous precision.
If Dr Lombardi had been part of a plot to hoodwink Dr Judy into thinking XMRV was real, to continue scamming patients… I doubt he would have told Dr Judy he wasn’t finding it.
As far as I am concerned, this bizarre mischance of overhearing something that I wasn’t supposed to puts the WPI in the clear on that score.
Viral Immune Pathology Diagnostics Introduces New Test for XMRV Patients and Clinicians -Net proceeds from test dedicated to further WPI research-
RENO, Nev. – The Whittemore Peterson Institute (WPI) has recently published a research study revealing the prevalence of XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS or what has most recently been called, X associated neuro-immune disease, (XAND). In response to an overwhelming request for a diagnostic test for XMRV, WPI has temporarily agreed to allow Viral Immune Pathology Diagnostics (VIP Dx) to begin offering the identical tests that have been extensively validated using the same technology developed by Drs. Lombardi and Mikovits and their colleagues as reported in Science.
I just read over the email I got from Judy Mikovits again….the Aussies haven’t been forgotten ;o)
Here is what she said on 14 May:
We are working to get a program going in Australia and New Zealand. We are validating and have been successful using frozen plasma and have had good results. We hope to get this program going in June. We have also been working with RedLabs Belgium who are almost ready to begin testing!! We expect them to make an announcement very shortly!!
thank your for your note. We will contact you as soon as we have details of start dates.
Kind regards Judy
Sources -Press Releases. Public information.
Don’t let Dr. Mikovits fool you. Looks to me as though she was involved in all choices and discussions.