Breaking news. The entire WPI research program has been closed by the institute’s CEO, and the facility is now locked down. It’s former principle investigator, Dr. Judy Mikovits, is in active discussions concerning institutions to which she may move to continue her grant-funded research. The institutions must remain unidentified, for obvious reasons, but it’s important for patients to know that she remains committed to continuing this critical work.
So now, on top of everything else, a divorce at the WPI. Yet to come are all the things that can happen in such messy situations. Meanwhile, there is no Mikovits-led research at the WPI or any research institution at the moment. An enormous loss of possibility. I’ve done a lot of soul searching about whether to write this blog or not. My motivation for writing all along has been to make things better, to inform, alleviate isolation, share ideas that I hoped would be useful. This is different. Writing this entry, I feel like I’ll be taking away hope, which is anathema to me. But at this time, withholding the information I have would be dishonest. I don’t know what else to do, except tell it the way I see it.
Here is the reality and the context for why I write this particular blog entry: My email inbox is filled with so much pain and confusion, as patients try to figure out what the BWG study means to them. I feel it is my obligation to both these patients and the larger community to share my opinions. I think what the BWG results mean is that all the XMRV/HGRV testing done at VIP Dx has been and is now null and void. Keep in mind that Dr. Mikovits works at the WPI research lab, which is a separate lab from the clinical, commercially-oriented VIP Dx lab. She believes that she has reproduced her original work many times and found evidence of infection in the patients who were previously found XMRV positive. But she never found any single patient positive on every date tested by every assay. So there has been an assumption that there were false negatives in the WPI research lab for some time. Another important thing to keep in mind is that WPI routinely used several tests on each sample, whereas VIP Dx used different, more limited testing, on the samples they received, testing that apparently was never truly validated against WPI methods or performed with appropriate controls. I personally don’t know why this was the case or how it happened. Obviously the decision to sell a test was a very poor one, hindsight being 20/20. It left the institute with a difficult conflict of interest.
I have watched this whole thing unfold and kept quiet because I hoped that management at the WPI would come to their senses, before it was too late. They have not, so I now feel obligated to share what I know.
Dr. Mikovits is a personal friend of mine. We’ve spent time together in Reno. We were excited about our collaboration. We still speak and email regularly. Because I know her so well, I can tell you first hand that she never thinks of or spares herself, and instead gives her all to the research and the patients who need it so badly. She has been criticized for the unorthodox step she took of allowing patients to gain access to her, a step that was life-saving for some, though it turned her into the ME/CFS hotline.
In terms of the BWG: I was told that the BWG specimens were being run in both the WPI research lab and the VIP Dx clinical lab. Though the labs were kept separate, and cooperation between the two labs was already very troubled, Dr. Mikovits believed that VIP Dx would succeed, and everything would be doubly validated.
When the results of the BWG were uncoded and revealed to all nine labs (but not yet made public), in early August, WPI was left in a bad place. Dr. Mikovits says that at that time she asked WPI management to stop offering the XMRV test at VIP Dx. But the testing was not stopped. Why?
Then, when the BWG results were finally made public on September 22, Dr. Mikovits was quoted as saying, “VIPdx lab will NOT continue XMRV-testing because it hasn’t been shown to be reproducible in [the] BloodWorkingGroup”. Shortly after she said this, cooperation between the two labs ceased completely and the research lab was closed. Why?
It is important to know that Dr. Mikovits stands by her work at the WPI research lab, which is all she can vouch for. She cannot account for what happened at VIP Dx. It was in a different location, under different leadership: Dr. Lombardi was in charge at VIP Dx.
Now it appears the WPI research program is getting thrown under the bus, but VIP Dx is still up and running, now minus XMRV testing. None of this means that we don’t have HGRV’s, or that some of the work that came out of the Mikovits-led research lab wasn’t correct. What it does mean is that there is no validated test for clinical, commercial use. And it means we are now at risk of losing all the gains we’ve made because of poor managerial decisions.
My next blog will be to repost Dr. Mikovits’ slides from Ottawa, this time with her comments and a summary from me, making the case for HGRV’s. Culture contamination with VP62 doesn’t explain away her findings. She was finding variants of XMRV. The serology test used in the BWG and published in Lombardi et al is picking up something that is at least very close to, if not antibodies to, MLV proteins. Someone needs to find out what those proteins are. There were electron micrographs from patients showing retroviruses. Pictures. Frank Ruscetti has been studying retroviruses since the beginning of the field and he believes he has been looking at something real. And there have been clinical responses to antiretrovirals, including ours, that are hard to explain away, other than that they are doing what they are supposed to do, inhibiting the replication of retroviruses. Please read Dr. Snyderman’s posts and comments again: A Reason For Hope.
As sometimes happens with divorce, we now find ourselves in a position where we have to take sides. The science, not the institution, is the child that must be protected somehow in the ensuing custody fight.
For the record. As we descend back into darkness… I wrote the below text a few weeks ago, but didn’t post it. I have confronted these issues directly with WPI management and not gotten an adequate response.
Untitled blog:
If you tell the truth, you don’t have to remember anything.
~ Mark Twain
I’ve been quiet about my own personal experiences at the WPI, figuring things would unfold on their own, without disclosure from me. But something is happening that I can’t just let pass, It is this belief patients have that, could they only get to Reno and be treated at WPI, it would all be better. This dynamic is too painful to watch in silence. It hits a nerve. When my daughter got sick with “Chronic Lyme Disease,” I felt that there was information other doctors had that might help her. The memory of that feeling, of being unable to help my child, thinking that there was something to know that I didn’t know, and the poor decisions that desperate feeling led to, is driving this next disclosure of mine. Keep in mind that most of what I know about that is happening on the clinical side at the WPI now is hearsay. He said, she said. Eventually, it will all come out in the wash. But as a physician, I feel the medical carrot being dangled before the public needs comment.
I recently watched Annette Whittemore on Nevada Newsmakers imply that there is new treatment available at the WPI that is producing miraculous results. Due to patient confidences, I can only impart my reaction, not prove my case with details. But her comments were over the top, an advertisement, cobbled together from little pieces of reality, but not reality. There is one doctor working independently in the clinic space, downstairs from the WPI. He is a lovely doctor, an experienced endocrinologist with an interest in CFS. He would have made a wonderful addition to a multidisciplinary team. Does he know something that nobody else knows regarding how to treat CFS? No. There is no treatment being offered in Reno that isn’t mentioned on my blog. No secret knowledge. Nothing you need to be an insider to find out.
It has been really tough for me to decide what, if anything, to say about this next topic. Given that I promised to be truthful here, saying nothing seems almost a lie of omission. If I say something, I sound bitter, which maybe I am. And if I say nothing, I sound incompetent, which I am not. A no win situation. But the truth is, I was well on my way to getting the WPI clinic going as envisioned from day one: A team of like-minded doctors sharing ideas and generating a large patient database, an integral part of a WPI translational research institute. It would have generated enough income to support the research program. But the plug was pulled, inexplicably. A very poor decision.
The ways in which I was mismanaged and completely constrained by ineffective micromanaging when I was working at the WPI, and now this insanity, shutting down the research program, establishes a pattern of behavior. Although it is sad, the party is over, and needs to be. They were, and are, in over their heads. They started with the best of intentions. We will always owe them a debt of gratitude for the spark of genius and the increased awareness they have brought to our disease. But now, the work needs to be done by someone with the resources to do it right. They have risen to their level of incompetence. It doesn’t matter to us who wins, gets the money or what their personalities are like, as long as the research continues. We need it to happen. The WPI is now an obstacle to progress.
Tonight’s song: Square One by Tom Petty
>Wow, this is one giant mess. This really could have all been avoided if Mikovits was not so arrogant in her handling of the negative papers, with her constant attitude that there is no way she could possible been wrong. The whole thing is so frustrating and frankly an embarrassment to CFS and the credibility of researchers working on the disease. The science paper was great at bringing attention to the disease but at this point it has put made many researchers not want to touch CFS. Any researcher that had any disagreement about XMRV was attacked by Mikovits and CFS patients following Mikovits doing the same. This has put off a great deal of researchers from working on the disease.
>Jamie,
It is far better to participate in telling your truth and hope that others do the same. Few people will risk it. MY HOPE is that all patients understand that no matter what, we are better off because of WPI efforts. In addition it is not ever over in scientific pursuit as technology grows.
I am not making a choice over this. I prefer to view all that has happened in the last 2 years as a catalyst, reaction, ACTION, reaction…..and so it goes as fuel for patients to keep pressing forward. I have spent more than 1/2 my life sick and I lost my son in a CFS related attack. I will not stop working to support better science. Thank you
>OMG! don't know what to say …. am in shock …
>Bless you, Dr. Jamie, for once more being willing to tell the truth. I can't help being reminded of George Orwell: "In a time of universal deceit – telling the truth is a revolutionary act." I know it cannot have been easy for you to tell us all this, but as a patient, I am grateful to you for doing so.
Patricia Carter
>@Anonymous – you're pointing your finger in the wrong direction.
Did you even read the blog?!
>So why has the CEO shut the research program down? Has Dr. Mikovits been fired? Why is the facility being locked down? Is the intellectual property being held hostage?
>Thank you for your honesty, Jamie. I know it wasn't easy to be the bearer of such difficult news. I'm not sure it's necessary to pick sides; we can be grateful for all the good that has come from both the WPI and Dr. Mikovits. Now more than ever, we patients need to support each other regardless of what we "believed" up to this point. We need to move forward and be gentle with each other. Thanks again for all your posts.
>Dr. Deckoff-Jones,
This is incredibly sad and it comes at a time when we all are barely hanging on as it is because of the latest developments. None of this has really sunk in yet.
I am trying to understand what you are saying about the BWG study: Are you saying that the specimens that were sent to the WPI were split up between the research lab and the clinical lab (VIP Dx/UNEVX)? Or were all specimens run by both labs and if so, how did their results differ?
>Wow! I'm blown away like everyone else.
Huge thank yous, hugs and Godspeed to all the heros in the WPI epic: Dr. Deckoff-Jones, Dr. Mikovits, Annette and Harvey Whittemore, Frank Ruscetti and all the others who support them including patients sending their last dollar into WPI for research to help all of humanity!! We hope you all land on your feet and keep charging forward toward the truth!
>I'm so terribly shocked and sorry for everyone involved. Thank you again Dr. Jamie, and thanks again to Dr. Judy. Both of you Dr. J's are providing so much hope.
You're right: the concept of WPI began with a spark of genius and good intentions. Perhaps something can still be salvaged there.
We have invested every scrap of advocacy and money we could to support the vision of integrated research and treatment there, the team you were going to put together, the sharing of information, the advances. We were so excited. I believe that none of us can walk away completely from that enormous investment of energy.
Having no idea how it all blew up, I can only hope that somehow even better things come of this, for you Dr. Jamie, and for Dr. Judy, for Dr. Peterson, for the Whittemores, for everyone at WPI and for all of us patients.
I was one of those patients and one of those moms who dreamed of going to Reno and being treated. I'm immensely grateful to you for the information you've provided today, and all the medical information over the many months. I will be referring my and my daughter's new doctor to your blog and continuing to follow it as best I can with my ever-more-muddled mind.
Wow. Events like this sure don't help the brain fog. But we will all hang together and get through it and see some sunny days yet.
>Thanks for passing on this stunning news, Jamie.
Scott
>Forgive my prying, but is the clinic being closed too? It sounds like you are no longer working there.
>gutted
fly
>The first anonymous has it all backwards. Judy was fired for spreading the word that the VIP Dx test was unreliable and for trying to get them to stop selling it.
>Thank you for letting us know what happened, Jamie. It will take time to digest this. No matter what, I believe we are better off for the work of the WPI and Dr. Mikovits.
Many of us have seen these kinds of things happen over the past twenty years. Each time we have survived and continued to support each other and the science. I strongly believe we will do so again.
>Lets face it. It was an uphill battle the whole time. The WPI and Mikovitz have been under non-stop assault in the media and by the establishment who doesn't want to news to come out.
Should be obvious this has been done before to Elaine Defreitas. They do it to Dr Burzynski, with vaccines, you name it. Full time assault.
>Crikey. Thank you for telling it like it is Jamie. That is all you can do. No doubt the next few weeks will be revealing.
To other patients out there. I too was pinning my hopes on Judy and the WPI. As Jamie says we have to keep nursing the child – that is the research. Lets just hope that Frank and Judy aren't wrong – that they are able to be left to do what they do best and to figure out he truth in all this. While we will all inevitably feel abandoned – please don't blame anyone. The Whittemore had/have the best intentions – they have a very ill daughter. They like us will be being thrown around by all of this mess. Please, please support each other and keep each other going.
best Jill
>Some things to keep in mind:
1) We are better off than we were 2 years ago.
2) Keep calm and carry on.
3) Trust good people.
4) Trust in advocacy. Remember that HIV/AIDS won.
5) People are suffering and dying. Every small thing you do is important.
>"I know not what the future holds but I know Who holds the future."
Thank you for telling us what you know, Dr. D-J. All my best to Dr. Mikovits, Drs. Ruscetti, the Whittemores, and all the staff at the WPI. I'm praying for you all and praying for all those who suffer from this rotten disease. May the truth come out and set us free!
>>But at this time, withholding the information I have would be dishonest. I don't know what else to do, except tell it the way I see it.
>When my daughter got sick with "Chronic Lyme Disease," I felt that there was information other doctors had that might help her. The memory of that feeling, of being unable to help my child, thinking that there was something to know that I didn't know, and the poor decisions that desperate feeling led to, is driving this next disclosure of mine.
Dr. Judy Mikovits and Dr. Jamie Deckoff-Jones both have long had ample knowledge that the phenomenon regarding mold, biotoxins and the Locations Effect in CFS is real. They have been in extensive personal contact with those of us who are familiar with it and have seen plenty of evidence that it is legitimate.
However, they both made a conscious decision to hide, deflect attention away from and publicly dismiss the phenomenon because they believed that it would distract people's focus from the retrovirus.
People had the right to know this information. It is something that, over and over again, has helped desperately ill CFS sufferers when nothing else worked.
It was wrong of both Dr. Mikovits and Dr. Deckoff-Jones not to have shared what they knew openly with patients and parents in this community.
Sincerely,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>Well, like I suspected, how much did I pay for that VIP Dx XMRV test? As I recall it was a $1,000 or so…another big huge drop in the bucket, more dollars down the medical mystery rat hole,slowly but surely depleting my pocket book….. another expensive and useless medical expenditure…. is VIP Dx giving refunds????? Of course not! Disgusting!!
>Can't believe the mold shit is still getting through in Jamie's blog. This is so tastless when that person has been told many times to start her own blog and leave it alone.
People from all around the world have ME/CFS. This includes, the tropics, dry areas, humid environments, high altitude area and sea levels. Some people have left everything behind and moved to different places and are still sick-
Now Lisa, why can't you just move on and preach where people will listen? It isn't here.
>Thanks Lisa … back to shooting the messenger, again …
>Lisa,
This is crazy. It is all in your head. Nobody is denying that biotoxins are a trigger for many. How many times do I have to say it? You make many intelligent contributions in your comments, but this idea you have that everyone is against you, or doesn't see what you see, is simply incorrect. Everyone is sick of it. I share everything!
We have big problems as a community. We need to come together. Take your divisiveness somewhere else, please. Come back when you have something to contribute other than Dr. Jamie and Dr. Judy don't get it. WE GET IT…
And btw, where is Erik? I'm starting to worry about him.
Jamie
>Where are Dr.s Ruscetti standing on this? And What's happening with Dr. Lombardi?
>"We have big problems as a community. We need to come together."
This is true on so many levels, Jamie.
The news you report is so devastating, and you are brave and good to report it.
I wish I understood what forces were at work here.
Is this another Burzinski-style attack on the whole WPI, or political infighting?
I wish we could just know the current truth, and move freely and directly to the full truth we need to get past this shitty illness.
I can't take any of this any more. I have started having weird little seizures, I have no PCP, and no insurance. This news is like being kicked in the ribs while already down.
Thank you though, Jamie, for keeping us in the loop.
Please let there be some good news soon.
>I'm so sorry, Leela. I didn't know any way to soften this blow.
Love,
Jamie
>Where does this leave the Lipkin (XMRV/MLV) study?
>I don't know the veracity behind this story, but I have been following its development. The link: http://www.prohealth.com/library/showarticle.cfm?libid=16549
Ostensibly, 10 million bucks will be used to study CFS. I have no idea if it will lead us further forward, but I get this feeling that there is definitely blood in the water. Capital being thrown at CFS? Of course! We're a prospector's dream, a veritable gold mine. One thing you can trust in a cut-throat capitalistic culture is the incentive, the payoff. I am not suggesting THIS investment was done with disregard to patients. I see this as a true positive because people are recognizing us as a viable market. Of course there is some viral causality; this will ultimately be proven, sooner or later. And, when that day comes…who among us would not sell everything we have to regain our health, and return to our normal lives, return to being ourselves again? We are a powerful market because we are so gifted, articulate, and beyond desperate.
>Leela, please take care of yourself, read what Samuel said above. It's not over, people can help themselves just by keeping the faith, having hope, and knowing that things will improve.
I used to have seizures and also sometimes tremors, but found that l-taurine and also b12 helped to minimize them. Now they are reduced by about 75%. I also know someone who had seizures for 8 years, until she found out the water she was drinking was high in copper. It took her about a year to improve, but she hasn't had a seizure in 7 years.
I also agree regarding Lisa Petrison's incessant need to be THE SOURCE OF ALL THAT IS TRUE. Please Lisa, you're embarrassing yourself and not attracting any converts when you play the martyr came (as Erik perfected years ago). I don't understand why you don't start your own blog.
Why?
>Thank you Jamie. This will sound crass, but I don't know any other way to say it with honesty: at least now we know why you and Judy were fired.
I think that the mistake was made when they hired Mikovits and put all their eggs in one basket. That was a huge mistake, and Mikovits wanted to have it both ways, strongly suggesting that XMRV was causal, but then later saying that it wasn't, but that there was a link. She, and you, and Annette Whittemore chose to follow the Hillary Johnson "HIV-like" theory while ignoring the advice of doctors who have been working for decades with CFS patients, who said there are other factors involved.
If this is a huge blow to patients, it's the fault of the Whittemores, Mikovits, Hilary Johnson, and you Dr. Jones, for probagating the hypothesis that there is one cause for this disease (which you did soften in the last six months).
Time to move on to therapies and hypotheses that are working for people.
>Like what, Anon 1:12?
It seems to me that everybody's patients are still sick? A retroviral etiology is the best framework we've ever had as an approach to the illness, the fact that it isn't the same as HIV notwithstanding. It's helped me and my daughter tremendously.
Jamie
>Jamie, thank you so much for being the messenger with the likely hood of being shot. You are one brave women with great integrity.
I disagree with your title. We are not back to square one. I am sure you agree with me that the Whittemores and the work of the WPI have moved ME/CFS research forward. Not only do we now have a direction in which research needs to be going, i.e. looking into retroviruses, but we also have more researchers, e.g. Ian Lipkin interested in ME/CFS. The fact that people are now trying ARV treatment and showing improvement are a direct result of the WPI's research. Let's never forget that the WPI set milestones in ME/CFS research.
>The WPI and Dr. Mikovits got the stone rolling with regards to XMRV and ME/CFS, they are the ones responsible to find out what was/is going on and communicate it to PWCs, the scientific community and the public – no one else can do that.
Being wrong is OK, but we need to know what went wrong.
Nothing is more difficult than orderly reatreat from an unholdable position. Clausewitz
>Another anonymous here:
Also, don't put any blame on Lombardi here, it wasn't his contributions to the science article that was retracted.
>http://scienceblogs.com/erv/2011/09/xmrv_and_chronic_fatigue_syndr_29.php
>Thank you for this, Jamie.
I suppose the CFI has come at a good time.
>The CFI is a laughing stock already. No proper definitions and talking about PEM as a hypothesis!
Mikovits and Ruscetti's research needs to continue. That must be the priority. They discovered HGRVs are infecting people with ME/CFS.
>The CEO shut down research. If one person was fired the whole thing would not have been shut down. So it is not about people bring sacked.
And to the anons making claims about spreading rumors, people can see you have nothing to back up your claims.
>to Lisa Petrison…
Congratulations! You have realized that while they could have said whatmyou said about mold, they have CHOSEN not to pay attention or to mentn it.
Now the next step for you would be to walk away,go preach elsewhere or go straight to Washington and wave placards on the sidewalks.
You sound just like the Jeovah's Witness knocking at the door until somene answers and listens.
Move on… Just an idea…
>Oh for goodness' sake Lisa, stop bullying Dr Jamie. She says what she wants to, on her own blog. You could start a blog yourself, and post your evidence there.
Perhaps you should re-read her post at 11:26? You do not summarise it accurately. The mold hypothesis works for some people but not for all.
The WPI with Dr Mikovits have moved ME/CFS out of the dark ages (again). I hope both the WPI, and separately Dr Mikovits can continue to search for answers for us. Lets work together to hold on to the high profile their collaboration has given us. Let's keep supporting each other. Lets keep looking for answers.
>Dr Jamie, did the Whittemores know that you were going to publish this? I'd like to know if they've had the chance to make this public themselves and chose not to.
Thank you for telling us what you know. As a patient, being kept in the loop seems to be a luxury that many seem to be unwilling to grant us.
>And Anonymous 1:12: What other therapies and hypotheses, if I make ask? We're back to the dark ages.
>HGRV research is continuing. This CEO closing the research lab has no relationship to the science.
>The saddest part, is losing the possibility of doctors that actually have knowledge and expertise in treating this illness.Most of all ,I want to be believed that I am very ill, not very nuts or very lazy!We need more informed doctors, most of all!
>Dear Jamie, I am in shock, but it does not come as a utter surprise to me. Still, trying to read through all of your text I cannot make sense of it at all. Is it because I am to sick in the moment to understand such long explanations or are there pieces missing ? All I understood that the WPI research center got closed by the CEO of the WPI and Judy Micovits will continue her work on HGRV somewhere else ? Why ? Can you please explain in a few simple sentences ? Thank you for your honesty and understanding that we patients/advocates need desperately clear answers.
>Dear Dr. Mikovits,
I just wanted to say a big thank you to you for all you've done in the last year or two for people with ME and CFS.
You have almost single-handedly, Read more
>Sweden is hiring 100 researchers and doctors to cure all the syndromes…Screw them if they don't work for the people…Judy is better off without them…
>Dear Karina and others who are understandably and rightly asking for more details. I feel what you feel. I know how desperately we all want those details. We want to know, what really happened?! What the heck does this all mean? Explain this or that angle/detail! Or at least that is how I personally feel right now.
But the fact is that in a situation like this, in a messy and political divorce, there must be a million angles and details that people are not at liberty to talk about, perhaps because of internal and external politics, or because of legal issues, or because of the hope that the vital research can indeed continue elsewhere. That hope is likely coupled with a desire to not attribute blame and point fingers which would thus burn bridges. Besides, I wonder, maybe the full situation of what exactly happened is not entirely clear to Dr. Jamie, because maybe she was not privy to it all (she did, after all, write that some of what she knows is "He said, She said"), but nonetheless, perhaps she still wanted to get out, and make public, what info she felt she could. Legal issues alone can hamper full disclosures. I can imagine that Dr. Jamie had to choose her words carefully in disclosing what she did disclose. It must have been like walking through a mindfield to write this and avoid using language that could get her in legal hot water. I'm just assuming this and extrapolating here to our situation. Because of our previous pre-illness lives in the corporate world or whatever field you were in before you were hit with this disease, we know that this above dynamic I just described is how it would play out when someone tries to disclose something in the heat of a difficult situation. They may not be able to disclose everything. So it may be that we can't get all the info we want now. In time it will likely come out and we'll understand the full picture. But for now we know at least some of the bare facts, and for that I am grateful. (Who will write Osler's Web Part II? Hillary, we hope it is you. And if not you, then we hope it is someone!)
>**blows mold spores at Lisa Petrison, PhD**
Begone, zealot!
Am I the only one that is not surprised by this?