Square One

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

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126 thoughts on “Square One

  1. >This is simply a very sad situation. Originally, the purpose of WPI was to take the evidence that a handful of top experts had pretty much come to unity on,and get it published. All sorts of biomarkers, from immune abnormalities to abnormal cytokine patterns, research in the field of biomechanics, information from neuroimaging, and evidence of multiple pathogens – beta herpesviruses, EBV, Coxsackie B and perhaps other enteroviruses, mycoplasma – take all this information that has been collected for over two decade, and publish it in mainstream scientific journals. Second, the institute was to be a place where young medical students and newly minted MDs could learn about this highly complex disease. Finally, there was to be the patient component, a clinic that would help patients, provide subjects for research, and keep the scientists' feet on the ground.

    In other words, WPI was to be a center of excellence for CFS ( Fukuda 1994), ME (Ramsay), and ME/CFS (Canadian 2003). It was a good idea and a good plan.

    The Whittemores hoped that with their seed money, it would be possible to acquire the respect that would lead to government $$s. And that is where the bulk of the blame MUST lie. As long as the US government allocates $1.65/PWC/year – less than one percent per person spent by NIH on MS, which is hardly an overfunded disease – research on this disease will always be in crisis mode.

    I wish they had stuck to the original plan. But how do you ignore evidence of a retrovirus? Yes, mistakes were made, and I have written about them myself. Instead of going on a publicity campaign for XMRV, it would have been wiser to go back to that other research that had been the original intent. And VIP labs should definitely not have gone commercial with a test without first verifying with the original patients who tested positive in the study.

    But I am hopeful that the retrovirus theory brought the disease to scientists for the first time in years, and some really SAW us, really began to wonder what this was all about. Bell, Peterson, Cheney, Rowe, Klimas, Bateman, and now Montoya and Bateman, could have told them a long time ago, but they weren't listening. More are listening now. The CFI is a reason to be positive.

    Had the WPI findings not come out when they did, CDC might right now be on the fast track to Cognitive Behavior Therapy and Graded Exercise. I don't know if the NIH would have held that State of the Knowledge workshop, which had scientists from different fields talking in the hall about collaboration. We are, I believe, better off at the end of Sept. 2011 than we were at the end of Sept. 2009.

    I am saddened to hear that WPI is closing, and I wish Dr. Mikovits the best of luck. I believe they have helped move us to the realm of science from the world of psychobabble. That will have been a great accomplishment.

    So do not give up hope.

  2. >Yes, Mary, you are right. The WPI accomplished more for this disease in two years than the CAA did in twenty.

  3. >Thank you Dr. Jamie. I am sorry to hear this but have no doubt in the science. It is always possible to have good science and bad management. Though shut down seems extreme. Seems VIPdx should shut down?
    From our perspective, the work will continue. Love the Whittemores and Judy Mikovits!

  4. >Dr Jamie,
    Thank you. This is terrible news and you have told us in a humane way, direct and kind. I very much appreciate it. Please continue to keep us abreast of the news. We need it now more than ever.
    With warmest regards

  5. >"So do not give up hope."

    Easy to say. Not so easy to do.

    I've been sick for seventeen years. Diagnosed with CFS in 1995. Developed MCS in 2004.

    Whatever is causing the disease, it has taken away my job, my career, my friends, my beloved home, my wonderful hobbies, everything I owned, everything I worked for all of my life.

    With all the losses, and with no success after thousands and thousands of my own dollars wasted on treatments of many kinds – all of which failed – at times the thought of quitting the fight and opting for permanent pain relief has been very, very tempting.

    Then came the Science article in October 2009. A possible cause, the potential for effective treatments. My waning hopes were rekindled. Plans to leave the planet put on hold.

    Through two years of controversy, even as my own condition worsened dramatically, I kept the faith: Dr. Judy and the WPI will prevail.

    Now this. The WPI shut down. Dr. Judy out of a job. Reputation in shambles?

    We can hope that all this has stimulated research on other fronts that might prove useful. We can even hope that Dr. Judy will land somewhere that will allow her to continue her research. And that her research might eventually bear fruit.

    But what about today? Any such fruits must be years and years away. Today I can no longer shop for my own groceries. Taking a shower is brutal. If the trend continues, soon I will not even be able to prepare my own food. How long until I need to be rolled to the toilet in a wheelchair?

    Can I allow myself to become such a burden on my family? If and when the time comes, I tell myself now, I can only hope that I have the courage to depart before my illness also wrecks the lives of those I love.

    "So do not give up hope."

    Perhaps. But over time, as hopes are dashed and dashed again, perhaps what we may hope for will change.

  6. >someone wrote: **blows mold spores at Lisa Petrison, PhD**

    please do not be mean. i know folks can be mean on the internet, as there is no real accountability, but we need kindness in our community, not threats and meanness. this was just plain mean. lisa is trying as hard as she can to inform the world of what she feels is important. this is an open forum, in a way, this comments section. and tho someone may not agree with lisa, she has a right to comment. if you don't like her comments, maybe you can ignore them instead of be mean.

  7. >@Alisonnic

    Why do you attach a claim that Dr Mikovits reputation has been damaged? The research department alone has been closed.

    HGRV research will continue.

  8. >dr. jamie, thank you for sharing this information. i do worry about our future. there are, however, some treatments out there that seem to be helping patients (GcMAF, and separately, the antiretroviral Tenofovir). the patients will persist. we are tenacious. we are creative. but goodness knows we have been dealt a bad blow. in fact, bad blows over and over again for 2+ decades. it is the patients who have no family, who are bedridden and can't care for themselves that i worry about most, of course. the WPI was all of our hope, but the WPI was these severe patients' lifeline. — rivka

  9. >The fact Judy was locked out suggests there may be an investigation ongoing. A recent blog offers convincing evidence that Judy lied about some of her data. If she lied on new data, could she have lied about old data?
    Since accusations about Judy's honest have surfaced in the past, it would be both proper and important for the WPI management to investigate her books, and this reason for Judy's departure makes far more sense than what has been offered up. Let us pray that this is not the case, and hold judgment on WPI's decision until we know the facts.
    At least we can thank Judy for raising the profile of CFS!

  10. >@Anon

    Who has said Dr Mikovits has been locked out?

    "The entire WPI research program has been closed by the institute's CEO, and the facility is now locked down"

    Gels of the same test should look the same. So why has ERV put doctored images on her site? ERV should be investigated for false accusations regarding what is only a slide at a conference. ERV made herself look stupid again.

  11. >To Judy or Judy's friend:

    But they are NOT gels of the same test! They are completely different tests suggesting that one of them was false.
    Quoting from the blog:

    "Two bits of data describing and explaining to two entirely different things… and yet I can make the two images look identical!

    I AM MAGIC!!!

    Am I magic…?

    …or is this a case of arrogant, bold-faced, lazy-ass scientific fraud perpetrated by an apparent pathological liar?"

  12. >There's actually a lot of good news in this:

    Drs Mikovits and Ruscetti stand by their research and still think they're on to something.

    Dr Mikovits has research grant(s) and is in talks with other institutions to find a new home for them and for her.

    A great deal of other research indicating a viral and/or retroviral association with this disease has had some attention redirected to it.

    The research and the criteria have been refined somewhat by the new International Consensus Criteria, which Dr Mikovits helped create. This step alone is a great development in this field. It demonstrates that researchers all over the world ARE still interested in finding answers.

    When one door closes, another opens.

    I still have plenty of hope.

  13. >They should look the same if they are done using the exact same variables. Where are you getting this idea from.

    Why has ERV put up changed images if she wants to point out they look the same?

  14. >Pay no attention to erv. She is the pathological liar, if there is one. Looks like she may have her Tourette's Syndrome under control, though, as there are no profanities and obscene name calling in this edict, unlike so many others like it.

  15. >To Judy or Judy's friend: the slide came from your powerpoint presentation.

    Quotes from the ERV blog:

    "If you run the exact same gels (store bought) at the exact same time in the same unit, and did the transfer at the exact same time, it is totally possible to get very similar looking gels (dont count on it, though).

    Identical gels? No.

    And its not just the bands that are identical– its the garbage.

    I didnt include this figure in the post, but I made it. I highlighted mistakes– a pipet tip through the well makes a nice vertical drag. Non-specific blobs lighting up. What a strange coincidence that the exact same random mistakes happened in the exact same locations the exact same way!

    As RRM stated, Im sure there is a TOTALLY REASONABLE explanation for this. Im SURE it wasnt intentional. But even if it were that damn post doc again– what does this say about QC at the WPI? What does this say about their standards? What does this say about how carefully and how critically Mikovits is looking at her own work?

    LOL. That damn post doc *shakes fist angrily*

    Posted by: ERV | September 30, 2011 9:50 AM"


    "those artifacts are very damning, and were the first things I looked for. "Here's a little blob in the upper left corner, is there one of the same size, shape, and location in the other graph? Yes. [repeat for all blobs] BUSTED!"


    "I think with this trick you finished a whole institute!

    (Standing ovations)


    "Have you reported this to the office of research integrity at the NIH? "



  16. >alsonnic, i know how much you are suffering. it sounds like we're in very much the same shape. just know one thing: your family, kids, will not survive your suicide and no amount of explaining beforehand will help them. they will always feel guilty and depressed (and probably suicidal). i don't advocate staying in pain forever, but god, what a choice…

    we've got to try to hang on… for them. wheel chairs are not the end of the world. and it will mean death eventually. at some point, but not yet. hope? not much. but family… aye. and i'm even too sick to see mine very much.

    look… you are not alone. email me if you want. just click on my profile name and my email is on the left. hope you can hang in there with me and many of us who half take care of ourselves while often wishing we were out of here. big love.

    ~laura, astoria, oregon

  17. >@ERV: I think you should look for psyhological help!! You really need that, and buy a book about proper diction. Stop Spamming this blog. thanks

  18. >dr. d-j, thank you. at least we now know about vip labs. i'm wondering why patients don't just sue them in a class action. good practice, right, for the cdc someday? :>>)) my hmo wouldn't get me tested until "the science was settled." i was mad at the time. now? well, hell. thank you as always for your beautiful honesty. you're still my d-j! big love. ~lt xoxoxoxo

  19. >@ Anon 10:25 AM

    The last images on ERVs blog are not those same gels. So why were they altered?

  20. >Judy,
    If you are saying the ERV switched the gel images, then you should state this on her blog because serious scientists are saying that you should be investigated, and that a letter should be written to Science. The images came from your own powerpoint apparently, and were seen when they were posted on THIS SITE.
    "you really need to get this submitted to Science before the close of business today, so Science can get it peer reviewed and responded to over the weekend. " They are expecting you to blame it on a post doc and say that the images are switched.

  21. >@Anon 10:58 AM

    What is wrong with you?

    The later images ERV has up are not the same. Why do that?

    They would look the same as it is a repeated experiment using the same variables.

  22. >for the record, i found the comment about blowing mold towards lisa both mean and hurtful. — rivka

  23. >I don't understand why anyone (i.e. in the comments here) is heralding the "good news" of the 10 million dollar grant to the Chronic Fatigue Initiative. The money is specifically earmarked to NOT study HGRVs/XMRV — what else do we actually have (I'd love to see all of those so-called treatments and so-called cures, as my friends and I are all getting sicker year after year)? I have watched all other research go nowhere for almost 20 years. What respectful person would name a research organization the "chronic fatigue" initiative? We are still supposed to be jumping up and down for joy for THAT? Most people have been able to make the transition from XMRV to HGRV, and yet it takes a quarter of a century to stop calling this illness that is not "chronic fatigue" (a condition that afflicts up to 25 percent of the population) by it's real name? Come on. It's hate speech, hate speech funded by 10 million dollars.

    And then, quietly, the American Psychiatric Association is probably going to get their new diagnosis for ME/CFS — "complex somatic symptom disorder" (CSSD) — passed in the DSM-V, due out next year so that those of us malingering to bedbound-ness can be locked up in psych hospitals.

    The "Chronic Fatigue Initiative" is being largely run by someone named Mady Hornig:

    "Dr. Hornig was the prime mover in designing the research plan and will be shepherding the CFI's research at the Center for Infection and Immunity," said Dr. Lipkin, the director of CII.

    Mady Hornig is a psychiatrist. A psychiatrist who is also affiliated with government biodefense:
    "Within the Northeast Biodefense Center, an NIAID regional Center of Excellence in biodefense and emerging infectious diseases, Hornig is a member of the Core Oversight Committee and the Governing Council." http://en.wikipedia.org/wiki/Mady_Hornig

    It does sound like she has dome some interesting work on autism (and she has some interesting Gulf War Syndrome affiliations, i.e. with Boyd Haley). But still, she's a psychiatrist. And the biowar/biodefense/psychiatry/eugenic overtones of this should not just be ignored. What does it mean that 10 mil. is being given to an institute with an insulting name to NOT study retroviruses? Isn't the writing on the wall pretty clear here?

    It just seems important to note.

  24. >Just posted this to anonymous, better known to some as Abbie Smith.

    Abbie, where were these two slides presented? You labeled one Science which was, I assume, the photo published in the 2009 article. Then you label one IACFS/ME which I assume means it was presented as a change in evidence for XMRV in a couple of patients' blood samples after adding a chemical to the blood sample ONLY THE TWO PHOTOS ARE THE SAME.

    I don't get it. It seems this means that Mikowits accidentally used the wrong slide at a presentation. How does this mean that there are no actual contagious retroviruses from mice that are now infecting humans? Also, how does this mistake with a photo at a presentation mean that Lo and Alter's work finding similar retroviruses in CFS patients is a lab contaminant?

    Speaking of lab contaminants you might want to read this research article and take care of yourself.

  25. >So…. Was it really a mistake or did Judy just get caught in yet another fib? Where there are small fibs there are also bigger fibs.

    I don't think her detractors believe this was yet another "mistake"

    Here is a recent blog post on ERV's site:

    "So since it's film instead of digital, that means whoever scanned it was staring at the written labels while doing so…? Wonderful.

    By the way, we've seen something like this relabeling before, noticed a few months after the original WPI paper was published.


    "four of the 12 CFS subjects (WPI-1118, 1150, 1199 and 1125) included in the Science paper were also reported to have cancer – either lymphoma, mantle cell lymphoma or myelodysplasia."

    References for above:
    http://www.hhs.gov/advcomcfs/meetings/presentations/xmrv_cfs.html (Part 5, Slide 1)

    The WPI said:


    "Were any patients with lymphoma mentioned in the XMRV study?
    Blood samples from the WPI repository were chosen at random and there were no patients chosen with lymphoma or mention of lymphoma in this study. Another preliminary study was done at a later date that had nothing to do with the XMRV Science publication."

    When asked about the matching ID numbers:

    http://www.facebook.com/notes.php?id=154801179671 (Page is down.)

    "Did any of the samples used in the original study come from patients who ultimately developed cancer?
    Yes, one."

    When asked again to explain the matching ID numbers:
    There were no patients with cancer!!

    When asked again to explain the matching ID numbers:
    We will answer all questions.
    Could you please tell me all of your questions again?"

    Were 2/3 of those patients really positive? Why didn't WPI produce more info on those patients? Is this why she had a falling out with Dan Peterson?

    Where there is smoke, there is fire.

    WPI owes us an apology — as well as the truth.

    Come clean Judy!

  26. >"The scanned image always has all the labels and stuff that everyone always puts on their gels? Right? And the photoshopping usually just includes cropping and maybe some contrast adjustment? And the captions are put on the slide just to replicate in a pretty font what the gel already says, right?

    Wouldn't it be unusual to take a gel that already had all of its labeling cropped off and use that for a presentation? Wouldn't you pretty much always start with the original? Unless you were doing a review and wanted the exact same slide? And then it would be exactly the same, the same font, the same contrast, the same aspect ratio, the same labeling, the same cropping, the same everything? Right?

    How many gels does a lab generate and how many MB does a scanned image take? If one was a hot shot PI and had a top-of-the line laptop, wouldn't one carry copies of the gels you wanted with you? If each gel is 1 MB, then 10,000 gels is only 10 GB. 100 gels a day for 3 years is only ~100k gels, at 1 MB that is only 100 GB. My cheap-shit laptop can hold that much.

    If you were using the gel as a slide to discuss specific results, how is it possible to be so confused as to use a different slide? Presumably there is a gel that does have the exact same labels as the image in the slide. A gel that uses wacky controls and doesn't make much sense. Presumably WPI will be able to produce the full image of that gel that shows the actual wacky labels and that also shows how nearly identical it is to the Science image such that they could be so easily confused. "


  27. >The blown up images on ERVs site have never come from the gel in the paper or the slide. It is a put up job. They should look the same as they are from the same experiment. ERVs anonymous creator went a step further are created images magically. New details and blots repositioned. That proves it is a put up job.

  28. >Jamie, what do you have to say about this blog suggesting fraud or a really gross oversight that is beyond eyebrow raising–cited already here today but I'm citing again?


    I could say so much more but why…how about: Sheesh.

    As to Lisa's comment, I think she was trying to make a point–that Dr. Jamie says science has been ignoring the truth; but she feels doctors have been ignoring another truth.

    What does "ignore" mean? Well, imo, you can't charge $300 an hour and run expensive tests and add in phone consulting fees, to tell someone to essentially go camping in pure air.

    Jill Neimark

  29. >There is only two possible explanation for those last images on ERVs blog. ERV would have had access to the originals or they are a creation. We all know she would not have access.

  30. >Hi Jill,

    I agree. Sheesh. I don't read her stuff. Too much of an agenda and hurtful intent. Also I don't respect people who won't identify themselves. However, it looks like I may be compelled to think about this slide. Sigh.

    I'm sorry about Lisa. It's a really weird one for me. I feel like everything I say gets twisted. Like she is trying to use me to represent something that I don't. My reaction is always: Huh? Where did that come from? Why is she striking out at me?


  31. >Why mention Hillary? Did WPI evaluate her work? Did they take the lessons of DeFritas' travails into account?

    On the ever-shifting HGRV-misnamed-XMRV story, I'll wait 'til the Ruscettis speak from afar, if I believe them. Besides Dr. D-J – irregardless of what ERV swears (I often think she's getting paid straight from Fauci for her dirt-digging) – who else from this enterprise is left to trust? The media have made Jamie out as a blind nutcase; to the contrary, she's never sugar-coated any success stories. Some people have been helped by ARVs, yes – even greatly, by whatever the mechanism – and some haven't. 'Not everyone's panacea. And much as I admire and would like to continue trusting Mrs. Whittemore for all that she tried to do, for her sick daughter and all of us, what she was last telling Sam Shad didn't quite jive with Jamie's appraisal. I was really starting to wonder what WPI could possibly have up their sleeve. Better to know now.

    A lot is coming together: Peterson himself "thrown under a bus" as we were warned, Vernon refusing to cooperate. Hey, I don't blame Peterson; you can't chart the course behind your medical director's back. THAT was a betrayal. But Vernon, NCI, Stoye, all the doubters with all the other motives we could rightly suspect – to think they might have seen a light this time that we didn't sickens me. That the pundits called it right in calling VIP-Dx an outright racket was the last thing I anticipated.

    To all outsiders looking in, THIS has given the CAA more respectability than it could ever earn itself, operating as the government's front.

    Thank you, Jamie, for your charity, your courage, and your candor. As they say, the truth will set you free. The best of continuied improvement to you and your daughter.

  32. >Why did ERV believe that people could not use their naked eyes to see the images don't match the gels in the paper or slide? We all know she won't have the originals, so why do that? incredibly stupid.

  33. >"I'm sorry about Lisa. It's a really weird one for me. I feel like everything I say gets twisted. Like she is trying to use me to represent something that I don't. My reaction is always: Huh? Where did that come from? Why is she striking out at me?"

    It's an opportunistic time to make a land grab for the many disgruntled ME patients who through many years of suffering and being subjected to barbaric treatments, choose not to reside in the paternalistic thrall of the medical establishment.

    Since the band split up some will follow their favourite members, others will find a new band and so on.

    I'm sure many would have us, who have looked on, hoped and supported, rendered foolish following this turn of events. I have always been far more concerned by the road not travelled than the one I was afraid not to take a risk on. There is no greater trust to be engendered from the concensus of a churnalistic media, or moderate advocacy groups, shielded from true patient culpability, kowtowing for only the faintest whiff of biomedical acceptance.


  34. >Judy or friend of Judy wrote:

    "Why did ERV believe that people could not use their naked eyes to see the images don't match the gels in the paper or slide? We all know she won't have the originals, so why do that? incredibly stupid. "

    I just looked and it looks like the same gel with my naked eye…

    The scientists on ERV's blog are expecting you to claim that it was a mistake and that someone who worked for you/Judy accidentally switched the slides.

    That might be more credible?

    Good luck on this one!!!

  35. >ERV is a person who calls for a return to civility in science and in the same breath calls Dr. M a 'c*nt' and refers to the 'oh-so-fatigued Andrea Whittemore.' That is just a small taste of her trash. I suggest noone listen to her. It is a scientific fact that she is the leading point-source of word-pollution in the blogosphere. Ignore her and she will go away, most people do already and are the better for it.

    According to WPI on their facebook page, Dr. M was let go, but the lab is still up and running. They say that the reason for termination was that Dr. M would not let another group use a cell line.

    Everyone has their own story about any given event and that story may change depending on memory, what the context is, what they want others to know etc. So we will probably never get the full story. Certainly not right now in the 'fog of war.' I for one don't have any energy to spare on getting angry or depressed about a situation which we don't know the full story about.

    I urge everyone to reserve judgment until things settle. We all need the energy and health of each other, so let's not put ourselves on a needless emotional rollercoaster. Easier said than done, I know; i felt like the rug was pulled out from under me and I was beat up when I read this blog but we can try.

    It may be that we will look back on this and think that it was ultimately inevitable that Judy and WPI would have to part ways. Other parts like the XMRV testing may be more dark cloud than silver lining. I feel really bad for patients who shelled out so much money for a test that seems invalid.

    Hopefully this is all the bad news. Ecoclimber on PR is claiming this is just the beginning of the problems to be revealed about WPI. I hope not.

    At least WPI and Judy can both go their own ways with ME research now. There may be complications with intellectual property, who knows what will happen; but this marriage had to end. Given that, better sooner than later.

  36. >@Anon 2011 3:55 PM

    What do you expect from the same experiment. Soft images do not magically produce details, so where did the magnified images come from?

    Do you have an answer for that kind of magic?

  37. >http://www.chicagotribune.com/health/chi-chronic-fatigue-syndrome-paper-10032011,0,6792877.story

    Manipulation alleged in paper linking virus, chronic fatigue syndrome

    By Trine Tsouderos
    Tribune staff reporter

    The journal that published a high-profile paper linking chronic fatigue syndrome to a retrovirus is now investigating allegations that a figure in that report was manipulated.

  38. >Jamie, it's a tough one for me, too. I look at what I can do today after much camping and often not even in the pristine wilderness I prefer, and how debilitated I was on leaving NYC two years ago this December. It amazes me actually. It hasn't cured longstanding problems or inescapable sequaelae; I'm not claiming 100% wellness. But it is profound and frankly I put any toxin in the category of excess load on s compromised system. That includes chemicals, molds, bacteria and who knows what else. Out in nature I don't have to analyze it. As one scientist at Tufts said to me once, Zero plus zero plus zero does not equal zero. It equals one. What she meant was one toxic assault might not cause obvious clinical consequences. But add them up and they most definitely did. Because modern life is so astoundingly unhealthy, it's impossible to parse out.

    I recently encouraged two classically "cfs/Lyme/mold/mcs" desperate people to try camping in wilderness as an experiment. Both have had quick gains. I was so touched and moved when one emailed me from the pecos mountain meadow where she is noe camping that the air was magnificent and she kept waking up at night just to deeply breathe it in. She has gone from desperate to "knowing" she can heal in good air.

    It's not that original really. Probably the tb sanitoriums worked the same way. Rather than die in agony you sat outside in the sun in good clean air all day and you got well.

    It isn't an answer for all. It also is self directed and requires no doctors rx. It can be a huge hassle, too. There is no one answer. Lots of different pathogens at work IMO and lots of toxic assaults, too.

    Jill Neimark

  39. >Well, I've just read the WSJ and Chicago Tribune stories. As the song, The Gambler, says, You've got to know when to hold 'em, know when to fold 'em, know when to walk away, know when to run…

    Looks like it's time to run…

    Jill Neimark

  40. >"Science is talking about the allegations against ERVs unnamed designer of the non blurry gels. As they would not have been in possession of the originals." I can't possibly see how this matters, the gels are obviously the same – high low resolution it doesn't matter. I will point out that we know from the Tribune article that there is a more original copy of the Ottawa slide show floating around via emal. I will also let you know that the copy of Lombardi et al 2009 behind the paywall at Science has higher resolution figures than the reprint at http://www.cfids-cab.org/MESA/Hillenbrand.html. Maybe that will explain the "confusion"/embarrassingly transparent deflection.


  41. >I cannot believe someone has posted a link to ERV's blog here…

    Are there actually people who are interested in her views?

  42. >So let me get this straight… The WPI discovers a potential retrovirus. Then, their own daughter and other people are rumored to have improved on treatment for said retrovirus – demonstrating the validity of their finding. They even go so far as to communicate this to the Journal Science in defense of their work with letter a few months ago ("Tenofovir moves this illness…"). And now they go and throw the researcher who found it under the bus? Thats totally nuts and makes no sense whatsoever. Stand by your work guys.. really.

  43. >Wow! Take some time to actually read between the lines. Grants are given to the Institution not the researcher. They are the sole property of WPI. WPI has to look into allegations and take appropriate action if something wrong has occurred. Why doesn't everyone take a big deep breath and let WPI do their jobs. Research will continue , WPI is not closed and no the end of the world isn't coming either. I have to object to this sort of fear and hate mongering it's really beneath you Dr. Mikovits and Dr. Deckoff Jones. How many people do you know would put 5 million dollars into research to help millions around the world? Have you ever thought there are other things going on in soneone's life that could lead them to making mistakes. Before you make judgments on such a ridiculous level you should really look at yourself. Hear no Evil, See no Evil, Speak no Evil.

  44. >I'm sure ERV got the original from John Coffin or Jonathon Stoye original reviewers of the paper as well Abbie Smiths mentor at University of Oklahoma. They hate Judy/ WPI the question is why?

  45. >If Mikovits was let go on Thursday and ERV put up her artsitic closeups on Friday they cannot be connected. Some people have very poor logic.

    Anyway ERV wouldnt have had the original gels so they are very much art.

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