A Sad Day For Patients

The apparently concerted effort to deny patients an answer or treatment for our disease continues. Science Magazine published two negative papers today, along with an Editoral Expression of Concern, or EEC. Dr. Mikovits was informed on Friday, before Memorial Day weekend, though the second of the two papers was accepted for publication on May 15. The co-authors of Lombardi et al have unanimously refused to retract.

Here is Dr. Mikovits’ response to the EEC, link, Annette Whittemore’s response, link, and the response of the WPI’s Clinical Advisory Board, link, sent to Science over the weekend.

The timing of the EEC seems “premature”, to put it mildly, with Dr. Lipkin’s and Dr. Maldarelli’s findings still pending. There is nothing new in either paper that should have precipitated this.

I receive many questions about why Dr. Peterson is no longer working with the WPI, which I have generally tried not to answer, because I wasn’t there. But, as of today, I think it safe to say that not only is he not working with us, the people he is collaborating with seem intent on destroying the institute that bears his name. I am in the middle of it, and it is unfathomable to me. I have never met Dr. Peterson, but here is my best guess, as the one following in the wake of this attempt to destroy the institute. It has to be all about intellectual property, and revenge. Nothing else makes sense. Why would he provide already tested specimens to Konstance Knox, who has a vendetta against the WPI? Knox worked as a consultant for VIP Dx and left under “difficult circumstances” related to her business practices. Science should have been aware of this history and made a serious inquiry of it. They were alerted to it, but proceeded to publish this morning anyway.

Taking the sordid details out of it, the Knox paper is yet another entirely negative paper where they proved they couldn’t find it in anyone. Again, there was no real attempt to replicate Lombardi et al, only the innuendo that it was somehow disproved by this paper, by virtue of it being Peterson who provided the specimens. How could Science, a premier journal, publish such shoddy work, sloppier than the Singh paper, though with the same logical fallacy? It can’t be both a contaminant and not there at the same time. Which is it? The totality of the evidence says neither. Why is no one asking the real question? How is it that VIP Dx finds approximately 4 out of 10 patients positive, not zero and not 100%? How do you explain contaminating only some of the specimens in the same run?

And why do all of these scientists feel compelled to practice medicine without licenses? When Konstance Knox gets sick from the infectious contaminants in her lab, shall the doctors remind her that she said to the press that patients shouldn’t have the right to try antiretroviral drugs for the viruses that she is too incompetent to find (or wasn’t really trying to find in the first place)?

Why would scientists who know better reach obviously incorrect conclusions about their own work? Why would anyone want to make XMRV go away, when there’s so much smoke? The money involved is enormous. Did anyone notice that a few of the co-authors on the Knox paper work for Abbott Diagnostics? Do you think Abbott would like to own The Test?

It may be that the sequence diversity from patient to patient is too large to detect by PCR for a particular strain of HGRV (human gamma retrovirus). Replication competence probably involves recombination events. It may be that it isn’t even a few viruses, but many. PCR only finds what it’s looking for. It is going to require rapid deep sequencing. The science is up to that technology, but it is still too expensive to use on the likes of us. They’ve sequenced the entire mitochondrial genome of a Neanderthal. When will they take a look at ours?

So if they make it go away, they can rediscover it later, with enough sequence variation to call it something else. And while the vultures fight over the carrion, new babies are born with it, teenagers are collapsing with an incurable illness and old people are dying prematurely, after decades of relentless suffering without help. Today is 600 days since Lombardi et al was published. It is shameful. Please express your outrage to Science.

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89 thoughts on “A Sad Day For Patients

  1. >BRAVO Anonymous June 1, 2011 10:07AM for bringing us back to a primary, but essential, point…

    Researchers must be held accountable to following the scientific method. This has not been done since the 2009 Science publication. The only acceptable research will duplicate the original study TO THE LETTER. All else is meaningless if attempting to prove that the WPI's original work is flawed.

    May we never lose sight of this.

  2. >It's probably been going on for 1000s of years but it was most likely the tobacco companies that tipped the balance into using science more for widespread obfuscation rather than advancing knowledge. Frankly, I am sick of hearing about the wonders of the scientific establishment. It has failed to make any progress in CFS, Autism, many cancers, etc, etc. I think it is high time to encourage other approaches perhaps by Google and others in Silicon Valley to use raw computing power to seek answers. I want results not something that makes a scientist feel all warm and fuzzy. The current system is broken and needs some serious change.

  3. >People are calling out Dr. Deckoff-Jones for revealing the conflict of interest involved in this study by Peterson/Levy. Where is the outrage at Dr. Peterson for purposely trying to shut down WPI with bogus science? Once again, no replication study.

    There is big money to be made on the test that is approved for finding these retroviruses. Always, follow the money. Science did not act professionally by calling for a retraction just before a holiday weekend and then leaking to the press to have a field day over the holiday weekend. They need to investigate the conflicts of interest that Jamie mentions.

    One thing I have learned is to look at the bogus studies and the things the CDC says NOT to do, and consider which of these things may be beneficial to me.

    It is time to speak up, not rudely, but firmly and loudly about the injustice to the patients being propagated by those who wish to make a buck on the backs of suffering people.

  4. >I'm a patient of one of the authors of one of the recent "no evidence" papers. At my new patient visit I had to sign a consent form acknowledging that I had no rights to any financial benefits produced by any new products, tests or discoveries derived from studying my blood sample. How can intellectual property/profit *not* be factors?

  5. >@ Bubbles… the "consent form" you had to sign speaks volumes, doesn't it?

  6. >XMRV and chronic fatigue syndrome: So long, and thanks for all the lulz, Part I | Main

    XMRV and chronic fatigue syndrome: So long, and thanks for all the lulz, Part II
    Category: XMRV
    Posted on: June 1, 2011 11:00 AM, by ERV

    ERV readers will absolutely love this paper.

    Recombinant Origin of the Retrovirus XMRV
    Okay, we all know ERVs are awesome evidence for evolution and common descent. But, imagine we could do classical ERV research one better. Imagine that we had DNA from one of THE common ancestors of humans and chimpanzees– an ancestor who is the proud owner of a new ERV. Imagine we have its DNA, and the DNA of its parents, and the DNA of their parents. Then imagine we had the DNA of its children, and their children.

    Imagine the fun evolutionary research we could do, what we could see, with those kinds of samples! No estimating– literally watching and recording the event happening, in DNA.

    From an HIV-1 perspective– Imagine what we could do if we had HIV-1 viruses from The Human who got infected with HIV-1 Group M. We had the same SIVcpz viruses from the primate who infected them. And we have all the grandparent viruses and babby viruses too. No estimations of time-lines based on phylogenetic trees– We would know exactly what happened, while it was happening.

    Or, you can think of it *exactly* the same way scientists in HIV vaccine studies
    and criminal HIV infection investigations look at the natural history of retroviruses– Person A was HIV-1 negative, negative, negative, negative, and finally positive at a time-point. You could then look at HIV-1 sequences in putative infectors and determine 'who done it' and almost exactly when it happened.

    That is the incredible study that Pathaks group was able to do at the NCI with XMRV.

    We have got a cell line in the lab– 22Rv1. This is a prostate cancer cell line absolutely loaded with XMRV proviruses (>10/cell). The question is, which came first? Did XMRV cause the prostate cancer, and we were just able to detect it in 2006? Or did XMRV come into the picture long after cancer, and is just a laboratory artifact?

    Quick summary– XMRV is a laboratory artifact. It didnt exist until 1993-1996, long after a bunch of folks were diagnosed with CFS, including The Reason for the Whittemore Peterson Institute, The Princess Who Cannot be Named

  7. >what a load of f***ing twaddle. it looks like wakefield and the mmr/autism all over again. people with me/cfs have been crapped on so many times over the years it's no surprise many still believe in the wpi and the xmrv link. any credibility we'd built up over the years is about to disappear. thanks a bunch.

  8. >At libel guy you can't sue if someone is telling the truth. Truth is and always will be what sets WPI apart from others . Do your homework. The truth will set you free.

  9. >Peterson left because he has Valcyte . Look up who sells Valcyte . This isn't hard . Roche , Peterson , and Knox sitting in a tree making lots of money off patients .

  10. >All these attacks on Peterson make us patients sound like we just attack anyone that isn't on our side. There may be conflicts of interests between Knox and Wisconsin Viral Research, but Peterson is innocent until proven guilty. Insinuations just make us look bad.

    He was perfectly willing to advise a Peterson patient to jump into an ARV trial if in fact a retrovirus was shown to be implicated. That doesn't sound like a guy that was hellbent on destroying the WPI.

  11. >Dr. Jamie, thank you for your thoughts. To those who have issues with what Jamie revealed – how exactly do you think this should play out? Keep quiet about the actual details behind all of this and hope it goes your way? What choice is there anymore? Wait for 'science' to sort it out? Dont' you realize politics are clearly playing a bigger role at this point? Human ego can be a scary thing…as can greed. That's just the reality of it all.

    And FYI to anonymous dispensing legal advice…you might want to brush up on YOUR legal expertise… you can't be sued for libel if what you say is true.

  12. >So then, I guess she can be sued for libel because she's saying that Peterson and Knox are out for revenge and trying to "destroy" the WPI?

  13. >Is this the FOX news blog, where is Glen Beck ? Jamie are you interviewing Palin tonight? What a waste of energy, oh thats right you have been cured with ARV'S. Killed off XMRV or HGRV or MLV. What was wrong with you again ? Well it has does wonders for your cognitive ability, no parinoia here, no one looking over your shoulder. Well except the NIH FDA CDC AMA and ERV.

  14. >Dr. Dan Peterson deserves more from us than this. He refused to desert his patients in the Tahoe-Truckee outbreak, and has worked tirelessly to come up with a battery of tests that show we have immune defects, viruses, and are significantly disabled.

    And he is not in this for the money. He really wants it solved.

    What made him suspect there were problems was that his patients who had tested positive in the study (like me) tested negative with VIP labs in early 2010. I think the study will prove to be more accurate, but since the same people are running both, it really worried Peterson – AS A DOCTOR.

    I, too, believe "Science" jumped too quickly to call for the retraction of the 2009 Lombardi et al story – what were they thinking? We don't even have the Lipkin report yet – for all practical purposes, that study has just begun. Why shut down this line of research now?

    I have my own essay on this subject here:

    But don't blame Dr. Peterson. He is one of the good guys, and he has devoted most of his adult life to cracking this disease.

    But do not blame Dr. Peterson. He is a good man.

  15. >@ Mary Schweitzer….maybe he's a "good man" to you, but I feel like I've just been kicked in the gut.

  16. >Anon – you feel like you've just been kicked in the gut because of the vile unsubstantiated rumours being spread by this blog. Seriously, I generally hold back from comment because I understand the sheer emotional frustration involved here. But this has gone too far. Dr D-J should be ashamed of herself.

  17. >Would you please explain why you feel like you've just been kicked in the gut?

    I don't understand.

    An interested patient.

  18. >@ anonymous above….. Wrong. I feel like I've been kicked in the gut because Dan Peterson COULD have insisted (as the supplier of patient blood in this study) that Levy use the EXACT SAME METHODS that the Lombardi group did. According to this report (http://www.eurekalert.org/pub_releases/2011-05/uoc–mve052711.php) the Levy study used SIMILAR procedures as Lomardi. SIMILAR is not the same as EXACT.
    And by the way, I admire Jaime for calling things as she sees them.

  19. >Do you really think he was in a position to demand anything of Levy? Levy doesn't know what he's doing? Are you serious? What did he demand of WPI's researchers? Think about it.

  20. >Yes I'm serious. Dan COULD have asked Levy to perform an EXACT REPLICATION study. According to the reference I mentioned above, the Levy study was not an EXACT REPLICATION of the Lombardi study. No offense to Levy's capabilities as a researcher, but it would have been nice if an EXACT REPLICATION study had been attempted. It WAS Peterson who initiated the arrangement with Levy and who supplied the blood, wasn't it?
    YOU think about it.

  21. >Not a single CFS researcher has ever honestly looked at what happened in Tahoe/Truckee back
    in 1985.

    None. Not one, including the WPI.

    I don't KNOW what happened elsewhere.
    I only saw what happened THERE.

    CFS researchers only looked for clues that confirmed what they wanted to find, and nothing more.

    They all practice a selectively based on their specialty, their preconceived theories, and what evidence they cherrypicked according to their pre-existing conceptual framework.

    Can I blame them?
    Well, Yes…, and No.

    "Yes", because they've all been a bunch of stubborn idiots, and "No", because if I hadn't seen it for myself, I probably wouldn't have believed it either.

    So I have the greatest confidence that whatever it is they find, will not fully address "Tahoe Mystery Illness", because they aren't looking under the right streetlight.

    I really do appreciate their efforts… sort of.
    Not that it does me much good…but thanks anyway.

  22. >56 participants in the study had tested positive for XMRV at the WPI. 19 of had blood drawn for the Levy study and the VIP Dx on the same day. Levy reported that he used the same methodologies reported in the Lombardi et al paper to look for antibodies and nucleic acids and as well as RT-PCR, culture (1-3 weeks) and chemoluminescence assays to look for antibodies. He also assayed XMRV’s ability to withstand attack from the immune system. Finally he assessed contamination in the reagents used in the Lo/Alter study and examined some of the original strains of XMRV.

    He was unable to find XMRV in any samples, found contamination in several of the reagents Lo/Alter used and in a twist showed that the complement part of the immune system was able to inactivate XMRV rendering it harmless suggesting that even if the virus was present in the human body that it would be able to do little.

    Did Peterson initiate the arrangement with Levy?
    All I know is that he simply supplied the blood.

    All I did was ask a question and it becomes some kind of battle? Sorry I even asked.
    This is exactly the kind of thing this blog has created. Disgusting. Adios.

  23. >Why do these researchers act like the reason they are doing these studies is to save us poor patients from the supposed horrible and deadly side effects of ARV drugs? Are they serious? Irregardless of if XMRV holds up or not, ARVS are some of the most widely prescribed, well understood, well tolerated drugs in use today. Millions of people with HIV take them every day and they are doing fine. People in health care take them as a preventative measure to head off HIV if they are exposed to blood products or needles. There are studies going on giving whole towns of HIV negative people ARVS to see how well they prevent HIV infection in populations that are at high risk for exposure.


I also don't understand how a group of researchers who so strongly believes CFS patients don't have a retrovirus is also simultaneously concerned that these people might do a trial of ARVs? The main risk of patients taking ARVS would be if XMRV *was* in fact infecting people, but we didn't yet know the pattern of viral mutation in response to those drugs. Patients would then run the risk of becoming resistant to the drugs before an optimal treatment regimen was worked out – much like what happened in the early days of HIV with mono-therapy. But since XMRV supposedly isn't in people with CFS, the main risk of taking ARVS would seem to be that it would be a waste of money, you'd get poked a couple times for blood tests to check side effects, and you might get nauseous and a headache.


Certainly most of the ARVs in use today are at least as benign if not mores than some of the other treatments trailed in CFS patients over the years such as Valcyte, Cidofovir, Foscarnet, Ampligen, IVIG, Acyclovir, various antibiotics, etc… 

Those treatments were trailed well before there was a consensus on etiology.

    That being said, what would be the big deal if someone did a controlled trial with ARVs to try to tease out if we are on the right path with retroviral research? We have a bunch of well know immune parameters to measure and we can objectively test for symptom improvement. If it were done correctly, it might be really informative.

  24. >Dr Jones, You guys did a good job of tabulating the differences in the methodology used in several recent XMRV negative papers in comparison to the 2009 lombardi paper in your WPI's Clinical Advisory Board response to Science. But I notice that the most recent Knox/Levy paper was not included in that comparison. Can you possibly update that document to reflect the differences in methods (if any) between Lombardi 2009 and Levy 2011?

  25. >http://www.wisconsinlab.com/virus_discovery.html Wisconsin Labs has been the home of Knox since the 80s. They are heavily invested in HHV-6, as a quick glance at the link will show.

    Abbot Labs, an advocate of the current push to bury XMRV research, is top of the list of funders at the UK's Science Media Centre, which has a stranglehold on UK ME/CFS and XMRV reporting and produces headlines like 'XMRV is not cause of chronic fatigue, studies show' and 'Exercise cures ME'. Simon Wessely is their spokesperson.

    If I told you that last summer, the CDC 0/0 paper was all over the headlines here in the UK, while Alter/Lo got no coverage at all, you will see what power the SMC have over our media. FWIW.

    Anonymous, Levy 2011 was published two days ago. This is why it is not in any comparisons yet.

  26. >To Anonymous 2:06am…aka Cort –
    Why do you even post here with your false sense of respect toward Jamie & the WPI? When last night on your forum you made it quite clear you have ZERO respect for either…calling Jamie's post "horribly unfortunate" and then posting the following – before modifying your post, lest people see what you for your true colors.

    "Want to see how the WPI is being viewed by the outside world? Check out the Wikipedia article on them…it isn't pretty…http://en.wikipedia.org/wiki/Whittemore_Peterson_Institute"

    Wikipedia? Really? You do realize that is not actually considered a respected news source? A journalist of your stature should know that.

  27. >That wikipedia page on the WPI one of the worst edited and blatantly biased pages I have ever seen on any topic. Its true that they found an association between XMRV and CFS, its true that their paper has been challenged and there are still serious questions to be answered, but pretty much everything else on that page is objectively pure BS.

    That page is beyond fixable – it should just be deleted.

  28. >Cort isn't a journalist he's a patient and paid by the CAA to discredit WPI whenever he gets the chance. Wikipedia has been hacked by idiots .

  29. >A "journalist of your stature" was meant with sarcasm. Guess I should have made that clear, sorry.

  30. >To: Anonymous June 2, 2011 1:54 AM
    Where are you getting your information that ARVs are so benign? The internet? You might get "nauseous and a headache"? I take them because without them I'd be dead but I'd prefer not to. We tend to put up and shut up because, after all, it's our own perverted fault we have this disease, and yes, taking these drugs is better than the alternative. But they are not so cute and cuddly as you suggest.
    I assume you will understand my "hiding behind anonymous"

  31. >Anonymous not cute and cuddly,

    Can you tell us more about ARVs from your personal experience? I assume you're HIV+?

    If you invent a handle for yourself, it will make it easier to distinguish you from other anonymous commenters.


  32. >Dr. Peterson has been my physician for over 15 years. He has saved my life, given me a better life and given me hope. He has also given me medical treatments that I couldn't afford, out of the goodness of his heart. I'm not the only one, there are hundreds of us, perhaps thousands. He doesn't talk about it, he just does it. I've been around him long enough to know that he has gone without so he can help his patients. I've seen it over and over.

    I've been most fortunate to have been the recipient of his kindness, good judgment and medical expertise.

    I remember many years ago when I had seen another doctor (close to my home) who "guessed" and prescribed a medication that made me terribly ill. I saw Dr. Peterson quickly thereafter and he said "do you want to "guess" or shall we order the blood test for a definitive answer".
    I went to the lab immediately. That other doctor's "guess" cost me a severe relapse of many months and nearly put me in the
    ER. The medication prescribed was stopped immediately and proper medication prescribed.

    I am honored, proud and grateful to be a patient of Dr. Peterson.

    It's difficult for me (a medical family) to comprehend how UNprofessional these attacks are.
    "First, do no harm"???? I became physically very ill just reading this blog. We are already sick enough.

    This type of behavior is a disgrace to medicine and those who ARE professionals.

    Linda Barossi

  33. >Do no harm…

    Shouldn't always mean do nothing. As many of us know, doing nothing means known infections continuously doing harm. It means people sliding more and more into poverty. It means loss of decent health care leaving one open to health problems other than CFS.

    There are many I've come across who have spouses or others who can support them while they go to the Ritz and can get a massage and chill out on the beach eating well and resting. However, many of us don't have that luxury.

    I have no particular commitment to XMRV but I do have a problem with those who are hell bent on dictating treatment programs to people they know nothing about.

    For many the choice is not lounging at the Ritz waiting for the "Science" to become clear and taking ARVs. It is poverty leading to all kinds of other health and personal problems. I suspect those seeing Peterson are the "Ritz" people so he doesn't quite get the stark choices and situations people are in.

    Anecdotally there is some improvement with ARVs. Perhaps they are not the answer but so far it seems at least one person has returned to semi-productivity after being treated with them. Others should have that opportunity – especially those that don't have the luxury of waiting around in comfort for the science to progress.

  34. >Anon – re: The Ritz

    hahahaha, I used to have money, years ago……no more. I'm indigent.
    Don't assume those seeing Peterson are in that category. After over 15 years of being in that office, knowing a very large number of patients, it just isn't the case. He's knows it and that's why he GIVES and GIVES. He also takes insurance and medicare and wouldn't have it any other way – says he wouldn't do that to his patients. Consequently, he gets paid very little. I don't know anyone having the luxury of waiting around in comfort. I'm in a tiny cave apt right now to be closer to him and Ampligen. I've moved away too many times, only to regret it as there has not been ONE other doctor who can help me. I've been through hell over it. I do well on Ampligen and after a year or so, I've been able to work part time (past two times). I worked two part time jobs just to survive and fell flat from overdoing and having the misfortune of living in a house with black mold. I've had to do whatever it takes to have a roof over my head. It's not easy.
    Dr. Peterson has paid for a lot of my treatments.

    Linda Barossi (driving a 20 year old car that barely runs, need new tires and sick of eating canned soup!)

  35. >Linda, as you know, I cursed Dr Cheney and Dr Peterson for 20 years for refusing to look into the black mold.
    But it was an attempt at "shock value" to catch their attention.
    Nothing worked with ANY doctors, anywhere, and I felt that I had to try SOMETHING.
    I apologized to Dr Peterson at the 2009 IACFS/ME conference, and told him that I wasn't trying to make trouble, but that nobody is listening to this clue. He replied that I hadn't created any trouble for him.
    (Maybe I should have tried harder)
    I then approached Dr Cheney, whom I hadn't seen since he left Incline Village in 1987.
    As Rich Vankonynenberg and Dr Ritchie Shoemaker stood by and watched, I stepped in front of him and said "hello".
    Stunned, Dr Cheney exclaimed, "I REMEMBER you… YOU'RE one of the TRUCKEE people"
    "Yes, I am" I replied.

    He had good reason to remember me. I had helped him start "a new syndrome" back in 1987.
    And, literally after walking out the door, had retreated directly to my camper, which I had outfitted as an "Escape Moldule" to avoid the black mold.

    As told in Dr Shoemakers book "Mold Warriors", I told Dr Cheney, "I have an inexorably increasing reactivity to mold that grows progressively worse no matter where I live, or how well I try to take care of myself"
    I told Dr Cheney and Dr Peterson that there was a "specifity" to this substance that made it worthy of special investigation.

    The "no matter where I live" was an attempt to convey that by 1987, I had already been forced to adopt extreme measures of avoidance that went beyond "just moving".
    If I hadn't, I would have had no life at all. I know this, for if I fail to conduct a concerted strategy of avoidance directed at this particular substance, I soon fall into relapse.

    To this day, no CFS researcher has paid any more attention to this clue than to say that it is best to move out of moldy houses, to treat this as if it were "just another irritant"
    But that is not what I said.

    Which was, "I have to avoid mold as if it were plutonium", no matter where it is, or what object it is on.

    As I say, I never meant to make trouble, but it appears that I still have not made ENOUGH.

    As a original Incline Village "Mystery Illness" survivor and participant in the 1988 Holmes et al CFS definition study group, I feel that I should scarcely have had to ask twice for research into pertinent evidence.
    After all, CFS researchers ARE looking for clues… any clues at all…
    Aren't they?

  36. >Saying nothing is as good as saying "No".

    It's good to "No" where it stands.

    So…. thanks for "nothing".

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