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.
>600 days. The irony isn't lost on me…
>You would do the patient community better service to not"guess" at things. Though you repeatedly do say in your blog that these are your personal opinions, many take them as truth.
Neither Dr. Peterson's, nor Singh's, Bateman's, Klimas's, Lapp's, Cheney's reputations should be anything but respected. Casting out guesses on things is disrespectful to all the work done for patients, a life long devoted work to CFS patients.
>Thank you, Dr. Deckoff-Jones. This is a sordid story of deceit and betrayal, but it really needs to be told. The truth will out.
Patricia Carter
XMRV+, 24 years M.E.
>Why hide a posting behind anon?
I like reading Jamie's blog, it clearly states it is an opinion, and we aren't idiots we know what opinion means, thankyou.
>Thank you Jamie for finally telling the truth. I have been wondering a long time. As a patient of Dr. Peterson's this is the deepest betrayal and I know I am not the only patient who feels this way. I knew the Whittemore's were being kind but this goes way beyond. They should not be keeping this out of the news. Patients need to know this isn't about patients this is about money. I say Dr, Peterson has a lot of explaining when I get up there this week if I still choose to go and I cannot wait for the Institute to open.
>Thank you Jamie for saying what no one else has. I am so glad you had the inside scoop and scooped the poop right on the doorstep of the group who is highly invested in the HHV-6 theory. Let's just say it loud and clear who funds shoddy crappy research??? apparently it's people we thought we could trust. Et tu Brute!
>I have one thing to say To the Mattresses.
>Anon, Dr. D-J is not "guessing", she is trying to convey the dirty politics involved without giving away too many internals.
Thank you for speaking up, Dr. Jamie. Patients have a right to know who they are being screwed by, and why.
>nice blog… have a view of my blog when free.. http://www.lonelyreload.com .. do leave me some comment / guide if can.. if interested can follow my blog…
>Mind control
Studies performed by those who believe that some religious groups do practice mind control have identified a number of key steps in coercive persuasion
1. People are put in physical or emotionally distressing situations;
2. Their problems are reduced to one simple explanation, which is repeatedly emphasized;
3. They receive unconditional love, acceptance, and attention from a charismatic leader or group;
4. They get a new identity based on the group;
5. They are subject to entrapment (isolation from friends, relatives and the mainstream culture) and their access to information is severely controlled
http://en.wikipedia.org/wiki/Cult
>Lets make this a liberating day for patients, we now know without a doubt where our efforts should be focused.
It is now up to the patients…and for those (like me) who are convinced that a retro virus is the most logical suspect at the heart of our problems, we need to find and organize a group of individuals willing to test various anti-retroviral protocols for a few years and see the results. There must be at least 1000 patients with the wherewithal to travel to Mexico City or Costa Rica and choose a protocol to try. Travel is necessary to obtain prescriptions, as the doc's in the USA no longer have the freedom to treat as they see fit…they are now no more than share croppers on the pharmaceutical industries plantation.
Coordinate it all through a secure website to protect personal data but publicly post all test results and health progress (Karnofsky scale type form). Canadian criteria only, and then split the group up ala Lerner or similar method (trigger event, dominant 'accompanying illness'…EBV, Lyme, Mold, ….). I know that limiting the group to those 'healthy and wealthy' enough for international travel does not reflect the typical long term sufferer, but it may prove beneficial because it should take a shorter length of time for any positive results to begin to show.
The military-industrial-medical complex considers all of us just collateral damage, and does not want anything to threaten the immense profits of the vaccine 'trade'.
600 days is nothing, it has been almost 30 years since my former doc, Jay Goldstien participated in the autopsy of an adolescent male cfs patient who died of seizures and saw evidence of a foamy (spuma – family Retroviridae) virus in the brain folds of the poor kid. A short time later he came up with the best, concise definition of cfs yet:
"There is an increasing consensus that CFS is a virally induced, cytokine-mediated psychoneuroimmunologic disorder that occurs in genetically predisposed individuals."
And his successful treatments targeted the NMDA receptors in the brain…it was with great interest I read how the XMRV targets the same NMDA receptors.
This was just a glance at a paper by one of Dusty Miller's post docs, which is now under embargo.
It sure appears to me that with cooperation, we patients can find a treatment that works to any and all types of retrovirus that infect us, and way, way before the scientist's will. They have been, or should have been looking for the past 3 or 4 decades now.
Jerry D (who with my wife Carol are both cfs patients)
>lets try and replicate thefindings of a chemical reaction by changing all the parameters that govern the performance of that chemical reaction
it sounds crazy does it not
but PCR is a chemical reaction and that is precisely what those people conducting the 00 studies with 00 talent are doing
Levi did not even use the same primer sets as Lombardi for gods sake!
The letters of concern should be about the level of knowledge of the Science editors and or their impartiality
I mentioned this to my sons Chemistry teacher and she would not believe me. When she saw I was serious she burst out laughing and said "well what do you expect from biologists. Why not get some real scientists involved"
>"I have never met Dr. Peterson, but here is my best guess"
TO THOSE WHO SAY TO MY COMMENT THAT DR. D J IS NOT "GUESSING", I REFER YOU TO THIS QUOTE FROM HER IN THIS BLOG.
>What the hell happened to Dan Peterson? I know for a fact that Peterson once recommended ARVs to one of his patients. WTF…….
>Bravo Jamie for being the only person so far who tells it like it is …
>I've noticed that Abbott is cited on both teh Knox negative AND the Silverman positive macaque studies.
Stinks of a stalling tactic.
>hey, jerry d, i am also a former patient of dr. jay goldstein. within 5 days, he found a vassodialator, isoxsuprine, that also worked on nmda receptors and guess what? the me-cfs symptoms went into remission for an entire year until i developed a tolerance to the drug. the studies you mention have not been lost on me either.
people have been making their living by making a mess of the research on me-cfs for a long time now. why let a good thing go? meanwhile, we suffer so much, it's unbearable.
and thanks, gerwyn, that was an excellent comment as well. so sick of the shenanigans. so sick.
>i suggest Bob silverman and frank ruscetti try and get the name of all these viruses changed as soon as possible, its confusing to us and to scientists.
calling them XMRV and a family of retroviruses is no longer ok! its time to get a proper long lasting name.
please get someone officially get the name changed to HGRV.
>Hi Jamie
Could you please give some more information about the Maldarelli study? We've heard about it, when the recruiting happened, but since then there was quiet. Is there a timeline when the results will be available? So is this a third effort, in addition to the Blood Working Group and the Lipkin study?
Thanks
>I tend to think there is a political motive when potent information is put into the public domain right at the start of a public holiday.
A similar thing happened when 4 negative papers were published on 20 December 2010 – allowing plenty of room for their absorption into the public mind, but no room for a considered debate or response.
>Eric – I'm part of the Maldarelli study. They are just about finished with collection of approximately 38 patients. Samples will be sent to Michael Busch, Bill Switzer, Mary Kearney (Maldarelli's partner), Rachel Bagni (former student of Judy Mikovits), Judy Mikovits, and Frank Ruscetti. The purpose is to try to find consensus on even a few samples. As I have mentioned to Maldarelli by email and in person, this seems an unlikely event given that only 2 of these labs are consistently finding HGRVs. Each lab is allowed to use their own techniques based on "what they are good at", such as, Frank Ruscetti is known for being incredibly good at culturing. I have no clue what Switzer is good at. Seems he can't even find the nose on his face. Results were hopefully to be determined by end of June, but I would think it is likely to be mid-July instead. I was told my personal results as well as aggregate results of the group would be told to me as soon as they have them in hand. I hope that helps.
>Yes, Heidi, thanks a lot.
Eric
>I like there will be 3 labs affiliated with the WPI involved.
Just this second i had an idea, but probably it's too late and also i'm no scientist and not in the best shape at the moment.
Why not make different codes for each lab? In this case, if those 3 labs more or less agree that would make quite a strong case, wouldn't it? If there are also controls involved.
What do you think?
>Well, the samples themselves will be triple coded.
>Jamie, wonderful round-up story as always.
I wish you'd send this to Dave Tuller at the NYT and Amy Dockser Marcus at the WSJ. They should know about the money trail and all the other motives involved here.
And like you said peoples' lives are at stake. And i don't get it either. There's a lot of money to be made if the HGRV's work out. Maybe we should start working the potential stakeholders for pro-active support.
>i am also an ex-patient of dr goldstein and know well how credible and forward thinking his practice was – i also saw peterson, and know well how phony he is. it does not surprise me he's hitched to another coat-tail – he's just trying to leave a mark and is desperate at this point. he is and was a lousy doctor, and it should surprise no one that he is shifting – feet of sand.
>One thing we can do to help WPI is to support them in the Vivint contest, in which charities are in line to win $250,000 through daily voting via Facebook.
People with ME are generally broke but this is free money – we just have to show our support with a click of the button.
Info about it is here:http://forums.phoenixrising.me/content.php?434-Win-money-for-ME-CFS-Research-Round-II-1.25-million-Vivint-Facebook-Contest
>All of this back and forth about motives, scientists and doctors running around accusing each other, and unearthing old rifts under the guise of "protecting patients" is actually not helpful at all.
What is helpful is the scientific method. This dictates that an independent lab (not WPI or involved parties) replicate the methods of the original 2009 study exactly, down to the smallest detail, with the same patients and controls. Reduce the variables and go back to basics. This should have been done first thing following the 2009 paper, and at this point it is the only way forward.
Studies that don't replicate methods exactly, or consensus studies that allow each lab to pic their own method (BWG, Mandarelli, etc..) are interesting and may lead to some understanding at some point, but won't solve the current controversy at hand.
>I have been following this issue for some time with interest and occasionally read this blog. I can tell you as an outside observer with no stake in this game that the worst thing anyone could do at this point is shut down research on this issue. I was shocked when I saw the journal "Science" recommend this course of action. It is truly un-necessary at this point and will only serve to short circuit the scientific process. There are serious questions that need to be definitively answered by actual research on both sides of the controversy. The only way to answer these questions is for all sides to stop making definitive statements that aren't supported by the current body of work and actually *do the research* to figure out what is going on here.
>What exactly does this mean, Heidi? That each lab will get the same samples three times, but with different codes each time?
>Its not enough to test some off the shelf PCR reagents or cell lines and then suggest mouse DNA somehow is responsible for the pattern of results that the 2009 paper showed. If someone has a credible theory that contamination *could* explain the result in the 2009 paper, then get the said contaminated products and redo the original experiment using the original exact methods to show how it happened. Thats the only way to figure this out.
>At this point, money talks. I'm sending regular monthly contributions to WPI. Please give whatever you can afford to WPI.
>How can we best help the WPI at the moment?
>I've shared this on Facebook and Twitter along with a link to Science's Facebook page so we can all express our outrage. Thank you, Dr. Deckoff-Jones. While I'm suspicious of the funders of the studies that made it so swiftly into publication and while I hope Dr. Peterson can somehow redeem his recent actions after so many years of apparent dedication, the real villain of the piece is Science Magazine, which set aside scientific rationality to make an editorial decision that stifles research and harms millions of patients. Shame!
http://www.facebook.com/ScienceMagazine
>I think there is a real danger that going up to Science magazine and giving them a prod and calling them a villain is really really not going to help the WPI's cause, no matter how angry or upset we are. We cannot expect to be treated with respect unless that is what we show. We can express ourselves to the editors of Science fully and clearly without alienating them or turning them against us. Just explaining what the continuance of this research means to us, why it is so very important, and asking the questions we need to ask, should be enough. Don't fool yourselves that there are people who can be verbally abused and still support us – they won't. Please consider that there is another human being at the end of your correspondance.
>I am a bystander with no particular bias, since I don't personally think a retrovirus is my issue. I also think Ian Lipkin will resolve this in 2012.
On the other hand, I am not convinced the motive is revenge or intellectual property. It could just be that Peterson had doubts that a retrovirus was the cause, and asked Levy to study the same samples, in order to find out.
I also personally doubt that there is a master plan to disavow XMRV in order to "rediscover" the retrovirus by a different name and garner fame, make money from tests etc. I suppose that's possible but seems a bit baroque to me.
I recently read Françoise Barré-Sinoussi's 2008 Nobel lecture (she worked on HIV)
http://nobelprize.org/nobel_prizes/medicine/laureates/2008/barre-sinoussi_lecture.pdf
It's worth reading to see how they worked with the research community after isolating the virus, proving there was no cross reactivity thus a new virus, showing it could be propagated in peripheral blood mononuclear cells and in cord blood lymphocytes, etc, and even then, much more work needed to be done…
I personally don't think there are vendettas as the major driver of this scientific process and at the moment, controversy.
>Thank you Dr DJ for your reasoned response. What's the take away – money and profits are more important than human lives and other such wonderful axioms.
>It might also be that Dr Peterson has a different concept of "CFS".
He might still conceive of this as the precise entity for which he called the CDC, leading to the events in the Holmes committee that ultimately conferred Stephen Straus's terminology on "The Raggedy Anne Disease".
You see, there was a "larger phenomenon" going on before CFS was coined: sporadic eruption of a chronic mononucleosis-like condition.
Then Dr Peterson/Cheneys group emerged as a cohort of several hundreds.
The major difference between the earlier phenomenon and the one called "CFS" was that the etiologic elements suspected to be causative for CEBV Syndrome lacked the potential to occur in huge clusters.
Dr Peterson might be restricting his conceptual framework to ONLY those processes which appear to be capable of causing illness-clusters… for that is what separated "CFS" from other paradigms.
>I am one of the many 'teenagers collapsing with an incurable illness' and I find it unbearable that we are suffering so much, yet people seem intent on hindering efforts to understand the cause of ME/CFS. What is it that these people have against the millions of us suffering? We just want the same as those with any other illness want. Why must efforts to help us get what we want and NEED in order to get on with our lives be thwarted?! I have 'only' been ill for 2 years, but have found this time enlightening- I never realised these things happened in the science community, which I consider myself a part of. I am truly horrified by what I have seen since becoming a CFS/ME sufferer.
>"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."
Wow Jamie. I'm really disappointed.
Your statement above not only reeks of paranoia, it's an incredible insult to a doctor who's been trying to help, and IS helping, ME/CFS patients for over thirty years. One who was there during the Defrietas incident, one who doesn't grossly overcharge patients like Dr. Cheney, one who actually has patients who have recovered somewhat.
But then again, you're playing to your favorite audience; the sad, bitter, angry, and paranoid folks that populate the mecfsforums run by the mercurial Patricia Carter (who just last week insulted Andrea Whittemore's mother).
These are people who keep saying 'there's no treatment', when indeed there are dozens out there.
Like the b12 shots and magnesium that has helped Gerwyn (Gethin) Morris recover by 80%, by his own admission.
If, as Annette and Andrea tried to point out last week, people would stop fighting, and work together, then maybe some healing would actually take place. On more than one level.
And healing is impossible when anger is in the way.
Impossible.
>Just so you know "where I'm coming from",
I am one of Dr Cheney/Petersons first patients from August 1984.
I saw the signs of this earlier fatigue phenomenon before the horrible "Yuppie Flu" went through north Lake Tahoe and shifted everything from a vague set of patient-complaints that never went beyond the doctors office, to a life-destroying neurological illness for which Dr Peterson called the CDC for help.
It was the "Yuppie Flu/Tahoe Mystery Illness/Raggedy Anne Disease" which specifically received the term "The Chronic Fatigue Syndrome" in 1988.
I am XMRV positive and have no vested interest in anything except allowing science to prevail.
>I am just another CFS sufferer – for 18 years now. My life has been destroyed and it kills me that money and politics are somehow playing into the studying of our disease. Whoever is reading this…doctors, scientists, journal editors…I am begging you, please put your egos and desires for money aside and think about the patients and their families who are going thru untold amounts of suffering. I don't care if it's XMRV or ABCD virus causing this, or something else altogether. I just want the truth. To ask that Mikovits' paper be retracted is beyond premature. I am so disappointed by all this, it's just hard to fathom.
>I'm in agreement with the idea that there should be a true replication of WPI's methods by another group before anybody calls for a retraction.
I'm looking forward to seeing the WPI show that they are able to distinguish ME/CFS vs. healthy control blood samples using their techniques, in a study overseen by an independent lab.
I am disappointed that the WPI (through this blog) would accuse Dan Peterson of any wrongdoing or of acting against patients' interests. He's done a lot for patients over the years — at least as much as anyone at the WPI — and does not deserve that.
Attacking him does nothing to make it more likely that we will move more toward a scientific understanding what's going on with the illness. It only creates internal divisiveness and anger, of the sort that this community has too much of already.
>Thank you, Dr. Deckoff-Jones, for your straight talk and valuable insights, once again. It's shocking that, at least in this case, Science is anti-science! and yes, it annoys the hell out of me too when I turn on the tv and see a show on how every resource is devoted to finding out what disease Henry VIII or a neandrethal had when there are millions of living pwME and we can't get any help! Keep speaking the truth! Silence = Death!
>Dr. Deckoff-Jones you probably want to familiarize yourself with libel laws. Owners of blogs are just as responsible for their statements as other forms of media.
While your feelings are legitimate, your choice to make irresponsible, paranoid, inflammatory and libelous statements can have legal consequences and repercussions for both yourself and your employer.
You may wish to get adequate legal counsel and rethink your position.
>Isn't it ironic that the Journal Science was held up as the epitome of medical journals by the WPI fanatics…until about a week ago.
Now it's part of a conspiracy, as is any person or organization that dares question the original Lombardi paper.
>Justin said: "Keep speaking the truth."
What is "the truth"?
>The scientific process is not something to get mad and disrespectful about! What is happening is exactly what is supposed to be happening, at last, and that should be EXTREMELY ENCOURAGING to us. Ideas are identified, exchanged, and discussed, and the evidence is weighed. Even if our hope is not affirmed, a lot is being learned, and a lot of serious interest is being given to the disease. Be thankful, for Pete's sake!
I don't know what gets into a subset of patients who feel it is not only their right but their responsibility to spew hatred and disrespect on a world-wide platform. Jamie, your anger is not only hurting yourself but taking others with you. Perhaps there is a new symptom that we hadn't" identified before, "cognitive paranoia"?
I just wrote Dr. Peterson and thanked him for his honesty and hard work. Also wrote to Dr. Levy and Dr. Coffin and thanked them for lending their very high stature to our disease. They deserve our highest respect and thanks. Park your vitriol elsewhere and encourage all this new research. You will be glad you did.
>We are getting angry, critical and anonymous comments such as what have had in the past from "John Anonymous." If the "John Anonymous" on this post want any credibility for their remarks they should identify themselves. My guess is that they won't.
I have a comment about Dr. Peterson. I never met him. I wanted to verify some of his data and when I tried to email him and call him he never answered me. This is strange as usually physicians do answer especially when dealing with other physicians. I acknowledge that he sent the original samples to the WPI. However, he and Dr. Knox have a grave conflict of interest taking money from a foundation that is trying to prove that herpes 6 causes CFS. Their collaboration in the recent Science report totally discredits them and the report itself. I don't see that any healing from our part is necessary or possible for Dr.Peterson's actions unless he and Dr.Knox retract their report in Science. We will move on because of our inner strength, our desire to survive and our belief in the scientists of the WPI.
Michael Snyderman MD
>People are basically telling you to shut up and know your place, which to this point has been that of an abused patient community. The naysayers have not walked in our shoes.
So get louder.