Where large sums of money are concerned, it is advisable to trust nobody. ~ Agatha Christie

Thank you to Kristin Loomis, for contributing her comment and for the additional information she provided privately. I have a better understanding of the HHV-6 Foundation’s policies and interests. I understand that retroviruses really aren’t on the foundation’s radar these days. I apologize for any inaccuracies, this time, and anytime; I do my best to fact check before publishing, and to limit any criticism that is directed at an individual to what can be verified on the internet, not gossip. I write each blog with the information at hand at that moment, intending to stimulate discussion. It is personal opinion, reaction to the events, public and private, not investigative journalism, though I wish a good investigative journalist would take it on. I’m getting mail suggesting that I interview people before posting blogs, but I have a day job again:). In any case, the information circulating that HHV-6 Foundation funded Knox et al is apparently incorrect. I invite anyone who feels they have been criticized unfairly to join us. Everyone needs to know the truth.

In your comment, Kristin, you said that you believe that Abbott funded Knox et al. I guess it’s logical to conclude that if Abbott appears on a paper, there is money involved, either because they funded the study and/or there is a patent and potential lucrative test involved. This raises a number of questions. I hope that anyone with information to answer these questions will contribute to the discussion as you did. I have never thought that there is a conspiracy in the sense that Peterson, Knox, Coffin, Stoye, Vernon, McCleary, the editors at Science, et al are having conference calls plotting our destruction. Each individual has their own reasons for doing and saying the things they have.

In my opinion, whoever funded their study, Knox et al have some pretty unsavory stuff to explain to the patient community. If I put the best spin on it possible, then the patients have been harmed by misguided acts. The publication of their shoddy work was unethical and immoral, in my opinion. The collection of the specimens in the first place for this purpose is inexplicable to me. Even if Peterson woke up one morning and said OMG, XMRV is all a big mistake, it is inconceivable to me that he no longer believes it is a retrovirus. So his desire to bury XMRV has to be about being right, ego and revenge, or money. Roche funding Valcyte? Hemispherx funding Ampligen? As I’ve said, he is welcome to respond. I will be happy to post anything he’d care to share. I would like to point out here that although I’ve had a lot of questions about Dr. Peterson for a long time, and have heard many stories, from protagonists and patients (always my most important source), I didn’t mention his name on this blog until the publication of Knox et al, which I took as a declaration of war on the patient community.

Abbott turns up all over the place, e.g. link; see Industry Relationships at the bottom of the page. They are clearly interested in XMRV. Their employees appeared as co-authors on negative and positive papers in Belgium, the positive paper being about a test for XMRV in prostate cancer tissue, not blood. When someone does a study, they know what they want to find; then they blind it to make it convincing, keep it honest. It makes no sense to do a study knowing at the outset that your test detects nothing, unless that is what you were trying to show in the first place.

From where I sit, there are many unanswered questions. It would be lovely to have no need of considering anything but the unfolding science, answering all of our questions in logical sequence, so everyone could take the high road; but that isn’t what happened. Thus my questions of the moment. Why and when did Abbott approach Konstance Knox to do a study on XMRV, when she had never published on anything but HHV-6 and owns a commercial lab dedicated to it’s detection? Why is Abbott’s funding of Knox et al not disclosed? Why would Abbott want to publish a negative detection study? Who is Graham Simmons and what is his stake, as he appears on negative, equivocal and positive papers? He works for a business entity involved in transfusion science and has a teaching appointment at UCSF, as does Jay Levy. Where do Roche, manufacturer of Valcyte, and Hemispherx, manufacturer of Ampligen, fit in to all this, since it seems likely they are a piece of the puzzle as well? What else do these people/companies have waiting in the wings? Intellectual property laws support a unique patent. Who put pressure on Science to rush Knox and their EEC to press when they did? When did Dr. Peterson collect the specimens for Knox, and what was his relationship to the WPI at the time? Did he inform everyone of what he was doing? You can’t get into anyone’s head. In the end, only the Shadow knows. But facts, actions, dates can be verified.

Nobody wants to have anything to do with CFS, except the WPI (and the CAA, with their peculiar spin). It’s common to hear that this or that researcher is sorry they got involved in CFS, because the advocacy community is becoming so strident. I’m not sure what the answer is. Polite hasn’t gotten us anywhere, as witnessed by the useless money that’s been spent on the CAA over the years in their pitiful attempt to validate the illness scientifically. If that had worked we wouldn’t be confronted with the psychiatric community wanting to label us with “CSSD”. The CAA too is free to respond in any way they like; the comments on this blog aren’t moderated.

ME/CFS is of retroviral origin, as is ASD, in my opinion. Read the HIV and animal retrovirology literature, much of which is referenced in previous blogs. It’s all there, plus the methylation defect and mitochondrial issues, covered to a large degree in the HIV literature, that were making up the bulk of my reading until the recent salvo was fired. The parallels are obvious. Nothing we’ve ever had to work with as physicians comes even close as a workable model to provide us with an approach to treatment, with a chance of healing the patients, forgetting about whether XMRV is the major player or not. For an individual to take any action at this time which has the effect of shutting down research into the retroviral origin of the disease is a crime against humanity.

Nobody is saying that the associated, opportunistic infections seen in ME/CFS aren’t important, anymore than Pneumocystis is unimportant in AIDS. It is exactly analogous. In this case, there may be interaction between viruses. Activation of latent viruses may benefit the underlying retroviral process, turn it on if you will. Another possibility is that any persistent infection causes downstream inflammatory changes that favor activation of provirus. The research into how retroviral etiology explains CFS pathophysiology needs to proceed, even before everything is sequenced and proven, even while XMRV’s defendants are being raked over the coals. Everyone involved knows it’s much bigger than whether individuals get discredited or laughed at. Scientists and doctors are much the same when it comes to fear of ridicule restricting their abilities to fulfill their prime directives.

In the end, science will tell us who is right, irrespective of personalities, unless the work isn’t done at all. Although I look forward to the results of Dr. Lipkin’s study, and from what I have read and heard, he is worthy of the respect he has been proferred by being put in charge of such crucial work, it seems wrong to me that it all rests on one man’s conclusions, or the ability of a couple of scientists to flawlessly reproduce their work, though they will certainly try. Maldarelli, Lipkin, XMRV Blood Working Group. That’s not much for a million sick people. When John Coffin declared XMRV dead, he said it could be another retrovirus. Is he looking for it? Why is the federal government going to let this go another year, waiting for a ruling on one virus, before considering the bigger questions? It needs to be studied as an enormous health crisis, whatever the outcome of the work on XMRV. If it were anything other than a kangaroo court in session on a federal level, the work would be a priority, with our Center for Disease Control finally trying to do some controlling of our disease.

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125 thoughts on “Whodunit?

  1. >How are patients being recruited for the Lipkin study? Are we relying to clinicians to pick? How do we know they won't be biased by previous XMRV results and pick based on that instead of picking the sickest patients based on the CCC? Are the same patients that were in the Lombardi study also going to be offered to participate in the Lipkin study? Also, I don't see how the Lipkin study is going to solve this issue. Its relying on the various labs to replicate their own results by testing using their own preferred techniques. What we actually need is an independent lab to test using the exact techniques from the Lombardi paper.

  2. >Why are HGRVs being buried ? Answers (plural, lots them) here. The movie is free to view until the end of Mon 13 June.


    It's the story of Dr. Stanislaw Burzynski, his work on gene-targeted cancer medicines called Antineoplastons, and how the FDA, NCI, big pharma and an ex-employee (shades of Knox ?) tried to bring him down, even to imprison him at one point, despite the fact that his treatments actually work. When Antineoplastons are approved, it will mark the first time in history a single scientist, not a pharmaceutical company, will hold the exclusive patent and distribution rights on a paradigm-shifting medical breakthrough – althought the Government has spent $60m to date to stop this happening.

    Quotes from the movie.

    ‎"The prosecution marks the first time the FDA has tried to jail a scientist for using a drug on which he is conducting FDA-authorized clinical trials."

    "The jury visit request, said Mr Clark, is "a thinly veiled effort to expose the jury to the specter of Dr Burzynski in his act of saving lives." "

  3. >Kumbaya and can't we all just get along? I've fallen for it way early on. Wanted to play nice even when we were cheering for different teams. I never sacrificed my beliefs to do so, but I am not one to enjoy the upheaval that emerges when names are named. I'm not a "tough as nails" type person, but even I see that there is a breaking point in a community where things need to be hashed out, even if in public.

    Jamie, thank you for trying to keep the debate in the open. I know your intent is to stop the speculation and find out the truth. One of the more interesting parts of reading your blogs is that you shift as needed when new information is presented that makes sense to you. This shows a true analytical approach. I appreciate analysis, especially when I can see the progression of thought on a public blog. You're naked as a jaybird here.

    The combination of Science's EEC, Knox paper and Paprotka in one swoop was yet another declaration of war to me. I will not go quietly into that good night. I will fight in whatever way I am able and support those whose fight is for my benefit as well. You have my full support Jamie.

  4. >Dear Erv and all other know-it-alls:

    The most difficult subjects can be explained to the most slow-witted man if he has not formed any idea of them already; but the simplest thing cannot be made clear to the most intelligent woman if she is firmly persuaded that she knows already, without a shadow of doubt, what is laid before her. Apologies to your hero, Tolstoy.

    Let's ask some more questions, shall we?

    1. What is Levy's relationship to Peterson? Did Peterson recruit him for the Knox study? If yes, when? When did Peterson decide to start splitting blood samples and send them to Knox for an XMRV study? Did he do that while he was still with the WPI or subject to a covenant of good-faith and fair-dealing with the WPI? Are the research results used in the Knox study the intellectual property of the WPI? Was the WPI asked if anyone could use those results? Where is the missing data or chart in the Knox study that supports the bald-faced non-scientific assertion that "thirty-seven of these 41 patients had been tested previously for XMRV infection" and that twenty-six were XMRV positive in patient cohort number 1? Did Peterson ever disclose his participation in this shady plan to the WPI?
    2. If Peterson is only interested in the truth, why won't Peterson issue a simple statement that Levy was wrong when he said that the Knox study was a replication study?
    3. Why won't he come to the WPI's defense by telling the truth that he doesn't know the identities of the patients used in the Lombardi study?
    4. How can Peterson in good conscience participate in a study when the design of the study was to include a comparison of results from a clinical lab that specifically requires that the lab results NOT be used in research studies but can only be used for help in determining a clinical diagnoses?
    5. Who reviewed the Knox study for Science? Why was it fast-tracked? What is Coffin's relationship to the editors of Science?

    More to follow….

  5. >Kent, I only saw your comment just now. I'm sorry your daughter is suffering. Give Amy a warm hello from me. It is interesting that yellow fever was worked on in the 1930's and I think the first documented outbreak that was like a paralytic polio syndrome was in the 1930's. But these are such loose correlations I can't make too much of them. Certainly, I liked Jamie's hypothesis on vaccine contamination and recombination–it doesn't *have* to be a retrovirus by the way…and think she should work on publishing that. And if you and Amy have a hypothesis, work on it and try to publish it in Medical Hypotheses…all these hypotheses are worthwhile.

    Which is far different from the kind of mud slinging that's been going on, even lately on this blog.

    By the way, I receive the Above the Fold newsletter daily. I suggest anyone interested in the role of toxins in illness sign up. Just this morning as I scanned the headlines, I saw new research on autism in Salt Lake City. "The risk of having an autism spectrum disorder was 3.5 times greater for children born within a mile of a site releasing between 5,000 and 10,000 pounds of halogenated chemicals (dioxins, polychlorinated biphenyls and trichloroethylene). There were five such TRI sites emitting at those levels in the mid-1990s.

    • The risk of having an autism spectrum disorder was twice as big when living within a mile of one of six TRI sites emitting up to 5,000 pounds of the heavy metals arsenic, cadmium, lead, nickel and mercury. "

    That's just one study I happened to see today.

    It would be "nice" if we could ignore what's going on in our habitat, and not have to pry ourselves loose from a way of life that has poisoned so many of us…and if the answers were not staggeringly complex…unfortunately, that's not the case.

    Kent, have Amy look at the work of Wendy Garrett at Harvard…very good work…

    Best to all.

  6. >A few more questions…

    1. Does Abbott have an intellectual property interest in XMRV research? Did they receive those interests from Cleveland Clinic? What did Cleveland Clinic and Abbott do from 2006 until 2009 to determine if they could find XMRV in the blood? What data was shared with the public during that time? Does Abbott or Cleveland Clinic agree that XMRV research is "dead" in prostate cancer? How did XMRV get in prosate cancer tissues except through the blood? Do they agree that Silverman's paper should be withdrawn? Could Silverman's work in Lombardi be the result of lab contamination and not the WPI's? Does Abbott own anything other than a detection method involving prostate cancer using a PCR method that doesn't work? More later.

  7. >1. Why is a clear XMRV positive in Knox a negative? Why didn't Science require a complete sequence on that sample before publication? Was it because the "rush to issue an EEC" would have to be held up and deny Coffin his glory?

    2. Why did Singh use different methods from her prostate paper as compared to her CFS paper? Why did she not culture her samples for the full eight weeks when she was informed that it required that much time to successfully grow enough XMRV to be detected?

    3. Have the Ruscettis been threatened, why and by whom? Who started the "contamination" theory and why? When was it started and by whom? Why was the first contamination theory on XMRV that it was "mouse contamination"? Why was that theory dropped? Was it because that all Lombardi samples were tested for mouse contamination and came up negative?

    4. Why are the negative studies using the least sensitive XMRV test according to Mikovits? In order of decreasing sensitivity: a)nested PCR for gag from LNCaP cells that have been co-cultured with plasma or properly activated PBMC's, b)presence of antibodies to XMRV env in plasma, c) presence of gag products by nested PCR on appropriately stimulated PBMC's or detection of viral proteins expressed by activated PBMC's with antisera, d) nested RT-PCR of plasma nucleic acid or PCR from cDNA from unactivated PBMC's, or e0 PCR of DNA from unactivated PBMC.

  8. >@ anonymous. I think all your questions should be taken into consideration by the editor's of Science. They should also publictly respond to this one: What is Coffin's relationship to the editors of Science?

  9. >Is there a gremlin? I posted another series of questions and it did not post.

  10. >Blogger has a spam filter that cannot be disabled, and it doesn't alert me when it catches something. I check it a couple of times a day. Also, occasionally, blogger tells me a comment was published and it wasn't. I don't delete comments. Feel free to resubmit. If two show up, I'll delete one.


  11. >I was just watching news night and they said there about to vaccinate the worlds poorest children, which is great! Bill Gates is a good man for paying for this but does that mean we're be giving them xmrvs and mlvs to Africa now?

    I guess in a years time we would have saved millions of african children from this new vaccination program – and when xmrv 'comes out' the worlds governments can say "but we saved a million lives this year in africa with the new vaccines….but sorry you may have to all put up with the side effects of MS, MECFS, Cancer and autism! is that the future then?


  12. >Just a few more.

    1. Why is Knox considered an expert on retroviruses? What was her PhD in? What work has she done on retroviruses? Did HHV-6 magically turn into a retrovirus when everyone wasn't looking? Who told her what methods to use in her study? Who told her and why? If she wasn't told what methods to use, why did she choose different methods than Lombardi? Why didn't Peterson demand a true replication study if he gave them access to his patient cohort and he was so concerned for the patients? Why did it take so long for Knox to use the Peterson samples? When was the study started? Completed? How long was the review for Science? Why are the criticisms of Vernon as to the first negative studies not equally true as to the Knox study? Why did Vernon change her mind? Is Singh a pathologist or retrovirologist? What did Levy miss in the 1980's and 90's that would embarass him now? How can the CDC use Satterfield as an expert in XMRV when he said he had a test in 2009 and 2010 that could dicover XMRV through a blood spot test and didn't find one positive? How many tests did he sell? If he did find a positive why hasn't he disclosed that he did? What reference lab did he use in Kansas to run his tests? What did he tell that reference lab in Kansas about his unique methods?

    2. Hey ERV, here is a simple one for you. Why don't they use PCR to determine whether you are infected for HTLV-1? What do you know about serolgy tests for XMRV? What do you study: endogenous or exogenous viruses? Did the scientists who discovered HTLV-1 and HIV have PCR's to help them? What did real scientists do before PCR? What are the limitations of PCR?

    3. Dr. Coffin, is it possible that WILD mice have XMRV? Have you asked for funds to test that hypothesis? What about other mammals? Cows? Goats? Is there sequence diversity in HTLV-1? Does one pair difference make a difference in HTLV-1? Does this sequence diversity result in different types of disease?

    4. Why isn't it more likely that XMRV is similar to HTLV-1 than it is to HIV?

    5. How do you confirm a PCR positive for HIV?

  13. >Judy,
    It is pretty clear that you are writing these anonymous posts. Why don't you just sign your name????

  14. >Thanks Chris, I was going to mention the Burzynski movie as well…everyone should watch it, I did yesterday. Although about cancer and not CFS, there are many lessons to be learned from it.

    Food for thought, can you imagine if it was ever proven that somehow XMRV was caused by vaccine contamination? The firestorm that would ensue would be like one never seen before in history. The full wrath of the federal government, FDA, and big pharma would come down like a huge hammer.

    The government is not our friend.

  15. >I don't know who "Anonymous" is who is writing all these questions, but that person certainly is smart. I wish we could get some answers to these questions.

    Patricia Carter
    XMRV+, 24 years M.E.

  16. >To answer one of Anon's questions: A bit from an interview with Jay Levy
    Source material: http://texts.cdlib.org/view?docId=kt0r29n43f&query&brand=calisphere

    "Now there are some interesting political aspects to this. I was playing squash with John Ziegler, because we had a regular squash game, and he said to me, "Dave Golde is saying that he is going to prevent us from getting the money unless he gets just as much money as you." Dave Golde had been here as a fellow in hematology and oncology when I was already an assistant professor and for some reason developed an envy. He seemed above coming to that meeting with Willie Brown, so he didn't have any request for money, and no budget.

    The legislators wanted to take money away from other people so that Dave Golde wouldn't mess it up, and I insisted to John that I would not give in: Dave Golde should not get this funding; we should call his bluff. There was no way he was going to challenge the state, and it would be more embarrassing to him. I'll never forget that. That was really unbelievable. I was furious. But it indicates what goes on here. So in July of 1983, the bill was voted on and approved. Golde didn't get his funds.

    I had just published the Lancet paper where I said that AIDS was an opportunistic infection,

    and it had gotten a fair amount of publicity. So I had established myself as thinking about the AIDS problem and also the cause of Kaposi's. So it wasn't like I was an unknown."

    (J. A. Levy, J. L. Ziegler, "Acquired immune deficiency syndrome (AIDS) is an opportunistic infection and Kaposi's sarcoma results from secondary immune stimulation," Lancet 1983, ii:78-81.)

    ". I then called Fran&ccidel;oise, and I said, "Send me some serum and fixed infected cells on slides, so we can see if it's the same virus." She sent the serum, and we did the immunofluorescence assay, and we found that the serum recognized some of the viruses we isolated but not all. So we felt maybe our virus was different from that of the French. Then I began thinking, We have a different one. They have a different one. This may be just a passenger virus in an AIDS patient, and we haven't found the real cause. So we continued to isolate viruses, checked the sera for antibodies to our agent and to slides fixed with the BRU (the French) agent. I called Fran&ccidel;oise and told her, "We've got some cross-reactivity, but not with all [viral] isolates."

    "Well, I didn't see any of the electron micrographs–oh, yes, when I went to the Pasteur Institute I saw them, and they looked okay but it was difficult to know if the agent was new. But I know that Bob Gallo thought, and others thought as well, that this virus [LAV] was a contaminant, that the French were famous for contaminating cultures with viruses from other sources.

    They said there was some cross-reaction with the horse lentivirus, equine infectious anemia virus, which was I must say dear to my heart. I had done a lot of sleuthing about the equine infectious anemia virus years ago when I first suggested it could be a retrovirus. And Gallo thought it was a contaminant. I think he even said so at one point. I think he said it to me. I did wonder about whether equine infectious anemia was a possibility as a cause of AIDS. That's why I thought, Well, if we don't find something like this in our patients, it could be a contaminant."

  17. >@Anonymous. Dream on it's not Judy. I'm sure she could care less what ERV says. Get a grip.

  18. >I'm new to this and would greatly appreciate any help in understanding the following:

    Is it possible that vaccines given to baby boomers in the 1950's and 60's played a role in their contracting ME in the 1980's?

  19. >I have deep concerns regarding Ian Lipkins views of the viability of retroviruses in the human host. About a year ago, I decided to watch all the videos online of Dr Lipkin to try to determine/speculate the reasons for his appointment. My conclusion, after viewing the videos, is that he will say the retroviruses are endogenous and pose no threat or infectious danger. I believe he is yet another decoy.


  20. >doesnt peterson prefer Vistide to Valcyte? Vistide is manufactured by Gilead, not Roche. and he is calling cmx001 a "near-perfect" drug..thats by Chimerix. so i dont think peterson is in bed with anyone, but if he is looking for the truth, i do hope he is looking for a retrovirus..because to me, it is just so painfully obvious that that is the culprit here.

  21. >Just like everyone else, I'm trying to make sense of this convoluted mess.

    The "Raggedy Anne Disease" was one that could be acquired quickly, and occasionally one could witness the way this thing "moved".
    Dr Peterson got to see it strike in his own office, and this event helped shape his perspective, and after that, he didn't care who he argued with. (That's true! I know, for I argued with him and he wasn't buying it about that OTHER thing I kept bringing up)

    Is there any possibility that his rationale is that if a retrovirus doesn't "move" this way, "it's not CFS"…. and if everyone who acquired "CFS" in this way already HAD a retrovirus, that whatever it causes wouldn't qualify as CFS?
    Autism, Parkinsons, Lyme and prostate cancer are not CFS. Not that a retrovirus isn't IMPORTANT, but if it is disconnected far enough from "CFS", could this distance be responsible for a "definitional" debacle?

    Go to Hillary's website and read the context of Dr Peterson's quote…(and read the whole book too)

    The loss of his nurse was a point of demarcation for Peterson. "After that," the doctor said, "there was absolutely, categorically no question in my mind about [the disease] being infectious and about it being real. From that point onward, I didn't care who I argued with. You couldn't convince me otherwise. There was such a marked change in people–a marked personality change. And the more people said, 'Oh, it's just craziness,' the more adamant I got."

    (Copyright (C) 1996, 2006, Hillary Johnson. Excerpted from Osler's Web, Crown, NY 1996, 720 pp., first edition, page 87-88.)

  22. >A few more.

    If Peterson knew "it" was "infectious" what steps did he take to insure that his patients, his employees, and his friends didn't catch it? Are his employees sick? Is "it" transmitted in the air? In saliva? By ticks? In equipment he used to test people? Does Peterson believe in human gamma retroviruses like XMRV? Or just viruses? Yes or no? Declare now, so that the patients know which team he is playing for? Coffin/Knox/Loomis or WPI? Is it too early? JUST SAY SO and let the science begin, not end. Write a public letter to Science and ask for time and money; don't be used and cynical. Doesn't Peterson owe it to himself and his patients?

  23. >I'll tell you what they did.
    They wore gloves, tried to maintain their distance, made MORE desperate phone calls to the CDC and tried to survive in a climate of abject fear. The whole town recoiled in horror.
    Anyone suspected to have "the flu" was warned NOT to leave their houses. No shopping for food, don't go anywhere… Don't mingle, don't come near anyone, especially children.
    Just "disappear"… "Leave town".

    When Kaplan and Holmes left, saying they weren't impressed by this illness, we just about went in shock. Unbelievable.
    They SAW it, they TALKED to people. Gary Holmes ADMITTED that some of us looked pretty ill.

    And they LEFT? Just LEFT? That's IT?

    To this day, I still can't believe this happened.

  24. >Erik,
    Couldn't a polio type virus fit the symptoms and the incubation period for the Incline outbreak? Post polio syndrome is also interesting to look at. Perhaps it is something that has evolved. This would not rule out a retrovirus or environmental triggers playing a role in this illness. I believe the trail must be followed backwards to try to put the pieces together.

    A Friend

  25. >CMX-001 is a phospholipid intramembrane microfluidization conjugate of cidofovir (Vistide). If Peterson likes Vistide then it is no wonder that he would like CMX-001.

    Chimerix also has CMX-157, which is based on tenofovir, and has potential for treating XMRV infections based on in vitro research. It is in the very early stages of development though and has only been through one single-dose toxicology study.

  26. >A-Friend,
    as told in Osler's Web, Dr Peterson sent blood samples from our cohort to the Gallo lab, which found that strange new strain of herpesvirus, "HBLV".
    Dr Peterson has never retreated on his position that this was our primary viral trigger for the purest form of the Raggedy Anne Disease, which appears to be the cause of the rift between
    Dr Peterson and the Whittemore Peterson Institute.
    Ampligen was primarily directed at "HBLV/HHV6A"
    This difference in viral factors stands as a stark difference between the Raggedy Anne Disease and the Royal Free outbreak.

    Many researchers DO tend to speak very fine and noble words which indicate they want to find out about CFS, and they generally assert they do believe in revisiting the evidence….. but so far, none have acted in accordance with these purported wise beliefs.

    They universally say it would be good to examine ALL the evidence, yet strangely, all of them utterly fail to put this concept into actual practice.
    Quite the contrary. Should I try to tell them what I saw, hearing these details is the last thing they would ever consider, and they can be quite insulting in their rejection of information. Which is why I don't trust them very much anymore. Or perhaps I should say that they have taught me NOT to trust them.

    Lisa Petrison is the only serious patient-investigator took it upon herself to take "The Incline Village Mold Tour", which is why Lisa knows more and can speak more authoritatively about the actual circumunstances than any CFS researchers can.
    Lisa knows whereof she speaks, because she CHECKED to see if my story was real.

    As far as not ruling out environmental factors, I guess my web-moniker alone makes my stance on that clear enough.
    The only reason I agreed to help start this new syndrome was to have this one small moldy detail looked into.
    It didn't seem like that was asking too much, but as it turned out, this was like asking for the impossible…. because "CFS researchers" did their best to make it that way!
    (This has been one helluva weird thing, too!
    I sure never would'a thunk it)

  27. >Erik,

    Thank you for providing additional info. about the Incline Village outbreak. Do you believe that Tahoe CFS is different than Lyndonville CFS or other ME described illnesses? Lp Just trying to understand how the CFS outbreaks would correlate to a ME diagnosis outside of the US. If you would rather discuss this privately, please let me if I can PM you elsewhere.

    A Friend

  28. >A Friend,
    we never expected our outbreak to be diagnosed with ME. We hadn't heard of it at that time.
    This was due to the ME literate doctors, Hyde, Parish and Shelokov, who looked over our charts and said our cohort "possess all the primary determinants of ME".
    The CDC agreed that this outbreak was "similar to Royal Free Disease, which the British call ME", then they went ahead and applied the CFS term to it.

    Dr Cheney says Incline and Lyndonville are the same thing.
    As far as I know, the only reason Lyndonville did not have "ME" conferred upon it as well,
    is that during the 1987 CDC viral meeting to discuss the Tahoe and similar outbreaks, Dr Bell had not yet amassed the same level of data as Dr Cheney and Dr Peterson, so there was probably insufficient evidence for the ME literate doctors to work with.

    But my intention was never to quibble or question whether other illnesses were the same.
    I just saw something particularly bizarre at Tahoe and wanted to get some research into it.

    It would be interesting to compare notes with a Lyndonville survivor.

    It was the "CFS community" that went wild and said that I cannot ask for research into anything, "Because that's just YOUR problem, and you have no right to tell others what their illness is".

    They've already thrown me off the cliff and shown that they have no use for the original evidence which started this whole CFS thing.
    So now that Dr Peterson is being thrown down the chasm, perhaps I'll have some more company at the bottom, and maybe we can discuss it.

  29. >Erik,

    Perhaps we will have a chance to meet soon. Don't give up on keeping the Incline story alive. Lots of new players are coming on board and all of the history is important. Lp

    A Friend

  30. >The idea that CFS can 'only' be caused by a retrovirus ignores a substantial proportion of the biomedical research literature on the disease and therefore to call into question an individual's motivations for not being obsessed with a retroviral aetiology is absurd.

    1. There are numerous documented outbreaks of ME/CFS throughout the world, with a substantial number of them implicating an enteroviral cause. For instance there is the issue incubation period- most ME/CFS outbreaks had an incubation period of about 7 days, which fits in precisely with the 3-10 day incubation period of enteroviruses. ME/CFS outbreaks in Iceland, I believe, also prevented sufferers from falling ill during a subsequent polio outbreak. One of the WPI's various arguments about XMRV is that it has a long latency period, which again does not agree with previously documented evidence.

    2. As a poster noted above, post-polio syndrome is known to share a striking resemblence to ME/CFS.

    3. There is also the issue of a) documented persistant enteroviral infections in the gut of ME/CFS patients as reported by John Chia, b) improvement of symptoms which correlate with enteroviral staining following treatment as also documented by Chia and finally, c) a cause/effect relationship between enteroviral infection and ME/CFS as documented in several case studies, also done by Chia.

    4. There have been numerous other studies which have shown persistant enteroviral infection in the skeletal muscles of ME/CFS patients.

    For anyone to say that ME/CFS 'has' to be caused by a retrovirus, they would basically have to either ignore or not be acquainted with a substantial portion of the biomedical research literature on the disease. Furthermore, to question an individual's integrity, 'motivation', intelligence, etc. who did not necessarily subscribe to a retroviral aetiology for ME/CFS is just plain ignorant.

    That said I do think there are subtypes of ME/CFS and a retroviral cause for one or more subtypes, especially those with a progressive disease course, is certainly open to question, but to make such sweeping judgements out of hand is completely unfounded.

  31. >To Anonymous, June 15, 2011 12:20 AM:

    People are being judged not because of what theory the subscribe to or not, but because of their blatantly unscientific actions.

    We've seen a parade of supposedly qualified scientists who conspicuously avoid genuine replication yet try to sell the result to the public as not only a replication but also negative proof (i.e. claiming absence of evidence equals evidence of absence). How else can this be explained except by corrupted integrity/motivation and/or lack of intelligence? I'm open to suggestions.

    Your four points arguing against retroviral aetiology are simply variations on the same red herring that ignore a commonly understood aspect of the XMRV hypothesis: IF XMRV is causative, it is likely to require a second "hit" or co-infection to trigger full pathogenicity.

    Thus, enteroviral infection does not rule out XMRV's role, but likely actually enhances it. Outbreaks of ME/CFS are consistent with outbreaks of secondary infections that trigger chronic disease state in those with existing sub-clinical XMRV infection (given the general population infection rate of ~4% as indicated by the positive studies). And post-polio syndrome: just because two things resemble one another does not rule one out of existence.

  32. >My handicap in dealing with the CFS community, and Dr Peterson's too, I believe,
    is conceptualizing "CFS" as being the
    Raggedy Anne Disease.

    RAD was one helluva bizarre illness.

  33. >http://www.imeassoc.com/Cause_of_ME_outbreaks_.html

    During the 1985 Incline Village "Raggedy Anne Disease" incident, I felt like I was burning up, couldn't breathe… head was killing me.
    I staggered down to the beach for some fresh air. A storm had just gone through and pushed lake-sediment up on the beach.
    As the high waves from the storm died down and receded, the sediment settled into multiple long flat steps, each about two feet wide, then a sharp drop-off of perhaps an inch or two.

    I didn't feel any better at the beach.

    Then the vertical rise between these sediment-ledges caught my attention. I had never seen anything like it. Nobody else had, either, for each person I showed it to, reflexively said
    "It must be grass", for these silt-ledges were all bright green.

    When I pointed out that it couldn't be….,
    "Well it can't be bad, or someone would tell us".

    When I agreed to become a prototype for CFS,
    I thought,
    “They’re going to want to know about this!”

  34. >At the time, I figured it shouldn't take more than about fifteen seconds for the average person to go "Holy CRAP!"

    Instead, there is dead silence, and my words simply drift away as if they had never been said.

  35. >Interesting news…David Koch, one of the billionaire Koch brothers and funder of the XMRV macaque study as it relates to prostate cancer, was on the Board of Directors for the NIH until October 2010.

  36. >"This was due to the ME literate doctors, Hyde, Parish and Shelokov, who looked over our charts and said our cohort "possess all the primary determinants of ME"."

    Yet even Byron Hyde has said that XMRV has nothing to do with ME.

    And as for the NCF…they were also very quick to dismiss XMRV and accuse the WPI of profiteering. Interesting coming from an organization that has done nothing for patients for the last 10 years, except bitch about other organizations.

    Oh, that's right, and they found "the" cause…what, five years ago?

    Crickets chirping…

  37. >I agree that it is a crime against humanity to halt research into XMRV.

    I'm a classic ME patient. The only treatment I've had in three decades that gets rid of my symptoms and makes me feel better is antiviral medication. So it seems fairly clear that my symptoms (if not illness) are caused by a virus, or viruses. These are not unusual viruses: HHV6, EBV. Parvo – almost everyone has been infected with them since childhood – so why are they making ME sick? And, perhaps most importantly, why DIDN'T they make me sick prior to 1984 when I and millions of others worldwide got sick during an epidemic that went around the globe and from which most of us didn't recover. What was it? Something infectious? Well, it must have been… But, infectious illnesses such as flu, viruses, etc are circulating all the time, nothing new or unusual about that. So, once again, WHAT WAS IT??? What was unique about THAT infectious illness. Something must have been! Surely.

    This is no small illness. It's right up there with MS, AIDS and the like in terms of incapacitating its victims. It quite literally robs people of their lives. It destroys families, careers, finances, friendships, and leaves people lonely, isolated, and in what's been best described as a state of living death. It doesn't get much worse than that. I've been there. I know.

    A retrovirus has been suspected since the early 80s. It has been glimpsed by more than one scientist, in more than one country looking for a cause for this debilitating illness. Other than this, nobody else has even come close to finding a cause yet. Well,it's been a bloody long time. So, when a retrovirus shows it's face once again in 2009, anything other than exhaustive research into whether that retrovirus causes the illness is indeed a crime against humanity.

    And if XMRV is not the cause, can one of those eminent scientists, virologists, epidemiologists who are willing to stake their reputations on that tell us: what was the infectious illness that swept the globe in 1983 and 1984 that left patients horribly ill to this day? That's really what we want to know.

  38. >To Lisa Simpson:

    Yes, I agree. These are the important questions that we all need to be asking.

    Using the AIDS paradigm, it makes sense that a retrovirus would have the potential of reactivating all these other viruses.

    However — since you honestly seem to want the answer to these questions — maybe you might be willing to consider an alternative.

    Perhaps in ME/CFS, a particular toxin acts the way that HIV does in AIDS — causing all kinds of viruses to reactivate.

    It doesn't seem inconceivable that a toxin could do that. For instance, from the HHV6 Foundation's site, here is a summary of a recent article.


    Arbuckle JH, Medveczky MM, Luka J, Hadley SH, Luegmayr A, Ablashi D, Lund TC, Tolar J, De Meirleir K, Montoya JG, Komaroff AL, Ambros PF, Medveczky PG. The latent human herpesvirus-6A genome specifically integrates in telomeres of human chromosomes in vivo and in vitro. Proc Natl Acad Sci U S A. 2010 Mar 23;107(12):5563-8.

    "HHV-6 integrates into the chromosome during latency and reactivates in response to chemical stimulation. Peter Medveczky and colleagues determined that HHV-6 uses a novel form of latency. The virus finds safe harbor inside the human chromosomes to evade the immune system. Medveczky made this surprising finding by studying patients who have a rare form of HHV-6. These patients are actually born with HHV-6 integrated into every cell of their body, and the virus is passed from parent to child. Many scientists believed that this integrated virus could not be reactivated, but Medveczky's group determined that chemical stimulation can cause the integrated virus to reactivate and start producing active virus."

    Meanwhile, on its own website, the National CFIDS Foundation has expressed interest in the following paper, which suggests that certain aquatic biotoxins have the potential of reactivating herpes viruses:

    Okadaic acid-like toxin in systemic lupus erythematosus patients: hypothesis for toxin-induced pathology, immune dysregulation, and transactivation of herpes viruses; Mitchell TM; Med Hypotheses 1996 Sep;47(3):217-25

    This is of specific interest to me because of my own experiences with a particularly potent outdoor toxin having the characteristics of aquatic biotoxins (such as brevetoxin or domoic acid).

    I was hit very badly with this poison when camping in the Lake Tahoe area a couple of years ago, and have encountered it (in lesser quantities) in other places as well.

    Erik has informed me that this toxin was particularly intense ("like an asteroid strike") in the Lake Tahoe area in 1984-85, during the epidemic, and that it indeed remains problematic there to this day.

    I also see in the National CFIDS Foundation's website that Dr. Yoshitsugi Hokama, of the University of Hawaii, received $5 million from the NIH to study aquatic biotoxins, and that $1 million of this was related to work he was doing with ME/CFS.

    Certainly I think that we need to continue to carry out work into XMRV until we get the answers we deserve.

    But I don't think that we should assume that XMRV is the only factor that has the potential of explaining the phenomenon you're describing.

    There is at least one alternative explanation. Perhaps when the controversy with XMRV is resolved, one way or the other, someone will take a look at it.


    Lisa Petrison, Ph.D.

    lisapetrison at yahoo

  39. >Thank you Jamie. For over twenty years I worked mostly as a critical care nurse. Over a period of time I watched pharmaceutical companies manufacture new pain medicines that they claimed were not narcotics or addicting, then patients would become addicted to them, That opened my eyes. I also watched doctors buy into the lies while I told them the medications were addicting. They treated me like I just did not know what I was talking about while I showed them the chemical structure which was similar to other narcotics. As I read the comments here I was reminded of how it felt to know the truth while being surrounded by nay-sayers. Years ago I decided there were two possible reasons the government was blocking the CFS reasearch, either it was introduced into the population in a vaccine or a drug company was working on a medication and did not want the discovery of the retrovirus to happen until they had the drug ready. I now realize both scenarios may be true.

  40. >Lisa Simpson.

    You indicated that Tapanui-Flu survivors started out with an extremely high fever.

    The Incline Village, "Raggedy-Anne-Disease" was consistently subnormal.

    This may be an important clue!



    The Complexities of Diagnosis
    By Dr. Byron Hyde
    Chairman, Nightingale Research Foundation

    Oral Temperature. Prior to the office visit, I have patients take a temperature reading at specific times, 4 times a day for three days, and also ask them to have a healthy friend of the same age and sex provide a similar temperature series for comparison.
    This is not a good test due to the variation of procedures and menstrual cycles, but the patient with acute onset ME/CFS frequently has a substantially subnormal temperature. In 15 years of examining chronic ME or CFS patients in Canada, the United Kingdom, and Australia, and in CFS clinics in the United States, I have found an elevated temperature on only two or three occasions. The significance of elevated temperature in the CFS definition eludes me. Patients have subnormal or normal temperatures.

  41. >@Celia Harrison

    Like you Celia, I've worked in healthcare for many years, only in the clinical lab. I suspect your scenarios are likely close to the truth. There may be others as well.

    I remember in the 80's when we were being "strongly encouraged" to take a Hepatitis B vaccine even before there was a test for HIV.

    We were TOLD that the Hepatitis B vaccine at that time was derived from from two groups of blood donors with high rates of infection for Hepatitis B (IV drug users and gay men).

    Since they did not have a reliable test for HIV, there was no way they could guarantee the vaccine would not transmit HIV. I don't know of one person at the hospital I worked at that took the vaccine. What about those who did?

    Years later, it was required that we have the Hepatitis B vaccine. While confident the vaccine was properly screened for HIV, I had no idea that I could possibly be infected with another virus. That was not on my radar. Within a year, I had a diagnosis of fibromyalgia.

    ~ JT

  42. >I've never taken the Hep B vaccine and neither have my children. Doesn't mean I don't think there aren't possible retroviruses in them. I think it's possible they were in them years ago and I got XMRV through vertical transmission.

  43. >http://www.whale.to/vaccines/hyde.html

    Dr. Byron Hyde (testimony before the Quebec College of Physicians Medical Board)
    Dr. Hyde, a medical doctor. after listing his credentials, is recognized as an expert in the field of chronic fatigue syndrome (CFS).

  44. >Erik,

    The link you provided did not work for me are you sure it is correct?


  45. >Erik,

    Dr. Watson was able to assist me in connecting to this link. Very, very interesting my good man. Wasn't the Hep B vaccine questioned as a possible link to HIV? Round and round we go, but the circle keeps getting smaller.
    Recommending that http//www.whale.to/vaccines/hyde/html is worth viewing.


  46. >"Where large sums of money are concerned, it is advisable to trust nobody. ~ Agatha Christie"

    Does this include the Whittemores and the patents that Mikovits and the WPI hold on XMRV?

  47. >ErikMoldWarrior said…
    Lisa Simpson.

    You indicated that Tapanui-Flu survivors started out with an extremely high fever.

    The Incline Village, "Raggedy-Anne-Disease" was consistently subnormal.

    This may be an important clue!

    Erik, Byron Hyde is obviously referring to patients that he suspects of having, or has already diagnosed as having ME, therefore it must be some months into the illness as diagnosis is not made on day one. My temperature has also been consistently subnormal since early on in the disease process (as has my blood pressure), and still is. The fever with the high temperature which triggered my ME was a one-off event.

    I have no idea if everyone with Tapanui flu had an elevated temperature at onset. I know I did and have been told by another NZer that she did, and a British guy. This was an unusual fever, as in something we'd never experienced before. I have also been told by an ME specialist in NZ that she saw patients with the big fever onset, but not everyone I don't think.

    Also, not all HIV infected get a fever at the time of infection, even though they are all infected with a retrovirus. So what the significance of not having an elevated temperature versus having one at the onset of ME is I have no idea.

  48. >Our cohort was consistently low, which raised some alarm that this "flu" was not normal.

    If an illness didn't have a fever back then, we assumed it must be a bacteria.

    In fact, I brought it up when I argued with Dr Cheney about the strange way mold was behaving, because it occurred to me that a swift moving bacterial-infection and a mold might not get along so well.

    "Then it must be a bacteria, because whatever's got ahold of me seems to care A GREAT DEAL about mold".

    Of course I wasn't certain of this.
    I just wanted to get someone to look into the mold.
    My efforts were unsuccessful, and other than
    Dr Shoemaker… remain so.
    Which is very strange for a medical profession which claims to be searching so diligently for possible clues to this mystery.

  49. >Why won't people look at ALL the evidence?

    Isn't that what science is supposed to be about?

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