The Shell Game

The Singh paper was yet another study where an apparently decent scientist proved beyond a shadow of a doubt that she couldn’t find XMRV in anyone. Or at least that she couldn’t find a VP62 plasmid clone in any CFS patients or controls. But since she did not use a human isolate as a positive control, her results are meaningless. She also proved again that a test derived from monkey antibodies to a VP62 clone doesn’t detect anything in humans. What she didn’t prove is that XMRV and other similar viruses are not infecting humans and she certainly didn’t prove anything that doctors or patients should care about with respect to their treatment decisions. That she would presume to comment is outrageous.

It hurts more because she seemed to be our friend. I met her in Reno last August. She was very excited by our responses to antiretrovirals, chosen because of her in vitro drug testing paper. Interesting that she was able to find XMRV in human tissue when she was studying prostate cancer in 2009 (XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors. Schlaberg/Singh). Odd that she so recently applied for a broad patent with respect to the virus. Then she stabs the WPI, a collaborator, in the back. Very peculiar behavior. My best guess? Follow the money.

In my opinion, the scientific community is still asking the wrong questions. It is important to validate the original work of course, but that is a very small part of what needs to happen. Given that it is obvious from the pathology that we are dealing with one or more previously unrecognized retroviruses, most likely simple animal retroviruses that jumped to humans in some way, the correct question is, which virus or viruses? Not how do we make this one go away so we can all go back on coffee break, rather than recognize the public health disaster in front of our noses. Pretty poor performance, even for government work.

Since the science is progressing glacially, it is not possible for me to evaluate what antiretrovirals are doing for me now, having taken Viread and Isentress for more than 14 months. However, I am approaching 90% of function this week, still in Hawaii. I have been out every day, most of the day, for 12 days. I went snorkeling (a little). I have walked up some steep hills. I have had no PEM. Only very brief episodes of feeling sick, which are not severe and pass quickly. I am eating, sleeping, dreaming normally. I am not short of breath at rest, or even with reasonable exertion. I am very deconditioned, but feel like I can start a measured program to get back in shape. I am choosing upright and the usual energy calculation that runs through my head when I think about whether to get up or not isn’t happening.

I do think it likely that this latest improvement has something to do with the change in altitude; I became polycythemic when I moved to Santa Fe, which is at 7500 feet. I could exercise and was never short of breath without appropriate exertion before that. It will be interesting to see how I do when I go home this week. It may be that going back up will be good too, due to epo which is anti-inflammatory. Athletes know that going up and down is the hot ticket. I’ve been thinking about transitioning to the islands since I left in 1981, but never seemed to be able to make it happen. Our son is finishing up the 11th grade, doing really well, and we are committed to keeping our home in Santa Fe at least until he graduates. But life is full of possibilities again beyond the bed and the couch. My life has improved immeasurably from the positive XMRV culture I received from VIP Dx a year ago January.

Sleep architecture is an important indicator of severity of illness in ME/CFS, certainly for me, but for many others as well. I had been sleeping better for some time before this trip, so the improvement I’m experiencing isn’t all from palm trees and tropical air. It is hard for me, currently beating the odds (knock on wood), to believe that antiretrovirals are hurting me. Though it is possible that I have improved further from going off AZT, I still believe that it helped me in the beginning. It should be remembered that an efficacious treatment paradigm may turn out to be completely different from what has evolved for HIV. It may be possible to take antiretrovirals for a time to knock it back, clean out reservoirs, in conjunction with other things that are conducive to proviral latency. Even inhibiting replication, provirus is sitting there silent, or waving in the breeze. Our knowledge of HIV suggests there are things we can do to encourage latency. Our observation of the disease over decades has taught us that the balance can be tipped in our favor in various ways. Working with the internal and external environments is crucial for recovery.

As for Dr. Singh’s desire to practice clinical medicine? I guess she thinks this patient should not be allowed to continue his meds. From my email this morning:

I tested positive for XMRV. I have been taking zidovudine, tenofovir, and raltegravir for just over 5 months. I started over a 2 1/2 month period and I was on all three by January. Since the end of January, I have experienced very short periods of unmistakable clarity and no symptoms (much more pronounced compared to any period of reduced symptoms that I may have experienced in the past twelve years that I have been ill).

I wish I could report that Ali is doing as well as I am. She didn’t change noticeably one way or the other from stopping AZT. She is in no way as sick as she was when we started this journey. She is stable, but still just below the surface. She has been having some MCS symptoms recently. We are going to step it up again, considering mild HBOT, Meyer’s cocktail/glutathione IV’s and possibly Nexavir. Ali has inflammatory skin stuff and Nexavir is indicated for skin problems; always good if a therapeutic option addresses more than one problem. She only needs a small additional increment of improvement to be able to get a life again. She is hoping to experience Hawaii too. Neither of us would stop the things that have helped, Actos, Deplin, B12, vitamin D, bioidentical hormones. Nor do we have any inclination to stop antiretrovirals, certainly not on Dr. Singh’s say so. We have done too well on them so far to rock that boat. We need to keep building on our gains.

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76 thoughts on “The Shell Game

  1. >Having lived in Switzerland for years I know how I felt living on high altitude, those were my best years. I would give anything if I could teleport myself from wet Oregon back to my Alp meadows, thin air and the healthier feeling with more energy.
    From Switzerland we moved to the Calfornia Coast, Marin County were I loved living but started to get more I'll, form the Coast to the California desert, with only 2 seasons summer and less summer, that was an extremely painful and difficult time for me. Having photosensitivity meant I could only in the dark sit outside for a while. After 3 years we moved to France, did better in the South of France than later in Britanny at the far West coast of France. Britanny or Bretagne as it us called is at a 3 point wind, they have the influences of 3 seas an their wind. My health went up and down with the barometer and their I discovered that lots of my crashes were related to the barometric pressure that could go up and down more violently in one day than the stock market.

    Healthcare in France did not get the memo about ME or CFS. They refused to consider or read my medical files because they were written in English, instead they wanted to invent the wheel again and send me for a great variety of tests including the famous TTT (Tilt Table Test) which I think should be on the list as not approved torture method. My heart stopped during the test after they had a first positive, I fainted, and they wanted more data which I because of my rotten French did not understood and they injected me. That's when somebody turned out my light.
    When my husband received a job offer for Oregon we jumped at it because we hoped on better treatment options for me. Although I love Oregon deeply I feel rotten, have now become house and now bed bound. Like living in France the barometer goes up and down so fast it makes your head spin.

    I got I'll in 1970, have lived in many countries, climates and elevation, but never felt so good as living at that high altitude in Switzerland. Maybe one of the reason that I felt better is because my blood is as thick and sticky as molasses and I inject myself 2x daily with a good amount of Heparin to keep it from sticking together, and maybe the high altitude worked as a blood thinner.
    Just guessing. Anyone who has a teleporter please mail me in private! :-)

  2. >I apologize for stupid autocompletion software that corrects ill to I'll and more. It's a sad day when you have to check to see if your computer spelled your words correctly. Shouldn't that be the other way around? :-)

  3. >I live in the UK and am XMRV+. I don't have a hope in hell's chance of being prescribed anti-retrovirals over here. Doctors aren't even allowed to prescribe anti – virals here for CFS!!
    Why when the UK government does nothing for CFS sufferers, do they then prevent us from helping ourselves?
    Taking antiretrovirals would be no more harmful to me, than leaving XMRV untreated to wreake havoc in my body.
    I am so pleased for all of you out there who are being given the opportunity to try these treatments but I am devastated for the rest of us who just cannot get access to them.
    If anyone knows of any Doctors in the UK who are prescribing anti-retrovirals for XMRV, then I would love to know of them.

  4. >Khaly Castel asked: May 9,2011 9:12 PM about CAA´s involvement in Singh`s latest XMRV paper. Look at Under "The Metods" "This testing was performed in an independent laboratory (ours),using many of the same techniques as the orginal study" Look and see yourself, I have brainfog.
    Many greetings to your all! Rosalie Helmer, Denmark

  5. >Regarding Hawaii. I wonder if the tap water has flouride in Hawaii, like it does on the mainland? Just another variable to consider. Somebody mentioned in a forum post that even showering in flouridated water could affect ones system. For me I know that I have stomach issues, so to throw flouride in to boot must just be lovely for an infectiont that might affect the stomach.

    Also, the salt water might help detox. Kind of like a epsom salt bath.

    Thanks for the update.

  6. >Two questions to consider:
    1) What if we really aren't infected with XMRV, and the improvements some people are seeing on ARVs are for some other reason (just like some people respond to antivirals, others respond to Ampligen, etc.)?

    –Then continuing to push most of our research resources toward finding XMRV is unfortunately not going to help the rest of us. Especially those of us with few funds =(

    2)What if most of the involved scientists aren't on "our" side _or_ "their" side, but no one's side at all?

    –Most respectable scientists that I know *don't take sides*; what they want is to figure out the truth, regardless of whether it has negative ramifications. And unfortunately I have a feeling most of them also don't respond favorably when blogs and public forums accuse them of having bad intentions. If I were them, I'd go running fast in the other direction! We have the right be disappointed, but being harshly and publicly judgmental is no way to recruit top researchers to help us find a cause and a cure :(

  7. >Debil's advocate: I'm giving you a kudos and round of applause!! Willingness to ask the question, what if I'm wrong is a rare quality.

  8. >Jamie,

    At first I must admit I was quite disappointed in your original post, with some of your rather odd comments about Dr. Singh (we thought she was our friend, she stabbed WPI in the back, etc.).

    But I'm glad to see you post about other issues that may be involved in our illness — like pesticides, heavy metals and other toxins — and I also appreciate the input of Lisa, Khaly and yes, even Erik, regarding the mycotoxins that can come from molds.

    These are all things that are almost NEVER discussed when discussing this illness, and IHMO should be.

    Yes, everyone is different, everyone has different 'toxic loads', but again, this issue is almost never discussed.

    I will get spammed for this, but I think that despite the fact that she did bring up Erik's mold avoidance, the fatal flaw in Osler's Web is her overall suggestion that CFS/ME/CFIDS is probably caused by ONE thing, similar to the HIV virus, and that thing has been covered up.


  9. >Well said, Debil's Advocate! We can't afford to scare away scientists through our own rigid orthodoxy or by attacking them personally when we don't like their results. It fine to "scare away" folks like Reeves and Wesseley (if only we could!), but not a virologist like Singh, who could be very helpful in the long run.

  10. >Dear Dr. Deckoff-Jones,

    How does one detoxify pesticides or fungicides from the body?

    Thank you.

  11. >Thanks Johnny.
    Although I have occasionally used the term "mycotoxins" in a failed attempt to induce a scintilla of scientific curiousity from researchers… if people were to read MY words VERY carefully, (as opposed to words attributed to me) they'd see a funny thing.
    I go out of my way to avoid implicating them.
    In fact, I don't bring up any known allergic or toxicological process at all.

    I say weird things like "effect" instead.

    And there is just one little thing I'd like people to remember.
    "I avoid mold as if it were plutonium"

    I admit it. THAT one is cryptic, deliberately so.

    It's an attempt to convey that concept that if something completely defies conventional explanations, it's likely to be an exercise in futility to search among conventional explanations for the answer.

  12. >@Anonymous who posted at 8:47 a.m

    Can you show us proof that these email actually quote Dr. Singh and Dr. Mikoviz.

    If Dr. Mikoviz actually said what you quoted, it's very unprofessional. Not the first time, though.

    Laurie B.

  13. >Paul, I WOULD post under my own identity, but for some reason the website will not let me do that.


  14. >One has to wonder how closely Illa Singh's study followed the protocols and methods of the Lombardi et al study in which she claims there was no XMRV in CFS patients. At first glance her study appears to be a serious attempt to discover whether XMRV exists in these patients; even the patient whose virus was sequenced and photographed. Dr. Singh's study includes many experiments with similar sounding names. However, the similarities end there. It seems the details in retroviral research are as important to one's success as they are when one attempts to bake a cake.

    Everyone who has ever witnessed one of their children's first attempts at baking a cake knows that if their child ignores the directions, throws all the ingredients into one bowl, and perhaps creatively substitutes a few key ingredients for others not in the recipe, then tosses it in the oven at the wrong temperature, that they will never end up with anything close to a cake. The child will say they tried, of course they did. But the reality is that if they don't follow the recipe they will fail every time. It's that simple.

    However, no one would suggest that because their child failed to bake a cake that there is no such thing as a cake. Instead, a good parent would carefully point out the mistakes that were made and suggest that next time they follow the recipe carefully and completely. If that child continued to assert that they did everything right despite evidence to the contrary the child would probably be told to wait to try again until they could understand the importance of following a recipe.

    Finding XMRV requires following very complex and specific directions. Just like baking a cake, you must follow the directions or you will fail. Is anyone really surprised by this concept?

  15. >NMR Biomed. 2011 May 11.
    doi: 10.1002/nbm.1692. [Epub ahead of print]

    A brain MRI study of chronic
    fatigue syndrome: evidence
    of brainstem dysfunction and
    altered homeostasis.

    Barnden LR, Crouch B, Kwiatek R, Burnet R,
    Mernone A, Chryssidis S, Scroop G, Del Fante P.


    Department of Nuclear Medicine, The Queen
    Elizabeth Hospital, Adelaide, South Australia; School of Chemistry and Physics, University of Adelaide,
    Adelaide, South Australia.


    To explore brain involvement in chronic fatigue
    syndrome (CFS), the statistical parametric mapping of brain MR images has been extended to
    voxel-based regressions against clinical scores.

    Using SPM5 we performed voxel-based morphometry
    (VBM) and analysed T(1) – and T(2) -weighted
    spin-echo MR signal levels in 25 CFS subjects and 25 normal controls (NC).

    Clinical scores included CFS fatigue duration, a score based on the 10 most common CFS symptoms, the Bell score, the hospital anxiety and depression scale
    (HADS) anxiety and depression, and hemodynamic
    parameters from 24-h blood pressure monitoring.

    We also performed group × hemodynamic score
    interaction regressions to detect locations where MR regressions were opposite for CFS and NC, thereby indicating abnormality in the CFS group.

    In the midbrain, white matter volume was observed to decrease with increasing fatigue duration.

    For T(1) -weighted MR and white matter volume,
    group × hemodynamic score interactions were
    detected in the brainstem [strongest in midbrain
    grey matter (GM)], deep prefrontal white matter
    (WM), the caudal basal pons and hypothalamus.

    A strong correlation in CFS between brainstem GM
    volume and pulse pressure suggested impaired
    cerebrovascular autoregulation.

    It can be argued that at least some of these changes could arise from astrocyte dysfunction.

    These results are consistent with an insult to the midbrain at fatigue onset that affects multiple feedback control loops to suppress cerebral motor and cognitive activity and disrupt local CNS homeostasis, including resetting of some elements of the autonomic nervous system (ANS).


    Astrocyte depolarization.

    (And you thought I was just kidding!)

  16. >Hi Everyone,

    Same anonymous scientist here that posted a month back about how this blog is actually doing a diservice to the scientific community on CFS and/or XMRV through inflammatory posts and baseless conspiracy theories…

    It appears that nothing has changed.

    To give you an understanding where I'm coming from – I worked alongside Dr. Singh (though I will not divulge to what level) and have found her earlier papers on PC dubious. This is due to immunohistochemistry results that did not support her claim. I'm not the only one who feels this way in the community as well.

    Given that, this is her strongest work so far. The data is solid and the controls are good. She took samples from the original study and new cases and looked for XMRV using similar techniques from the original Lombardi paper. For example (quoting her paper now):

    This protocol was adapted from the one used in the original study that found XMRV in CFS (12) with extensive help from Dr. Frank Ruscetti (Leukocyte Biology Section, NCI)

    All samples were double blinded. All the figures have positive controls unlike what Dr. Deckoff-Jones states in her blog. A positive control is not a potentially infected individual – this is actually an experimental sample. A positive control is a KNOWN AMOUNT of viral DNA/antisera/virus that can be measured. Singh has this in her paper.

    To all the readers here who are so positive that XMRV causes this disease I pose this question:

    What if the original CFS paper is incorrect? Do you think its possible?

    I'm not saying it is (more work still needs to be done). But for just a minute think about the possibility of the WPI's work being mistaken (nonetheless for a good cause).

    What will the CFS community do then? Where would research be focused on next? Mold? autoimmune disorders and CFS? Genetic links?

    These are things to think about, and as a passionate group desperate for a cure, all possibilities must be explored. Even incorrect ones.

    However to blindly state that XMRV causes this disease without proof, lambasting the researchers (Singh) who care about CFS patients, and continuously stoke the anger from CFS patients desperate for answer is, I like I have stated, UNETHICAL.

    All of this takes away from looking and researching what may truly cause CFS.

  17. >Please do not misquote me. I believe the disease, and other neuroimmune diseases, to be of retroviral origin. The Lo/Alter paper suggests that there are other simple gamma retroviruses found in CFS patients at a higher rate than controls. XMRV may or may not turn out to be the major player. It may be that it takes two to tango. Again, absence of proof is not proof of absence. An entirely negative study is meaningless in this context. It is incumbent upon the scientific community to tell us what is there, not only what isn't.


  18. >To Jamie:

    And its incumbent on you to stop alienating the researchers that are trying to help.

  19. >Karen,

    To post under your own identity, you need a gmail account, but, if you don't want to register, post anonymously and sign your name.

    There is no way to disable the spam filter on blogger, so if your comment doesn't come through, please be patient. I try to remember to check it regularly, but sometimes forget.

    Thank you all for contributing.


  20. >Dear Anonymous,

    I don't think I've alienated anyone who is truly trying to help. And I get a tremendous amount of mail from patients telling me my blog is helping them.


  21. >To The Anonymous XMRV Researcher:

    I myself am very glad to see you posting here again, and to read Singh’s assertion that CFS is “a devastating disease for which a cure needs to be found.”

    The most important consideration here is that ME/CFS cannot be allowed to fade back into the shadows of being considered something not very serious and unworthy of study. XMRV has brought attention to the disease and people who suffer from it. Having that attention fade if the retrovirus doesn’t pan out would be a tragedy.

    I personally am not wholly convinced by your study, for a reason that I’ve not seen mentioned elsewhere. The WPI study used the original Tahoe cohort and other exceedingly sick individuals. If you read Osler’s Web, you will see that their symptoms and markers went far beyond the Canadian Criteria. This was especially the case with immune system abnormalities, such as extraordinarily bizarre B cells that are not seen in less affected ME/CFS patients.

    I believe this was due to those people’s disproportionate exposure to a particularly damaging outdoor biotoxin present in high levels in certain geographic areas. Regardless of the reason, though, it seems conceivable that XMRV occasionally can be found in the blood of extremely sick patients, but otherwise is just in tissues. That could explain the disparate results, at least with regard to the main patient group in your study.

    I appreciate your bringing up mold as a potential area for study. I don’t think it should happen only if XMRV does not pan out though. Certainly it would be good if (as in autism) toxins in general gained more attention in ME/CFS, but having viral researchers consider toxins as part of the equation would be even better. If we knew that certain toxins made XMRV go more active, for instance, that would be a good variable to control in studies.

    This seems an uphill climb though. I recently wrote to Harvey Alter (a gentleman and a scholar, my highest compliment) providing a biotoxins overview; he responded cordially that it was an interesting possibility that he’d never thought of, that he would keep it in mind as a “new nugget of knowledge that I can draw on,” but that he did not have the resources or expertise to pursue it actively. Judy Mikovits has spent considerable time discussing biotoxins with Erik Johnson, but to my knowledge has not actually incorporated toxins into any of her work.

    Is it a pipe dream to think that virologists might actively explore how pathogens and toxins might work together to create this illness? How might one go about making that happen?

Thank you very much for your work on this disease.


    Lisa Petrison, Ph.D.

    lisapetrison at yahoo

  22. >Just like everyone else, I was convinced up until year 2000 that regardless of the nature of this reactivity, it must be solely the result of some more primary dysfunction.

    Then I stumbled over evidence that shows this might not be the case.
    Something changed!

    It IS possible that fungal organisms can shift their pathogenesis on a global scale.

    No one has any doubt that bacteria can and DO mutate to create "superbugs", yet for some reason, people feel safe in assuming that fungal organisms can never do the same thing.
    (Although there is much historical precedent that it can)

    Regardless of whether this is the case or not,
    this assumption seems to be based more on sheer hopefulness, than actual scientific assessment of the potential risk.

    It appears that researchers aren't looking because they so earnestly hope that there is nothing to find.

  23. >I have followed your blog for several months and have drawn strength simply from realizing that others far more educated than I am related to this terrible illness are making their voices and questions heard. Thank you so much.

    As I have reviewed previous posts it appears that you have made medicinal changes from time to time and have had varying results. I can not readily determine what you are taking today.

    Would it be possible to inform relative newcomers like me on every blog post, perhaps in your "signature", the medications that you are currently taking?

  24. >Although I have occasionally used the term "mycotoxins" in a failed attempt to induce a scintilla of scientific curiousity from researchers… if people were to read MY words VERY carefully, (as opposed to words attributed to me) they'd see a funny thing.
    I go out of my way to avoid implicating them.
    In fact, I don't bring up any known allergic or toxicological process at all.

    I say weird things like "effect" instead.

    And there is just one little thing I'd like people to remember.

    "I avoid mold as if it were plutonium"

    I admit it. THAT one is cryptic, deliberately so.

    It's an attempt to convey that concept that if something completely defies conventional explanations, it's likely to be an exercise in futility to search among conventional explanations for the answer


    Organisms capture radiation: black fungus
    Melanin pigments in black fungi harness energy for metabolism by scattering/trapping photons and electrons from ionizing radiation.

    "Melanins are unique biopolymers that protect living organisms against UV and ionizing radiation and extreme temperatures…For example, the melanotic fungus C. [Cladosporium] cladosporioides manifests radiotropism by growing in the direction of radioactive particles and this organism has become widely distributed in the areas surrounding Chernobyl since the nuclear accident in 1986 [7]. Both in the laboratory and in the field several other species of melanized fungi grew towards soil particles contaminated with different radionuclides, gradually engulfing and destroying those particles [35,36]…On the basis of these precedents and the results of this study we cautiously suggest that the ability of melanin to capture electromagnetic radiation combined with its remarkable oxidation-reduction properties may confer upon melanotic organisms the ability to harness radiation for metabolic energy." (Dadachova et al. 2007:10-11)

    "Fungi are well-known for breaking down organic material, not creating it from scratch, as plants do. But a fungus that might break that mold has been discovered thriving at one of the most toxic sites in the world: the defunct Chernobyl nuclear reactor.

    The black fungus Cladosporium sphaerospermum was collected from the reactor walls by a robot touring the radioactive site, and it caught the attention of Arturo Casadevall of the Albert Einstein College of Medicine. Intrigued by the phenomenon, Casadevall, Ekaterina Dadachova, also of Einstein, and their colleagues exposed colonies of C. sphaerospermum and two other species of fungus to extravagantly high levels of radiation in the laboratory. Radiation, they discovered, increases the growth of species that have melanin, the dark pigment that also occurs in human skin. Furthermore, when the investigators irradiated melanin in isolation, they noted dramatic changes in its electronic properties. Melanin seems to capture energy from radiation and convert it to chemical energy, much the way chlorophyll in plants captures the energy of sunlight.

    If C. sphaerospermum and the numerous other fungi that make melanin are indeed able to 'radiosynthesize,' fundamental equations describing the Earth's energy balance might need to be recalculated. (PLoS ONE)" (Flores 2007)

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