We are biding our time, for these myths to unwind…

Mood music for this post: Messages by Xavier Rudd

So much contentiousness from people who are essentially on the same side! Let’s assume the worst case for the moment, that RRM is right. XMRV doesn’t pan out for the Blood Working Group or Lipkin. Where does that leave us? Where does that leave RRM, who has an affected loved one? Anyone arguing their points here is personally invested. So, hypothetically, XMRV is dead, a lab contaminant, and not as good at infecting live humans as it is at infecting human cells in tissue culture, so not a direct threat. Then what? Does it get put to bed again? That’s already happened a few times in the last 40 years. We still have millions of sick people for whom a retroviral etiology makes more sense than anything else. As a clinician, it is the best we’ve ever had as a model to develop an approach to treatment. Quite a lot is known about what similar viruses do in animals. Why don’t they spend the money to do the definitive deep sequencing we need rather than a couple of million dollars, and a bunch more time, to see whether a few scientists can do the same thing reproducibly? What if they don’t? While new babies are born with it and new people go down with it.
Andrew Mason’s excellent work is an important signpost. It suggests the likelihood of human infection with more than one family of retroviruses. If it’s true that retroviruses have been introduced through vaccines, then it would be expected to encompass more than murine retroviruses, as the cells used come from different phylogenetic orders. This is the frontier of future medicine. It changes the playing field. Or should. Once allowed into mainstream thought it will inform not only every facet of healthcare, but will illuminate genomics and evolutionary theory. 
With passage of time, it becomes increasingly apparent how naive I was when all this began with respect to the pace of science. Max Planck said, “Science progresses one funeral at a time.” I am coming to terms with the fact that the glacial pace of progress means it will probably be too late for me and many others. For now, the best I can do as a clinician is to keep my patients as comfortable as possible while they are under siege, until the cavalry finally appears over the hill. It’s been a long time coming. 
The model I’ve written about for the last year and a half, and outlined in the last post, is the most workable we’ve had for an explanation and approach to the neuroimmune illnesses, now rampant in some of our families. Many talented people have identified pieces of the puzzle over the years, measuring downstream effects of particular tributaries, each adding to the rushing river of illness. The fact that it isn’t one virus fits well with the clinical diversity, though I still maintain that, with respect to the chronic fatiguing illnesses, the various syndromes tend to converge over time into a rather clinically homogenous whole. Different paths to a similar place.
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65 thoughts on “We are biding our time, for these myths to unwind…

  1. >Another question: do you believe that the 0 case / 0 control result retrovirus studies that did not use CCC + biomarkers (the cohort in Lombardi et al.) were science doing its normal thing?

  2. >A comment on the Lights study and Herpes infections

    The Lights research appears to be interesting, but their immune profile matches what people with a herpes infection or chronic stress get. I do wonder why they don't tell everyone this. The WPI's profile matches MS. They could not be more further apart. They cannot be studying the same patients.

    Herpes viruses have been researched for years. They cannot cause the symptom profile or objective abnormalities reported by those with ME/cfs. What will reactivate a Herpes infection is a retrovirus, just like HIV.

    Take HHV-6 that cannot be responsible. The WPI's profile shows that for those with a HGRV and meeting the CCC, RANTES is unregulated. But with HHV-6 RANTES is down regulated. That is totally at odds with the data. HHV-6 also upregulates NK cytotoxicity. We know this is not what people with CCC have. It cannot be the underlying cause.

  3. >@Laurie

    Try and say why you think the science is not panning out. Use scientific data to support your beliefs.

    The science is panning out. Labs that follow proven methodology and work with the WPI are finding HGRVs. Xenotropic/polyropic hybrid variants, polytopic variants and modified polytropic variants. The number of labs is now way into double figures.

    There is not one piece of scientific evidence to suggest contamination.

    Coffin and others always make it clear that they are either only looking at PCR with their ideas (not science) and cannot account for the immune response. They also apply models that could never be applied to HTLV. The evidence only shows HGRVs exist in people with aggressive prostate cancer and CCC ME/cfs.

    We need to be brave my friends, very brave. We are all in this together.

    "I would beg the wise and learned fathers (of the church) to consider with all diligence the difference which exists between matters of mere opinion and matters of demonstration. … [I]t is not in the power of professors of the demonstrative sciences to alter their opinions at will, so as to be now of one way of thinking and now of another. … [D]emonstrated conclusions about things in nature of the heavens, do not admit of being altered with the same ease as opinions to what is permissible or not, under a contract, mortgage, or bill of exchange. "
    — Galileo Galilei

  4. >@ Samuel Wales

    Asking another patient if they meet the 'ICC' for 'ME' criteria is a nonsense.

    The trouble with this latest set of criteria is that they come with NO objective testing.

    Me saying 'I like' the criteria and 'Oooo! I fit them!' is no different that whooping about the CCC.

    And then crowing over those who might not – for equally silly reasons is equally pointless.

    Give me some damn tests that actually prove a distinct disease.

    Or else I will continue to 'meet' multiple criteria that prove absolutely nothing and more importantly lead to no actual treatments for my symptoms or for an underlying cause.

    Unless the ICC can prove that Myalgic Encephalomyelitis is a relevant and proper distinct disease applicable to some or few or many or most people already diagnosed within the umbrella of 'CFS/ME' then it gets 'us' nowhere.

    I would one day like to step off the merry-go-round of criteria and inappropriate labelling.

    Have you considered the possibility that YOU might not meet future tests for 'ME'?

  5. >Thank you Dr. Snyderman and Jamie for your comments. It is very appreciated.

    For anyone wondering if it's possible that a neuroimmune/cancer causing gammaretrovirus could be at play here just take a look at this histroy. My brother died in 1964 from leukemia. My father has Parkinson's, his wife has MS. My mother survived breast cancer. Another brother has graves disease. My sister and I have fibromyalgia. I tested positive for HGRV by sero and culture. There is no prior family history of any of these illnesses. I don't think it is a coincidence that all but one of my immediate family members are sick. I also don't think it's a coincidence that we all have either a neuroimmune illness or cancer? Who's family will be next? How many families could be affected.

  6. >@anonymous 1:43

    So sorry about your family, but what you report has nothing to do with the reality of science. A tragedy, of course, emotionally wretching, of course, but science. No.

  7. >@Anon 4:07 PM

    Taking that family and screening them for HGRVs using validated assays would be science. Leaving it and letting people die is not science.

  8. >@anon. August 21, 2011 4:33 SM

    I don't think the previous poster is suggesting that we do nothing. But I can only speak for myself.

    Science is not wasting time on things proven to be redundant.

    XMRV is contamination.

  9. >Well let's see 7 out of 8 people ill in one family with either cancer or a neuroimmune disease, and no previous family history what so ever. Maybe not science but some pretty good odds this is being caused by a gammaretrovirus. Especially when one has already tested positive by sero and culture. We'll know soon enough on the others.

  10. >There are so many anonymous posts that its difficult to direct a comment at someone because s(he) may not be the person you thought. Having said that, my heart and prayers go out to the anon with the brutal family history–one that is validated by science, indeed. To the anon who says that it has nothing to do with science…merely reread the most basic definition of what science is. What anon described is an observation in reality, which is an integral part of science. Don't belittle a valid family history that points to something that none of us comprehend fully.

  11. >@LB

    Science has not proven human gammaretroviruses to be redundant. No scientific information has been given to prove laboratory contamination, only beliefs. Those same researchers would do better if they bothered to test the hypothesis in Lombardi et al., then looking for excuses regarding how mouse contamination may occur. A lab can have contamination from anything at any time, but it requires proof. Without it, the findings stand.

  12. >Maybe. Maybe. And maybe.

    Maybe there's a primary ongoing viral insult in some cases. Maybe there are retroviruses of murky animal origin, strains, different species, with odd and curious and occasionally bad consequences in humans. Maybe virii are implicated but not causal in some. Other pathogens, toxic insults, epigeneics, toxic mold, etc etc.

    All are possibilities.

    Any instantaneous response that is extreme, is neurological. In such case a thorough read of everything by Ramachandran is useful:


    Sometimes the brain needs to be retrained. Jamie used to use EEG neurofeedback especially to help epileptics reduce seizures. If one could train oneself into a deeply relaxed state and learn to reach that almost instantly through neurofeedack…one might then expose oneself to the noxious item while being measured on EEG, see what goes kaflooey, and see if brain retraining can overcome it.

    A lot of work, but might be useful.

    Jill Neimark

  13. >wait to see maf 314 data, it will be presented by

    Dr. Cheney will show the results on the 22-25 september Ottawa conference (http://www.iacfsme.org/)

    Prof. Ruggiero 27 e 29 september at Padova http://www.siai2011.azuleon.org/

    data of just 3 weeks show cd4 jump in both aids patients and healthy people…this gcmaf preparation might solve both CFS and aids patients problems

    XMRV is so slode to aids as hiv is…this is why many goverments are worried, if you find the solution fror CFS and aids you will collapse US economy for sure

  14. >not to mention that gcmaf is already used by the most famous oncologists in europe…another market to collapse

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