Bats In The Belfry

I missed Dr. Lipkin’s dog and pony show a few days ago, but thank you to ME/CFS Forums for posting a transcript. Here again, it appears he has dismissed the only finding that actually adds to the discussion. It is just like last time when he dismissed the only positive finding in the XMRV study, that 6% of the people tested were positive for an antibody to a nasty mouse retrovirus, significance unknown. This time:

We found retroviruses in 85 percent of the samples. Again, it is very difficult at this point to know whether or not this is clinically significant, and given the previous experience with retroviruses in Chronic Fatigue I am going to be very clear in telling you, although I am reporting this at present in Prof. Montoya’s samples, neither he nor we have concluded that there is a relationship to disease. I’ll repeat that one more time. We found retroviral sequences, but their relationship, at this time, to Chronic Fatigue Syndrome is unclear and, in fact, if I were to place bets and speculate, I would say that they are not going to pan out.

In addition to this astonishingly unscientific statement, in the same week, he announced other recent findings. From the BBC News: “They found nearly 60 different types of viruses, most of which had never been seen before”, in one species of bat. He extrapolated this to suggest that there are 320,000 new viruses in mammals still to be discovered. However, he could find nothing at all in hundreds of sick humans. Presumably using the same techniques. Or is that the problem? Doesn’t it seem unlikely that there would be nothing to find in sick humans with low NK function and a propensity for opportunistic infections of all kinds? We are mammals after all. Here is the paper: A Strategy To Estimate Unknown Viral Diversity in Mammals. He wants to spend billions of dollars in an attempt to avert a pandemic, when he has several existing pandemics staring him in the face. I guess existing diseases aren’t as much fun as teaching Gwyneth Paltrow how to have a seizure. Then again, maybe we all really do need to be vaccinated for the next bat virus we might encounter.

But, he did give the nod that we are sick, not just crazy, so I guess that’s a good thing coming from such a high profile scientist. We have elevated levels of proinflammatory cytokines and chemokines. Completely nonspecific, all downstream effects, but abnormal numbers nevertheless, something measurable. In my experience however, the commercially available tests (Labcorp and ARUP via Quest) don’t show the abnormalities he describes (and which have been previously described by others), so we need more sensitive assays commercially. I’m not sure why the difficulty, but the clinical reality is that the doctors who are actually treating the patients have almost nothing to follow, except for a very few nonspecific inflammatory markers in some patients, e.g. hsCRP, C4a and TGF beta-1.

So that leaves us exactly nowhere, as usual. We are not going to be saved anytime soon by the medical model. Look how much the scientific method has accomplished for us in the last few years:-). As a doctor, I have a small bag of tricks to fight a terrible, incurable disease. However, it is an inherently unstable disease, relapsing and remitting all on its own. Look for a way to get a foot in the door. It is possible to tip the balance in favor of better health with global strategies that support the body, mind and spirit. Find synergy. Ali and I continue to be committed to the Wahls paleo diet. Less suffering for sure, after only a couple of months. Just like oxygen, methylation supplements, hormone balancing, we feel better from this intervention. Not expecting a cure, but we are both experiencing a bit more uphill movement, even though our diets were already pretty good. Please take a hard look at this diet, most likely beneficial for all neurodegenerative and inflammatory diseases.

Ali has all but moved out, her symptoms so manageable that she is mostly living with her boyfriend in Albuquerque, despite nearly new construction that once triggered her MCS so badly, she almost couldn’t be there. There was a time when I didn’t think she would ever be able to live away from me. Bittersweet…

She Blinded Me With Science (Live) by Thomas Dolby

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22 thoughts on “Bats In The Belfry

  1. Why did Lipkin talk about the symptom chronic fatigue? Does he not know what immune profile the people he is studying have? As Lipkin is no doubt aware, running tests for a retroviruses would not prove a relationship to disease. That would need multiple treatment trials with drugs targeting the pathology of the disease. Which he can’t know if he hasn’t recored the immune profile of the people he studied. Until something is published none of this has entered the published literature and the questions have not been asked.

  2. We really need to explain such an atypical result bearing in mind that numerous teams of scientists have found the pathogens targeted in this study at significantly elevated levels than controls. The CSF supplied by Peterson would not be expected to yield any reliable results as RNA from this medium needs to be extracted almost immediately following sampling and frozen to comply with the demands of NGS and library construction. The cytokines seem quite interesting but unfortunately they seem quite non specific and are found in people with illnesses classified( erroneously) as psychiatric as well as classical neurological illnesses. Its difficult to explain the the fact that the retroviruses are being found in the patients supplied by one Dr without coming to the conclusion that in reality the patients supplied by Dr Klimas and Bateman actually have a different illness to the ones supplied by Dr Montoya although they may share common symptoms. This is really the problem with using ancient forms of disease classification based on common symptoms and not modern forms of disease classification based on causation and or pathophysiology. I think we can now safely rule out the hypothesis that the results produced by Drs Ruscetti and Mikovits were the products of contamination. We will have to await full publication of this study in a peer reviewed Journal to see exactly what went wrong with the methods re the other target pathogens. If this study is not published in full in a timely fashion then it would be a complete outrage and patients would quite rightly draw their own conclusions about the sincerity of all involved

  3. It is also very unfortunate that Ian lipkin referred to patients in the study as sufferers of chronic fatigue.

    • Gerwyn,

      I listened and transcribed Lipkin’s talk and his use of ‘Chronic Fatigue’ was in abbreviated form. He spoke the words Chronic Fatigue Syndrome so many times – it’s small wonder he felt a need to abbreviate!

      • CFS is another name for the symptom chronic fatigue. What exactly was being studied here?

        It is not possible to test an association between retroviruses and the disease ME using the tools of debate. We need the tools of science used here and individual opinion is irrelevant no matter where the source of that opinion lies.

  4. Just a clarification via Tom Kindlon, the reason Dr. Lipkin does not think the retrovirus sequences found are significant is because they are also found in healthy people who have neither ME or CFS. – this was in response to a question submitted by WildDaisy.

    • Who is fatigue supporter Tom Kindlon to Ian Lipkin? Lipkin has not as of yet published any of these findings. His claims can be summarised thus.

      In this case the retroviruses were confined to 85% of patients supplied by Montoya. Obviously at a far higher level than controls, so that explanation is false. If it was background they would have been found in all patients and also in Klimas and Bateman’s patients. This is a very similar pattern to the fact that retroviral sequences could be detected in the blood of Bells patients but none in Levine’s. Now we have retroviral sequences in Montoyas patients but none supplied by Bateman or Klimas.

      • I don’t think he was looking for retroviruses in any other samples but Dr. Montoya’s. This was not just one study. He found the retroviruses in the study he did with Montoya in the Stanford study only. He said he did not plan to look for them in the CFI Study as I recall. This is the confusion. These were different studies and this CDC call made it sound like they were all one study and some could have overlapped. It was not clear which study was which in his presentation. That said why was it not reported what the retroviruses were that he found and in what numbers? And even if the retroviruses were also found in controls, if they by chance were infectious, could it be that not everyone would present with illness at the same time or the same illness if they are gammas. Or some may not get sick at all. He said at the multicenter XMRV conference that if there are retroviruses there he would find them. So what exactly did he find? He also said in the CDC call that it is unclear what this retrovirus discovery means. But given the previous history of retroviruses in Chronic Fatigue he speculates it won’t pan out? Why is that? Other papers have said recently that safety needs to be considered when using mlv retroviruses and xenografting in cancer research. So what is the difference with CFS and cancer research? And what if infectious gamma or other retroviruses have been running amuck in the population for decades? Just how many by now might have them?

        • It is obvious that Dr Mikovits and Dr Ruscetti’s research needs funding to get answers to these questions. Nothing Lipkin has said in this call has been published. Scientists cannot proceed based on hearsay.

        • I find it interesting that Lipkin first refers to them as retroviruses and then again as merely retroviral sequences. It is slightly nuanced, leaving the door open for the possibility of partial retroviruses that may not be replication-competent but which might be able to provoke disease, particularly neuroimmune, inflammatory-type disease. I also wonder if these retroviruses weren’t able to recombine with some other virus, like a common Herpes virus, to produce a replication competent virus with some retroviral features? 85% is not insignificant if these are not merely common endogenous retroviruses, which, while they themselves might be associated with disease, I would think Lipkin would’ve made the obvious distinction during the conference.

          • HIV-1 is a retroviral sequence. I really don’t see what your point is. As I have said, he hasn’t published anything at all. There is nothing any scientist can look at to review.

  5. 100% internal ionization radiation injuries already proven way back in 2007 by Dr. Henry Heng’s team at Wayne State University…Broken chromosones/translocation…Our symptoms are no different than Chernobyl victims with radiation injuries, it also expalins why the immune system is in such an over active state now!! We will find out more in time top Galway, Ireland team now working on the chromosone links and searching for a therapy and they firmly believe it is also radiation causing this damage…I can turn back the clock also on researchers I believe were also based in Ireland who found Stat-1 depletion in chronic fatigue syndrome patients, there are only a few things that can cause depletion like this and my understanding is the first 3 we would have died long ago but the 4th one is low level radiation injuries…I guess if all these brilliant researchers are right then this illness will now sky rocket with the latest disaster from Japan unfolding and of course down played…The food system is no doubt contaminted and has been this way since Chernobyl, 3 Mile Island etc etc including the dunpings of radioactive materials in oil drumbarrels dumped along coastal waters documented in 2006 by Green Peace, when they went to investigate said barrels they were all empty…Even Dr. David Bell, Peterson and others now working on possible radiation…Imagine the damages and civil lawsuits these Government cronie Cabals are going to have to pay out including General Electric Frankenstein and last the Nuclear Industry with W.H.O. N.I.H. C.D.C. F.D.A. U.N.

  6. Actually the explanation supplied by Tom Klindon and relayed by Kelly above is false. The retroviruses in question were only found in patients supplied by Montoya and in 85% of his patients. If we were talking about background levels then they would have been talking about all his patients and these retroviruses would have been found in patients supplied by Bateman,Klimas and Peterson as well and they were not. Lipkin knows about HERV expression in humans as endogenous retroviruses,LINEs and SINES make up about 8% of the human genome and this would have been an unremarkable finding. Endogenous gammaretroviruses( HERV-W,HERV-H and HERVFc are strongly implicated in the pathology of MS via the ability of the env sequence proteins to activate an immuno inflammatory cascade. This Lipkins reluctance to admitt at least a possible connection to the pathogenesis of ME when they are connected to the pathogenesis of other neuroimmune and autoimmune diseases remains something of a mystery.

  7. Its also worth making a comment re radiation which all the population is exposed to. The other point is that the multiple lines of evidence revealing biological abnormalities in patients with Myalgic encephalomyelitis/cfs are not remotely the same as those associated with radiation poisoning

  8. I thought Dr De Meirlier’s recent study said that we were expressing HERVs in the dendritic cells of our duodenums (?spellling!) unlike controls, with digestive issues. Dr Cheney says that this is because of the partial methylation block our body has put in place as a protective, adaptive respnse to the fact that we can’t detox due to the fact that there is BLOOD FLOW REVERSAL in our brains and in the liver.
    So maybe Dr Mikovit’s tests for XMRV were in fact rightly picking up these HERVs in M.E. patients, and not in controls who weren’t expressing them as they did not have a methylation block.
    Once we can get our pancreas up and running to produce Vasoactive Intestinal Peptide we can reverse the flow reversal, and begin to detox and then our body will be able to start to clear the intracellular pathogens.

    • Dr JDJ, are you still tracking your TGF-b1 and C4a markers? Even though they are generalized inflammatory markers as you suggest, yours seemed to be falling significantly. Neuroinflammation seems to be a huge part of this illness. The million dollar ? is, what is causing it? The above poster may be on to something, but knocking down the inflammatory process seems to be a big deal, and the Wahls paleo diet certainly can’t hurt. Low dose naltrexone may be a great salve here. Also, any updates on Dr. Snyderman?

  9. Hi Dr. Jamie,

    I am now free of cancer. It was detected, treated and cured, all during the last half of 2012. Lots of follow up PET and CT scans. Clean and tidy.

    For the last few months, I have been also recovering from ME/CFS/WHATEVER.

    I have no more clue about why it stopped than why it started.

    We are only human.

    I am old enough not to be too surprised someone still thinks they know the Truth about CFS, but cannot help ANYONE get rid of it. I am truly appreciative you and others are trying.

    I am no wiser from about sixteen years in bed. There were ignorant experts before I got CFS. They are not in short supply. Never were, never will be. Sigh.

    Help is.

    Thank you for trying. It is the best us mere humans can do.

    CFS is not always permanent.

    Last Friday, my wife had a 17 cm by 15 cm by 5 cm ovarian tumor removed. She had already been blood tested for Ovarian cancer, but the OB/GYN Oncology Surgeon did the procedure. He did biopsies on all near tissues and they are all negative. Just a big useless tumor. Medicine is not always dire and hopeless, but, some people are ;)

    Hugs to all those who still live with ME/CFS/WHATEVER.

    It leaves, sometimes.

    Enjoy the Holidays!


  10. I’m wondering what your experience has been with using brain neuroplasticity and the DNR/annie hopper Amygdala Retraining/Ashok Gupta for CFS/ME, chronic lyme, and related conditions. I’m in the progessive neuro chronic lyme/type category (15 years-fibro then optic neuritis/progressive neuro). It has not helped me thus far-though it feels really good to do the exercise and I perhaps I have not embraced it fully in my ability to stop the body scanning/focus on the disease and symptoms. I’ve been following the private group of DNR for about 6 months now. I have observed that people with MCS and electrical sensitivites are progressing VERY WELL on the program and getting their lives back. Since my illness began with increasing MCS type symptoms and the link with high ACE score ( see book Last Best Cure)-I have to believe there is something to this theory. I have seen some miracles in the group (see newsletter on DNR site-Lauren who was in a tilt recline wheelchair) and recently a gal who has been in wheelchair/motorized chair for 18 years no longer is (her diagnosis MCS followed by chronic lyme). It’s been so inspiring to see these women of all ages regain their lives. I do wonder if we are just chasing the symptoms of brain/limbic system that is not operating correctly. If we can heal the brain-maybe the immune system and body can follow suit. My 17 year old daughter is also chronically ill though she is resisting any treatment or dietary changes at the moment. I then wonder did I pass the disease onto her or maybe my way of dealing things invoking a hyper limbic system. Lots to ponder and lots to bring hope. My mother also suffers from chronic pain/illness and sisters to varying degrees. I seem to have gotten the worst of it thus far.

  11. I grew up with lots of turmoil and stress-I have a very high ACE score. My daughter has been raised in a very stable and loving home. But, I am a type A worrier type/likely as a result of my childhood. And of course there is the question as why 80% of these types of chronic illnesses are in women. Could our sensitivity makes us more susceptible?

  12. I came across your site since I just started mHBOT at home. Hoping to reverse the disease process neuro damage-numbness/neuropathy etc etc I know someone who has completely recovered with mHBOT after being extremely ill/extreme pain for 8 years/housebound 5 years with chronic neuro lyme -all previous treatments made her worse. She is running again and says she is back to 100% after 2 years of almost daily mHBOT. I’m a month into treatment-my ears have become very sensitive/sore-even though I thought I was ramping up/down slow. Taking a break. I’ve never had a history of ear infections or ear issues. I hope this is temporary but I”ve had problems off/on from the get go .Taking a break since I’m worried about damage. Maybe I’ll try just the concentrator with mask while I’m taking a break. Thank you for your great blog!

  13. Digestive enzymes can be most beneficial, with and between meals, as they digest pathogens as well as food, and with minimal die off reactions!
    The best I have found so far, is Formula 14 by Enzyme Solutions. RP

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