The Tip Of The Iceberg

We are driving from Dallas to Santa Fe today, so I have only an iPhone to write on. I started this as a comment to respond to In Vitro, but got carried away. It is off the cuff and there are unsubstantiated statements (and probably typos), so I anticipate critcism. Yes, this is loose. I am ever hopeful of a meaningful discussion between scientists, doctors and patients, so I tolerate all the ugliness in the comments. I have no interest in or time for moderating the comments on this blog. I wish the more annoying elements, nasty and repetitive, would cease and desist. Say it once or twice, not twelve or fifty times. It isn’t any smarter after repetition. And I don’t understand the need for disrespect and reactions verging on paranoia. There are lots of smart people reading. If we could engage that talent for the greater benefit, we might get somewhere. 

In the paper under discussion, the group from Sardinia seemed to think they were dealing with “virions” and that they could reliably measure viral load. I am on an iPhone so can’t cite chapter and verse. There are more clues in the references from that same paper. That work was done years ago already. Not replicated or retracted. No dismissal as contamination. Just nothing. I guess MS doesn’t rate all that much better than we do. The lack of curiosity on the part of a small community of scientists sitting on top of a powder keg is disturbing and difficult to explain. 

I do not, and will not read ERV’s blog, so please do not reference it. She wrote about me a long time ago in a way that made it clear that she is not only narrow minded, but completely lacking in compassion, as are many of the characters in this movie. No credibility as far as I am concerned. So if there is something you would like me to read, please give me the papers, not some graduate student’s interpretation. So far, I’ve seen nothing to suggest that I’m wrong about anything of substance. I keep waiting for somebody to make me think harder. Do you have something better than, it isn’t true, because it isn’t in the literature? Do you have a better theory? 

I was not implying that MSRV is the causative agent in our disease. I was making a case for the possibility of a similar endogenous retrovirus being involved. Or for one or more defective sequences to have been rescued by otherwise harmless simple animal retroviruses. Or, or…

As for gender disparities, the fact that more women are diagnosed with CFS and there are more males with ASD is not incompatible with their being related infectious diseases; the male brain may be susceptible earlier in life. Females are apparently more susceptible at puberty, post-partum and during perimenopause. All broad trends; male and female individuals can get sick at all ages. Vaccines implicated quite often (both live attenuated and killed), in both ASD and CFS, but not consistently, like everything that has been looked at. 

The work of Andrew Mason on a beta retrovirus associated with Primary Biliary Cirrhosis and an antimitochondrial antibody suggests overlap with our disease. A mitochondrial defect is implicated in the pathogenesis of Parkinson’s Disease and mtDNA mutations may be involved. One of the autoimmune markers that shows up commonly in ME/CFS is anticardiolipins; the inside of the mitochondrial membrane is rich in cardiolipins, a phospholipid common to mitochondria and bacterial membranes. If anyone would look at the epidemiology in a big way, I suspect a pattern of maternal inheritance will show. Lots of reasons to study our mitochondria. 

Looking for it is a mess, because it is a mess. It isn’t one thing. Lots of sequences recombining with lots of other sequences. Some replicative, some not. One group looks a bit different than another, but with notable similarities. Members of family groups can have symptom clusters that resemble each other but are distinct from symptoms of other family groups. I predict that it will not be as neat as the work on MSRV.

Virus, genetics, injury. We are the canaries. The tip of the iceberg.

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53 thoughts on “The Tip Of The Iceberg

  1. >Dear Jamie, it is impossible to have any meaningful discussion due to the topic being continually derailed by the deliberately nasty attacks from the usual nasty suspects and the repetitive droning of the mold cult imposing their unwanted beliefs despite being asked repeatedly to set up their own special blog.

    You cannot take a hands off approach when obnoxious and pathetic people use this blog to make themselves feel superior by attacking you for sharing your treatment experiences and attacking seriously ill patients who want to discuss it. Tolerating their sickening hateful behaviour is condoning it, you must stand up for the patients or you allow the bullies to win.

    There are plenty of bad science and ERV blogs where that kind of arrogant and disrespectful behaviour is welcomed. If this blog is for you to share what you know with interested patients then please make this a safe and uplifting place to be. I beg you Jamie, please decide who this blog is for and moderate, its your blog and if people can't respect that they should not be allowed to spew their hatred here.

  2. >Jamie, I love your blogs thoughtful, insightful and interesting. I like your train of thought on the retrovirus. I don't "think" much…..difficult with pain and all the other annoying stuff, but what I do know, and think is that your are definately headed in the right direction…(spelling, sorry). OK, I worked for a Dr., he is so smart and was doing research on Hep C very early on…Dr. Robert Gish. (as we know now, HCV was a retrovirus and had that non-A, non-B title) He used to practice in SF, which was when I worked for him, but now down in the San Diego area. Look up his name, I am sure you will find him. He also treated all kinds of liver disease, what triggered my thinking about him was your mention of PBC. When I say he is smart I underestimate. He is also driven. He might be interested if only the "possibility" of any kind of viral connection. Worth a try. Leslie

  3. >I don't know if Dr. Ian Lipkin's post answering those who want to stop the study going on re: XMRV, etc. was posted elsewhere, but here it is:,10986.0.html

    I think he's being quite principled in this situation and objective and scientific. I'm glad he's standing up to those who are criticizing the study, especially the editor of "Science," who retracted the original study.

    It seems quite fair, Dr. Lipkin, that is.

    I hope that since this is a new year coming, that all bloggers here can agree to disagree in a polite and diplomatic manner, that name-calling, repetition and insults will stop, that discussions are constructive. Also, that everyone remember that these discussions are about a debilitating illness with real people affected every day, people whose voices and existence matters, and who want to be healthy and productive — and happy.

    I, for one, hope some answers are found in 2012, or at the very least, that more knowledge is gained which can be used to help us.

  4. >Also, I often think of genetic or familial traits for CFS and other illness. However, my mother's side of the family has great longevity; she's going well over 90. Barely any cancer, no allergies, asthma, no chronic illness, healthy. My father's side of the family,lots of allergies, asthma, susceptible to colds, viruses, cancer, heart disease.
    Vast geographical distances between the families' origins.
    I would love to study this if I knew more about the histories.

  5. >I wonder, why are you so critical of Rituximab, yet are total into Epileptic Trees when it comes to retroviruses. I think you want the Rituximab research to fail. I think you lack compassion. I think your attacks on Rituximab are vicious.

    Ah, the fun of pulling a Jamie Deckhoff-Jones MD on Jamie Deckhoff-Jones.

    Maybe a bit of confirmation bias you have, hmmm? Hearing critical voices like ERV you not want, rather believe your friend you do? The path to a live in darkness you follow.

    And yes, 30+ negative XMRV studies with at least 100 scientists involved, who were either too stupid or political motivated to not find retroviruses. Because
    a) Retrovirologists are not interested in finding out stuff (especially with regards to retroviruses)
    b) Retrovirologists are vicious scum
    c) They would not want a to find a second retrovirus causing disease in humans, because it would mean more work and more fund than they can handle

    And only MIkovits is a true scientist.

    Yeah, right.

    And you like totally don't let your personal friendship stand in the way of finding out what is causing your disease. And no, you don't want to force us all to share your friendship, even if it means wanting to force us all to switch off critical thinking and drop science. Because being nice to Jamie DJ MD and her friend is more important than science and finding the cause(s) of ME/CFS.

  6. >I do not, and will not read ERV's blog, so please do not reference it.

    When you wrote about Tunnel-Vision in your last blog entry, did you take a good look in the mirror before?

  7. >Some bloggers pre-moderate all the comments on their blogs and are not criticized for doing so. One of the problems patients have is limited brain energy. Reading through repetitive or useless comments wastes that limited energy.
    Just one patient's thoughts.

  8. >Ever quick to posit the convenient dichotomy eh Tony Mach?

    If 100 scientists are employed to look for VP62 it doesn't make them disingenuous. Political motivations could be quite irrelevant from anyone but those who commissioned the study.

    Finding a second retrovirus is a lot more involved and costly than running a set of PCRs I imagine too.

    It's good to know that you can count, I'll refer you like everyone else will to the Crichton quote on consensus Science.

    Only Mikovits is a true scientist? No I'd wager there are many true Scientists. How many of which would be prepared to suffer the wrath of deigning to get involved with ME research.

    Perhaps now we're seeing the beginnings of the attack on Fluge/Mella's work, and as the year progresses, one or two might spare a thought to consider the political machine employed to take down Mikovits.

    ERV has all but libeled Mikovits and any implication of fraud is now highly dubious as Alberts demonstrated by delineating the BWG as the final straw that 'retracted' the paper. An act of pure politics, lest we go back over every paper with a mistake in history and tear it from its publication.

    Do you in some manner believe yourself to be taking the moral high ground? Or are you just indulging your anger and misrepresenting peoples' opinions on any forum or blog that hasn't had the good sense to ban you?

    People have been too critical of Scientists, probably me at some point as well. It's difficult to ask another human being to jeopardize their livelihood, especially those with families.

    I seem to recall JDJ herself apologizing to Peterson or did I imagine that? There's no memory for acts of human decency amidst the bile of the perpetually indignant.

    I shall bait my breath for the inevitable Tony Mach attack.

    – Your friendly neighborhood SJ

  9. >And why TF is it so difficult for you to do just one blog entry clearly stating XMRV testing at VIPdx was fucking waste of money and time?

    Just on blog entry. Clear language. No speculation. No Epileptic trees.

    You style yourself as the hero of calling out the BS and the politics in science, yet you completely fail to behave in any way that you expect in others. How brave of you, that you won't let yourself be silenced! So speak out! Or are you afraid to to talk about the VIPdx problems. Are you afraid that the WPI is going to sue you? You aren't afraid of the medical profession to sue you, so what's the hold up?

    And oh, one blog entry about the problems with the Lombardi et al 2009 Science paper. Clear language. No speculation. No Epileptic trees.

    Oh, right, you would need to drop you tunnel-vision and actually look into the science. This could potentially betray your friendship with Dr. Mikovits.

    Spare me the Canary BS, you mistake confirmation bias with compassionate care.

  10. >And go ahead and silence me. Please. So I know that you don't care the slittiest bit about criticism.

  11. >A New Year is approaching may I wish Patients, their caring relatives, physicians and researchers a very happy and fruitful New Year filled with happiness and prosperity, more understanding of others, less bickering and violent attitudes.

    Last year was a rollercoaster in the world of ME/CFS. Some were deprived of University affiliation, some were deprived of their job at a promising Institute, some weere given grants to promote research and we were the benefactors of a million dollars to set up a new ME/CFS center at Mount Sinai.
    We thank you Jamie for your help in that donations to the new ME/CFS Center,Suite 1a, 860 Fifth Avenue, New York NY 10065 have started to come in.
    Let the New Yeat bring cheer.
    Derek Enlander MD

  12. >@Anon 10:20PM, just fyi, HCV is not a retrovirus, it is an RNA virus in the Flaviviridae family.

  13. >Having now spent over 2 years with multiple labs looking for a different virus, and only two bothering to apply the scientific method and find PMRVs we are confronted with a single study that some would have us believe could be definitive and other think should be cancelled as they fail to understand what Mikovits and Ruscetti sequenced. Neither of those positions are correct from a scientific perspective. There should, as Dr Deckoff-Jones and Dr Snyderman have both said, be a desire to ask questions. Claiming to have looked for other MLVs is only misleading when using VP62/XMRV to set up an assay as it is not a PMRV, and when MLVs are mouse viruses, not MRVs.

    So the study is going ahead, but with several issues that are still unresolved. The first being that nobody should present this as definitive, nothing in science ever is. So here is a growing list of points that patients do want addressed and posted on the NIH website. It is not really Lipkins study, but the NIH's study and they are ultimately controlling what is taking place. It should be no trouble to answer these questions if the study is indeed robust.

    1) How will evidence for or against be measured objectively?

    2) What are the objective entry requirements? How will people without a neuro immune disease be excluded?

    3) Who will draw the blood?

    4) Will delayed processing be used?

    5) Who will extract DNA RNA?

    6) Will PBMCs be activated?

    7) How will the viability of PBMCs be measured?

    8) Why is the study being carried out using blood samples at all when all the evidence suggests that after the initial infection MRVs are found in secondary and tertiary lymphoid organs and not blood? After all a study using blood samples will never be definitive.

    9) Why not have all labs use the assays of the other labs so that methodologies can really be compared? And any errors in coding or such like be more apparant.

  14. >"Hearing critical voices like ERV you not want, rather believe your friend you do? The path to a live in darkness you follow."

    Tony what do you think ERVs actual criticism is? I can tell you it is not drawn from the scientific literature or the methodologies used in the positive papers. Perhaps it stems from her being a student and a lentivirologist. One point I have seen her try and pursued other of was that the diversity of XMRV was too small. Well putting aside the truth that they all found PMRVs in ME patients, are you aware that all known isolates of HTLV-1 have less sequence diversity than what XMRV was thought to have? Gamma retroviruses always have little sequence diversity because they prefer to propagate using mitosis. It is nothing new, delta and beta retroviruses also have little sequence diversity. It was never an argument for contamination.

  15. >" I am ever hopeful of a meaningful discussion between scientists, "

    Not going to happen.

    You have single-handedly alienated almost all retrovirologists (save saint Mikovits) and most research scientists with your history of attacks against them and your pushing of hypothesis with no credible evidence.

    "There are lots of smart people reading."

    And most of them conclude that this blog is full of wild speculation and over-interpretation of scientific data.

  16. >"So the study is going ahead, but with several issues that are still unresolved. The first being that nobody should present this as definitive, nothing in science ever is. "

    Ah yes, the old disclaimer that only positive studies need apply. Ie, if the study results are negative, it just means they used unvalidated assays or some such nonsense. Of course, it somehow hell freezes over and its positive, well then it is very definitive.

    Why is it that the people writing these statements don't understand third grade level science, yet continually pretend that they do?

  17. >The only studies that optimised their assays to the viruses were Lombardi and Lo. Those viruses were polytropic. The negative papers and assays have only ever optimised to a synthetic virus of XMRV, not PMRVs.

    Really if you don't get that by now you cannot have read much of the publish science.

    There is no such thing as definitive. It won't matter if the study is positive. All it indicates is again that money needs to be put toward researching this.

    This is called the scientific method and people are meant to learn something about it well before third grade.

    I have no need to repeat this now, it is common sense.

  18. >"Definitive Studies
    Although any study may satisfy someone’s curiosity about a particular issue, no study ever satisfies scientific interest in an issue. That is, despite the fact that one often hears the phrase used in one or another context, there is no such thing as a definitive study—a research project that completely answers a ques- tion. Because any particular phenomenon is extremely complex, someone will always ask, “But what if. . . ?” Such questions point out the need for addi- tional research. Proposing that a definitive study can exist produces premature closure of activity; as Yogi Berra is supposed to have said about a baseball game, “It ain’t over ’til it’s over.” It is, of course, difficult to argue with such logic. Within a scientific approach to research, it is not over until it is no longer possible to ask “What if?”

  19. >Thank you Dr Derek Enlander for your good wishes and its great to see you here. Your $1M ME/CFS Center is fantastic news and I know in you we have another champion fighting for our lives, thank you Dr Enlander.

    Dr Jamie I think its wonderful that someone of Dr Enlander's stature shows such respect for you. Thank you Jamie for sharing your honest thoughts and feelings with us this year, you are a great doctor and friend to all.

    Wishing us all a wonderful 2012!

  20. >"I have no need to repeat this now, it is common sense. "

    No, it is complete utter crap, no matter how many times you repeat it. And you know it is, which is why you and a few others are already downplaying the upcoming results from Lipkin et al, because you know that they are likely to bury the original Lombardi paper once and for all.

    Why do you do this? To protect the reputation of one scientist, because you think she is the only one in the world who really cares about the patients? Is that it? How does that make any sense whatsoever?

  21. >Dr Ruscetti is also taking part in the study as is Dr Lo. You cannot suggest they are incapable and both stand by the integrity of their data. I would be interested to hear which assay Lo is going to use in this study. If he uses the one that detected patients that will at least mean he is testing the hypothesis. If he uses the assay that found no patients positive, which was used in the blood study, then it won't be putting any hypothesis to the test.

    Science doesn't work the way you think it does. All sorts of errors appear when a study is badly designed. If a mix up with coding occurs it could take years to uncover it. HIV really is a great example as it did take 10 years to confirm the LAV and HTLV-III viruses were the same virus from the same patient.

    As the quote above explains if there are questions to ask it isn't over. Mikovits and Ruscetti have reproduce their results using multiple assays in multiple blinded studies. As have others who used those methods. Yes no one will publish them, but that is because journals are being told not to.

  22. >"Mikovits and Ruscetti have reproduce their results using multiple assays in multiple blinded studies. As have others who used those methods. Yes no one will publish them, but that is because journals are being told not to. "

    More complete utter crap. Mikovits and Ruscetti were unable to reproduce their results in the BWG study. And now you are already basically saying that if Lo finds positives then he used the "good" assay, but if he doesn't then that means he must have used the "bad" assay. Ridiculous.

  23. >Anon 7:36 you have either not read a thing or are deliberately lying.

    Mikvoits did not do the blood study, Lombardi did at ViPDx using different assays. You can read that in the paper. Ruscetti only did serology and culture, no PCR, and he found positives. The issue there is that the controls could not have been declared negative as no PBMCs had been pre-screened. So a positive was a positive.

    Several assays were used in Lo et al. The assay that found no patient positive was used in the blood study. Not the assay that found patients positive. Can you really not understand that?

  24. >All you trolls are gonna have to find a new hobby other than abusing patients once lipkins study is done.

  25. >Will you listen to any of these people?

    "A religious creed differs from a scientific theory in claiming to embody eternal and absolutely certain truth, whereas science is always tentative, expecting that modification in its present theories will sooner or later be found necessary, and aware that its method is one which is logically incapable of arriving at a complete and final demonstration."
    Bertrand Russell

    "An important scientific innovation rarely makes its way by gradually winning over and converting its opponents: What does happen is that the opponents gradually die out."
    Max Planck

    "In questions of science, the authority of a thousand is not worth the humble reasoning of a single individual."
    Galileo Galilei

    "Science today is locked into paradigms. Every avenue is blocked by beliefs that are wrong, and if you try to get anything published by a journal today, you will run against a paradigm and the editors will turn it down"
    Sir Fred Hoyle

    "The pressure for conformity is enormous. I have experienced it in editors rejection of submitted papers, based on venomous criticism of anonymous referees. The replacement of impartial reviewing by censorship will be the death of science."
    Julian Schwinger, physicist

    "Science is the search for truth – it is not a game in which one tries to beat his opponent, to do harm to others."
    Linus Pauling

  26. >What's next, they did the assays on Thursday instead of Tuesday? The humidity was too high that day? Just amazing how many excuses you people can come up with.

  27. >I am now convinced that anon @ 7:41 AM is an internet troll

    This is the same individual who thinks he knows everything about science and how research is done. At this point it seems as if JDJ's blog has only one very persistent troll.

    Best not to respond to his troll-like antics.

  28. >Error on my part re: MRSV (challenge of time ordering the Anons) MSRV is indeed exogenous:

    However as the Ryan paper states, the association with MS is 'putative'. Any involvement of MRSV in disease processes may be contingent on the presence of associated endogenous HERV-W. Ryan ( your reference) certainly places stress on the ERV aspect rather than upon MSRV.

    The Sardinian work doesn't imply more than opportunistic association for MSRV in MS sufferers and considerable caution needs to taken when looking at specimens from subjects which contain material from related HERV. The Sardinian study is interesting because of its ten year status, but replication is needed before anything conclusive could be considered.

    There is a useful review work:

    (quote)"In contrast, many of the chronic immunological and neurological conditions that have been linked to retroviral infection do not have strong epidemiological evidence for a simple contagious etiology. Instead, these diseases are proposed to have a multifactorial etiology requiring the interaction of a number of genetic and nongenetic causative factors, with infection representing just one environmental component"

    and an appropriate level of caution is suggested at:

  29. >@Anon

    "Mikvoits did not do the blood study, Lombardi did at ViPDx using different assays. You can read that in the paper".

    Not true.

    Mikovits was listed as a co-author, Lombardi was not. Mikovits's assistant in WPI's lab, Max Pfost, was listed as a co-author, Lombardi was not. Other people from WPI were listed in the acknowledgement section, Lombardi (or VipDx) was not. There is no reference to Lombardi or the VipDx lab doing any testing whatsoever in the paper.

    Also, according to the paper, WPI did use a nested PCR assay. The VipDx clinical lab does not offer PCR testing, while the WPI lab does do nested PCR.

    "Several assays were used in Lo et al. The assay that found no patient positive was used in the blood study."

    Again wrong, though it's great to see you have finally backtacked on something (earlier you argued that the assay was not working at all and now you at least admit it amplified the MLV's present in controls).

    But to get to the point, despite the fact that figure 1 indeed shows patient positives using another primer set than the one mentioned in the BWG study, the authors did also find patients positive using the BWG assay. The relevant quote from the Lo et al. paper:

    "All of the positive PCR products amplified from the patients’ blood samples using primer set GAGI-F/GAG-I-R and primer set NP116/NP117 were 413 and 380 bp in length, respectively."

    So yes, the GAGI-F/GAG-I-R (inner primer, outer was 419F/1154R which is also identical) was succesfully used on patient samples as well. So I guess it's now time to resort to the "the cycling temps must have been different despite being unable to provide you with a reference, because I can't admit that I am wrong" excuse.

  30. >It is true, Mikvoits didn't do the blood study. Lombardi did at ViPDx. Who's name is on the paper and what assays are used said to be used commercially do not tell you that, but it is true.

    Lo/Alter used nested RT-PCR. The first experiment used the Silverman outers and the Lombardi inners and the second experiment used the Lombardi outers and a home made set of inners to select for sequence variability. In the second experiment they dropped the annealing temperatures to 52C to increase sensitivity. They didn't in the first experiment and found nothing. In the first experiment they used high stringency conditions which could only detect VP-62 which does not exist in nature. They repeated the first experiment in the BWG and not the second.

    Devil is in the detail RRM/Mark

  31. >"I was not implying that MSRV is the causative agent in our disease. I was making a case for the possibility of a similar endogenous retrovirus being involved. Or for one or more defective sequences to have been rescued by otherwise harmless simple animal retroviruses. Or, or…"

    Are you thinking specifically of helper viruses?

  32. >"It is true, Mikvoits didn't do the blood study. Lombardi did at ViPDx. Who's name is on the paper and what assays are used said to be used commercially do not tell you that, but it is true."

    So someone deliberately submitted false information to the BWG? Is that what you are claiming? And Mikovits signed her name to it anyway?

  33. >@Anon 8:58 AM

    Lombardi did the blood study. In what way are you saying the information submitted was false?

  34. >I have a copy of the BWG study report and results sitting right in front of me. Lombardi's name does not appear on the list of participants. VIPDx does not appear in the list of labs involved. If Lombardi did the work instead of Mikovits, and if the work were done using different assays at VIPDx, instead of WPI, then information in the study report is inaccurate, is it not? Why would that be?

  35. >@Anon 8:58AM, what is the basis for your statement above? Were you involved in the study directly? Do you work at ViPDx where you claim the work was actually done?

  36. >"Lombardi's name does not appear on the list of participants. VIPDx does not appear in the list of labs involved. If Lombardi did the work instead of Mikovits, and if the work were done using different assays at VIPDx, instead of WPI, then information in the study report is inaccurate, is it not? "

    You would have to ask the blood working group about that. They do know though that Lombardi did the testing.

  37. >I appreciate In Vitro Infidelium's thoughtful comments. We need this sort of interaction with scientists to move forward.

    My concept is that the retrovirus is only a part of the disease pathogenesis. There has to be genetic and acquired susceptibility for the retrovirus to cause disease and this would be consistent with the comments as to how complicated the pathogenesis of CFS must be. I believe that the virus may work via production of dysfunctional T-lymphocytes and monocytes. The possible improvement that has been seen using rituximab to treat CFS argues for a role of abnormal B-cells.

    I have looked at the presence of clonal T-cells which were found by Peterson in all of his CFS patients who developed lymphoid malignancies. Almost half of my patients with various types of cancer are positive for clonal T-cells. I am positive and when my B-cell leukemia cells are increasing the clonal T-cells are also increasing. When my leukemia is responding to ARVs the clonal T-cells also decrease. Furthermore, I have monocytosis which increases and decreases in the same fashion as the clonal T-cells but the three different cell types increase and decrease at different rates. In the older literature, monocytosis has been associated with cancer and CFS. Monocytes are infected in HIV patients and possibly in HTLV-1 patients.

    It is a comfortable hypothesis that a retrovirus infects the different cell lines and increases their rate of proliferation. If we are dealing with a murine leukemia virus-related virus, that is what they are evolutionarily equipped to do. T-cells are able to make the cytokines that have been commonly found to be increased in CFS. Monocytes can also produce cytokines and chemokines and are the parent cell of dendritic cells and microglial cells. Activated microglial cells enter the CNS and are strategicly positioned to release cytokines/chemokines directly into vulnerable areas and even potentially release virus directly into the CNS. Besides the neurotoxicity of the cytokines/chemokines they are known to have paracrine activity that would stimulate a simultaneous cancer cell line, as is very possibly what is happening with my leukemia.

    So my question to the scientists is how do we move forward? In particular, how do we study the monocyte aspect which seems important. Another point of interest is how to we prove that the T-cell clones are caused by viral infection rather than some reactive process? How do we prove that there are clonal B-cells in CFS as the Quest and LabCorp assays are not very sensitive?

    Michael Snyderman, MD

  38. >"You would have to ask the blood working group about that. They do know though that Lombardi did the testing. "

    And I think you are completely full of it.

  39. >Dr. Snyderman,
    Thank you very much for what you are doing and your reports. I look forward to more. May I suggest you consider setting up your own blog? You could moderate the comments before posting and decide what is useful or not. Researchers and clinicians would more likely read it, hopefully participate, and be of benefit to the overall community. They probably don't spend all the time necessary to follow this blog and the hundreds of too often unhelpful comments.

    Maybe a well moderated blog relatively free of the damaging rancor would be an example of effective online communication for the benefit of the greater community.

  40. >Dr. Jamie, I have to stop reading your blog because I can't stand the hateful comments. I'm a patient (sick since 1979) who, up till now, has been hopeful to find insights and maybe answers here, but unless comments are pre-screened, I see no use in exposing myself to the cesspool this has turned into. I come away from here feeling worse than I did beforehand. You can't have the meaningful dialog you say you'd like to see here when trolls are so blatantly polluting the discussion.

  41. >For everyone's peace of mind and sanity, DO NOT read the repetitive messages and hostile ones. Just skip them.

    I don't read them. They don't add to the discussion and have all been said dozens, if not hundreds of times already. Also, as has been said, the venom and nastiness and stress exacerbates CFS symptoms.

    I appreciate Dr. Snyderman's statements here. I hope that researchers are looking into the issues he raises, and that anyone on the blog who is a scientist be helpful on this.

    Those who are spewing vitriol and constantly answering each other must be getting something out of this. For the sake of those of us with CFS, just don't do it. Have some principles and sympathy for us.

    Otherwise to others, as I'm doing, just skip these blog comments, and don't rise to the bait.

    It's a new year with possibilities. Let's focus on those.

  42. >@Dr Snyderman

    MLV viruses infect mature B cells which once activated become memory B cells homed in to lung, tonsils, gut, lymph etc. There will be some CD20/19 infected B cells but looking for them in blood is like playing russian roulette, better to look in the those compartments.

    MLVs can also infect T cells macrophages and microglia  but the primary mode of infection is CD20/CD19 B cells.

  43. >@Dr Snyderman

    If you are seeking options that don't require the viruses being found then the best option is probably SPECT scans.

    ""SPECT Imaging of the Brain: Comparison of Findings in Patients with Chronic Fatigue Syndrome, AIDS Dementia Complex, and Major Unipolar Depression,"
    Richard B. Schwartz, Anthony L. Komaroff, Basem M. Garada, Marcy Gleit, Teresa H. Doolittle, David W. Bates, Russell G. Vasily, B. Leonard Holman;
    American Journal of Roentgenology, Vol 162, 943-951, Copyright © 1994 by American Roentgen Ray Society.

    Summary: "This study shows that CFS (ME) shares some similarities on SPECT imaging with AIDS Dementia Complex acute changes in radionuclide uptake in the younger population may be caused by inflammatory processes at the cellular or micro vascular level …. the findings in CFS (ME) are consistent with the hypothesis that CFS (ME) … results from a viral infection of neurons, glia or vasculature …..viral infection can provoke neurological dysfunction by interfering with intra-cellular mechanisms or membrane transport systems …. or by cerebral hypo perfusion due to vasculitis".

  44. >im retrovirus positive.
    but all my bloods are normal at my doctors.
    but i feel very ill.
    can bloods be normal and still be sick from a retrovirus, dr jamie?


  45. >I wonder if the mystery virus in China is related. Links below, and if you look around you can occasionally find personal stories from ill people. The wealthy ones are trying to travel to Europe and the US for other medical care, saying that the Chinese government is denying it all and trying to downplay and cover up that a problem exists. With huge suffering, people near death or wishing for it. I read that some are trying to infect others on purpose through sexual acts too, because the more infected people, the harder for the government to deny it. I'm wondering if we have an earlier milder variant that originated in China.

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