Null Result

“Appeal to ignorance – the claim that whatever has not been proved false must be true, and vice versa (e.g., there is no compelling evidence that UFOs are not visiting the Earth; therefore UFOs exist – and there is intelligent life elsewhere in the Universe. Or: there may be seventy kazillion other worlds, but not one is known to have the moral advancement of the Earth, so we’re still central to the Universe.) This impatience with ambiguity can be criticized in the phrase: absence of evidence is not evidence of absence.” ~ Carl Sagan. The Demon-Haunted World: Chapter 12 – The Fine Art of Baloney Detection.

I am feeling subdued. Jason contacted me back channel after our conversation in the comments of the last blog. We said what we each perceived to be a reach across the divide, but it quickly became clear that the distance was too great. I am deeply saddened by this state of affairs. ‘Scientific community’ is an oxymoron. Everybody in their own labs doing their little absence of evidence experiments, knowing nothing of the disease in question. Argumentum ad ignorantium. A false dichotomy. I own that I am one half of the dichotomy, though unlike the other side, I don’t fail to consider alternatives. The obvious third alternative here is there has been insufficient investigation to reach a conclusion. Unfortunately, it’s the folks with the above ‘vice versa’ view that we need to do the work in order to have enough information to know what is true and what is false. Deductive reasoning leads to blinders and inductive reasoning can go to religion; I acknowledge that. All valid alternatives must be considered. Hume’s Problem of Induction puts the current conundrum in a larger philosophical context.

Taking heart in the belief that regardless of the tone or outcome of our interchange, progress has been made with Jason. He will never, ever forget this and it will inform his life, even if it’s not conscious. Now he gets to decide if he is willing to see and be responsible for his assumptions and motivations. He’s just found out that there are consequences for those, even the ones you aren’t paying attention to. Especially the ones you aren’t paying attention to. It’s only a seed right now and who knows what fruit it may bear. Somewhere, somehow. Even if the only person he feels sorry for is himself, that’s a start. I articulated the ground he was standing on and he didn’t want to see it. And when it got handed to him plainly and clearly it hurt. Rightfully so, because I held up a mirror.

I didn’t even see a possibility for mediation. No common ground at all. It felt like a microcosm of the entire situation. The emperor has no clothes, but he is sighing with relief, because nobody is going to know. They aren’t going to have to deal with us. XMRV is going away. 

The divide that I was unable to bridge was our hope for reaching the promised land anytime soon. I don’t see it coming in the near future, unless it is from ‘left field’. Chronix? Andrew Mason’s lab? We can hope there are some others quietly going about their work, waiting for the dust to settle. I thought I detected real interest in Ian Lipkin when I met him. Here are Kent Heckenlively’s always incisive observations: The Wakefield Rehabilitation in Age of Autism.

I feel like a lightening rod, a lot of anger going to ground through me. Making people squirm isn’t my first choice, but I guess it’s better than being ignored. I’d rather be a lover than a fighter, but it seems it isn’t to be. I am propelled by the ‘atta girl’s I get from people who have had no voice for a very long time. It seems more important than who is pissed off or hurt.

More mail from Dr. Peterson’s patients. The jist is, he is really sad, but can’t say anything because of Annette Whittemore. And Annette Whittemore has never been willing to clear it up publicly either. These people are holding themselves out as our best hope. A little transparency is in order. I repeat. I have never met Dr. Peterson. Everything I know about him and what happened at the WPI came from the people there. Not one person, a bunch of people, but all hearsay and I plan never to repeat any of it. I believe patients first and foremost, so I apologize to Dr. Peterson. I don’t understand the apparent fixation with HHV-6 though. It seems so much less plausible than a retroviral etiology. I do admire his persistence above all else. Anyone dealing with CFS for 27 years without going insane deserves huge gratitude and congratulation for unusual survival skills and fortitude.

Like everybody, I hope the CFI gets somewhere. I’ve had a hard time getting past the name though. Seems kind of like the tee-shirt. I wish the ‘Initiative’ was not coming from the CAA, given their track record. I can’t find much in what’s been made public to suggest that resources will be spent looking for novel pathogens. We need more than a better definition of the problems, not that that isn’t important. Whether you like the CAA or not, it has managed to completely divide the patient community. Two different forums and never the twain shall meet! Very sad. Even we, the marginalized, can’t come together because so many see the powers that be at the CAA to be in bed with our captors. So ugly.
Transmission questions have been the hardest to answer, since I placed myself in the position of trying to answer questions. At this point, the scientific community has essentially alleviated you of any responsibility for transmitting a retrovirus. If my hypothesis is correct, pretty much everybody has something by now. It would appear, without the benefit of real epidemiological studies, that bad things went out horizontally at certain points, suggesting a few viruses with higher pathogenicity, or ones that combined in bad ways with what was already there; but by now, it’s pretty much of a mish mosh. What this means practically speaking for PWC’s is, sexual contact with healthy people may be more dangerous for you than them. I don’t hear that prior sexual partners of brief duration get sick, even many years later. I’ve heard occasional reports of spouses getting sick fairly quickly, but it seems to be rare. HIV precautions seem good enough for us too. 
From an internet friend who is helping me to stay positive:

Emotions run high because there is a huge reservoir of feelings and thoughts that has had no outlet for years and years. So many have suffered silently, trying to be good so they could be believed, much less helped. It’s one thing to ask for help and another to become a supplicant and plead and beg. Unfortunately pleading and begging is what we’ve been reduced to. Seems like birthing a new paradigm is just like any other birth, difficult and messy, but oh, the results matter so much. We have the old paradigm fighting tooth and nail to stop an unstoppable process. Progress will be made in strange, uncomfortable ways, but move forward we will.

Today’s song: World on Fire

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90 thoughts on “Null Result

  1. >John Coffin peer reviewed Lombardi et al., which was a blinded paper. He saw the original data and slide, and all the other western blots. He has always known about AZA and Science did too. Science will therefore have edited the paper the way it is and accepted it. If they had thought AZA germane they would both have asked for that detail to be included. Coffin and Science didn't and so published.

    So what is the problem?

  2. >Science's peer review is 6 months long, so one assumes it to be rigorous, but is it really?

    Why is Science not being questioned about this?

    Surely such sloppy peer review should be getting more coverage than the requested retraction.

    Perhaps the same peer review rules operate in science that operated for the peer review of the PACE trial.

    The only difference is the PACE trials sloppy peer review process had the PACE trial touted as a success.

    Also Science requested that CFS be removed from the study title, WHY?

    I'ld be curious to hear what Annette thinks was behind the UK governments attempts at thwarting UK residents giving the WPI blood samples.

    I believe the gist of what was said was, "The UK government are changing the rules to stop us". If I remember correctly implications about "patients now having to register their names and addresses with the gov" which may have intimidated some UK patients.

    At I beleive, at the 1st Int XMRV conf,
    Judy said "if we could sequence the "????"……"…and Stoye cut her off saying
    "well we cant", then Judy replied
    "well I "??????"…..and Stoye muted the microphone so Judy couldn't be heard.

    Did anyone else notice that, and if they did, any idea why he seemed so desperate to silence Judy?

    just thinking out loud really.

  3. >Coffin and Science have known since they saw the original data that AZA was used, so they didn't require it was included in the published paper, or they would have asked for it to be included.

    Its not complicated, only an editorial decision.

    If they now want it added, they should add it. Why change their minds 2 1/2 years later anyway.

  4. >@ Anon on October 15, 2011 2:08 AM

    I wish you anons would use some usernames.

    It is not the case that the November CFSAC meeting will not be broadcast live, at all. It will be streamed as audio. A clarification of the arrangements for broadcasts and videocasts received from the CFSAC Team, on October 14, can be read here, on Co-Cure:

    "Clarifications from CFSAC Support Team re November meeting arrangements"

  5. >Kathy d said:

    "Also, on the CFSAC — what is it? Why don't we deluge them with calls for streaming or podcasting their conference. Can we start a phone and email campaign? Whom do we contact? Can we do it and send it out on emails and list-serves? I have friends and relatives who'd do it from different states.

    I'll help and get the word out, via friends and relatives."

    Kathy, before urging others to pile in on CFSAC with phone calls, wouldn't it be appropriate, first, to inform yourself about what CFSAC is and how it operates? You can do that here, you can also access agendas, minutes, meeting materials, Written Testimonies and videocasts of previous CFSAC eetings:

    "The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS)."

    There is a clarification from the CFSAC Team here on Co-Cure mailing list, issued on October 14. This will give you information about the arrangements for this November meeting and for live audio streaming and post meeting videocast.

    And there is more information here in the Federal Notice:

  6. >Do to the situation on the validity of the VIPdx tests. Also since VIPdx have not been forthcoming, and have actually been giving patients the runaround, regarding the reliability of their xmrv tests. Anyone that was tested at VIP dx should be ask for a full refund of their money.

  7. >Not very respectful to provide only audio of the meeting for a neurological disease.

    The CFSAC is toothless anyway until the HHS members are all touched by the disease.

    Retroviruses everywhere probably causing multiple diseases and they sit down to chat about the letters of the name.

  8. >I would really have liked to read Jason's thoughts of the type he was thinking of posting as a guest blogger.

  9. >As one of my comments appears to have been removed, I will repost just the links. The Federal Notice for the November CFSAC meeting can be read here:

    Information about what CFSAC is can be found here, also copies of agendas, minutes, presentations, Oral and Written Testimonies and videocasts of previous CFSAC meetings:

  10. >Hi Jamie,

    I'm sorry I was insulting in my last post. Just feeling grouchy and put out at what I see as illogical (ill logical?) attacks on other people, so launching an ill-judged attack of my own. Your medical credentials are very impressive. And I agree that having been on the front lines of this disease is the most important credential in terms of having any clue about it. And I agree that most "logical" doctors are horribly frustrating to deal with around this disease. I don't know what to say…..we're all in a bad place right now, with the unraveling of the WPI and our recent hopes. Wishing you well, as always, and grateful for your efforts on behalf of the patient community,

  11. >I just asked about the CFSAC here. I didn't do anything, but I asked about them at this post, hoping to find some information.

    No one called or emailed or did one thing. I asked the questions first.

    If the CFSAC sessions will be shown by streaming, that's fine with me. I don't think I need to follow up on that except to see/hear it.

  12. >I would like Jason to start his own blog. There really is no reason to post his little bombs on someone else's blog these days – Dr. Jamie is certainly under no obligation to host him if she doesn't care to. Then, if you want a big dose of Jason you can just go there and read it.

    Frankly, I am beyond tired of the old one-two that ME patients receive when trying to interact with the medical/scientific establishment 98% of the time. First, as you attempt to explain your situation and symptoms, etc., the wall comes down. You can see it happen as the doc's face closes. He (or she) may even do things like glance at a watch or at the door – pretty much anywhere but at you. Then comes the dismissal, either short or long form. This is often accompanied by disrespect, outright insults, condescension and/or anger. The old one-two feels like one fist to the head and the other to the gut.

    I tell people that I have "white coat PTSD" and they think I'm kidding. I'm not. Appointments with new medical doctors cause me days of anxiety that I have no way to quell. I've been around that block too many times. What else can I expect after 25 years of abuse? And it is abuse. It's an abuse of trust and just plain human kindness.

    So, when all the crowing nay-sayers descended on this blog like a flock of vultures I found I didn't have much patience for more of the same. It was a violation of a community that was finally feeling safe enough to come out and actually feel okay about speaking their truths as patients. Discussion and disagreement are one thing. All that crap about "move on, you idiots" went over the line. Did these people think they couldn't be seen for what they were? After a collective of a zillion patient-years of getting the same treatment nearly everywhere we've gone to try to get help?

    So, if you have a big, pressing need to air your announcements regarding the "death" of ME/CFS research, go start a blog. I'm sure you'll find your audience in no time and you can have your party somewhere else. We patients have seen enough of the business end of the doctor/researcher baseball bat for several lifetimes. We need a place to take care of our own, and Dr. Jamie bravely stepped in and provided one.

    I count on the lively discussions and differing points of view here to learn new things and think in broader terms. I don't need exposure to yet another gang of thugs trolling for sport at my expense emotionally and intellectually. Been there, done that.

  13. >One more thing: been there, done that and they can stuff, erm, keep, the t-shirt they tried to give me.

  14. >Jamie, although you have excellent credentials from way back one, I question your capacity as a newly minted CFS doctor, since some of your decisions re: yourself and your daughter were very poor. The years of apparently useless but toxic antibiotics, which as you noted screw up the gut flora (some of us are far more resilient than others, but if your daughter gets c. dificile, then she's not resilient in regards to antibiotics)…you were a good enough doctor to at an early point have said, This doesn't seem to be helping. My doctor says it will eventually help, but…

    You can say you were blinded by your own desperation and emotion, but the same might apply now. So you might question how great you'd be as a doctor at this point, as opposed to someone who's been doing it for decades…and having some striking successes and many other moderate successes, and of course, failures as well.

    Your capacity to do epidemiology seems questionable too since anybody listening to/reading about the patient population knows it is diverse, and that all chronic lyme patients are in no way CFS/ME patients with an unidentifiable retrovirus. That many get well on aggressive antibiotics is not a "so what"–just as some with tuberculosis, for instance, need intensive longer term regimes…this does not point to a retrovirus across the board.

    There are many other models than a retrovirus, but as another poster noted, you're not really interested. Let's assume it is a retrovirus and the model is HTLV. The message would be hope, not despair. There might be completely neutral strains, or strains that are not that damaging. There might be a strain or two that is worse. That strain though, might be kept in check by most. In some families, only one member is sick. Even in your own family, the men seem to be doing fairly well.

    The fact that so many can keep whatever they might have been exposed to in check…is a message of hope. The fact that so many can get somewhat or mostly better doing rather gentle treatments, or lifestyle changes, or perhaps drugs (Ampligen, Vistide?, valtrex…now GcMAF which is having some amazing early responses….) is a message of hope. There's lots of hope.

    Why you are so angry and despairing is beyond me. Unless, of course, perfectly understandably, you are still pretty sick. Even if you're better. Being sick can color the whole world.

    From my perspective, though, the scientific world turned itself inside out to try to follow up on this research, and is still doing so. They took it quite seriously. That is a message of hope.

  15. >Science and the peer reviewer, John Coffin, asked for the labels on the slide in Lombardi et al. to be changed. They did not ask for AZA to be included, but knew it was used.

  16. >"The fact that so many can get somewhat or mostly better doing rather gentle treatments, or lifestyle changes,"

    could you describe the "rather gentle treatments" and "lifestyle changes" that so many have managed to get "mostly" or "somewhat" better.

    When you say so many, how many roughly?

    Do you have any info on the length/severity of their disease before they "partially" or "completely" triumphed with their gentle treatments.

  17. >@Anon 1:40 p.m.

    Where are these "striking successes" that long-term CFS docs have had?

    It seems to me that all the long-term CFS docs have been and continue to be tinkering around, LOOKING for something more reliable than the occasional one-off "striking success."

    Including dear Dr. Enlander's recent vid about GcMaff, what's out there documenting "striking successes" is either anecdotal or nuts (e.g., Lightning Process).

    I'm personally very glad Dr. DJ has joined in tinkering. Her approach(es) to treatment make at least as much sense to me as anyone else's out there that I'm aware of.

    Please show me the "striking successes" these more experienced CFS specialists have produced and some non-anecdotal info that documents it…


  18. >I am upset about the letter criticizing Dr.D-J. She did not prescribe the antibiotics, a physician who was considered an expert (?for decades?) in chronic Lyme treatment did. Since Dr. D-J has campaigned against that practice.

    The writer has a fondness for CFS docs that have "practiced for decades." I don't share this as I have read about treatments that they use that seem strange and without any supporting clinical evidence. The bottom line for Dr.D-J is the welfare of the patient, the bottom line for the other CFS docs from what I have heard is the bottom line.

    This leads us to consider what exactly the writer says should give us hope:
    1. Ampligen. Despite years of patients paying to be in a so called research study, there is no clinical data published in a peer reviewed journal to support its benefit to CFS patients.
    2. GcMAF. Yamamoto is not a physician and is probably not a PhD. He appears to have been a research technician in Philadelphia who set up the FOR PROFIT "Socrates Institute" and invented the term "nagalase." His publications demonstrate ups and downs of "nagalase" in patients with HIV and cancer in response to treatment with GcMAF yet never, ever supply any actual clinical data to prove benefit. He is said to believe based on this poor data that he can cure HIV and cancer so I would doubt any claims that GcMAF can benefit CFS.
    3. Anti-DNA virus therapy. Again, there is no published data that cidofovir or valganciclovir benefits CFS. Drug companies have paid for doing studies and there is money to pursue this.

    Finally we get to the concept of a retrovirus being part of the cause of CFS and cancer. This is a new concept and has been met as we all know with a great deal of opposition. However, we hope to present solid data in the next several weeks that such a retrovirus does indeed exist and that treatment with ARVs can be helpful. Do we have all of the answers? Of course not and a lot of research needs to be done along these lines. This is where our hope will be not with the "been there done that" treatments that the writer is so fond of.

    Michael Snyderman, MD

  19. >Anonymous who wrote:
    "I question your capacity as a newly minted CFS doctor, since some of your decisions re: yourself and your daughter were very poor. The years of apparently useless but toxic antibiotics, which as you noted screw up the gut flora (some of us are far more resilient than others, but if your daughter gets c. dificile, then she's not resilient in regards to antibiotics)…you were a good enough doctor to at an early point have said, This doesn't seem to be helping. My doctor says it will eventually help, but…"

    PLEASE USE YOUR NAME OR A PSEUDONYM. But more importantly, tell us what worked for you that you are WELL and WORKING and LEADING A FULL LIFE and have no gut problems.

    Dr. D-J is not new to our illness. She is acquainted with several of the CFS doctors and the ILADS doctors, and she is respected.

    I note that you seem concerned with the use of antibiotics. We all are. But sometimes they work for some patients. It is also worth noting that some who have taken Zithromax have actually had gut problems disappear. I was one of those cases. I told this to Dr. Cheney at a Charlotte, NC support group and half the folks in the room were begging me to tell them more about it. (If you google this you can find studies where macrolides improved gut health – go figure) Cheney just acted like he didn't know what to say. I don't blame him, and I respect him. But Dr. D-J knows as much, maybe more in some areas, as Cheney.

    Reminds me of an old proverb, "Judge not that you be not judged, for with what measure you judge you shall be judged." One of these days we are going to have the answers. I just hope it is in my lifetime.

  20. >Thank you too Dr. Snyderman. You give me hope as I have tested positive for HGRV in the NIH study. My brother died from leukemia and the rest of my family have various illnesses or cancer. I am glad you are doing better. I wish my brother would have had a chance but nothing could be done for him as it was years ago. I am so sorry that you are dealing with these illnesses. I can't wait to hear about what it is you are working on.

  21. >@Anon 4:37 PM

    The crucial part of obtaining proof for a hypothesis is ensuring that it has an inherent testability. If a hypothesis is not testable, it is not a hypothesis, but speculation.

    The only hypothesis for ME is human gammaretroviruses.

    All 00 studies have been invalidated by their use of VP62, high stringency PCR conditions, and annealing temperatures only capable of detecting VP62 sequences. VP62 is proven to not be the viruses discovered in Lombardi et al. and confirmed in Lo et al.

  22. >I add my thanks to those who have already spoken. I thank Dr. Deckoff-Jones for telling us the honest truth and letting us know what is really happening in the area of treatment for M.E., and I thank Dr. Snyderman for giving this encouraging update on his treatment. I am grateful to both of you for the hope you are giving me.

    Patricia Carter

  23. >Re: my critique of Dr. DJ's years on antibiotics which by her own blog she cites as disabling her and has led to many rants against Lyme docs, my point is that if she can boast of her brilliant credentials and she's practiced that much medicine for that many years she should be a good enough clinician to realize when a treatment isn't working. Maybe the first three to six months you can hand over to another doctor but at some point your own medical knowledge should kick in. If you see no clinical improvement and are getting progressively sicker to the point of bedridden you as a doctor best SE responsibility for simply continuing the treatment. A medically naive person doesn't but an experienced Harvard/Stanford doc does. If she says well my emotions blinded me to my usual good medical sense, then one has to question whether her emotions would now as by this blog she is extremely emotional and angry.

    Re: antibiotics I was saying some do better at maintaining good gut flora than others. If you get c. Dificile or bad fungus then you're more vulnerable. I was also saying if longterm treatment for Lyme wirks for some the model would be more like tb than some retrovirus.

    Re: other treatments that work I was thinking of stories I've read by Peterson patients. And I personally know a GcMaf success story. Re: Ampligen some had full recovery then lost access and became bedridden again. This is so sad.

  24. >I forgot to add that Dr. dJ had two controls in her house, husband and son, who didnt do those years of oral and IV and remained in pretty good health. So if she thinks they all have the same thing you'd think a brilliant clinician would see the treatment she and her daughter were on for years was harmful. She bears some responsibility at some point, I think within 3-6 mos, especially if she's going to boast of her credentials and experience. If she could stop handing out 100% blame…

    Also, she states all chronic Lyme is due to a retrovirus. Well, she could make some serious clinical errors with a view like that.

  25. >Anon 7:59 AM,

    Are you a doctor in drag:-)? My husband was treated for "Lyme carditis" and harmed by antibiotics, twice, two different LLMD's. He stopped when he got C diff. He has IBS now that he did not have before he was treated. The antibiotics did not fix his heart. He declined an ablation and has gradually improved over 5 years with no treatment. My son has never been seriously ill, knock on wood, and has never been treated, though he had the most convincing Lyme tests (from Igenix) in the family.

    We were treated by the best Lyme doctors. Our prolonged foray into antibiotics was the only time I ever turned it over to another doctor. It didn't work out too well for us. Because it was my daughter and husband, I thought my judgement was clouded and I let it happen. I didn't know what else to do and was being told things with authority that turned out not to be true.


  26. >at Anonymous 7.59 etc

    What's wrong with being emotional or angry or both?
    Maybe if more doctors did allow themselves to be a bit more in touch with their emotions they could truly meet, empathise and support their patients.
    Personally I'm sick and tired (no pun intended) of hearing and dealing with medical robots, with their judgemental attitude, bigotry and disdain. You know, the kind that knows it all, the *my* evidence-based only and the rest is irrelevant. The ones that want us to believe research is all going well, so the patients should just calm down, keep quiet, go home and we will keep you posted on what we are up to. Yeah right!
    What is presented in this blog are ideas and hypothesis
    and I think we are perfectly able to think for ourselves and make up our own minds. And for the records I don't agree with 'everything' that is said here. Still I want to hear it.

    Good on you Dr D-J and Dr Snyderman! Keep writing.

  27. >Then again, in the circumstances it is quite possible Dr. Lipkin may not be able to do his work, since Dr. Mikovits has no laboratory and no job as a researcher, and there probably will follow quite a lot more of scientific, legal and moral discussions, e.g. in Science and Nature, and possibly also in court.

  28. >@Anon 7:59 AM

    You keep putting words in people's mouths. Dr Deckoff-Jones is way out of your league.

  29. >Part 1

    The End of the Beginning

    Confirmation of Human/Murine Retroviruses in ME/CFS

    Judy Mikovits did not work alone to discover human/murine gammaretroviruses in ME/CFS patients, and the accomplishments of those who collaborated with her or confirmed most of her findings lend credibility and integrity to her research. A few of these are listed below.

    Dr. Frank A. Ruscetti, known as the father of retroviruses (Wikipedia), was one of the team who first isolated HTLV in Robert Gallo’s lab.
    He also discovered the interleukin 2 cytokine.

    Dr. Sandra Ruscetti began her work at NCI on the pathogenesis of mouse retroviruses (gamma retroviruses) in 1975.

    She studied retroviruses that cause leukemia or neurological disease in rodents to obtain information on how molecular changes in normal cells can result in pathological consequences.

    Harvey J. Alter is an NIH virologist who is best known for his work that led to the discovery of the hepatitis C virus.

    He was awarded the Distinguished Service Medal and the 2000 Albert Lasker Award for Clinical Medical Research.

    Shyh-Ching Lo is the Director of the Tissue Safety Laboratory Program Division of Cellular and Gene Therapy Research at the FDA.

    Judy Mikovits worked for Frank Ruscetti at the National Cancer Institute in Maryland during the 1980s, completed a joint PhD in Biochemistry and Molecular Biology, and specialized in virus-caused cancers. For over 22 years at the National Cancer Institute, she investigated how viruses dysregulate the immune response to cause cancer.


    Mikovits became interested in the Whittemore-Peterson research institute when she attended the HHV-6 Virus Conference in 2006.

    At that conference, Dr. Dan Peterson reported that nine of his CFS patients had the rare cancer Non-Hodgkins Lymphoma (NHL). Even more striking, some of them had the specific type of lymphoma called Mantle Cell Lymphoma (MCL) that is even more rare.

    Dr. Mikovits went to the Whittemore-Peterson Institute to look more closely at these patients. She was joined by some of the most prominent researchers from the National Cancer Institute.

    Mikovits and collaborators used the latest technology for identifying viruses – microarrays — which search for bits of RNA and DNA unique to a pathogen. This particular microarray looked for evidence of all known mammalian viruses, and it held multiple aspects of every known mammalian virus.

    What they found was: (continued in Part 2)

  30. >Many thanks to Dr. Deckoff-Jones, Dr. Snyderman, Suzy Chapman, Paula Carnes and others for their rational, informative posts.

  31. >Part 3

    The End of the Beginning

    Lo/Alter found polytropic and modified polytropic sequences of murine retroviruses, also found earlier by Mikovitz, but at that time she thought her main finding was XMRV similar to VP62.

    Lo/Alter in their 2010 paper entitled “Detection of MLV-related Virus Gene Sequences in Blood of Patients with Chronic Fatigue Syndrome and Healthy Blood Donors” stated:

    "Although we find evidence of a broader group of MLV-related viruses, rather than just XMRV, in patients with CFS and healthy blood donors, our results clearly support the central argument by Lombardi et al. that MLV-related viruses are associated with CFS and are present in some blood donors."

  32. >Part 2

    The End of the Beginning

    What they found was:

    “The average chronic fatigue syndrome patient on the day they were tested had between 30-50 viruses; the average healthy control patient had 3 or 4 common cold viruses” — Dr. Daniel Peterson, 2008 Swedish Conference.

    This led to the research paper:

    Identification of Differentially Expressed Viruses in American CFS Patients Probed with a Custom Mammalian Virus Microarray.

    Judy Mikovits, V. Lombardi, Y. Huang, D. Peterson and F. Ruscetti.

    Cytokine Signature Matches Viruses Found in Patients

    Mikovitz and collaborators next looked for evidence that these patients’ immune systems had viral-induced immune dysfunction.

    They did the cytokine signature of these patients and it matched the viruses they had found.

    This led to the paper:

    Serum Cytokine and Chemokine Profiles of Individuals with ME/CFS Distinguish Unique Subgroups Among Patient Populations.

    Vincent Lombardi, D. Redelman, D. White, M. Fremont, K. DeMeirleir, D. Peterson, J. Mikovits

    Further research into viruses in patients with ME/CFS led to the discovery of murine (mouse) gamma retroviruses (originally thought to be mainly XMRV VP62) but eventually found to include MLV’s, PMRV’s, and other XMRV’s). This research led to the publication in Science in Oct. 2009 of the paper :

    Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome

    Vincent C. Lombardi, Francis W. Ruscetti, Jaydip Das Gupta, Max A. Pfost, Kathryn S. Hagen, Daniel L. Peterson, Sandra K. Ruscetti, Rachel K. Bagni, Cari Petrow-Sadowski, Bert Gold, Michael Dean, Robert H. Silverman and Judy A. Mikovits

    Contamination of XMRV VP62 and Retraction of Silverman’s Test Results in the Lombardi Paper

    The whole story behind the failures to detect XMRV in ME/CFS patients is only now unfolding.

    On Sept. 22, Science published a letter from Robert Silverman and Judy Mikovits, et al., in which they retracted Silverman’s part of the Oct. 2009 Science paper that first reported XMRV in ME/CFS patients.

    Dr. Silverman has discovered that his VP62 clone that he named XMRV was contaminated by plasmid. Note that VP62 does not exist in nature. Silverman cloned it in 2006.

    The Sept. 22 Partial Retraction letter (Supporting Material) in Science states:
    “It appears likely, therefore, that these XMRV sequences [Silverman’s] originated not from the patients but rather from the XMRV VP62 plasmid. We conclude the results in Figures 1 and S2 and Tables S1 of Lombardi et al. (1) were spurious due to contamination with XMRV plasmid.”

    Since the 16 researchers who failed to find XMRV in the blood of ME/CFS patients used Silverman’s VP62 to search for XMRV, it is not surprising that they failed to find it.

    Mikovits and collaborators used XMRV strains other than VP62 to search patients’ blood, and they also used other techniques besides PCR, such as culture and serology, to identify what was in patients’ blood. They found polytropic as well as xenotropic sequences.

    It should be noted that the immune response that they detected by serology could identify multiple human gamma retroviruses, but no endogenous human or mouse viruses.

    Until the sequencing of the complete genome of the viruses is done, however, we won't know what viruses they are.

  33. >Thank you Rain for the highly informative posts.

    As we now know Coffin along with Science requested the label change for publication and that they knew of the use of AZA, but didn't deem it to be germane either. Perhaps journal journalists (is there another name) can focus on the scientific facts and not political statements. Maybe they could try and cover the reverse transcriptase assay that is absent from Paprotka et al. (2011).

  34. >It would appear that Silverman’s identification of VP62 as the primary pathogen is what really F’ed everything up. Had that misidentification not taken place, ME/CFS research might be in a very different place right now. Or at least much further along.

  35. >Silverman sequenced the contaminant in his samples, but it is the actions of other retrovirologists who are now attempting to ignore the evidence that is the issue. Lombardi and Lo confirmed that people with ME are infected with HGRVs, not VP62/XMRV.

  36. >Hello anonymous who wrote this:
    "I was also saying if longterm treatment for Lyme wirks for some the model would be more like tb than some retrovirus."

    What is so confusing is that antibiotics do work for some. Lots of people get over Lyme disease. I am an example of partial recovery on antibiotics. But still sick with something.

    If you study AIDS you will learn that many AIDS patients will improve temporarily on antibiotics. This is because they have secondary bacterial infections, one in particular is mycoplasma, which I have reactivated from time to time. I know one man who had mycoplasma and Gulf War Illness. He had a bone biopsy and found it in bone marrow. The problem is that the retrovirus alters immune system function allowing various infections, bacterial, parasite and viral to reactivate.

    So antibiotics aren't a bad thing, unless you give dangerous antibiotics without careful monitoring or keep giving them allowing them to destroy gut bacteria balance. BUT THEY WILL NOT CURE A RETROVIRUS. We have to keep the research going on this.

  37. >Rain, all I can say is "WOW!" Thanks for taking time to write this summary of evidence. I would like to post it to some email lists. Okay?

  38. >What I'm wondering is just WHY people think that the retroviral and 'other pathogen" theories have to be mutually exclusive.

    In HIV cases (granted a different RV with different properties) HIV+ one or more of a bazillion pathogens (frequently the same ones that ME patients tend to have in spades) = AIDS

    Cats infected with FeLV, another gamma retro virus, tend to be loaded with co-infections.

    WHY would something like an enterovirus, which is usually a hit and run virus hit and STAY?

    I'm hoping that more researchers start looking at the FeLv and GALV models. They're also a bitch to detect in blood.

  39. >I think it's fine to be angry and emotional when one has had a very frustrating and disabling disease for many years — and the government has not broken any sweat nor spent any real funds on finding out causes and treatments, and one has to go up against doctors, researchers, other health care providers and professionals, insurance companies, government agencies, even the media, to show that this is a real disease, with a multitude of terrible symptoms and it is disabling. It does "steal one's life."

    And on top of all that, to have a child with the disease and have to advocate for that individual and see the suffering.

    So not to be angry and emotional at times would mean that one is a robot, void of normal human feelings.

    This is a criticism which is often leveled at women, and it's sexist.

    However, the feelings are justified, even if I just wrote the worst run-on sentence to explain this.

    Are Alter and Lo still looking for the MLV, a retrovirus?

    I assume Lipkin is doing that with his grant.

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