Now You See It, Now You Don’t

The Lipkin study buries XMRV once and for all, completely leaving aside the question of an infectious chimera out and about that contaminates a clean lab in a matter of days and is capable of infecting monkeys. But it wasn’t in the blood of the patients or controls in this study. That much is clear, forgetting the unscientific claim that this study, or any study, is definitive of anything. Science is self-correcting, as Dr. Lipkin reminded us, but only if the game isn’t rigged. This is a repeat performance of the definitive study that showed that the MMR doesn’t cause autism, which also side-stepped the bigger question. The use of the word definitive tells us we are dealing with politics, not science. Sleight of hand.

The paper didn’t even try to speculate as to the one positive finding, that 6% of the study group, patients and controls, cross reacted with a test designed to detect SFFV, a nasty murine retrovirus. Whatever it is they are picking up with this serology test, “modified slightly” from the one once used at the WPI, the various PCR’s used in this study, optimized to detect XMRV and a piece of a “generic” pMLV, couldn’t detect it. But that doesn’t mean it isn’t there.

A young friend emailed after watching the press conference asking that I blog because my blogs are hopeful. I’m not sure how to spin this as hopeful other than XMRV got us into national news as having a real disease. It’s good that there are people studying us, even if they are abandoning the hypothesis of best fit. So, as my friend asked, do we still have retroviruses? The answer is everybody has retroviruses. 8% of the human genome consists of retroviral sequences. It is becoming accepted that these sequences are capable of causing trouble in some people, whether they produce fully replicative virus or not. SFFV is a replication-defective virus that causes disease in mice: The spleen focus-forming virus (SFFV) envelope gene, when introduced into mice in the absence of other SFFV genes, induces acute erythroleukemia. S Ruscetti

The Lipkin study in no way disproves the hypothesis that simple animal retroviruses, alpha, beta and gamma, parenterally introduced, in the form of vaccines and from other sources, e.g. hybridomas, xenografts, etc., have recombined and rescued defective endogenous retroviruses, and/or created new and as yet unrecognized exogenous retroviruses. The existence of XMRV, is supportive of this theory. There have been so many chances for it to happen, in addition to the possibility that it happened naturally. This means that we each may have something a little different. Which is why they can’t find “it”.

Personally, as a defender of Dr. Mikovits during this entire mess, I appreciated Dr. Lipkin for openly defending her struggle against the Whittemores. The scientist who put the nail in XMRV’s coffin. Dr.’s Mikovits, Ruscetti and Alter completed the difficult task of acknowledging they’d been mistaken. Our disease has finally been deemed “serious and life threatening” to enable fast tracking of drugs, should there be any drugs worth fast tracking, which seems unlikely if nobody is studying the root cause of the disease, only looking at downstream effects.

I’m not even going to question the study design, patient selection, specimen handling, that the patients chose their own controls, etc. I accept at face value that Dr. Lipkin put together a convincing study in order to put the final nail in the coffin about XMRV. No surprise there. I assumed the study would be negative. But I expected the authors to have the intellectual integrity to state that ruling out XMRV does not rule out retroviruses. Instead they allowed the press to distort in predictable ways. I therefore must conclude that Dr. Lipkin plays for the home team. His task was to kill it and reassimilate the renegade scientists into the group. To make sure that nobody does any clinical trials of arv’s, the paper suggests that the patient community has been saved from that terrible fate by this definitive paper. Mikovits’ name right there with Coffin’s. Task accomplished. But even Coffin said that it might be another retrovirus. Smart people allowing distortion and partial truths. It looks to me like we’ve been thrown back on the trash heap. From the Wall Street Journal. Viruses not to blame for chronic fatigue syndrome after all. Thank you Mr. WSJ editor for that headline, suitable for a tabloid.

Why do I still believe retroviruses are involved in causation in the face of so much evidence against XMRV? Even though we don’t have XMRV or active replicating virus with some certain degree of sequence homology to a piece of a “generic” pMLV, retroviral causation has not been ruled out. It is still the best explanation for all of the observed phenomena. It works as a clinical model to explain the symptoms and put treatments in context. It even explains the obvious but still unstudied epidemiology. Dr. Mikovits was trying to sequence what she believed were positive cultures that were negative for XMRV. She sent out letters to that effect to patients.

Then there is the response to antiretrovirals. Dr. Snyderman has presented amazing data, that most of the scientists involved in this story have seen and ignored. He has not been cured, but his leukemic cells and his cells capable of making cytokines have decreased with treatment. Cancer treated like a chronic disease, like diabetes or AIDS. I don’t think they are stupid, so they don’t want to know. Why not?

If the response of longstanding ME/CFS patients to limited arv’s (RTI’s and II’s alone) had been more robust, we wouldn’t even be having this discussion. It wasn’t. There were early responses that were encouraging, but with no way to follow, after a while, you’re left not knowing what is happening. Meaning we don’t know how to use the drugs, not that they have no value. Maybe they should be pulsed or given low dose for N chain termination. Maybe a protease inhibitor is necessary for full effect. Dr. Snyderman is documenting an ongoing response to Kaletra. The best case we heard about anecdotally was a teenager, hadn’t been sick long, responded fully and the drugs were stopped at 6 months, remaining well as far as I know. It is beyond sad that this case was not published. While new teenagers get sick with an “untreatable” disease, they are denied a trial of very safe existing drugs. It could have been studied for a lot less than the 2 million dollars spent to prove it isn’t XMRV.

I have tried to discontinue Viread on three occasions, since our drug co-pays are a problem, and I haven’t been able to do it. I get sicker within days and feel better quickly after restarting. Can I prove it? No of course not. The disease is a relapsing remitting illness all on it’s own. However, I didn’t have trouble stopping AZT or Isentress. I have been under enormous stress since June, with one thing after another, one of those times in life when the waves just keep coming, too close together for recovery. I am a little worse than I was, but only a little. I’ve even been able to ride the tandem a couple of times recently, only 5 miles on the flat, but no PEM after. Ali continues to do extremely well on Viread and Isentress. She has considered stopping arv’s, but has decided not to rock the boat at this time, since improvement seems to be continuing very, very slowly. The possible downside besides financial? I don’t know of any for Ali. I’ve aged a lot in the last couple of years, though it is on time, coming after a late menopause, so I can’t really blame Viread for that. I heard from a patient yesterday who did well on AZT, Viread and Isentress for a year, but then went back to baseline for another year with some new symptoms that could have been drug related, though hard to know. As I said, we don’t know how to use these drugs. We have no way to monitor. That doesn’t mean they have no value.

But Dr. Lipkin told Dr. Racaniello:

I know some in the community –the scientific community—feel that this was not money well spent, but the fact is, I think that we have obviated a lot of, you know, missteps that might have followed with clinical trials and such for antiretrovirals. And in addition, we have been able to establish a sample bank that will be helpful for years to come. And we’ve been able to hold, I think, the attention of the community.

So Dr. Snyderman, Ali and I are missteps…

From the 3rd paragraph of the paper:

Since the index publications, clinics have been established for the treatment of ME/CFS with antiretroviral drugs…

This is a complete fabrication. Where are these clinics?

It is completely incorrect, and unscientific, to conclude anything from the Lipkin study other than they didn’t find XMRV or a particular pMLV sequence. That’s a long way from no viruses or even no retroviruses in CFS. How is it that 2 million dollars was spent to tell us what we already knew a year ago? No reproducible assay. 2 million dollars and all that effort to prove what isn’t. For three years, we’ve been waiting for the scientific community to run with the ball. Now it is pretty clear, the ball has been dropped, while they huddle to congratulate each other on a job well done. The status quo is restored.

 

Today’s song: Who’ll Stop The Rain by Creedence Clearwater Revival

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77 thoughts on “Now You See It, Now You Don’t

  1. Thank you!

    What about the research that showed XMRV in people with CFS using “Next Generation Sequencing”? Why was that not also tested in this study? I haven’t heard any more about it lately but it evidently rules out “contamination” so seems relevant before ruling out XMRV etc..

    The attempt to develop drugs before knowing the cause seems like a way to benefit the drug companies’ profits rather than a benefit to the patients. We already have non toxic ways to treat symptoms but we need ways to cure which probably means knowing the cause.

    Once again it feels like as much an attempt to cover up the cause or causes as to find it. Once again the media helps with the deception.

  2. You said “Instead they allowed the press to distort in predictable ways”

    Lipkin and his team hasn’t allowed anything. it’s the press who distorts things in very predictable ways. in fact this started before the end of embargo. Lipkin has no control whatsoever on how journalists interprets the paper.

    The press has always insulted this disease,nothing new here.

  3. Thanks Jamie, I think you have managed to pull all my feeling together, but do it in a much more elegant fashion than I manage. I am glad Dr Lipkin showed support to Dr Mikovits, but I am more miffed at him for those statements, and for not recognising the cohort was a problem.

    The thing is although they didn’t find the complete sequence for one of the retroviruses, they did detect gags in the Lipkin study, which confirms what Dr Mikovits and Dr Ruscetti found before. At a minimum in 6 cultures. That can’t be ignored. Serology and PCR positives.

    “DNA was not available for IAP PCR for six gag-positive cultures. All gag-positive cDNA samples were negative for mouse IAP sequences.”
    http://mbio.asm.org/content/3/5/e00266-12.full

    • V99, Did it matter how the blood samples were handled? Also, how soon after they arrived where they studied? I understand (could be wrong) that the samples have now been frozen. Wouldn’t that mean that some pathogens would be undetectable in the future as the freezing causes them to disintegrate? (I am not a scientist, so may not be using the correct terms, but I hope my question is understandable, even if confused.)

      • Your question is spot on. Yes, sample preparation is important, including the tubes uses, time taken to freeze samples and preparation. It could well be that they have degraded the viruses in the blood if they have refrozen, so how can they rely on those samples now?

        They know so little about the sequences they are finding, but keep changing the variables of assays that had detected them.

        • V99 is not a scientist either. Really.
          Mikovits is happy with the study – why should V99′s opinion be more relevant?

          • “Trust science, not scientists” Racaniello.

            Science is very simple Stella. If you introduce confounding variables by altering aspects of a study, then you cannot compare like with like and fail to test a hypothesis. The literature on virology/retrovirology also covers everything I have mentioned above. What paper would you like me to post or should we just assume you agree with everything I have said? I think we can live with that for now until you post something substantial.

            The Lipkin study was PCR and serology positive for fatigued people. Why are you disagreeing with the information in the paper?

            I take it you are trying to tell patients that they are not really sick because a scientists hasn’t yet told them how they are sick?

            Science doesn’t work how you would like it to. Take the discovery of Pea Galaxy’s, which were discovered by — sorry you will be terrified when I say this — an internet forum.
            http://en.wikipedia.org/wiki/Pea_galaxy#History_of_discovery

            There are people who use science every day to go about their business, but you wish to create an edict so that nothing is questioned, rather like the Catholic church and their stance that the earth was flat. So I take it then that when you wake up in the morning you are still unsure if the earth is round or flat? Or if ME is real or imagined? How do you cope with electricity?

  4. Sorry one other thing, Lo and Alter deliberately did not use the set of primers that they used in the first study, which would have detected a wide range of genetically different MLVs. Not exactly helpful to keep changing the variables.

    • How could they recant their original findings without reproducing them? How could Lipkin support research claiming it reproduced their original work? Finally, for now, why was Dr. Lo not present? This may seem like a side issue, but someone needs to ask him about the six dead bodies he studied back in the late 80s – bodies killed by a mycoplasma incognitus infection on which Lo holds the patent as first discoverer. BTW it’s tough to find this mycoplasma in blood. It’s not so tough to find it in bone marrow. But Lipkin doesn’t want anyone to even get a lymph biopsy for PCR studies of possible infectious causes. I am not saying mycoplasma is causal in CFS, just that there are more questions than answers here. What else is new?

      • I am not certain they have recanted their findings, because CFS isn’t ME and the viruses they found in the Lombardi and Lipkin papers are gamma retroviruses, and not the single synthetic strain known as XMRV.

        The multi lab study definitely didn’t replicate the early work because the patients were different, selected by a newly crafted definition that drew from bits of two other criteria.

        The idea that no lymph nodes should be taken or autopsy done is also total unrealistic. The viruses like tissue, they are rarely found in blood. Some MLVs have never been found in blood. I take it that the CAA will now be shutting their fatigue biobank after that? lol

        As for Lo not being there, not sure why, but I can’t see that it would have made a difference.

      • Some interesting information to consider:

        On June 6th, 1991, Dr. Shyh-Ching Lo filed an application for a “Pathogenic Mycoplasma”. On September 7, 1993 Nucker and Preston (Examiners) accepted Dr. Lo’s claim, and assigned his invention Patent Number 5,242,820 and so bestowed upon him the right to ‘make, use or sell’ the pathogenic mycoplasma. What does a pathogenic mycoplasma have to do with CFS/ME and other neurodegenerative illnesses one might ask? Part of the answer is found on page 20 of his own document where Dr. Lo tells us something important about the patients who have mycoplasma infection:
        “Some of these patients who are infected with Mycoplasma fermentans incognius will be patients who have been diagnosed as having AIDS, Cchronic (sic) Fatigue Syndrome, Wegner’s Disease, Sarcoidosis, respiratory distress syndrome, Kikuchi’s disease, autoimmune diseases such as Collagen Vascular Disease and Lupus and chronic debilitating diseases such as Alzheimer’s disease.” (U.S. Patent #5,242,829 page 20; lines 47-54)

        Thus, Dr. Lo’s patent is linked to AIDS and ‘CFS’ (by his own admission) as well as several other of the neuro/systemic degenerative diseases so prevalent today.

        On page one of his Patent, Dr. Lo reveals an important fact:
        “The invention described herein was made in the course of work under a grant or award from the United States Department of the Army.”
        In this curt statement, Dr. Lo tells anyone who wants to know that the development of this disease-causing microorganism is an undertaking of the military. Is this to mean that the Pathogenic Mycoplasma is a biological warfare weapon? Dr. Lo’s own statement suggests that the Mycoplasma he patented is something that the United States Military had been working on for some time. Even more alarming, it has the ring of a microorganism referred to on June 9th 1969 when Dr. Donald MacArthur of the Pentagon told a group of Congressmen in a secret meeting:
        “Molecular biology is a field that is advancing very rapidly and eminent biologists believe that within a period of 5-10 years it would be possible to produce a synthetic biological agent, an agent which does not naturally exist and for which no natural immunity could have been acquired.”

        Authors of the book AIDS, The Crime Beyond Belief, Don and Bill Scott, present strong evidence that the seeds of AIDS and CFS were discovered, developed and deployed long before the June 9th, 1969 promise to the Congress by Dr. Donald MacArthur. It was only after the epidemics had been launched among humanity that the scientific community went to work to figure out how to control it.

        This leads to a subject matter beyond the scope of this post: the Special Virus Cancer Program (1962-1978) which evidence suggests is ground zero for the synthetic biological agent co-factors that cause AIDS and CFS (and many other diseases of microbial origin).

        Back to Dr. Lo~ Careful reading of Dr. Lo’s patent may lead to more questions than answers about what was actually invented that was unique and distinctly worthy of being patented. If one is seriously interested in understanding the pathogenic mycoplasma, one must not seek such understanding by studying Dr. Lo’s Application, but one must get back to the basics by considering the history of the mycoplasma that Dr. Lo left out.

        In our search for answers to the questions of microbes and illnesses one thing is certain…
        The truth will not be acknowledged as long as medicine is driven by pharmaceutical company dollars and not by Dr. William Osler’s ‘facts’:

        “The edifice of medicine reposes entirely upon facts…truth cannot be elicited but from those which have been well and completely observed.”
        ~ Sir William Osler, Counsels and Ideals (Quoted in Johnson, 1996)

        AIDS, CFS/ME and the mycoplasmal- related diseases that have destroyed millions of lives and stand to destroy millions more, can only be contained when the full story of their development and deployment is known and action based on knowledge of the truth is taken to advance the health of humanity.

        Dr. Marvin Antelmann, a medical school friend of Dr. Robert Gallo was granted a patent on a “cure” for AIDS (and CFS…) which is strangely unknown to most of us called Tetrasilver Tetroxide. I recently told a well known clinician/researcher if the field about this and her response was: “Do you know how much money they would make if there was a cure?” To which I responded, “Do you know how much money “they” wouldn’t make if there is a cure?”
        I guess we weren’t referring to the same “they”!

        • “According to Dr Shyh-Ching Lo, senior researcher at The Armed Forces Institute of Pathology and one of America’s top mycoplasma researchers, this disease agent causes many illnesses including AIDS, cancer, chronic fatigue syndrome, Crohn’s colitis, Type I diabetes, multiple sclerosis, Parkinson’s disease, Wegener’s disease and collagen-vascular diseases such as rheumatoid arthritis and Alzheimer’s.

          Dr Charles Engel, who is with the US National Institutes of Health, Bethesda, Maryland, stated the following at an NIH meeting on February 7, 2000: “I am now of the view that the probable cause of chronic fatigue syndrome and fibromyalgia is the mycoplasma…” I have all the official documents to prove that mycoplasma is the disease agent in chronic fatigue syndrome/fibromyalgia as well as in AIDS, multiple sclerosis and many other illnesses”

          http://www.whale.to/m/scott7.html

          My blood has been to Lo’s lab, along with countless other places (like the CDC twice), and my trip to Montagnier’s (facilitated by the United Nations). My life: http://www.cfsstraightttalk.blogspot.com

        • What Is The Truth about ME/CFS?
          “Osler’s Web” by Hillary Johnson
          “Project Day Lily” by Garth Nicholson
          “The Extremely Unfortunate Skull Valley Incident”
          The Brucellosis Triangle by Donald and William Scott

          • Top-notch list, Bev. Drs. Nicolsons’ work is exceptional.

            From what I can assess, there are only two objective subsets of CFS:

            - NON HIV AIDS (cited in medical journals since 1992) and
            - GULF WAR SYNDROME (First cases cited shortly after 1991)

            * ME is not a subset, because ME’ers do not have CFS. ME is a legitimate stand-alone disease, just like MS or malaria.

            All other CFS’ers are just a big hodge-podge with nothing in common. There are currently 29 seperate & distinct types of AIDS patients. There have to be 29 different types of CFS’ers in the hodge-podge.

            Some great documenaries:
            - “Beyond Treason” (2 min trailer, on bottom left): http://www.beyondtreason.com/,
            - House of Numbers: How the HIV/AIDS Story is being rewritten *award-winning* documentary, a 2.5 min trailer can be seen: http://www.houseofnumbers.com/site/ or to watch the whole 90 minutes: http://www.youtube.com/watch?v=BwgmzbnckII
            - “Positively False” (5 min movie trailer or rent the movie): http://positivelyfalsemovie.com/index.html
            - “Under our Skin” (2.5min movie trailer, on bottom left) http://underourskin.com/, and
            - “Collapse” (2.2min movie trailer): http://www.youtube.com/watch?v=1WJ0CjGOsG8

            Several more great books:
            - America’s Biggest Cover-up: 50 Things You Should Know About the CFS Epidemic-Ostrom,
            - Vaccine A-Matsumoto,
            - Vaccine Epidemic-Habakus,
            - Emerging Viruses: AIDS and Ebola: Nature Accident or Intentional?-Horowitz,
            - Lab257-Carroll
            - What If Everything You Thought You Knew about AIDS Was Wrong?-Maggiore,
            - Science Sold Out: Does HIV really cause AIDS?-Culshaw,
            - AIDS Opium Diamonds & Empire-Banks, – Betrayal of Trust: The Collapse of Global Public Health-Garrett

            I keep all the links on my blog too.

      • Rt ON Paula…..finally some truth spoken here, reg: the REAL reason, for this ” Dead-XMRV-Story”
        http://forums.phoenixrising.me/index.php?threads/you-arent-going-to-believe-this-mycoplasma-
        lo-xmrv.5827/
        GREAT !!! ….Dr. Al……& ” The Real Truth, behind this story”……& of course, “Genocide…to the People”
        ” I’m soooo ‘DONE” w/ the Lies, behind this Story” !!!
        (sickfor 26yrs+) & advid Researcher”
        Plus ” Speaking the TRUTH about this” What are “they”, goin do ” Kill ME ” Huh !!
        If I was not sooo sick, I would be Screaming, off the Rooftop, & Starting a ” Class Action Law Suit “

  5. One other thing.

    In Lo and Alters first paper they detected MLV env sequences, but in the Lipkin study they didn’t attempt to detect env sequences. In the original paper they also found 5 genetically distinct sequence clusters (5 different strains), none of which has ever been found in mice or humans before.

    Now we are meant to believe that 5 new strains are contamination, but this is really very strong evidence of gamma retroviruses. There is no source to explain these but in the people the samples came from. They are not even trying to come up with a source. Do they think we are really that stupid?

  6. Depends on where you look. Or in whom. ME/CFS? Perfect. No such thing in the real medical world. Just fudge the cohort. Or better still, make one up!
    Myalgic Encephalomyelitis means: my=muscle, algic=pain, encephalo=brain, myel=spinal cord, Itis=inflammation. CFS is chronic fatigue plus 4 rather vague, undefinable symptoms. Well sure this must be the same thing…. Shouldn’t take an MD or MPH degree to see the problem with this (without getting into case defs, WHO recognition or ICD codes).
    ME/CFS is an ideology, based on (very erroneous, distorted) beliefs and opinions, not facts or evidence. Problem with ideology is that the ME/CFSers have the made up “ME/CFS” stories and mold the “evidence” to fit their beliefs. But of course in the real world or applications, falls apart repeatedly and goes in circles. This is why there is NO progress or meaningful or applicable or “translatable” results.

  7. Thanks Jamie, Tabloid ‘science’ by the Stasi/Nazi world-rulers.

    Long before xmrv, Peterson found a nameless spuma-like retrovirus THRIVING IN MY SONS BLOODSTREAM.

    Due to permanent liver and other damages already present ARV’s were never an option.

  8. I would still like some sort of explaination of hoe the positive studies had such a high amount of patients positive and such a low amount of controls. What are the odds of that happening more than once?

  9. The “virus hunter,” our supposed ‘best hope,’ is compromised not only by politics, but by faulty intellect. He knows this but fails to sufficently address it.

    The Hermit will doubt whether behind every one of his caves there is not – must not be – another deeper cave-a more comprehensive, stranger, richer world on the other side of the surface, an abyss behind every “ground,” and under all possible “grounds.” – Nietzsche

  10. It is ironic that at roughly the same time that President Obama was endorsing the need for more biomedical research into ME/cfs, the very people he charged with doing that were concluding their well orchestrated “take-out” operation of XMRV (and hence any other retroviral research)……..and even more so, because it was probably to cover up one of their own messes.
    This murky business was concluded with the forced retraction of Dr. Silverman’s original XMRV P.C.paper on Wednesday.
    Q.E.D.

  11. Hi V99, you write, ‘The thing is although they didn’t find the complete sequence for one of the retroviruses, they did detect gags in the Lipkin study, which confirms what Dr Mikovits and Dr Ruscetti found before. At a minimum in 6 cultures. That can’t be ignored. Serology and PCR positives’.

    As someone who has no scientific understanding at all, would it be possible to explain the above in simple language for dunces like me? Very appreciated.

    • They used two types of test in the study. Serology and PCR. PCR was in this case used to find the genetic sequences of the viruses. This is the test most studies have used, but with varying modifications to a number of variables that can be manipulated to make a PCR test specific to a particular virus, or sequence of a virus. So for instance for detecting HIV there are hundreds of tests available for testing a person, for EBV there are others tests, and so on.

      PCR tests don’t look for the whole virus. They look for one section of a virus. In this case they were looking for gag gene sequences. Not the whole gag gene, but a part of it. Using what is called a primer (small sequence of genetic code) to target a stretch of the genetic code that they believe is infecting people. So if they find that section, it doesn’t mean the rest of the genetic code is XMRV, or any other virus that shares that section. The only way to find out is to sequence the entire virus, in each person. This gag gene section could be different in different people, or some people may have several viruses that share the same section of virus in the gag gene. It is likely to vary.

      The difficulty is that scientists are having trouble sequencing the rest of the viruses. Note I am saying viruses not a single virus, as gamma retroviruses infect in families. If it was XMRV it wouldn’t be so hard to find the rest of the virus, as a synthetic virus contaminating samples would be easy to detect. One possible explanation is that the other genes have far more genetic diversity than the gag gene. Too early to say.

      This is where they mention positive samples for Mikovits, Ruscetti and Hanson.

      ” DNA was not available for IAP PCR for six gag-positive cultures. All gag-positive cDNA samples were negative for mouse IAP sequences. ”

      IAP PCR is a mouse test, so ignore that, they were negative. The rest says they found at least 6 gag positive culture samples and some cDNA positives, using a slightly different PCR test.

      The only reason these are not put down as proven positives is because the coordinators of the study have said that they had to find the same result in two aliquots, which is a sample from a single patient split in two.

      Really this shouldn’t have been used to determine samples as positive or negative, because gamma retroviruses produce a low level infection. Not every sample can be expected to be positive. You would expect to only have a few copies knocking about in the blood. The samples were also contamination free.

  12. Let’s talk about the samples. The study included zero bedridden and housebound.

    They literally required every subject — all of them — to travel. (How many times did each person have to travel? Once? Tens of times?)

    I hope that everybody understands how that harms every sufferer, including people who have not gotten sick yet.

    ===

    In a nutshell, the subjects they deliberately excluded are the ones who have the facts that usefully inspire and test hypotheses.

    This article explains the principle:

    More you than you

    http://thekafkapandemic.blogspot.com/2012/01/more-you-than-you.html

    In my view, it is profoundly unscientific and insincere to tout those samples as any kind of way forward.

    ===

    My prediction is that until the study’s troubling questions are answered, its detractors will not dutifully slink away. They need to be answered with meaningful science.

    I am feeling curiously rushed to “move on” from plausible hypotheses (even other retroviruses!) by people who are curiously glacial about moving at all on the science of a pandemic.

    All hypotheses that fit the facts must be studied as if your life depends on it. Nothing else will do.

  13. Chapter 33 of Hillary Johnson’s: Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome (CFS) Epidemic is entitled “HIV-NEGATIVE AIDS.”

    Neenyah Ostrom’s book “America’s Biggest Cover-up: 50 More Things …CFS and Its Link To AIDS” cites as it’s #1 THING: “Some CFS Patients May Be Non-HIV AIDS Cases.”

    Will CFS Research ever make any progress unlike we acknowledge this fact? And that the fact that no retrovirus in history has ever been proven to cause harm.

    From what I can assess, there are only two objective subsets of CFS*:

    1) Gulf War Syndrome
    2) NON HIV AIDS/”idiopathic CD4 lympocytopenia” (ICL)

    All other sufferers seem to me to be a big hodge-podge of patients who nothing in common. I believe that if the entire paradigm spent its time researching these 2 objective subsets (GWS & ICL) the solution to entire paradigm would be unearthed.

    *I don’t include the Lake Tahoe outbreak because I don’t think there is much of it left isolated.

    • CFS is a label. You can’t have subsets to a label.

      There are plenty of Lake Tahoe people available, but I wouldn’t touch the cohort from the Lipkin study. There is no evidence it bears any relationship to neurological ME.

  14. I, too, have tried to stop Viread twice and both times, in a month, i deteriorate completely. It is downright dangerous now for me to stop the drug. When I restart, it eventually helps again.

    Viread, coupled with GcMAF is helping me greatly at this time.

    I know several who are doing well on GcMAF alone… so I wonder if, having taken some HIV drugs long ago, I have now made the remaining virus stronger in some way?

  15. Status quo restored? What status quo? Honest researchers trying to figure out a link between MLVs and CFS seems like an good status quo to be had. From Lipkin himself:

    “What do you say to the CFS community to stop them from thinking that scientists will turn their back on CFS when this study is complete?
    I have to agree with them that they’ve not received the attention that other groups have had. They’ve tried to take a page from people who work in autism, who looked at HIV/AIDS, breast cancer and so on, and the CFS community has not been as vocal and effective as they might be.

    What I say to them is this: the fact that we did this study means we did take you seriously. We didn’t do a shoddy piece of work. We’re ready to invest in the next phase of research. There are all these samples that will be available. There will be funding opportunities. It’s evidence, I think, of an unprecedented opportunity for people to do basic and applied research into the causes and ways in which one can prevent or mitigate the tragedy that is CFS. People with CFS should actually feel heartened that there’s more energy and effort going into this. It wouldn’t make any sense for us to dwell on something that doesn’t work.”

    Even from the paper:

    “We remain committed to investigating the pathogenesis of CFS/ME and to ensuring that the focus on this complex syndrome is maintained. Studies under way include the search for known and novel pathogens and biomarkers through deep sequencing and proteomics.”

    Is it really necessary to always strike such a negative tone in your blog comments? Is this not enough for you? Like I’ve always said in my past posts – your fear mongering does nothing to advance CFS research and patient advocacy groups. Maybe you should try (for once) a more positive approach. Maybe even engage the same “conspiracy-theory scientists” on the possibility of a viral cause for CFS. However, I’m confident you will ignore this suggestion. This comment probably won’t even see the light of day to your readers since you have a status quo to maintain as well.

    • Well to Jason I would say it is really hard to believe any happy talk. There are obvious flaws in the way this study was done that create suspicion about motives. The average ME patient has been let down by many institutions and this seems no different, in fact it seems worse due to the high profile nature. In our case we have been let down by a private and public school system, both of whom abandoned my daughter when she got sick as a teenager, and the entire medical establishment whose bad behavior has been taught to them by the neglect and prejudice from the CDC and NIH. In fact, my daughter and I traveled clear across the country to participate in a study at the NIH that never came to anything I ever heard about. So don’t tell me to believe the institutions are going to help us. I have too much contradictory personal experience.

    • We are glad that scientists continue to read our blogs. We thank
      them for this because communication of ideas is critical.

      I am hoping that this scientist has read my blog and looked at my
      data. I have a specific question for him: will the
      scientists look for other retroviruses, not named XMRV? Will they
      use all the technology that is available or have they written off
      that retroviruses could be important in the pathogenesis of our
      disease.

      Frankly, just saying that you now have samples is too nonspecific
      for me. I have heard that Dr.Lipkin has an awesome lab for viral
      identification. It would make us ecstatic to hear that he would
      put all of his resources into this. I do not hear any sort of
      commitment to do this. I am willing to supply samples from myself
      and from other physicians with cancer who also have the footprints
      of retroviral infection and fulfill the C.C. for CFS.

      Michael Snyderman, MD

      • I have looked at your data. I think the data is intriguing and merits more research.

        However, the only problem I have with this (and so will a huge number of scientist) is the experiment is basically n=1. This needs to be done on a much larger scale to conclude anything with confidence.

        Also, researchers will now start looking for any virus, not just retroviruses, that might be related to CFS. I know first hand that are deep sequencing experiments delving into this. I will not comment on which lab though – confidentiality is an issue here.

        • Jason, My daughter and I are an N of 2, in addition to Dr. Snyderman’s data. We have data showing normalization of sky high TGF beta-1 and C4a over a year, on antiretrovirals. It isn’t as clean or convincing as Dr. Snyderman’s data, because our disease is so poorly characterized, and there were other clinical variables, but it should be enough to suggest it is worth studying. Unless there is an agenda. I wrote to scientists, including Dr. Racaniello, when I started antiretrovirals, early 2010, long before there was a reason to doubt the Science paper. I was hoping to learn from them and my excitement was met with scorn. Outright scorn. So if I have an attitude, it was the treatment I received when I first contacted the scientific community, that set the tone.

        • For medical-legal reasons, I had to have a personal one man drug trial. As an Oncologist I can say that my leukemia is garden-variety common every-day cancer and very representative of cancer in general. I agree that further study needs to be done, which is exactly my point. I am offering my sample and that of other physician-patients with cancer and CFS. I am sure that our material will be positive for retrovirus. I can’t imagine why scientists would not be interested in this offer.

          Michael Snyderman, MD

          • Jason, when you say
            “the only problem I have with this (and so will a huge number of scientist) is the experiment is basically n=1.”
            are you saying no one can do a study because no one has done a study?

    • Hi Jason,

      Good to see you. I still hold out hope for us:). I wrote my reaction, shared by many in the community, judging from my mail. I would have reacted differently had anybody there said: it might be another retrovirus, and it needs to be studied, since the consequences of missing it further are so grave. Many papers conclude with a call for further research. Not this one. It was presented in a way that stifles future investigation. And if you guys really think it might be there, and are keeping it to yourselves, then all the worse. The culture of secrecy that you work under is part of the problem. Transparency is in order. People are suffering needlessly. As for fear mongering, many of us have little fear left. The worst already happened, although some of us have still healthy offspring that we think are worth preserving. We want the future protected.

      Jamie

      P.S. I only moderate for abuse, trolls and spam, not disagreement.

      • “Many papers conclude with a call for further research. Not this one.”

        Again from the paper that will “stifle” research:

        “We remain committed to investigating the pathogenesis of CFS/ME and to ensuring that the focus on this complex syndrome is maintained. Studies under way include the search for known and novel pathogens and biomarkers through deep sequencing and proteomics.”

        I guess we (as usual) will have to disagree. The paper disproves an XMRV/pMLV link to CFS and calls for more research. I just can’t understand why you can’t see it when they wrote it in the discussion.

        Sounds to me from the paper, and other research I hear through the grapevine, that research is NOT being stifled.

        With this, I’ll finish my comments.

        • To Jason:
          I am struck by the statement “With this, I’ll finish my comments.”

          What one finds depends on the quality of the sample one looks at. I am offering my blood and that of three other physician-patients with cancer and CFS. These are high quality samples. I am absolutely amazed that no scientist has offered to look at these.

          Inaction speaks louder than words.

          Michael Snyderman, MD

          • Thank you Dr Snyderman and Dr Deckoff-Jones. Keep offering, their actions do speak so loud.

            Lipkin even tried to tell us not to donate tissue or have autopsies performed. What kind of science is this?

        • The study was positive for serology and PCR. Obama should have immediately set up a budget of 100 million to start finding out what those retroviruses are doing to people.

    • Jason, you quoted Lipkin here:
      “and the CFS community has not been as vocal and effective as they might be.”
      Please remember that Lipkin looked freaked out when he insisted he does not want to study lymph node biopsies or cadavers of cfs patients. Does he want us to emolate ourselves in front of the NIH? We have tried sitting in wheelchairs in front of the NIH. We have sat for hours at CDC meetings. Well, some of us laid on the floor or benches in these meetings. Is anyone planning a study where they look for the pMLVs that Alter and Lo found? Couldn’t they have done that in this last $3 million dollar study just completed? Really, how much would that have cost?

    • An MLV is a mouse virus. CFS is a label.

      This should have been about looking for MRVs (AKA MLV-related retroviruses) in people with neurological ME/cfs, not fatigue as per the Lipkin study cohort. Which also allowed depressed people, those with anxiety and EBV activity to be included in the study. In not only the patients but controls. There was also no evidence that any of the patients had abnormalities.

      And it should not have been about XMRV, which is a single synthetic strain probably made in 2006, because Dr Mikovits and Dr Ruscetti never detected XMRV. That was all down to Silverman who still has some very nice patents for the XMRV virus with Abbott labs.

      It is scientific fact that no retrovirus, that was found in people in the Lipkin study using serology and PCR, can be ruled out as associated with a disease if the people in the study were not shown to have the disease. Keeping those samples does not give any promise that neurological ME/cfs is going to be studied every time those samples are taken out for testing. This is a major flaw and the paper shouldn’t have been published with it. And the samples should not be used as the be all and end all of CFS.

      The question that should now be asked is, how many people in the paper were PCR positive and why has that information been kept from patients and the wider public? Why hide it unless it shows an association?

    • When selecting patients for a study one must know that one is only including people with the disease under investigation. Selecting patients just because they have similar symptoms is both medically and scientifically illiterate.

      Ian Lipkin is quite correct to say that CFS is a label given to people with a constellation of different diseases. Selecting people on the basis of initial telephone interviews followed by a classification based on self reported symptoms is totally unscientific.

      The scientific method of investigation is based on the elimination of confounding variables. This study has introduced so many confounding variables that its impossible to know what produced the results. I am using the word know as it is used by scientists.

      The methods of sample collection and processing were different. The patients in the original science cohort had characteristic V02 max abnormalities and a wide range of biochemical and immunological abnormalities. These parameters were not even investigated in the “Lipkin” study, which from a scientific perspective is a grave error.

      Finally the assays had been modified and certain primer combinations were omitted and reagent compositions and concentrations were changed, and contact controls, banned in virtually all epidemiological studies, were allowed. It is a shame that scientists were not allowed to select these patients based on immunological abnormalities, which would be at least consistent with a retroviral infection.

      This study promised so much, but because of the confounding variables introduced, delivered so little.

      • Thank you, Marie!

        Allied NATO government created this problem, do people really {naively} think that they are trying to help fix it?

        It’s only once CFS & ME’ers WAKE-UP and STOP following government-funded “science” (an oxymoron) will CFS & ME ever make any real progress.

        Follow the research that mindfully does not get government funding (e.g., Duesberg, Heng, WJ Martin, Nicolson, plenty more listed on my blog.). That is where the answer(s) will be found!

  16. I am just starting down this path with my son who is ill. Could you please tell me where in Southern California can I find a Dr. who can help him. I am desperate and don’t know where to begin. He is getting worse.

    I am confused and so worried.

    DDooley

  17. HIV replicates quickly unlike gamma retroviruses, and therefore produces far more copies of itself within a host. But sequence variation is an ongoing issue for assay development.

    Still, HIV has never been found in an ME patient has it, so why suspect that retrovirus when all evidence points mainly to gamma’s?

    • V99, How did you conclude that Alter and Lo did not look for the same retrovirus as they had in their first study? I am not enough of a science person to understand that. I hope you can explain further. Thanks.

        • Thanks, V99. Do you have a quote from the research that says they altered their assay? I don’t want to be telling everyone this without the documented evidence. I think, if they altered their assay this is a HUGE issue, or should I say, ERROR? We need to be screaming about this.

          • From the paper

            “The FDA laboratory of Lo and colleagues performed nested RT-PCR and PCR assays as previously described, with some modifications (11).”

            They modified the test that worked to one that has never detected pMLV-related sequences.

            Also you should know that Lo et al. detected MLV-related sequences, not MLV sequences.

            • Thanks, V99. Yes, I new they found related retroviruses, not XMRV. That is precisely why I was so concerned that Alter sat there in passive agreement. We need heroes to speak up for reality. I am outraged.

  18. Just a note to share that at age 65, after fifteen years of CFS (whatever…) I have now begun treatment for “metastatic cancer” found by biopsy in a 3.5 cm ovoid disk in my neck, to the right of my Adam’ apple. A head to knees PET scan only showed that one area active cancer, so, the Onxmed and Onxrad will both be giving me treatments. I got a new “PowerPort” installed in my left chest yesterday to allow the chemo not to destroy my bloood circulation hardware. My new oral surgeon will be removing my remaining teeth on Wednesday to reduce risk of bone necrosis from the focused 3D radiation of my tongue base, which is the suspected primary site of the cancer, even though the surgical biopsy of that site was clean of cancer. It was identified by my EN&T as a possible site due to iregular density and discoloration. One, or possibly both (my son or his wife attend all doctor appointments with me – CFS has left my attention inconsistant, at best) the Oncologists concur with his suspicion. The teeth removal will delay the start of Onxmed and Onxrad for two to four weeks. I will have a feeding tube installed in the interim, to be scheduled. It will be required as I will be unable to swallow after about two weeks of treatments. I will be unable to chew after Wednesday ;) About three months after treatment is complete, I will be able to taste food again. After about six months, I may get dentures. I may not. My bride has lovely dentures. She wears them once a month to her doctor appointment. She has been disabled by fibromyalgia for twenty years. My CFS generated a flurry of medical activity for me for the first two years, until a SPECT scan showed inadeqaute blood profusion in my left frontal lobe, both temporal lobes and visual cortex. The upside of this current cancer circus is it has allowed my poor old carcass to sleep and awake somewhat rested, for the first time in fifteen years. Every silver lining has a cloud.

    Don’t let the bastards wear you down. My chest is post-op aching, but, my smile is real. Thirteen years on hold got old… so did I, Jamie ;) Everybody does. Sigh.

    Al Marcy

    • You might want to look into the Gerson method of treating cancer started by Max Gerson and carried on by his daughter.

      LDN low dose naltrexone might help you as well.

      All Blessings to you.

  19. Hi Al Marcy,

    I just wanted to wish you the best in your treatments. Hope things go well for you. Life can be so difficult, but you sound so upbeat. I am glad you can sleep and actually wake up feeling somewhat rested. Haven’t felt that in 20 years, but I remember it vaguely.

    Sincerely, Anne

  20. In Short Order — October 7th — 7-9 PM EST — Dr. Judy Mikovits

    Join us on October 7th for the whole true story about XMRV, Dr.
    Mikovits’ term at WPI, accusations of theft, misappropriations, data withholding, trade secrets, contracts, grants, contamination, termination, cover-ups, and lots more.

    This will be the very first time Dr. Mikovits has spoken in public about what really happened — and where things are now.

    If you have questions for Dr. Mikovits that you would like answered on the show, please send them to show host at peerobmagazine@aol.com and listen in for your question to be asked and answered.

    LEARN ABOUT THE 2013 PHYSICIAN’S ROUND TABLE AND MORE AT http://www.peerobservationsmagazine.com/

    In Short Order radio show for health care professionals at
    http://www.blogtalkradio.com/in-short-order
    Every Sunday, 7-9PM EST

    • Please note that this radio conference has been postponed to November 7th, same time of day and same radio station/website. My understanding is that Dr. Mikovits is sick and had to postpone. I hope she will be fine and talking by Nov. 7th!!!!!!

  21. Jamie, where are you? Lipkin has openly demoralized the community and boxed us into a corner. People have caved under the stress. Lipkin has once again used the threat that if we don’t be quiet, we will run off the researchers. They are setting up “official” specimens to bury the real patients for years to come.

    I know it is not your responsibility to speak out, but who do we have left? Even our researchers have been forced to go along or else. If we allow this to happen, this will be buried for another generation. Look at all the suffering in the ME and Autism communities. How do they sleep at night? A genocide hidden in plain sight.

      • I still have CFS, but, now cancer has stepped up to my fore. Lots of doctors providing lots of treatments. Some may work. Wait and see… sound familiar?
        Humanity is not all pretty days and happy picnics, but there really are some ;)

          • Alan is contributing to the small, but growing group of anecdotal reports of CFS patients improving while under chemo / radiation. I have read 5 or 6 first hand, unsolicited accounts of this from members of various chat groups over the years.

            • I have not yet started chemo and radiation therapy. The stress of the pre-treatment procedures seems to have improved my sleep. Today they slowed me how to use my new feeding tube, and used the PowerPort for the first time for making my Radonx face mask to align my body to the radiation treatment. Cancer may change CFS, but, I do not recommend it… sigh. The sleep change may simply be hysteria…

  22. Although they are not related to the Lipkin study, if the question is what things we can do, I have specific and general ideas on my blog. I am seeking encouragement of one another and active participation. Most recent 2 posts.

    Although I didn’t mention it, I believe that the solution to being told that we are too loud is to get louder. Demand massive, immediate, motivated research into all root causes that fit all of the facts. Nothing less will do. Never let up ever.

    Ian Lipkin himself said we should get active. Let’s take him up on that.

  23. I sooo agree w/many of the comments……Samuel, A Yea !! reg: what u said.
    We have to make Our Stand, to the “Real Truth” & say “We are Not going to take the lies & genocide, Any More ” !! (as I have said here before, I am on around 26+yrs being sick,now~bedbound, Not much to loose here.)
    ” BUT, I will NEVER give up, For the Truth,Shall set ‘US’ Free”
    ( And anytime “WE” are ready, to file a “Class Action Law Suit” :)

  24. Is Autism Related to CFS?

    Jacob Teitelbaum, MD: “Many specialists who work with autism as well as CFS and fibromyalgia – myself included – find that there is a major overlap between the three conditions. I suspect all three have related underlying processes and, given a specific genetic makeup, the very same processes that trigger CFS and fibromyalgia in adults can trigger autism in children.”

    http://www.psychologytoday.com/blog/complementary-medicine/201106/is-autism-related-cfs-and-fibromyalgia
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Richard A. Van Konynenburg, Ph.D.: “For the past ten years I have been studying chronic fatigue syndrome as an independent researcher. Over the course of several years I developed a hypothesis for the pathogenesis of this disorder that prominently featured the depletion of glutathione…. I became very interested in possible parallels between chronic fatigue syndrome and autism. … As a result I became convinced that the genetic predisposition found in autism must be the same or similar to that in a major subset of chronic fatigue syndrome, and that the resulting biochemical abnormalities were also the same or similar.”

    http://www.nutritional-healing.com.au/content/articles-content.php?heading=Autism%20treatments%20show%20promise%20in%20Chronic%20Fatigue%20Syndrome

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    I’ve noticed a lot of overlap in Rx’s used for Autism, now in CFS patients (e.g., Adderall, Concerta, Ritalin).

    I think it would be valuable for CFS’ers to get on a Autism forum (or maybe just a newsletter blast, at the very least) to stay abreast of cutting edge Autism research and treatments.

    All these patients groups need to be working together as one.
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Deadly Vaccines: Dr. Garth Nicolson, microbiologist

    “Are vaccines contaminated? Are they potentially deadly? Garth Nicolson, whistle-blowing microbiologist (see THE DAY LILY PROJECT), addresses these questions in this excerpt from Dr. Nicolson’s talk at the Common Cause Medical Research Foundation Conference in Sudbury, Aug 29-31, 2008.”

    11 MINUTE VIDEO: http://www.youtube.com/watch?v=6e2ljD3hkhg

    Good links about VACCINES, MERCURY & AUTISM: http://www.whale.to/vaccine/cdc.html

    I love the sign on the webpage that reads: “You can’t convince them (CDC) this is right. Do you know why? Because they already know it…”

    I keep all this stuff on my blog, http://www.cfsstraighttalk.blogspot.com, if people want to read more about the horror.

  25. “… I think that we have obviated a lot of, you know, missteps that might have followed with clinical trials and such for antiretrovirals”

    How does the study obviate clinical trials?
    It was not intended to address all retroviruses.

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