Down The Rabbit Hole

I have about the same amount of mail from people who think I should never have said anything as from people who are angry that I waited too long. There is no way for me to win this one in the court of public opinion. The community is so fractious and reactive that no course of action I could take or not take could possibly leave me without disappointed, critical people. I am sorry for not disclosing my opinions sooner, but we are talking about 3 months, not the years some have claimed in the comments of the last blog. Shoot the messenger if you need to.

My blog was never about Judy Mikovits. It is about the hypothesis. That hypothesis is on the back shelf until this sordid mess plays itself out, which will now probably take years. Years of studying downstream effects, blinders on again, nobody looking for the source of the illness. Tragic.

Take a look at this, not a paper, a blurb on the bottom of a scientist’s webpage. She is probably afraid to publish amidst all the controversy. Who in their right mind would want to jump into this cesspool? With the fishbowl of vitriol that comprise many of the comments on this blog?

Identification of a novel retrovirus in Benign Prostatic Hyperplasia (BPH) 

BPH describes a benign condition experienced by most men as they age, and is a result of increased proliferation (growth) of fibroblast and epithelial cells surrounding the urethra, which over time can form “nodules” and result in compression of the urethra and subsequently obstruction of urinary flow. Symptoms of BPH include urinary hesitancy, frequent urination, dysuria (painful urination), increased risk of urinary tract infections, and urinary retention. Treatment includes surgery and pharmacologic options, although the cause of BPH is unknown. Using tissue from patients who have undergone surgical treatment to alleviate BPH, we discovered that the affected tissue appears to have altered gene expression patterns when compared to normal prostate tissue. This is not unexpected, as the tissue is clearly growing more quickly. However we identified what appears to be increased expression of genes related to an antiviral response. Given the recent findings of a novel virus, XMRV, found in some prostate tumors, we analyzed the BPH affected tissue for viral infection. We found that the majority of tissue from symptomatic BPH patients contained low levels of a virus not previously found in humans. Sequencing confirmed that the virus consists of 2 variants, is not XMRV, and likely produces a protein that has been related to inflammation in other species. Interestingly, the exact virus sequence differs among patients, suggesting that upon infection of the tissue, the virus undergoes replication. Furthermore, sequencing revealed that the virus is likely transcriptionally regulated by androgens, which is consistent with the fact that cell growth in BPH is androgen-dependent and the classic non surgical treatment for BPH is inhibition of DHT (an androgen) production. Both variants of the virus have submitted to the USPTO as a provisional patent, as they may be a therapeutic target for this disease. In addition, we are currently seeking funding to assist in the development of a vaccine, which could potentially eradicate BPH if this novel virus causes the disease, or even if it is just expressed (as a “bystander”) in BPH-affected tissue.

Denise O’Keefe, PhD webpage UPMC

Dr. O’Keefe’s blog: So let’s get this straight; CFS patients don’t have XMRV or MLVs, but if they did, it would explain the neuromuscular pathology….

For everybody who has written that I need to admit that Judy fooled me, I still don’t feel fooled. I could be fooled by a psychopath, like anyone. I have been before. I had a lawyer once that fooled me completely. I have reported my impressions of a person I know well, who is passionate and caring and stands up for what she believes. No signs of psychopathy at all. I hope I am right. In the fishbowl we now find ourselves, I’m sure we’ll find out. Everything. It will be like a rape trial. Blame the victim is always a good strategy.

Annette was captain of the ship. In the ER, when a medical student kills someone in a back room, the attending physician is still responsible. Likewise the CEO of a “state of the art translational research institute”. To me, it looked like Annette took a talented, but vulnerable scientist, and destroyed her. Judy functioned well and published regularly in Frank Ruscetti’s lab for 20 years.

Here is the timeline, since people seem to be questioning what I did when. I read the paper on Oct 9, 2009. I wrote my angry email to the WPI on Oct 28. I was angry for a while, until I met Judy in January. I paid VIP Dx for 2 tests, for my daughter and myself, in early 2010. I couldn’t afford to test my husband or son. I sent specimens to the WPI on a regular basis when we started arv’s, but was never given any results. Some of our specimens were tested, but I don’t know what those results were. It was never reported to me. I was told that some of our specimens were improperly handled by a research fellow who was subsequently fired. I started working as a volunteer for the WPI in the fall of 2010. I started working as an independent contractor in Jan 2011. I worked there for 6 months, mostly from Santa Fe. I made 5 trips to Reno from 3 days to a week. I was fired in early July of this year.

Finding oneself in the position of a whistle blower is a miserable experience. By writing I hope that I have put the WPI on notice of what I would say in court if dragged in. They don’t need a subpoena to find out. They are behaving like thugs. Have they never heard of mediation? I am only sorry that I didn’t say it all sooner. I have mail from people who are angry at me, because they gave money recently. I held hope for a good outcome for longer than I should have. For that I am so sorry.

I also have mail telling me that I should be afraid for my physical safety. That I should ask for witness protection. Witness to what? I wasn’t there. That’s how completely crazy this has become. I would laugh it off, but I would never have believed what has already happened. It is all so beyond the pale. SNR Denton, very expensive patent lawyers, are monitoring my blog again in the last couple of days from Chicago and Kansas City, including the tech department. It is creepy beyond belief. And the money being spent on all this? Where did it come from? Imagine what the tab is by now!

I feel like I stepped in dog shit and will never get it off. Everyone involved has been brought down by it. I don’t know what to do, except keep telling the truth as I see it. As I said, I wish I had done it sooner, but I still held hope for a positive outcome somehow. I can’t believe that all of this is happening. A year ago it was all so hopeful. I am heartsick.

Tonight’s song: Trouble

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362 thoughts on “Down The Rabbit Hole

  1. >So, RRM, Trudie Chalder just published another CBT paper in the Journal of Psychosomatic Research. Now I think it's safe to say that it's a reasonable conclusion that someone who has a sister with CFS will probably not see the Department of Psychological Medicine at King's College to be the best place to be conducting CFS research.

    So, it would follow that, considering all the time & energy you expend on going after Judy Mikovits, that surely you will have spent some time directing your attention on such villains of the CFS research universe.

    Come on, now. Don't be shy. Share with us.

  2. >I don't what medical insurance program folks here have, but unless you pay for every appointment, treatment and medication, there sure is regulation here.

    Medicare and Medicaid only pay for certain types of doctors' visits, treatments and medications. They do not necessarily pay for alternative treatments or doctors. On medications, they have taken out of their coverage more expensive medications.

    Now 5 states have taken HIV/AIDS medications from automatic coverage and put 9,000 people on waiting lists. Some have died.

    Ampligen, for instance, was not okayed by the FDA, so these agencies won't cover it. It's tens of thousands of dollars in costs. I've seen $16,000 to $40,000 a year.

    They deny claims all of the time. Ask anyone who's had to fight for a claim to be covered.

    And as far as private insurance, I hear of claim denials all the time, of treatment not covered, of people fighting with their insurance companies.

    And if one is "in network" insurance or an HMO, you have to go to the approved "in network" doctors, with few options, and you can't go "out of network" unless you can afford to pay for that.

    So many people I know are fighting to get health care covered. And those — of the 50 million without health insurance — including friends of mine, go without health care altogether.

  3. >Kathy D.—of course you are right, the financial side of things is a disaster in the US and many people can't get the care they need. What I was responding to, though, was In Vitro Fidelium's defense of the British NHS for being prepared to prosecute doctors who were willing to order XMRV tests at their patient's request.

    The British system is a complete nightmare for ME/CFS patients. Many many British patients (not just ME/CFS patients, but all sorts) buy private care outside of the NHS because the NHS is miserable. But even when you pay for care yourself, the doctors are required by law to practice medicine according to quite specific and narrow guidelines laid out by the NHS. Otherwise, they can be prosecuted and hounded out of practice. That means that, in Britain, if a doctor prescribes Valcyte, vitamin B shots, oxygen therapy, or any of the many other treatments we have discussed here (not to even speak of AIDS drugs or Rituximab), they are liable to have their license to practice medicine revoked!!!

    In Britain, if you have ME/CFS and go to a doctor, through the National Health System or privately, and he/she recommends or prescribes anything to you other than Cognitive Behavioral Therapy or Graded Exercise Therapy as a treatment, that doctor can be called up before a government court and barred from practice!

    I hate the injustices of our system, but I would prefer to be an ME/CFS patient in the US over Britain any day.

    There is another fun little hazard I've heard about in the British system. This is called "sectioning," I believe, in which the government can decide that you are not approaching your own or your child's ME/CFS with the proper spirit of self-doubt and submission to the wisdom of the NHS. Refusing CBT and GET can lead to your being "sectioned," or forced into treatment in a residential facility, where you are made to undergo GET. You can just imagine how well that goes for people with post-exertional illness (which is the defining symptom of ME, after all).

    So count your blessings every day, however few, if you have ME/CFS and DON"T live in Britain.

  4. >Yes, that Darth Vader Simon Wessely and his buddies are somewhat, if not altogether, responaible for the denial of treatment for ME/CFS.

    I have read that his spouse is head of a medical/physician network and has a lot of say on medical treatment and disability.

    The whole spectrum of how ME/CFS is treated in Britain is medieval. Maybe they'll recommend leeches and bloodletting soon.

    I'm hoping that the studies done by Drs. Fluge and Mella in Norway will get the science to other countries, including Britain.

    I'm not pushing Rituximab. It scares me, actually with its side effects. However, I do think the scientific findings that go with it, that it's an immune dysfunction which affects B cells, etc., can be used to our advantage. And it — and other studies — could be used to counter the evil forces over there.

    No. You're right. I wouldn't want to have ME/CFS over there. I'd like not to have it here either! However, there's not much to do here other than "aggressive rest." I find diet does not help. I might as well live on tea and muffins. Exercise is almost impossible.

    I'm sort of past the point of trying things. Nothing I've tried worked, a few things made me sicker, such as Vit. C drips. Couldn't get out of bed afterwards for 3 days at all. Stopped after 2 times.

  5. >Regarding your post on BPH: My husband is now going in for his third prostate surgery. None of the medications are working anymore. Further, they just told him that someone his age should never take Avodart because it leads to prostate cancer. If this surgery does not work, the next step is having his prostate removed. He also has some unknown growth on his bladder. We are hoping it is not cancer.

    I am so tired of watching the people in my family suffer. I wish that all the controversy would end and the right scientists would get together and finally figure out what the hell is going on. Arguing among CFS'rs is not helping our cause at all. Most people already thought so little of us before XMRV. Imagine what they think when they come across blogs where people are more concerned about being right than anything else. I have been angry with doctors and psychologists for years for obvious reasons. But right now I am the most angry at other people with CFS.

    I have 7 people in my family now sick with CFS or Fibromyalgia along with related medical problems. We need help not controversy. I am begging you all, please stop the arguing. It gets us know where.

  6. >"Anonymous lie spreader — please provide some proof that the raw data was stolen — a statment from Mikovits, a statement from the WPI. Why are you arguing over this — you just sound like an imbecile at this point."

    Evidence of theft is required thus it is an alleged theft. The police and courts do not automatically accept theft, but investigate the allegation. Take rape. Evidence is collected quickly and appropriately so that at a later date a decision can be made on whether a rape has occurred. As we do not know who had the notebooks, who returned them, when they were returned, and who legally owns them or is entitled to the contents, theft is only alleged at this time. It is not proven.

  7. >What's MORE Amy Dockser Marcus has been turned AGAINST us. She's been GOT AT. Who's paying her off?

    The same person who fixed that "accident".

    Cort and his coffee…I blame Cort.

    Occupy Internet NOW!

    Ad hominen…pure…

    Cort and his coffee.

    Get a grip!

  8. >Anonymouse @ 10:23 — I am not talking about the notebooks. I was talking about the imbecile, probably Gerwyn or one of his groupies, who keeps saying that RRM or Billy must have stolen the slide that contains the raw data from the original study — you know the slide that contained the AZA lane which was formatted and relabelled for the original science paper and then formatted and relabelled yet again for the Ottawa conference. If Gerwyn or one of his groupies is going to continually make ridiculous comments that people who posted the raw data on the internet are being investigated by the police, they should provide proof. The are not alleging anything, they are making outright false statements. They are making ridiculouse stupid idiotic moronic imbecilic commments. For people who are apparently so educated in matters of virology they can't seem to figure out how power point works, nor can they figure anything out much about anything. They have been an embarrassment to this community for much too long. Their new forum is an absolute joke.

  9. >@ Curious

    Wrongs in one branch of the research don't nullify wrongs in another branch.

    Are you suggesting that people who can see flaws in particular pieces of research (or bald-faced lies about those pieces) should not comment on them, unless they're prepared to take on the entire body of ME/CFS research literature? Really, is that helpful to the patient population?

    I have a Social Science background. I haven't liked some of the things I've heard about the PACE methodology – but I don't have time to do what I'd do if I was formally critiquing/evaluating some research ie. carefully read the Terms of Reference, any Steering documents, original proposal, and all published reports. This is hours and hours of work, *if* it's done properly. (Plus review of the literature leading to the current report).

    People on the Internet often say they've "done research". Usually this means they're skim-read a couple of papers (and often selected them in a way that confirms what they already think).

    Properly reviewing something like PACE – would take A Great Deal Of Time. I agree that it's a problem that people aren't arguing about it so intently – but the size, and the fact that it's less "hard" science, makes it a much more intensive proposition. Not being prepared to tackle it doesn't mean you can't comment on other things.

  10. >@YoYoMama

    I believe (although it can be hard to pick Gerwyn's/V99's brain) that the idea was that, since Mikovits hadn't actually admitted to stealing the materials, it could be possible (and was even seen as probable) that an enemy of Judy had taken them. Gerwyn is quoted as saying after the return of the neotebooks:

    "so the books were returned by an anonymous person.I wonder if it was Billy or RRM?"

    However, since Judy's laywer has now admitted to Mercuty News to Mikovits taking and returning the notebooks, I'll take that he'll graciously concede the point (as ever). A quote from the article (again, no direct link because of the possible spam filter) in question:

    "[Mikovits's lawyer Scott Freeman] confirmed the notebooks had been returned "because they were requested."

    "Consistent with her innocence, we were more than happy to provide it," he told The Associated Press. He said any delay in producing the materials—which Mikovits initially denied having—stemmed from her failure to fully understand the workings of the legal system

    "Explaining to a scientist how the criminal system works is like a scientist explaining to us how to cure cancer," Freeman said."

  11. >@Agatha
    I really wonder whether you have any knowledge about the UK, let alone the specifics of the NHS or the regulation of medicines and medical services in Britain, other that provided by various hysterical rants from individuals who present themselves as being M.E/CFS affected.

    The NHS does not ‘prosecute’ doctors or anyone else, certainly the NHS like any organisation can exercise legal action where its interests have been harmed, but professional regulation of doctors in the UK is a matter for the General Medical Council, which is in effect the ‘doctors’ trade union’. There are many inadequacies with GMC, but enthusiasm for frivolous complaints against doctors is not one of them. Whether one does or does not agree with the professional rules that apply to medics registered in the UK, the rules are as they are and currently provide for a responsibility of doctors to ‘not’ order medically unproven or unnecessary tests, whether by NHS or privately funded.

    Only a fool would suggest the NHS was perfect but the only means by which make reasoned comparison of national systems of health delivery is via considered appraisal national health outcomes. By all measures over the course of its history the NHS has been highly efficient in terms cost versus health outcomes that have been achieved. It has also been, at least when considered across a broad perspective, demonstrably fair. There have been, and continue to be, appalling failures, but relative to its population size and averaged wealth, the UK is not notably conservative in the introduction of novel treatments. A demand led hierarchical system, as in the US, will certainly roll out novel treatments to those who can afford them at a faster rate than a needs based system such that applies in much of the UK. However US medicine is highly conservative in treatments provided to lower income groups. It was amusing to see your argumentum ad populi rank the French system as preferred to that in the UK – given the French do not even recognise M.E/CFS as an organic illness.

    M.E/CFS is a challenge to all and every Health System. The inherent position of the author of this Blog is that ‘off label’ (novel) demand led prescription has been essential to the improvement of her health. There are philosophical, pragmatic and scientific considerations that have to be addressed when matching JDJ's position to any given health system, but the position itself is too narrow to stand as a critique of a national health system. We are not going get health systems matched to the specific needs of M.E/CFS patients, and arguing for such is pointless, what we can do is identify best practice wherever it may be and seek to encourage adoption of that for all M.E/CFS patients wheever they live. My argument is, that regulation of doctors exists (wholly independently of the NHS) in such a way that M.E/CFS patients should have been protected from buying a medical test that had no diagnostic value, the results of which were uninterpretable in any medical sense, and which could only have elevated anxiety of he patient. I consider those regulations to represent good practice and I regret that such protection isn’t available in the US – though I accept there are those who ‘do not want it’. As it stands there are M.E/CFS affected people who feel they've been cheated by purchasing the VIPdx tests, for UK individuals one direction of complaint may be via those doctors who failed to act within the regualtions that define good practice.

  12. >@Agatha
    I really wonder whether you have any knowledge about the UK, let alone the specifics of the NHS or the regulation of medicines and medical services in Britain, outside of various hysterical rants from individuals who present themselves as being M.E/CFS affected.

    The NHS does not ‘prosecute’ doctors or anyone else, certainly the NHS like any entity can exercise legal action where its interests have been harmed, but professional regulation of doctors in the UK is a matter for the General Medical Council, which is in effect the ‘doctors’ trade union’. There are many inadequacies with GMC, but enthusiasm for frivolous complaints against doctors is not one of them. Whether one does or does not agree with the professional rules that apply to medics registered in the UK – the rules are as they are and currently provide for a responsibility of doctors to ‘not’ order medically unproven or unnecessary tests, whether by NHS or privately funded.

    Only a fool would suggest the NHS was perfect but the means to make reasoned comparison of national systems of health delivery is via national health outcomes, by all measures over the course of its history the NHS has highly efficient in terms cost versus health outcomes. It has also been , at least when considered across a broad perspective, demonstrably fair. There have been, and continue to be, appalling failures, but relative to its population size and averaged wealth, the UK is not notably conservative in the introduction of novel treatments. A demand led hierarchical system as in the US will certainly roll out novel treatments to those who can afford them at a faster rate than a needs based system such that applies in much of the UK. However US medicine is highly conservative in treatments provided to lower income groups. It was amusing to see your argumentum ad populi rank the French system as preferred to that in the UK – given the French do not even recognise M.E/CFS as an organic illness.

    M.E/CFS is a challenge to all and every Health System. The inherent position of the author of this Blog is that ‘off label’ (novel) demand led prescription has been essential to the improvement of her health, there are philosophical, pragmatic and scientific considerations that have to be addressed when matching that position to any given health system, but the position itself is too narrow to stand as a critique of a national health system. We are not going get health systems matched to the specific needs of M.E/CFS, and arguing for such is pointless, what we can do is identify best practice wherever it may be and seek to encourage adoption of that for all M.E/CFS patients. My argument is, that regulation of doctors exists (wholly independently of the NHS) in such a way that M.E/CFS patients should have been protected from buying a medical test that had no diagnostic value, that the results of which were uninterpretable in any medical sense, and which could only have elevated anxiety.

  13. >"RRM or Billy must have stolen the slide that contains the raw data from the original study "

    I don't see anyone saying they must have stolen the materials, but that the police will investigate how they were in possession of it. It was after all raw Lombardi data not the published gel or Ottawa slide. The same gel Science and Coffin had relabelled, which is how they always knew about AZA.

    Why are the samef few people here coming across as terribly worried that they are being investigated? Really shouldn't be a concern if they have done nothing wrong. Lol

  14. >@ In Vitro Infidelium

    You are right that I don't have in-depth knowledge of the British health system, only negative reports from British friends, news reports, and of course the notoriously wretched treatment of ME/CFS patients. I also didn't know that the French don't define ME/CFS as an organic illness.

    I also generally agree with you that it doesn't make much sense to judge a whole health care system according to how it treats one particular disease. And yes, health outcomes are probably a better overall measure. I know the US has poor overall outcomes. And I don't actually know how Britain ranks.

    I admit that I was writing more as a ME/CFS patient relieved not to be caught in the NHS system than as an overall critic of health systems. I have heard the anguish of British ME patients so many times, and I read about the persecution (if not prosecution) of Dr. Myhill with dismay. I realize she is probably not a perfect practitioner, any more than some of our less traditional ME/CFS doctors over here, but it also doesn't sound like she's being truly irresponsible or like she's harming patients–only trying to help them through unconventional means.

    I grant you most of your points. I still maintain, in the particular instance of the XMRV tests, that it was a good thing that the US system allowed doctors to order the test and patients to receive it, even though it turned out badly, because, at the time it was first being offered by VIPdx, it would have been highly inflammatory among patients here if it had been disallowed (or implicitly disallowed, as in the apparently rather restrictive "good practice" dictates of the GMC). There would have been a huge hue and cry among patients, taking precious energy (as valuable and scarce a resource as money for us). Perhaps if there had been some mechanism to prevent VIPdx from offering the test at all, it would have been better, although I'm sure that opens up another whole can of worms.

    By the way, I am largely in favor of nationalized insurance for the US (not quite identical to nationalized medicine), although the way the NHS has treated ME/CFS patients stands as a warning for me. Although one patient class doesn't damn the whole system, it can provide insight into the weaknesses and hazards of that system.

  15. >For pete's sake == @ 7:10, nobody is worried they are being investigated because everybody knows, save the imbeciles that are posting the lies, that the raw data slide was found in a PPP. Have a raw data slide does not mean you possess the actual raw data. There is no investigation except for the one relating to Mikovits, Pfost etc. Double duh. Double facepalm, the red herring is dead and stinking up the internet.

  16. >As others have explained to you RRM, who owns the materials is to be determined, but you, Billy and others will still be investigated to uncover how you, a person very hostile toward Mikovits, have been posting raw Lombardi data on the web when the materials are said to have been stolen.

    The small news paper article you highlight cannot be read the way you wish it to be. We all know the notebooks have been given to the police, but who returned them? In a separate paragraph what is the lawyer sayings they provided? A statement, the notebooks that Mikovits owns, other material she is entitled to?

    The part about failure to understand the legal system extends to you also RRM

  17. >The raw lombardi data had nothing to do with the powerpoint presentation. RRM has gone from claiming they got the gel from the PowerPoint, to admitting they got it from an anon poster. Billy refused to answer. As there has been a witch hunt and alleged materials stolen the police are investigating Billy, RRM and their contacts.

  18. >Agatha et al,

    Many physicians who have departed from the conventional wisdom have been persecuted in the US. In our country, the complaint usually stems from an insurance company. Charles Ray Jones had to fight the Connecticut medical board for years, for treating children that nobody else would help. I know him personally and he is the real deal, a very fine, compassionate physician. In his 80's, still fighting. I don't know the status of his case in the last year or so, if anyone wants to fill us in. Last I heard, he had spent $700,000 defending himself. ILADS was founded in part by physicians who were facing medical board charges for unconventional use of antibiotics.

    The FDA has come after alternative doctors in this country. Well known alternative doctor Jonathan Wright's office was raided in the early '90's. "The FDA won’t spend a dime on ozone research, but they spent over $1 million intimidating, harassing, and persecuting me alone." from his website.

    There is a "Health Freedom" movement in our country that has made some inroads, legislating for greater flexibility in the physician patient collaboration. There is legislation to protect physicians in some states, but not others.

    Jamie

  19. >Any apologies yet, now that we know Mikovits did indeed have, and has returned, the notebooks?

    Hmmm…

  20. >anonymouse @8:24. You are wrong like usual. RRM has always maintained that he copied the link of the raw gel from this site — http://pipeline.corante.com/archives/2011/10/04/xmrv_this_is_not_good.php. The raw data found in the tiny URL comes from a powerpoint powerpoint presentation. Triple duh. Triple face palm. The redherring has died, is stinking up the internet, and is now being used to fertilize your ridiculous statements. Prove to me, that there is any investigation of the theft of this raw data slide. Now did RRM fly all the way from Europe, don his invisibility cloak, break into the WPI and then post the raw data on the internet. Are you claiming he stole the note books too — why didn't he just copy the contents on the internet. The person who stole anything from the WPI is being investigated along with their conspirator.

  21. >No, Anon 10 AM. However, I can no longer discuss the case. The lawyers have it. We all need to go back to work.

    Jamie

  22. >"Any apologies yet, now that we know Mikovits did indeed have, and has returned, the notebooks?

    Hmmm…"

    We do not know Mikovits had the notebooks. We don't know who return what. We also do not know who owns them and who is entitled to them.

  23. >"anonymouse @8:24. You are wrong like usual. RRM has always maintained that he copied the link of the raw gel from this site — http://pipeline.corante.com/archives/2011/10/04/xmrv_this_is_not_good.php. "

    RRM has also claimed to have obtained the raw data nothing to do with the PowerPoint from an anonymous post on ERVs blog and someone else or RRM claimed from an email. It is now part of a criminal investigation. So which retrovirologists have been talking to RRM and Billy?

  24. >RRM posted the link to the raw Lombardi gel. Again there is no source, so where and how did RRM, Billy and perhaps ERV get the gel from? It was not part of a PowerPoint presentation.

  25. >Jamie can no longer discuss the case, and this is her blog. Maybe we can all move on? There is plenty to talk about in reference to our disease.

  26. >So how do we help Dr Mikovits continue her research and get another lab, on top of the 4 we have, do a replication study of Lombardi et al?

    We can already ensure the police know who to investigate on the web posting raw Lombardi data when material was claimed to have been stolen.

  27. >@Anonymous November 30, 2011 12:25 PM

    "We do not know Mikovits had the notebooks. We don't know who return what. We also do not know who owns them and who is entitled to them."

    Mikovits's attorney, who speaks on her behalf, has stated the following:

    "Consistent with her innocence, we were more than happy to provide [the notebooks]"

    Although that should read "conistent with her guilt but because we didn't want to minimize the damages caused by her actions, we were more than happy to etc..", it's quite clear that the notebooks were turned over by Judy Mikovits.

    Or her lawyer is "in on it" too, of course…

    Oh, and PS: I put quotation marks around the whole of the part from the Mercry News article I posted, because it was a quote, i.e. those words weren't mine but the reporter's.

  28. >Have Alter and Lo said anymore about whether their findings of a murine retrovirus in cfs patients was caused by lab contamination?

    Are we assuming that all the positives found in cfs patients by WPI were false positives? What about the samples that grew cultures and those that had antibodies?

    I understand that there was lab contamination, at least at some point, but it seems to me there is still strong evidence that a new retrovirus is on the scene.

    And then there are the patients like myself who tested negative for XMRV and Mikovits even took a close look at my blood sample. If there was lab contamination was my sample not contaminated?

    WE MUST HAVE MORE RESEARCH ON THIS.

  29. >Anon from Nov 28, 5:40 AM

    When I read your comment I was sorry I had given you that particular post. It was written to simplify, not to make a strong argument for the scientific points. You called the references I routinely provide "vague", so I had to assume you didn't understand them. You can't have it both ways. Despite the tone of your comment, it is so rare to have anyone actually engage the questions beyond "your dumb". My heart isn't really in it at the moment, and I don't have the time to write the whole thesis again in response right now. Anyway, it would appear you have quite a bit of reading to do, before you can really engage the discussion. Here are references to dispute your points. It would be very helpful if you told us your background, still remaining anonymous, if you feel the need.

    Anon said: (About MLV insertion into CpG islands) While this may be true, this is an EXTREMELY rare event. Specifically, its a rare event to target a transcription start site. Moreover, its even more rare to target a gene that causes leukemia in mice, such as src, myc, etc…

    Integration Site Preference of Xenotropic Murine Leukemia Virus-Related Virus, a New Human Retrovirus Associated with Prostate Cancer. Kim, Chow. J Virol. 2008 October; 82(20): 9964–9977.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2566297/?tool=pubmed
    Among all retroviruses analyzed, XMRV has the strongest preference for transcription start sites, CpG islands, DNase-hypersensitive sites, and gene-dense regions; all are features frequently associated with structurally open transcription regulatory regions of a chromosome. Analyses of XMRV integration sites in tissues from prostate cancer patients found a similar preference for the aforementioned chromosomal features.

    Identification of the Infected Target Cell Type in Spongiform Myeloencephalopathy Induced by the Neurotropic Cas-Br-E Murine Leukemia Virus. Gravel, Jolicoeur. JOURNAL OF VIROLOGY, Nov. 1993, p. 6648-6658
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC238103/pdf/jvirol00032-0326.pdf
    Parallels between microglial cell infection by MuLV and by lentiviruses, and specifically by human immunodeficiency virus, are discussed.

    Anon said: Simply does not happen the same way when you are talking about a gamma retrovirus. Gamma retroviruses (especially XMLVs) do not produce a large immune reaction. Everyone in the retrovirus field knows that MLVs are literally silent to innate antiviral immunity…

    Neurodegeneration Induced by PVC-211 Murine Leukemia Virus Is Associated with Increased Levels of Vascular Endothelial Growth Factor and Macrophage Inflammatory Protein 1 and Is Inhibited by Blocking Activation of Microglia . Li, S Ruscetti. J. Virol. May 2009 vol. 83 no. 104912-4922
    http://jvi.asm.org/content/83/10/4912.full
    Together, these results suggest that PVC-211 MuLV infection of BCEC results in the production of VEGF and MIP-1 , leading to the vascular changes and microglial activation necessary to cause neurodegeneration.

    continued next comment

  30. >Anon said: (About whether ERV's can produce infectious virus or be transmitted vertically) They do but do you know what it takes for this to happen? For an ERV to be transmitted? The virus will need to infect reproductive cells of either mother or father and even more rare event.

    The International Xenotransplantation Association consensus statement on conditions for undertaking clinical trials of porcine islet products in type 1 diabetes–chapter 5: Strategies to prevent transmission of porcine endogenous retroviruses.
    Denner, Patience. Xenotransplantation. 2009 Jul-Aug;16(4):239-48.
    http://www.ncbi.nlm.nih.gov/pubmed/19799764
    There is no in vivo animal model for cross-species PERV transmission, and therefore it is not possible to validate monitoring assays for PERV transmission in an in vivo situation.

    Characterization of porcine endogenous retrovirus clones from the NIH miniature pig BAC library.
    Yu, Lee. J Biomed Biotechnol. 2012;2012:482568. Epub 2011 Sep 7.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3168785/?tool=pubmed
    Pigs have been considered as donors for xenotransplantation in the replacement of human organs and tissues. However, porcine endogenous retroviruses (PERVs) might transmit new infectious disease to humans during xenotransplantation.

    Reappraisal of biosafety risks posed by PERVs in xenotransplantation. Louz D, Bergmans HE, Loos BP, Hoeben RC. Rev Med Virol. 2008 Jan-Feb;18(1):53-65.
    http://www.ncbi.nlm.nih.gov/pubmed/17987669
    Donor materials of porcine origin could potentially provide an alternative source of cells, tissues or whole organs for transplantation to humans, but is hampered by the health risk posed by infection with porcine viruses. Although pigs can be bred in such a way that all known exogenous microorganisms are eliminated, this is not feasible for all endogenouspathogens, such as the porcine endogenous retroviruses (PERVs) which are present in the germline of pigs as proviruses. Upon transplantation, PERV proviruses would be transferred to the human recipient along with the xenograft.

    Identification of a functional envelope protein from the HERV-K family of human endogenous retroviruses. Dewannieux, Heidmann. J Virol. 2005 Dec;79(24):15573-7.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1315997/?tool=pubmed
    Genome-wide screening of sequence databases for human endogenous retroviruses (HERVs) has led to the identification of 18 coding env genes, among which two-the syncytin genes-encode fusogenic ENV proteins possibly involved in placenta physiology. Here we show that a third ENV, originating from the most "recent" HERV-K(HML2) family, is functional.

    Human endogenous retroviruses and multiple sclerosis: innocent bystanders or disease determinants? Antony, Power. Biochim Biophys Acta. 2011 Feb;1812(2):162-76. Epub 2010 Aug 6.
    Human endogenous retroviruses (HERVs) constitute 5-8% of human genomic DNA and are replication incompetent despite expression of individual HERV genes from different chromosomal loci depending on the specific tissue. Several HERV genes have been detected as transcripts and proteins in the central nervous system, frequently in the context of neuroinflammation… Given the multiple insertion sites of HERV genes as complete and incomplete open reading frames, together with their differing capacity to be expressed and the complexities of individual HERVs as both disease markers and bioactive effectors, HERV biology is a compelling area for understanding neuropathogenic mechanisms and developing new therapeutic strategies.

    Expression of HERV-K proviruses in human leukocytes.
    Brodsky, Gillespie. Blood. 1993 May 1;81(9):2369-74.
    http://bloodjournal.hematologylibrary.org/content/81/9/2369.long
    Using both reverse transcriptase-polymerase chain reaction and ribonuclease protection techniques, we show HERV-K pol gene expression in human blood leukocytes.

    continued next comment

  31. >Anon said: This doesn't even make sense (with respect to my poorly expressed ideas about gene activation and insertional mutagenesis).

    Insertional mutagenesis: neoplasia arising from retroviral integration. Gray. Cancer Invest. 1991;9(3):295-304.
    http://www.ncbi.nlm.nih.gov/pubmed/1913232
    The integration of retroviral proviruses near cellular genes can profoundly affect their expression. Painstaking analysis of insertion sites from a large number of tumors has revealed a number of previously unknown proto-oncogenes, and has elucidated new mechanisms whereby known proto-oncogenes can be activated.

    Identification and mapping of a common proviral integration site Fli-1 in erythroleukemia cells induced by Friend murineleukemia virus. Ben-David, Bernstein. Proc Natl Acad Sci U S A. 1990 Feb;87(4):1332-6.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC53469/?tool=pubmed
    We have previously shown that inactivation of the cellular p53 gene is a common, if not obligate, step in leukemic transformation induced by either F-MuLV or FV-P and FV-A…Thus, the disease induced by Friend virus complex involves both the activation of a cellular gene and the inactivation of a tumor suppressor gene.

    Telomerase reverse transcriptase expression elevated by avian leukosis virus integration in B cell lymphomas. Yang, Beemon. Proc Natl Acad Sci U S A. 2007 November 27; 104(48): 18952–18957.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2141889/?tool=pubmed
    Simple retroviruses induce tumors by integrating into the host genome, activating cellular oncogenes and microRNAs, or inactivating tumor suppressor genes… This study documents retroviral up-regulation of cellular TERT by insertional activation to initiate or enhance tumor progression.

    Retroviral insertional mutagenesis: past, present and future. Uren, Lohuizen. Oncogene. 2005 Nov 21;24(52):7656-72.
    http://www.ncbi.nlm.nih.gov/pubmed/16299527
    Retroviral insertion mutagenesis screens in mice are powerful tools for efficient identification of oncogenic mutations in an in vivo setting. Many oncogenes identified in these screens have also been shown to play a causal role in the development of human cancers.

    Jamie

  32. >"RRM posted the link to the raw Lombardi gel. Again there is no source, so where and how did RRM, Billy and perhaps ERV get the gel from? It was not part of a PowerPoint presentation."

    First, I'm a patient. I'm very kindly disposed towards the plight of Judy Mikovits. I am not a scientist.

    Now, you really need to get a grip here. This has been explained to you ad nauseum. Please, for the love of God, ask someone to walk you through the steps posted here, by someone else – not me, re how to unformat a Power Point slide.

    To friends of the above commenter: If you know this person, please explain this to them because they are making as ass of themselves and it isn't pretty. Help them!

    It also makes us all look like idiots.

  33. >I wouldn't worry about V99 & Gerywn, they are both being investigated by intelligence agencies and the Justice departments on both sides of the Alantic for conspiracy to commit sabotage and other such related activities.

  34. >Really?! I knew they were close – she copied his disease model apparently. But I always thought there was something a bit strange about Gerwyn's motives. Just goes to show eh.

  35. >Omigod, now it's an international espionage case?

    And here we are, a million or more of us who can't get out of bed, go to work, make our own meals, go to the grocery store, etc. Who knew a global conspiracy is involved?

    This is the stuff of which good thrillers are written. If only we had the energy to write such a book.

  36. >This has been pointed out several times. The raw Lombardi data has nothing to do with the PowerPoint presentation. Powerpoints like word documents are easily altered. I see RRM and Billy fanatics fearing this investigation. No one else is concerned, but then again it was RRM and Billy who posted the raw gel on the web when material was allegedly meant to be stolen.

  37. >There are no Billy and RRm fanatics (I've particularly no idea who Billy is). There are just people that are astonished and amazed that you don't understand how PowerPoint works, and continue to make it obvious again and again.

    Or that you seem to be unable to take your fingers our of your ears, and cease singing "Lalalalalalala" long enough to say much that's sensible.

  38. >There is still no source for obtaining the gel as it was nothing to do with the PowerPoint. What reliable persons hands, who would not tamper with it, is it claimed to have passed through? RRM claims an anon on a blog. A reliable anon who has no source! The police are investigating if several people all tied to famous anti-retrovirus virologists obtained the gel and posted it when the materials were allegedly stolen.

  39. >Stil no source for the raw Lombardi gel that was nothing to do with the PowerPoint. I suppose in the magical world of immaculate contamination and recombination power points are free from altering, yet where is that PowerPoint? RRM claimed to have obtained it from an anon on the web, Bilky would bot say, but they and you Stella look very nervous about this investigation. Now why is that?

  40. >Powerpoints are easily altered, what is the source of the raw Lombardi gel? Why are you afraid to be investigated.

  41. >That's it, about the gel and the slide. I haven't been reading those particular comments for some time. Everybody has seen them, and been annoyed by them, ad nauseum. I will remove them from here on out. What do you think this accomplishes? It just makes it clear that you're nuts, so your comments are dismissed. Why waste the energy moving your fingers? Don't you have anything better to do than irritate people? I have much better things to do than moderate these ridiculous, repetitive comments. But the gnats are in the room and I guess I will have to swat at them.

    Jamie

  42. >I would like to know what their new explanation is for the viruses. Having tried to make it look like VP62 appeared in the 90s what do they say now? Coffin and Pathaks paper is shredded and 293T cells dating from 1977 are also infected. There is also Grossbergs other xenotropic/polytropic variants discovered in 1989. So now they say these are viruses can infect humans and multiple assays have shown they are infecting humans, more so in tissue then blood studies as you would expect of a gamma retrovirus. Where is all the new research?

    Do we turn to Amnisty, the UN, scientists in another country? Do we make this into what the space race was and push the decent real scientists of the world to stand up to the plate and do their job?

  43. >"Do we turn to Amnisty, the UN, scientists in another country? Do we make this into what the space race was and push the decent real scientists of the world to stand up to the plate and do their job? "

    Yes, that sounds like a splendid idea! Why don't you call the UN and ask them to make it a top priority? I'm sure they will give this all the attention it deserves.

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