Experiments In Vivo

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So here we are, two years after the scientific community was told which rock to look under, still arguing about whether two or three scientists can reproduce their work or not. In the meantime, a promising avenue of treatment, antiretrovirals, has been shut down like a prohibition, for the flimsiest of reasons. Too dangerous (compared to what?). Too expensive (for whom?). AIDS patients need their drugs (since they have a serious illness). How can we treat it if we don’t know the precise agent we are treating? The way doctors treat people every day. Best guess. I actually think we have a better model than the rheumatologists are using to prescribe incredibly toxic drugs for patients with autoimmune diseases.

AIDS patients have to be treated forever, but we don’t have any idea if that is true for us or not. Just think how much we’d know now if part of the money that was spent trying to find a virus that doesn’t exist in nature could have been spent on very simple clinical trials of safe, existing drugs. It is becoming clear that at least some are concerned about lab contamination by viruses that are very good at infecting human cells in vitro. See Zhang and Sfanos on the side bar. It’s about time somebody worried. Whatever works, and fear is a good motivator. It worked for HIV.

Here are a few excellent papers that have helped me to refine my working model, though I don’t like it that it is going towards greater complexity, since I like grand unifying theories. But the level of complexity of the problem is intersecting with the state of the art. Cutting edge sequencing and analytics are required.

I still think it’s simple retroviruses at the bottom of it, and maybe not just gammas. Simple retroviruses go for the germ line and become endogenous. Multiple assaults. Most end as ineffective sequences, with deletions, tamed by restriction factors that give an individual’s offspring an evolutionary edge. ERV’s can be defective and still cause disease. They can even become symbionts:

Defective sequences can be reconstituted by new incoming. It is not as simple as one sequence or one virus, or even five strains of one virus. Lots of viruses and pieces of viruses. Lots and lots of exposures, if it came from vaccines, grown in all kinds of cells, murine and avian, administered parenterally to most of the human race for decades, and subject to recombination. There were clearly waves when people got sick, but those may have been recombination events, when some necessary piece was supplied to reconstitute something that was there already. Or maybe there were waves of helper viruses that went out and turned on what was there. Or particular environmental toxins that activated one from an earlier invasion (from the Weiss paper above: “..we were able to show that treatment of normal chicken cells with a variety of activating agents such as ionizing radiation or carcinogens stimulated release of virus..”).

This was probably part of the problem too; endless selective breeding of sick mice that produce retroviruses that they are resistant to, but the cells of other species may not be, hence putting lab workers at risk, especially those working directly with tissue culture and xenografts. The Mouse Trap: The dangers of using one lab animal to study every disease. Engber.
The younger women I am seeing, and who have written to me, often have symptoms consistent with PCOS (polycystic ovary syndrome). The few I have tested in my practice, have laboratory evidence of LH insensitivity, LH/FSH ratio greater than 2 in a menstruating woman with normal FSH. LH insensitivity interferes with the egg being released from the developing follicular cyst, so the corpus luteum doesn’t form properly, progesterone isn’t made normally, and estrogen dominance, with all its problems, ensues. The condition is also characterized by high androgens and a dysmetabolic syndrome causing central body fat distribution. Does progesterone deficiency favor the virus? Physiologic replacement is a powerful therapeutic option for women so affected. PCOS is a very common cause of reduced fertility, so if germline retroviral infection is involved, it isn’t a very good strategy for a virus that is not spread horizontally. However from an evolutionary perspective, if the virus succeeds in most of its hosts, the few that become infertile and are a dead end, are just part of the evolutionary process. Remember that only a very small percentage of HTLV patients ever get sick and genetic factors are probably key.
Env proteins are strongly implicated in the neuropathogenicity of MLV’s, and also recognized in the evolving retroviral model of RRMS (relapsing remitting multiple sclerosis).

Could antiretroviral drugs be effective in multiple sclerosis? A case report. Maruszak: This is a letter to the editor behind a paywall, but documents the resolution of significant neurologic impairments, including bladder and bowel incontinence, in an MS patient after being treated with HAART for HIV infection. The patient developed MS and was infected with HIV in ’85. He was treated with HAART in ’96, improved rapidly with resolution of many MS symptoms, including fatigue, within two years. It happened in the late ’90’s and it was just published… It is the only paper I could find where anyone has documented an effect of arv’s on MS, despite the fact a retrovirus has been suspected for over a decade. How’s that for blinders! What is it about this particular class of drugs that has everybody so spooked? Is it because AIDS patients have to take them forever? It may not be the case here. The best anecdote I’ve heard was 16, only sick for 8 months, responded quickly, stopped treatment after 6 months and has stayed well, as far as I know. And even if the drugs are for good, they are very clean drugs. HIV infected people have gotten very good research into their disease.

The literature suggests that the search for a sensitive enough reverse transcriptase assay was abandoned for HIV, as specific testing became highly sensitive. However, if you were looking for generic replication competent retroviruses that you could monitor, a clinically useful RT assay would seem to be indispensable. RT assays have been used in the lab since the late ’60’s, but seem to have been abandoned more recently, except for research purposes involving monitoring of retroviral vectors. Maybe one of the scientists reading can explain why this test isn’t clinically available? Why wouldn’t it be useful for MS, for example, given the suggestions of the papers above concerning that disease? Maybe some money to be made here, for any diagnostic test patent seekers who might be reading.

Ali remains on Viread/Isentress and continues to be surprised by greater than expected resilience, e.g. rapidly recovering from having her wisdom teeth extracted. I came off Isentress a couple of months ago and didn’t notice much of anything. It didn’t seem a good idea to stay on monotherapy and someone already committed to the experiment needs to give a protease inhibitor a try; therefore, I started Lexiva two weeks ago.

There was a recent paper showing that amprenavir inhibits XMRV in vitro (Li/Wlodawer on the side bar), but also, there are several clues in the literature that suggest that it might inhibit MLV proteases more broadly. HIV treatment wasn’t truly effective until PI’s were added. The first time I tried Lexiva, as a fourth drug then, still using an HIV model of HAART, it had the unexpected effect of CNS activation and it is doing that again. I describe it as “turning up the volume”, a perceptual shift. I am more reactive, but that is dying down now. It doesn’t do this with AIDS patients and I have no explanation, other than it moves the disease in some way, since I don’t see how it is an adverse effect of the drug. The other arv’s shook things up for me for a while too, but that felt like an inflammatory flare of usual symptoms. Physically, I think I feel a bit better, stronger in the last few days, but it could well be the swing of the pendulum. I will stay the course and report.

Here is a letter that I received a few days ago:

Dr. Deckoff-Jones,
I’m writing to you in the hope that by sharing a little of my medical history I can help. If XMRV is totally out of the picture it must in my case be a related retro-virus. I think if there were a place to pool ME/CFS patient information there might be something made obvious through comparative analysis.
I started on AZT about a year and a half ago On 3/6/10, my health seemed to gradually improve, by december I developed pain on the inside of both legs so at the end of december I stopped taking AZT. I declined rapidly and by the first of February I was worse than before I started on AZT. A few days into February I started taking Viread and Isentress and felt even worse for the next 10 days to two weeks (which I had read to expect this) I actually kept busy just to take my mind off how bad I felt.
Gradually I started to feel better and by the end of May of this year I thought I was well on my way to a normal existence. I think it was July and September I declined. Today I am definitely better than when I started but still far from my goal. I don’t want to stop taking anti-retrovirals.
I’m wondering if I would have done better if I had included Emtricitabine and if I should start now. I will discuss it with my doctor. If a yet unknown retrovirus is the culprit, it’s anybody’s guess as to which drugs are most effective.
I think the best course of action would be to find the cohort who have responded to the three above mentioned drugs and divide them into groups to see how they respond to other (additional) anti-retrovirals.
I think everyone affected would be perfectly okay with finding the treatment before finding the cause. Even if it’s a small subset of patients, we will have chipped away a little at this stumbling block we call ME/CFS.
I have had this for 18 and 1/2 years and I’m about to turn 64. So like everyone else I want answers now.

Sick patients trying to figure it out on their own, the ultimate failure of an ineffectual system. Scientists not only don’t talk to patients or doctors, they don’t even talk to each other, since somebody might steal their ideas. All closeted, each guy alone in a lab looking at a little piece of the elephant, writing in notebooks with pens?!! No copies? It seems even more dysfunctional than our broken medical system, that a dispute between a scientist and their employer can result in the hopes of an entire patient community being dashed on the shoals of intellectual property law and the criminal justice system.

I would like to thank Dr. Lipkin for being the voice of reason in an insane situation. He is positioned to help us. I hope he stays interested in our plight. We have very few friends, but maybe one new one who has the wherewithall to crack the case.

I maintain a confidential elist for patients taking antiretrovirals. Anyone reading who is taking arv’s and who would like to be signed up, please contact me: jdeckoffjones@gmail.com

Today’s song: If Not Now
by Tracy Chapman
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210 thoughts on “Experiments In Vivo”

  1. >Thank you for your calm voice and the reassurance of your sharing your experience and Ali's experience. The progress both of you are making is encouraging.

    I also thank Dr. Lipkin for his interest in M.E. I hope he will continue to pursue research in this area.

    Patricia Carter

  2. >I'd be really keen to know which ME/CFS sufferers seems to be having luck with ARV's. The ones who have more pain and infectious type issues or the ones who have more autonomic and fatigue issue?

  3. >Heartfelt song. I would really like to see compassionate use of existing anti-retroviral medications for those who are willing right now.

    Sitting here with my ears screaming/inflammation/pain/exhaustion and unable to sleep. Wondering how many years is enough.

  4. >Well the use of ARV's seems to be safe for this study and is being funded by the NIAID. What could it hurt for people that are already near death from this illness? Doesn't make sense:

    In July 2011, two PrEP studies demonstrated the safety and effectiveness of both oral tenofovir and oral tenofovir/emtricitabine at preventing HIV infection in heterosexual men and women.

    4.Who is participating in the VOICE study, and where is it being conducted?
    The study team has enrolled 5,029 sexually active, HIV-uninfected women ages 18 to 45 into the clinical trial, which is taking place at 15 sites in South Africa, Uganda and Zimbabwe.

    5.Who is funding the VOICE study? The National Institute of Allergy and Infectious Diseases (NIAID) is sponsoring and funding the VOICE study with co-funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and the National Institute of Mental Health (NIMH), all part of the U.S. National Institutes of Health. The co-sponsors are CONRAD of Arlington, Va., and Gilead Sciences Inc. of Foster City, Calif.

    Gilead Sciences is providing tenofovir and tenofovir/emtricitabine tablets to the VOICE study team free of charge, and CONRAD is providing tenofovir gel and gel applicators. Oral tenofovir is known by the brand name Viread. Co-formulated tenofovir/emtricitabine is known by the brand name Truvada.

    6.Who is conducting the VOICE study?
    The study is being conducted by theMicrobicide Trials Network, which is funded by NIAID with co-funding from NICHD and NIMH.

    Leading the VOICE study are protocol co-chairs Zvavahera Mike Chirenje, M.D., F.C.R.O.G., of the University of Zimbabwe in Harare, and Jeanne Marrazzo, M.D., M.P.H., of the University of Washington in Seattle.

    7.When did the VOICE study begin? When are results expected?
    The VOICE study began in September 2009, and results are expected in early 2013.

  5. >dr. jamie.

    we continue to be very lucky to have your voice and your research skills as part of our community.

    and "ditto" regarding lipkin!!!!

    rivka

  6. >"Sick patients trying to figure it out on their own, the ultimate failure of an ineffectual system."

    Does the Occupy movement know about this?

  7. >Very glad to read this. Please let us know what makes you feel better and your daughter, too.

    What should I suggest to my doctor? Any of the ARV's? I'm not sure where to start.

    And, someone should write a study and summary of gynecological problems women with CFS encounter. I had years of excruciating pain, which was finally diagnosed as adenomyosis and endometriosis, pain no painkillers could stop.
    And I had bad reactions to medications, so surgery was the solution. It actually helped and stopped the problems and pain. But no one should go through that unless they have to.

  8. >Dear Dr Jamie,

    As Rivka said, we are so very fortunate to have you shed light on the darkest corners of this illness and hence find ways to challenge the medical world to respond.
    You do a fine and noble thing by sticking your head above the parapet,(in spite of some of the malevolent criticisms you have received), to say what you know to be right. Thankyou.
    P.s. Loved the Tracy Chapman song

  10. >Beautiful Tracy Chapman. I'd forgotten how wonderful are her singing and guitar playing.

    And she's right, "If not now, then when? The moment has arrived." True for a lot of things, CFS treatment being a big one.

  11. >Jamie, you should find this of interest.

    http://multiple-sclerosis-research.blogspot.com/2011/09/case-report-is-ms-caused-by-retrovirus.htmlCase report: Is MS caused by a retrovirus?

    In response to an email request for more information on the following case report:

    Maruszak H, Brew BJ, Giovannoni G, Gold J. Could antiretroviral drugs be effective in multiple sclerosis? A case report. Eur J Neurol. 2011 Sep;18(9):e110-1. doi: 10.1111/j.1468-1331.2011.03430.x.

  12. >The first medication that helped against HIV was AZT. AZT was a anti-cancer drug. Would you therefore say that HIV/AIDS is actually a form of cancer?

    The only fact you hang your hat on is that anti-retrovirals help in one case of cancer (not even ME/CFS). That is encouraging and should be followed up – but you don't even consider that practical all drugs have multiple pathways in which they act (which comes handy in off-labe use). Both you and Dr. Snyderman said so that it isn't XMRV. So what kind of evidence do you have that it is another retrovirus? I have seen none. None from you. None from Dr. Snyderman. And none from Dr. Mikovits. Only wild speculation. Show me the evidence.

    I'm sorry to say it, but you have gone completely into "Epileptic Tree" territory. Which is sad, because you delude yourself and endanger your patients (or do plan to do proper phase I-IV studies of anti-retrovirals in ME/CFS?). But furthermore the result is ME/CFS patients running around spreading wild "Epileptic Tree" stories about "HGRV" (or maybe other retro-viruses!!!!11!) and just play into the hand of the shrinks like Wessely. This is not science, this is quackery what you do.

    You do a disservice to the patients, to the medical community and to society.

  13. >Tony Mach said:
    "The first medication that helped against HIV was AZT. AZT was a anti-cancer drug. Would you therefore say that HIV/AIDS is actually a form of cancer?"

    I would rather say that both AIDS and some forms of cancer are caused by viruses.

  15. >One sequence supposedly taken from patient VP-62 by Silverman was actually a sequencing artefact. The real xenotropic sequence was extracted from patient VP-42. A polytropic segment was isolated from patient VP-35

    Other different xenotropic sequences were detected by Switzer.

  16. >The murine related retroviruses detected in people with ME are polytropic not xenotropic. XMRV is just an acronym for xenotropic murine related retroviruses.

    Forgot to add this to the above.

  17. >Recent docket activity from Washoe County Court in re: CV11-03232 – WHITTEMORE PETERSON INST. VS. JUDY MIKOVITS:

    15-DEC-2011
    01:36 PM Ord Denying Motion
    Entry: FOR RECONSIDERATION; DENYING MOTION FOR STAY; SETTING OSC FOR 12/19/11 AT 9:00 AM – Transaction 2648494 – Approved By: NOREVIEW : 12-15-2011:13:36:26

    19-DEC-2011
    10:43 AM Heard …
    Entry: COUNT GRANTED DEFAULT JUDGMENT IN FAVOR OF THE PLTF + ATTY'S FEES

    Hearing was today, and what exactly does this mean?

  18. >I wrote this for a federal CFS conference on Feb. 8, 2000. It sounds like it was written yesterday.

    We who are advocates for CFS, we who have suffered for years with this horrible disease are tired. We are tired of playing Charlie Brown to the government’s Lucy with the football. Are we serious about this very real disease or are we going to sweep it into the somatic disorder waste basket? In Dr. Moren’s introduction to the conference he wrote, “Despite two decades of research, scientists have been unable to link a majority of CFS cases to a microbial or environmental agent, to identify an immunologic basis for illness, to find a common pathogenic mechanism or physiologic pathway, or to identify a diagnostic marker.”

    This is not surprising. Twenty years plus almost no funding equals almost zero. If one hundred years had elapsed with little or no research the result would still be almost zero.

    Think about where you live. There are ten sets of human footprints on the moon. All of them are American. This is the time, this is the place, this is the nation that can find the cause and cure for Chronic Fatigue Syndrome. We can spend the money and employ the researchers who will solve this disease or we can pretend that this disease does not exist, that it is just some new aberrant form of depression. The choice is ours. The burden of guilt will be ours if we fail.

  19. >Oh, gosh, I hope that Judy Mikovits does not have to pay WPI's attorney's fees.

    I had a sinking feeling that much of the entire hoopla is about money — and big money, at that.

  20. >It means the rich and powerful used the system to get what they want, cynically playing the victim card, forgetting who the real victims of this war are. A pyrric victory. Wantmore's, get over yourselves!

    Whittemore-Peterson Institute Prevails in Lawsuit
    http://www.mynews4.com/news/local/story/Whittemore-Peterson-Institute-Prevails-in-Lawsuit/UdA8q-xp2Ui0UbxkZPRKnQ.cspx
    The WPI has prevailed in a civil lawsuit against a former researcher who was fired earlier this year.

    Disgusted. Reminds me of Hillary Johnson's prophetic quote in her famous speech "The Why" at the 2009 IiME Conference: "Its not enough to wound the lion. You must kill it." CDC did kill Elaine de Freitas, and WPI may have wounded Judy Mikovits, but the more they try to bury her the more we see who they truly are.

    Judy is "winning" at the NCI lab with Frank Ruscetti thanks to Ian Lipkin, who agrees that as PI of an RO1 grant she was entitled to her own notebooks; and the right to take that grant with her. Right on the money there Kathy d.

    WPI is dead, long live the new era of research that has risen from the ashes of this disaster.

  21. >Ditto, ditto to Anonymous 10:28 p.m.

    Just read further at ME/CFS Forums that WPI did prevail in the civil court, and can collect damages from Dr. Mikovits.

    How far can they go? If they're ruthless enough, they can go after her bank accounts. What about her house?

    She lives in California, right? And her spouse should own half of their assets. Can that be sought also?

    I knew in my guts that much of this was about money, that somehow the institute was going to mercilessly go after whomever they saw as taking away their funding sources.

    So now they've gone after their former scientist.

    What does this say about our "justice system"?

    Once again, to quote the above passage, the rich and powerful get what they want through the system. It's so transparent and outrageous.

    Wish we could set up Occupy Reno!

  22. >"Judy is "winning" at the NCI lab with Frank Ruscetti thanks to Ian Lipkin, "

    Where is the transparency then?
    Here is what Dr Yes had to say about this study.
    Part 1 of 2

    Still not a word about using a set of positive samples from the WPI, as many – including Ila Singh recently – have been pushing for. It really makes no sense not to. If Lipkin is so concerned with the risk of 'cross-contamination', then they can run those samples separately, after testing the newly collected samples.

    Quote
    But Lipkin tells the Health Blog that everything they are doing is designed to make it possible to finally end the debate over whether XMRV is associated with CFS.

    This is an extremely disturbing statement, as others have noted. It is so uncharacteristic for a scientist to use such language that I'd like to believe Dockser-Marcus poorly paraphrased here (but somehow I doubt it). Lipkin himself, in his article "Microbe Hunting", makes the point that no research effort into a disease association, no matter how well executed, can be considered definitive. He even offers the cautionary example of a previous study he coordinated that found no association between Borna virus and CFS; he notes that over a decade after that study was completed, technological refinements allowed the discovery that genetic diversity of the virus was greater than they had originally been aware of, and that some strains could potentially have escaped their "net".

    I sincerely hope that he did not claim his study could be so definitive; it would be extremely unscientific to do so. A single study conclusively disproving a disease association? Even several well-designed studies cannot technically "disprove" anything; they can strongly suggest, but science is open-ended, due to the limitations of our understanding, our tools, our execution, and to the unpredictablity and complexity of nature itself. Personally I have never heard such language being used in relation to a scientific question of such major importance, and especially not a mere year after the initial published discovery of a disease association. It's shocking to hear it. Unfortunately, this same language was coming out of the NIH when this study was first announced.

    Whether this study turns out to be positive or negative, the approach is wrong and should not be repeated. The idea that it can possibly 'finally' 'settle' this question is ridiculous and dangerous. Things can go wrong with a single study, no matter how many labs are involved. It's too early yet and we know too little about this virus (or viruses), including the range of genetic diversity, to think we have a definitive handle on how to find it. There have been too many problems in detecting it already, indicating that more work has to be refine collection, processing, and detection techniques. There hasn't been consistency even within the positive studies. And we still don't know what the tissue reservoir is, yet this study is looking only at blood. How can you prove or disprove a disease association if you don't even know the best place to look for the pathogen?? (Or how best to find it, or what sequences to look for with PCR, or why looking for certain sequences doesn't seem to work? There are 500 isolates sitting unsequenced at the WPI; wouldn't it make more sense to look at those before assuming you know exactly what you're looking for?) And, of course, a set of 'known' positives should be included… though even this would not make the study definitive.

  23. >Part 2 of 2

    Also.. what if not all groups find virus in sufficient numbers (or at all); how does that solve anything "once and for all"? Unless they all find it, I would assume the study would remain inconclusive. They would then have to go back and find out what the problem is and try again. Essentially they have created another Blood Working Group, not designed a study.

    The correct thing to do would have been (and still is) for the NIH to create an initiative to fund a series of studies over time by the WPI and other labs investigating XMRV in ME/CFS, preferably using the Canadian criteria. What we need more than ever (finally!) is good science. Quick and dirty, or even "quick and probably clean", cannot be expected to sufficiently answer scientific questions, and should definitely not be allowed to do so for a question of such great significance to public health.

  24. >Anon @12:15pm there are many known retroviruses linked to most cancers and neuro-immune diseases, they're cleverly called "rumor" viruses to make the link seem tenuous at best. Just don't mention the cancer clusters that scream of infectious etiology, stick to the story that the cause is unknown and the crude and barbaric chemotherapy and radiation (treating cancer with cancer causing agents) are the best "modern medicine" has to offer.

    Dr Snyderman would not be alive had he accepted the recommended treatments for his cancer (and ME/CFS), his experiment with ARVs saved his life and will potentially save many more people from the horrors of current cancer "treatment". It took the establishment 20 years to admit bacteria cause ulcers because it threatened big pharma profits, we can expect an even bigger fight over retroviruses and ARVs.

    Human RNA “Rumor” Viruses: the Search for Novel Human Retroviruses in Chronic Disease (2008)
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2268285/
    TABLE 2. Putative association of human diseases with retroviruses

  25. >Kathy d. I love the idea, but since we are not physically able to go to Reno, we could OCCUPY WPI on their facebook page and set up an email campaign too? I know you and Dr Yes are highly respected at mecfsforums, if you start it I bet fearful anons like me will come out of hiding and join the protest. We have to do something!

  26. >I'm not known at ME/CFS Forums. I've never posted at any of the formally names ones,

    That is a good idea, an email campaign. Where would we send the emails? Ideas?

  27. >"Scientists not only don't talk to patients or doctors, they don't even talk to each other, since somebody might steal their ideas. All closeted, each guy alone in a lab looking at a little piece of the elephant, writing in notebooks with pens?!!"

    JDJ – you have absolutely no idea what goes on in research. Stop making bold and stupid claims that have no basis in truth.

  28. >Reposting

    As we don't know who returned material to the WPI, and who has Judy's notebooks, shouldn't the authorities find out who did return the other material in case they have the rest?

    Alternatively the WPI could always say who returned whatever it was.

  29. >Kathy I got you confused with someone else which I hope you will take it as a very fine compliment! Yes the news is in, Harvey W. got his friend the judge to see it his way and Judy must pay WPI attorney fees, damages to be decided 10th January.

    WPI got their "irreplaceable" property back but its not enough – they want Judy's personal notebooks too. Oh dear the poor Wantmore's want more! They prevailed in wounding her but Judy has prevailed scientifically so they intend to go for the kill and ruin her financially!

    Wildaisy and the International M.E. Association have a group card they intend to send to Annette Whittemore:

    If you want to ask Annette Whittemore to stop the legal actions against Judy Mikovits, here's your chance to ask her. Please write your message and sign this group card: http://www.groupcard.com/c/Qr85BtPOG5R

    Here's Annettes email addresses: annette.whittemore@wpinstitute.org
    annettew8@gmail.com

  30. >Anon 2:12,

    If you are a scientist, then please edify us as to why there is a big legal battle happening in Reno over notebooks. How do you record your experiments? Are there multiple copies? Do you share them with other scientists and, if not, why not?

    Jamie

  31. >@ Tony Mach,

    I took down your comment not because you disagree with me, but because what you said was inappropriate.

    Jamie

  32. >The Ubiquitous Kathy D. said:

    "Oh, gosh, I hope that Judy Mikovits does not have to pay WPI's attorney's fees.

    I had a sinking feeling that much of the entire hoopla is about money — and big money, at that."

    Oh gosh, golly Kathy! Did you ever think it might have something to do with the fact that Mikovits committed a crime?

    Occupy WPI. Sheesh.

  33. >Notebooks are NOT personal. They do NOT belong to you, scientist. They belong to the institution you work for. AND ONLY to them.

    You have NOT rights to take them with you, indeed, all this is written in your contract. There are legal documents to be signed once you leave a research institute concerning handing in the notebooks. If you do not leave them you do not leave.

    A scientist.

  34. >Right Beav yeah lets feel sorry for the poor rich people who must be the victims here? But what's that I hear, the evil criminal scientist made their daughter well? Oh how horrible to be that poor girl. What's more, the rich can use the system to get any result they want, and can destroy anyone who gets in their way? I see the problem now, the evil scientist who made their daughter well didn't drop off the planet once they were done with her. She even got a better job, how dare she show them up! Oh those poor rich people, what they have to do to get by!

  35. >Gosh, people, we all have a right to have opinions and to be partisan and defend and sympathize with a scientist — and one who is trying to help those of us with a horrific disease. Does anyone ever think about all of us?

    This blog is not a courtroom. It doesn't have legal standing. We are not attorneys, judges or jurors. We are people with a debilitating illness.

    Take off the rich, powerful and highly connected glasses and look at this entire debacle.

    There is also a point that intellectual property is contested all of the time. There are attorneys who specialize in taking cases defending researchers on this issue.

    The research notes are products of Judy Mikovits' work, time, effort, thinking, creativity, knowledge, etc. The fact that WPI wants her personal notes, not only her institutional notes is absurd in my opinion.

    It's all her work. Last time I checked employees are not owned by their employers.

    Look at this from CFS sufferers' points of view, not like a Supreme Court justice or a millionaire who is used to using the courts to get his/her way.

    What is best for us? What gets me is that Dr. Mikovits' knowledge and experience can be used in Maryland at her new lab to help further scientific research on CFS. This whole travesty is depriving us of the research and knowledge in her notebooks. It's as simple as that! And I'm focused on CFS being understood and treated. Whatever will help I'm for.

    She is the one who knows what's what, and Ian Lipkin defended her right to her notebooks, as a scientist who is trying to figure out the cause of this disease. He knew what is the principled stand to take and he took it!

    And absolutely no one is going to convince me otherwise. I'm for research first and property last.

  36. >Not to mention the high finances involved in this travesty. I've always thought that at the bottom of all of this was grant money, donation money, and lots of it.

    Not only does WPI want to break Dr. Mikovits' research, but her financial well-being and her spirit. I really hope this doesn't happen.

    They want everything that is the product of her mind, education, work, etc.

    She has a lot to contribute to CFS research. I hope she can do it with all of this going on.

  38. >And if you really want to make a meaningful contribution to ME/CFS research with a grassroots crowd-sourcing anti-retroviral study (I would sympathize with that), you should make sure that

    – You have someone on board who can critically design such a study. Play devils advocate. Look at all possible problems. Look at everything that can go wrong. Make the study meaningful. Don't you have a university somewhere near? Maybe you can find someone to do just that. This one-woman-Rambo-army thing you try to do only works in movies, in real life you need other people that your critically work together with.

    – Don't downplay negative data, don't inflate positive data. Somehow I doubt that you can do that. You went around in blog advertising XMRV very loudly. When that turns out to be a flop, you mentioning it in a half sentence, only to proclaim loudly and repeatedly that is some other gamma-retrovirus. What when that is a flop too? Half a sentence of "might have been wrong" with loudly and repeatedly proclaiming that is some other, maybe unknown retro-virus? Are giving you giving "No, by the way, that XMRV thingy might have been not so, I think" equal room to "IT IS XMRV WE AR AL GOING TO DIE!!!1!!!"? Why not?

    – Stop this Monty-Python-Witch line of reasoning of yours. Stop speculating as it were fact. Stop conflating the few facts you have with untested hypothesis of yours. Base you hypothesizes in reality. Stop baseless speculations. Take one step after another.

    But collecting emails from people you never met is only going to confirm your biases, whatever they are. This will do nothing to advance the science to help our disease. I beg you, stop being a quack, start being a doctor – currently you are hurting people.

  39. >ARVs are so safe they are giving them out like candy to HIV+ healthy people. The research on Polytropic Retroviruses stands and is further confirmed by Next Generation sequencing.

    However Tony Mach is being more than rude and inappropriate here, this is revenge for taking down his previous comment Jamie. He's not here to help, he's obsessed about bringing you down.

  40. >@ Tony Mach,

    The study you want (and I want) is a very expensive undertaking. As for my right to free speech? Everything I have said and done is not only legal, but ethical as well. You are free to frame your illness as of unknown etiology if you like. I think mine is retroviral and my doctor is treating it accordingly. If you have a doctor who disagrees that you trust, by all means take his or her advice. You are free to accept that there is no meaningful treatment for your disease. I don't accept that.

    Jamie

  41. >And Tony,

    I don't have the ability to edit the comments of others. Nor would I ever do that. I again removed the post where you threatened me. It is strange that you want to censor me because I am a doctor and have a basis for an opinion.

    Jamie

  42. >I deeply sympathize with you that you need to treat patients and/or yourself in a situation where there is insuffiecent medical knowledge. As a physician you need to try things that are unproven, simply because nobody tested them. They might work, they might not work, while there is nothing that is proven to work. But you need to say so, loud and clear. Yet you make the impression that you are certain of what you. How is that? Do you fail to realize that you provide any evidence whatsoever to convince critical people?

    And we share the human need to have an explanation. "What is it?" "How does it work?" We strive for explanations even when we don't have enough knowledge. But these explanations can be wrong. One has to put all eggs in one basket sometimes and push with this "set answer", but you seem to not realize that these kind of all or nothing decisions can be wrong. And you make the impresseion that is settled in your mind. Do you really think that? What makes you think that?

    You fail to provide evidence for your claims that a (gamma-)retrovirus causes ME/CFS, while at the same time ruling out any other explanation. Extraordinary claims require extraordinary evidence. So were is the evidence? I see none. You provide none whatsoever.

    I am at a loss how you come to your conclusion. Make your case! Nobody is cencoring you yet. But I wish somebody will, if you continue to fail to present any evidence for your outlandish claims.

    You do understand why I might not be the only person who might think you are a quack?

    I am only the messenger here and I want hammer this messag to you loud and clear: You need to critically review the evidence your have and the certainty with which you draw conclusions from that evidence.

  43. >Once againt, sans what you perceive to be a threat (yes, it is a threat, but you are only threating yourself).

    Who is going to make sure all these patients that write to you have a proper diagnosis? Who is going to make sure the treatment is correctly adjusted? Will you make sure that all adverse events are reported? Will you make sure that positive effects will not be over-reported? What metrics are you going to use? Did you ask yourself even one those questions?

    And all people who write to you (and believe in you, and believe in your retrovirus fairy tales) will feel a obligation to underreport adverse effects and overreport positive effects. And people who are not helped by it, even when they believe in it? Will they feel that they have failed you? Will they take it as their fault? How are you going to handle that? You are way out of your depth here and you have no idea what you are doing.

    And how are you going to handle negative effects? People that drop out? Or even people that die? What are you going to do then? Are you going to report it? Or are you going on, just like the cults after the "end of the world" date has come and gone and they make a story why they have been spared? Are you going to make up a story that it was maybe the wrong anti-retroviral and we need to take a different anti-retroviral?

    Just look at the PACE study! You are doing the same thing, but instead making yourself believe that ME/CFS patients are crazy hypochondriacs and need CBT and GET, you make yourself believe that they have a retrovirus and need anti-retrovirals! Both is not based in reality, but anti-retrovirals are arguably more dangerous! Fuck yeah, what a grant idea, doing this redneck quack "study" of yours.

    What you do is unscientific. It is irresponsible. It is highly unethical. And it most certainly does not conform to medicals rules for the test, development and advertisement of treatments. Why do you think you can ignore the rules of the medical profession? Because the medical society has turned their back on our disease, does that give you the right to abandon the rules medical conduct? There is a reason for these rules made e.g. for the different phases of treatment studies, you know.These rules are there to sieve out the quacks. Quacks who make wild claims about diseases and their cures. And by Darwin, you are way into quack territory by now.

    You have switched off your critical thinking and set your course – it must be retroviruses and there can be no other explanation – and you are heading for a head-on collision with reality. And by Darwin, I really hope you collide with reality rather sooner than later. As I don't think you are capable of critical thought and changing the direction you are going (which would be much more preferable if you started to think critically).

  44. >And please, please, please, heed the words of Elaine DeFreitas:

    "In retrospect, I say I did the disease a disservice. I might have done the patients a disservice, and I might have done the field a disservice."
    – Elaine DeFreitas (page 682 "Osler's Web")

    You bumble through our disease with your public speculations as if this were the yellow press.

    Don't do us a disservice. Make proper science. Is that really to much to ask? Or is that "inappropriate" from me to ask from you?

  45. >And is this a free speech question to you? Not a medical one? So you ARE the yellow press and not a doctor.

  46. >And you take umbrage that I want to censor your? Currently, you are the only one that is censoring. Oh, well, your confirmation bias is so strong, that you have to defend it by deleting comments. Figures.

  47. >Tony,

    You seem more upset than you are at denialists.

    Denialists throw people into mental hospitals.

    Take a deep breath?

  48. >And I am sorry that I had the misconception that you want to discuss medical science regarding ME/CFS here. This is obviously the "Jamie Deckoff-Jones MD Gazette", which basically consists of the op-ed column titled "I want to see the world how I want to see it!".

    And well, I'm an idiot, I should have known better! You quite clearly state that you are not only not capable of interpreteting, no, you said that you are in fact ignorant of the slides that your friend Dr. Mikovits produced. Doh! (But boy is it ironic that you published the seceond one here in your "There is only one Dr. Mikovits and Jamie Deckoff-Jones is her prohpet" column)

    Here is one for your "CFS patients write, Jamie Deckoff-Jones MD answers" column:
    I have evidence that I have a delta-retrovirus. What anti-retroviral go best with it? And my autistic dog does seem to have retroviruses too. It is quite clearly not VP62. Should I have him put away, before he causes a pandemic? Please write back, nobody else believes me!

  50. >Tony please start your own blog and take it there. You're doing everything you accuse Dr Jamie of except you don't have the experience and the education she has to back up your opinions. You only illustrate your biases.

    You don't know what goes on on the elist of ARV users. You really don't. It's not at all as you have portrayed it. Take your own advice and stop speculating on things you know nothing of.

    The rest of us are quite capable of discernment while reading the opinions (yes, she calls them that) of Dr Jamie. We don't need you to think for us. Thanks anyway.
    -Oerganix

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