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. >Cfs is a group of diseases. What is your issue with that? Where is the anger or slander in that? No body can change this. CFS is a catch all for ME, fatigue, and so on. Some CFS criteria such as Oxford exclude ME. You may for who knows what reason find that upsetting, but this entity is killing patients. Nothing can be singled out as a marker when we always insist on throwing everything together.

  2. >Well said, Kathy D. We need to find ways to support one another, since as a community, we are in shock. It is a very dysfunctional family, plus the internet allows strangers to enter with disinformation.

    Please everyone, be kind to one another, even if you disagree. Even if you think someone's comment is dumb or annoying. The discussion we are having is important. Don't discourage anyone's participation or good intentions. We're all bozos on this bus.


  3. >Well, Anon 10:07 PM. Besides an anonymous commenter taking a gratuitous swipe at Kathy D, who is clearly participating for all the right reasons, somebody on Phoenix Rising likened the behavior here to the bar scene in Star Wars. While the analogy is amusing, what's happening here lately isn't constructive. I'd like to transition to something that better embodies my intention, which is to help.


  4. >Oh I see. It gets confusing on the blogs. I thought Kathys comments was from Paula earlier in response to my comment. Although I now see which comment you mean. Sorry Kathy & Paula mixed up posts and intentions.

    If I recall in Star wars one alien had their arm chopped off and another was shot, I think it depends on the clientele you let in. Lately around here some of PR have been about. I think we should bear in mind that there are many knocking about who really don't give two hoots about patients or science. In some ways it can help in learning to deal with them if people accept what they are.

  5. >I think it would be helpful if, instead of hinting darkly about what forums some posters visit (PR, ME/CFSforums, etc.) we discuss this calmly in terms of science, logic and values. If you find someone off the wall in those terms, then fine. Ignore him/her, or discuss it calmly. But alluding to what forums someone visits and what that does or doesn't mean is guilt by association. Keeping an "enemies list" didn't work well for Nixon, and it won't work for us.


  6. >Forums are like political parties. Some will hang around them to see what they are doing or saying, but others are fully fledged members of those parties and very welcome to talk the talk that is permitted on them. Forums are never neutral territory with any topic. I think patients are more than aware of that some "fatigue" forums are constructed to maintain the status quo.

  7. >@ Anon Dec 3 7:40 PM

    Please define 'unusable' affidavit. Such a term is ridiculous.

    WPI has Lombardi, who, like Mikovits, was a co-author on the Science paper, but who, unlike Mikovits, actually signed the partial retraction. Mikovits doesn't get to take her money because it's not hers; it's the institution's.

    Also, conspiracy to commit a crime is equivalent to committing the crime in terms of punishment, even if one did actually steal the notebooks, in this instance. Of course, they'd have to prove it, but Mikovits returned the notebooks, and Pfost's affidavit is uncontested at this point. Heck, it's pretty obvious since she returned them.

    Also, use your real name. This anonymous stuff is ridiculous.

  8. >We disagree on the point about the grant and the notebooks, as we are actually not lawyers and judges, but individuals who are ill and who have opinions — and want all the help we can get on researching causes and treatments for this horrendous disease — on a human and moral level.

    But we can't get into the legalisms. That is being dealt with by lawyers and judges, etc.

    And someday we'll find out what happened, hopefully, but maybe not. There's nothing we can do except put our hopes into research that is going on, and wait to see what further research goes on at any institute or by any researcher that will help us.

  9. >@Brad

    Didn't realise you wanted everyone to use legal language. Then again, who are you?

    The affidavit we have been presented with on the web was not taken by the police and Max did not have a lawyer in attendance or have his Miranda rights read. His real affidavit to the police is not public, neither are the others. Saying it is uncontested is incorrect as we have the lawyers comments and no access to those real affidavits.

    What money are you saying Mikovits couldn't take with her? She gave away her discovery for free didnt she?

    No one has been found to have committed any crime. Who owns the materials that were said to be stolen? That's what the civil case is tackling. The conspiracy is your interpretation and Max's from the unusable affidavit. If anyone ask for their notebooks, that does not automatically mean conspiracy. Did Mikovits even return these notebooks? We don't know. The details are not known at all.

  10. >The Dec. 5 Science Insider article said that Dr. Mikovits turned herself in on Nov. 22 and turned in the lab notebooks to the Venture County Police.

    Her attorney, Scott Freeman, is quoted in the article affirming her legal rights.

  11. >A report from a journalist should always be taken with a pinch of salt. Who had them? What notebooks? Are there more than one set of notebooks? All material on Lombardi et al. is in the public domain. Scott Freeman doesn't confirm anything about notebooks in quotes.

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