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
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.
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.
>Dr. Deckoff-Jones isn't the only one feeling like she's fallen down a rabbit hole. Many people with M.E. are feeling the same. I know I am. I had so much hope and so much faith in the Whittemore Peterson Institute. Now I wonder how I could have been so naive. I appreciate Dr. Deckoff-Jones telling us the truth about what happened. No matter how unpleasant it is, I would rather know the truth.
Patricia Carter
>A medical student in the ER is quite a poor analogy for Judy's position. As you should know perfectly well, the CEO of a research institute is in a much different position to the scientists than an attending physician to a medical student! If this weren't the case, you wouldn't be arguing that Judy "owned" her research materials. It is appalling for you now to be infantilizing Judy Mikovits and pretending that Annette Whittemore should take responsibility for Judy's actions. On the one hand, you argue that Max Pfost was fully capable of acting independently of Judy, on the other that Judy's behavior is Annette's responsibility. You can't really have it both ways. In fact, Max was in a position not very different from that of a medical student in the ER, in relation to Judy, that is. And she appears to have miserably abused that power. I don't see how you can go on justifying this, yet try to paint the Whittemores as abusive. You are just willfully tangling things so that Judy stays in the clear in your eyes. Amazing feats of self-delusion.
>that song is perfect. it had been running around my head lately, too. thanks for speaking out – i'm not mad at you for waiting or for talking. you did the best you could with the situation, sucky as it has been. take care. we're all trying to hang on.
>@Anonymous 15 10:17 PM
All of the people involved in this WPI situation are adults and each is responsible for his/her own actions. Yes, Max is responsible for his actions. Judy Mikovits is responsible for her actions. Annette Whittemore is certainly responsible for her own actions. We do not need to look to anyone else's actions to know that Annette was both incompetent and overreaching in her management of WPI. That is what she is responsible for. Without her actions, this situation could not have happened. Her own actions incriminate her.
>Anon 10:17 PM,
Take exception with the analogy if you like; maybe it's a bad one. I want Annette Whittemore to take responsibility for Annette Whittemore's actions. It is appalling for you to be passing judgement before we know what happened. Or why. I'm sure mistakes were made by everyone, but the way this whole thing went down, Judy has been victimized, is being victimized. And so are the rest of us.
Jamie
>I feel the same. But the truth is always best. Here's a story about finding out the truth. My mother found a small lump on her breast 5 years ago. It was near the skin and the size of a pea. She had a mammogram and it showed nothing. She had previously set an appointment to see a surgeon to check the lump. She called to cancel the appt do to the mammogram result. She was scared and figured all was fine. There was nothing on the mammogram so all was fine to her right? The surgeon and I talked her out of it. He said we still like to check these things out. After the lumpectomy and removal of several lymph nodes it was determined that it was indeed breast cancer. She had been afraid of what the truth might show from the biopsy result, but ultimately the early answer and treatment saved her life. The rest of my immediate family have not been so lucky. Most of them have either a neuroimmune disease or cancer. Parkinsons and MS just to name a couple. Two have died from cancer and there is no prior history of any of these illnesses in my family. I tested positive for a variant of an HGRV by the research lab at WPI using Mikovits and the Ruscetti's methods. I was so hopeful that I might finally find possible answers for all the suffering and death in my family. Now I don't know what to think other than the plug was pulled. My hope for the answer and potential treatment is gone and it is not Judy Mikovits that I blame.
>So now its all about blaming Annette Whittemore and Judy's not responsible for the horrendous decisions she made in this fiasco?
That's brilliant and so helpful!
No wonder you are sitting in a rabbit hole…
>Dr Jamie… FWIW, I believe you acted in good faith, and I cannot ask anymore of anyone. None of us can foresee the future, and we were all hopeful. Take care of yourself.
>I share the sentiments of Anonymous above…. Sending you warm wishes and positive thoughts.
Sue
>Your explaining what you saw and what you think is fair, and it's helpful that you are doing that. You're standing up for your convictions.
As I've said, too, we don't know what all has happened behind the scenes. We don't. Maybe it will come out, maybe not.
No matter what, it is not right to bring down the power of the government on a scientist. It is bullying and so incredibly overreaching and vindictive. And it could intimidate other researchers, which could lead to more limitations and encroachment on one's rights.
What about negotiations? Arbitration? Mediation as is raised above?
It's very disturbing that funds are being spent on lawyers, including patent attorneys. That money could have been spent on CFS research.
Otherwise, again, how does any of this help us? It doesn't.
To me, again, it's the power of the wealthy and well-connected used against one person. I just don't know realistically what threat Dr. Mikovits presents to WPI that they should go all-out on a frenzied campaign against her, and spend lots of money to do so. Wonder why that is going on like this.
What do they want a patent on? The XMRV virus has been tossed out the window by other researchers. Is it other Human Gamma Retroviruses? Is it the concept? What is it?
Another website is saying that Dr. Mikovits coined the term "Human Gamma Retroviruses," and that other researchers deny their existence.
Whatever is at the bottom of all of this campaign using attorneys, money, the courts, is a really big deal to WPI and probably involves money.
I read something at another website today that said that a grant is given to an institution for certain research with a primary investigator. But that usually when researchers go to another institution, they take their research with them.
So why this all-out campaign? What's underneath it all?
Tracing someone, arresting her, jailing her, then the denial of bail for five days, then not lowering the bail … what is at the crux of this?
I hope that she is ok in the long run, that she can recover from this. The notebooks were given up, so what more is wanted? What more does WPI want that they're continuing this?
Is it revenge?
I don't know. I can guess but I don't know but it sure is overkill.
>@anon 11:18 and who's sitting pretty with her ARV's and out of the rabbit hole?
>Thank you for linking to Dr O'Keefes blog Jamie.
It begins…"Dusty Miller, greatly respected in the retroviral community"…
It is a great shame Dusty Millar and his team were not always afforded the same respect in the patient community. The actions of some mecfs patient groups has been utterly disgraceful.
Do people not realize they damage ALL patients with their bullying?
I respect you for speaking out about your experience at the WPI. Please ignore the extremist comments; they are NOT reflective of the wider patient community any more than was the vitriol sent Dusty Miller's way…(And worse was measured out to patients who spoke up about wanting to support him. Mostly from a certain small group of outspoken troublemakers.)
You are respected in the patient community Jamie. Thanks for your honesty. Ignore the vitriolic few :)
>Dear Anonymous 10:25:
Last I knew, being incompetent and overreaching were not counted as crimes. If they were, most of the blog participants here would be behind bars, along with half of the general population.
Annette may well have been incompetent and overreaching. She may have unwisely tried to set up an institute that she had no idea how to run. She may have failed to seek the kind of advice that would have made it work. She may have hired a cowboy-scientist to head her research enterprise, and she may have managed that scientist badly. She may in fact have set up an entire situation that wasn't likely to go well. But none of this seems to have involved criminal behavior, or even bad intentions.
If Judy conspired with Max to secretly take the notebooks from the WPI and to remove them from Nevada (notice that I say IF), then apparently that is (or is being seen by police as) a crime, since she has been arrested and charged. If it is true that the WPI has been trying to get Judy to return them, and she won't, that is very curious, because as many people have pointed out, it would have been quite easy to copy the material and return it. What legitimate reason could she have for not returning the material? It seems to me that a work-place really can't allow people to creep around stealing records and absconding with them. How can arresting her in order to retrieve the stolen material be seen as persecution?
For you, Jamie, to now back-track and suddenly be in a huge huff about Annette Whittemore's poor management seems disingenuous. That's apparently quite old news to everyone involved. Annette's abrasiveness or incompetence didn't force Judy to behave illegally. If Judy did so (notice I said IF), it was a choice, and apparently a fully conscious choice, since she was (according to Max) sneaking around and trying to avoid detection.
And I wish everyone would stop with the "innocent until proven guilty" B.S. That is a wonderful legal principle, but it is exactly that: a legal principle, pertinent to the judge and jury in a trial. Believe me, victims of crimes don't sit around thinking, "Oh, yeah, that's right, my mugger/rapist/whatever is innocent until he's proven guilty." And the rest of us aren't required to do so either. When Jerry Sandusky is accused by 10 boys of molesting them, we don't have to invite him over to babysit just because he hasn't been tried and convicted yet. We are even allowed to be horrified and to assume that the boys are telling the truth, unless we have some official role to play in his court case.
So, no, I don't have to assume that Max Pfost is a liar and Judy innocent until the court case plays out. I don't know enough of the facts to make any meaningful judgments about this situation, and I imagine most of us don't. But we are all permitted to share our views about what makes the most sense to us, what constitutes right and wrong in a situation like this, and so on. And to me it sounds as if Judy knowingly broke the law and involved her underling in her crime. Was she being Robin Hood? Something makes me think it won't turn out that way, given that, with Judy, things have just gone steadily downhill since that heady moment in 2009. Sigh.
>The Whittemore could have solved this easily by letting Judy have her notebooks. That would have been the only decent thing to do as she would carry on the search for a cure.
As pointed out before I don't find Judys crime to be as bad as the Whittemores…
Money and greed versus the hunt for a cure…
Of course this is a game… and WPI plays it by their rules – this includes trolls which again, as they intend, confuses some others…
Jamie, I'm with you…don't let hurtful comments ruin you.
Take care :)
Elisabeth
>How could the Whittemores have solved it by letting Judy have her notebooks, when she'd already stolen them?
Don't keep relying on that tired epithet "trolls" either, unless your definition of a troll is someone who doesn't agree with you. The patients coming out of the woodwork now to oppose Jamie's views are just as independent as you are–I would argue more so, since they don't seem to be beholden to either side in this ugly situation.
>I am so depressed and disillusioned by this entire mess that I have no more hope.
I gave everything I had to WPI and will end up in a homeless shelter soon.
With no medical care and now no more hope, I will be dead soon.
Before I go it is imperative that I reiterate that Cort Johnson is the most incredible sycophant I have ever come across in my life. Please do not buy into his dubious agenda.
Not afraid anymore because I have a sister that is waiting for me on the other side and I can't wait to see her.
Peace out.
>Dear anonymous 12:51 a.m.,
I am so sorry you have invested so much in the WPI and are taking this so hard. Please remember that where there is life there is hope, and there are actually many reasons to hope now. The WPI may turn out to have been just a side path on the way to good treatments or even a cure. I hope you will focus your energies on yourself and improving your situation rather than on supporting the research efforts, though. There are many people in a much better position to give money to this cause. It sounds like you need every penny for your own care now. Peace to you!
>I think your revealing what you did when you did was the best course.
I think it's best to wait for more info to come out before we demonize anyone here. I find it curious that some people believe that just because affidavits were filed by two employees that they are telling the full truth and that Dr. Mikovits therefor stole the IP. People do lie in affidavits. This is why judges do not render a verdict immediately after a complaint and plaintiff's affidavits are filed, but instead wait until the trial is over.
>@Elisabeth
"The Whittemore could have solved this easily by letting Judy have her notebooks."
And the old lady could have easily solved the problem by letting the mugger have her wallet.
The problem is that WPI need to have the notebooks, if alone for accountability reasons (but surely also for continuing their research). Judy could have nicely asked/mediated for a copy herself. Taking the notebooks out of the possession of the lab that responsible for them, is really a big no-no. Quite a few people could have become unemployed, if a "keeping the notebooks away from WPI"-plan had succeeded.
In fact, because of the way things (seemingly) went, it seems that the motive was not that noble as just wanting to have the information: taking away the notebooks from WPI would have been a sure way to let the NHI cease their WPI grant, after which they would have probably checked on the original PI who then, of course, would have had all the necessay information to continue the respective studies.
Anyway, Mikovits doesn't really need the notebooks to continue the research on XMRV/HGRV's/ZMRV/whetever. The information for reproducing the Lombardi et al. results should be in the papers themsleves. Or else it would be a tiny bit unreasonable to attack other researchers for not being able to reproduce your results without having access to those notebooks.
Besides, Ruscetti has his own notebooks and his experiments (e.g. serology/culture) should really be good enough in isolation (if they are meaningful).
>@Justin
Yes, people do lie in affidavits. However, it is significant that this isn't some kind of "she told me in a back alley" testimony. Pfost included many verifiable circumstances in his affidavit, and that is what (IMO) makes it a reliable account of events (although, of course, he could have still underplayed his own role somewhat).
Take for instance the "secret" gmail accounts. You can bet your butt that, when police have gotten warrents to search Meehan's and (supposedly) Mikovits's residences, they've also obtained a wiretap warrant in order to check up on those gmail accounts (if Pfost didn't already volunatirily provide access to his account).
The same really applies to other records (e.g. phone, CC).
The fact that no charges were dropped, makes it rather likely that what they've found thus far based on directions in Pfost's affidavit, corroborates Pfost's account of what happened.
>Quote: "She is probably afraid to publish amidst all the controversy." I'm sorry to ask but do you have any evidence that she is afraid, have you spoken to her? Otherwise you are leading us, again, to the rabbit hole.
We didn't fall down the hole, we jumped enthusiastically, following you and your unquestionable support for Judy and her research. No wonder we are broken, look who we followed. The research is wrong, Judy appears to be a thief, and you claim to feel like a whistle blower. You are not, take a good long look in the mirror. Shelly.
>For those who invested so much (more than hope) in the WPI – did you research the Whittemore's other business interests before you decided they'd have YOUR best interests at heart?
Judy M, Dan Peterson, Dr's Enlander, Montoya, Lerner, De Meirleir, Cheney, Bell, Chia, and a whole BIG bunch of others…I know I've missed some other important players.
If you truly believe there's no hope now, then I think you're as short-sighted now as you were then.
I wish everyone the best x.
(ME since 1986)
>Shelley, who follows unquestioningly?
Who can afford to? I'm sorry for you if you did.
I guess the power of the Whittemores, and the power of the Internet must be way more than I ever gave them credit for!
>Annette Whittemore asks Judy Mikovits to misrepresent scientific data, right?
In what way can Annette ever be seen in a good light after that, no matter what has gone on since.
AW is not Snow White.
@ Anon 3.08, no sadly I did not check out the whittemore family before I put my trust and money into their grubby little hands. Had I done so you can be sure I would have thought long and hard about it.
Daddy Whittemore looks to me to be particularly sleazy. But that is only my opinion. Just happy he is not my Daddy.
>Frankly I don't care a bit IF Dr. Mikovitz did take the materials wpi said she did. It is Dr. Mikovitz that I trust with the data and research and NO ONE ELSE. Broken laws be damned. That's it in a nutshell for me.
Sorry you are being attacked Dr. Jones. Scared and desperate people are wildly unpredictable, which is frightening. Ignore the nasty comments, emails, etc. Why should you be the lightening rod for all these mixed up emotions? You should not be. Thank you. Sharon Stapleton
>i am not sure why people are angry with dr. deckoff-jones. she almost recovered, at least for a long while, on ARV's – as did her daughter. many in her position would not have done this, but she went public because she truly believed she could help the suffering. if i had achieved the kind of recovery she did, i would shout it from the rooftops, too.
>I don't normally post but I feel the need to thank you for your Blog.
Of course we all had a request to hold back on Vitriolic comments about the WPI otherwise this could hurt Judy, I think this came about in negotiations with judy & WPI.
Some people have rather taken on board that any discussion/opinion about/against the WPI is Banned otherwise Judy will be damaged, The Word used was Vitriolic ie spiteful, vengeful etc
I am, as far as I know, allowed free speech & freedom to have my own opinions otherwise it rather feels like blackmail but we do know that they were asking that we should refrain from spiteful, venomous comments. So I wish to clarify this – we are not banned from discussing or having opinions. Judy carried out the request "IF" this was part of negotiations then of course she has done her part and cannot be held responsible if people wish to ignore that. It obviously has done wonders in keeping everyone scared of having opinions & comments though hasn't it
>JDJ wrote: “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.”
After an event, no one can ask anything more than that people tell the truth, although telling the truth can not prevent necessary explorations of why truth, or at least full truth was not provided earlier, or prevent the posing of the ‘what ifs’ that may have been a consequence of earlier exposure of the truth. Post mortems may not be happy affairs but they are frequently necessary; in the case of WPI and associated issues, future court cases whether civil or criminal may not fully answer all the pertinent questions.
M.E/CFS affected people have a reasonable expectation of answers to their many questions, it’s not surprising that given the two most recent posts on this Blog, that many are directing their questions here. I suggest that it is wrong to cast the present circumstance as though it is without any potential ‘positive’ outcome, the result may not be what people wanted, but every circumstance allows a potential for learning (at least for the survivors) and M.E/CFS affected people can learn useful lessons from the WPI case. For those who want to defend Dr Mikovits and or the WPI and or any other individual involved with the WPI presently or in the past, such defence can only be honestly made on the basis of substantive answers to incisive questioning. Innocent until proven guilty is a necessary legal principle, but outside criminal cases a less protected atmosphere has to apply if ‘truth’ is to be made evident. Dr Mikovits as much as Annette Whittemore has been responsible for the shaping of the WPI project, and both have broad areas of questioning to answer about the out-turn of the WPI project. It is after all an out-turn has seen the emotional and financial investment of M.E/CFS affected people committed to, (at least as far as the public attention it has attracted) the scientific equivalent of a Ponzi scheme. It is only by having every aspect of the WPI/Mikovits affair (every much as the PACE study or the CDC misuse of funds affair) exposed, can future M.E/CFS research be assured of validity and integrity.
>No one can at this time state Max is telling the whole truth or a whole lie or grey in between. Mikovits may have been given the notebooks or taken them in good faith or not touched them. The notebooks may not have been taken by Max or Mikovits. Others at the WPI may have taken the notebooks. We all know nothing. We don't even know if a crime has been committed.
As for evidence like email accounts. Good grief! Two people leave a reader arch institute and set up new email accounts. Do what? I've done it.
Jamie was between a rock and a hard place. I dont believe many people would have known what was best amongst this mess. I blame the Annette. The WPI doesn't now have the staff to progress the research and Judy is not able to finish what she started. HGRV research is going nowhere at this time. That is what I find unforgivable.
>I am glad you have spoken out. I am glad to know the truth even though it has floored me. I am sorry people are treating you as the 'bad guy' and whoever is sending you threatening messages/email etc should be ashamed of themselves. Even in my greatest anger at WPI I have not said one threatening word, I have only ever expressed my anger, betrayal, hurt and disappointment at the whole sorry mess.
To those who who are being deliberately hostile to Jamie Deckoff Jones for her honest telling of her part in all this then 'Shame on you…don't shoot the messenger!'
I am still 100% behind Dr Micovits…but still very hurt by lies that have been told.
>People keep thanking Jamie for telling the truth. She was physically present at the WPI for a very short time. Was she actually privy to conversations about why Annette did or did not do certain things. It seems to me Jamie thinks her ideas about what things should have been done at the WPI were absolutely correct and is blaming Annette for not doing things her way. Very egotistical. It's sounds like a vendetta to me — Annette wouldn't go with all her ideas, Annette fired her — so Annette is bad and she is whistle blowing on the WPI. Oh puhleez, it's not a crime to have bad management. It's all personal opinion anyways, and who knows what is true in all of this anyways. If Jamie is prepared to get up in a court of law and state that Annette didn't do certain things, this has nothing to do with Mikovits allegedly stealing very important research. People seem to forget that Mikovits signed a contract that transferred ownership of all intellectual property to the WPI. Therefore, she damn well knew who those notebooks etc belonged to. People should stop making excuses for her. Sliming the WPI and the Whittemores, is only a big fat red herring designed to take the heat off Judy.
>Jamie's isn't almost recovered. Read what she has said again.
@Carole
Thank you. I agree.
>@Anonymous 12:51, I will keep you in my thoughts and prayers.
Jamie, thank you for the history you've provided and your updates on this topic. I always look forward to reading your blog. It is ridiculous to me that people would now blame you for their previously sharing in your hope and enthusiasm. You did the best with what you knew at the time and given the very human hope you felt.
And too many ppl are rejoicing in an end to HGRV research – hope killers. They should find something else to do this holiday season.
>I don't see the need to keep going over this same territory. Time to drop it and move on. When the likes of Dr. Schadt shows up at Mt. Sinai, the game is far from over. WPI and the various players are over but CFS research has new legs. Let's try to remember that.
Jana Jasgoe
>anon @ 8:04: i didnt say she IS almost recovered, i said she WAS for a WHILE.
>Jamie–There is so much overreactive fervor right now, and this blog is definitely feeding the fire. Like it or not, you have become the pied piper for "the fractious reactive community…of disappointed, critical people" that you are complaining about. Why are you taking that on? What benefits is it having for you? or for anyone with ME?
Wouldn't it be a good idea to take a break from posting, and let some of this insane energy chill out? There is nothing constructive that we can DO right now anyway, and what is currently happening on this blog defies the meaning of the word.
And btw… I was looking for information on oxygen therapy, as someone mentioned your daughter has used that successfully. Could you please point me in the direction of that source, please? Thank you.
>i was looking into HBOT this morning as well. seems like each session is $100 – $200 and i read you need 2 sessions a day! hope i read incorrect info!
>Anon's 8:04 and 9:44,
We were already on an uphill when we started arv's, after firing our Lyme doctor et al. We went further uphill after starting arv's, though Ali started Actos at the same time. Since then, with some ups and downs, we appear to be continuing to improve very slowly, with the addition of oxygen, for both of us, and infusions for Ali. I remain much more resilient than expected, even with the incredible stress I am under at the moment. Neither of us are close to well. We still dip, but less and less often, and when we do go down, it isn't for long. Ali remains on Viread/Isentress, and I am taking Viread alone, still considering Lexiva.
Anon 9:52 AM,
I agree with you. I am not planning to blog about the WPI again. We need to grieve, but move on. I am going to let things die down, while I return to my real life. However, I wasn't so much complaining about our fractious community, as observing it. I am grateful for the freedom of expression here, and that people are availing themselves of it, even when the frustration is misdirected at me. There has been such a culture of isolation and a hoarding of information in the past. I think what is happening here is exciting. I can roll with the punches. I even enjoy RRM;).
Anon who asked if I know Dr. O'Keefe. I do not, and I did wake up with some anxiety this morning that my mentioning her work might sully her reputation. Isn't that sad?
Since there is so much black and white thinking going around, I'd like to clarify that I am in no way saying that Judy Mikovits is a perfect person or blameless in all this. What I am saying is that it should never have come to this and that the way it has been handled is reprehensible. I am not defending her actions, because I don't know what they were. NONE OF US KNOW WHAT HAPPENED. I have reported my experience there; it gives it all a context. I am sympathetic to the obstacles Judy faced working there. I am not condoning her actions. Or Max's. It's just that for a variety of reasons, I don't put much stock in Max's affidavit. What I am sure about is how sad it all is. Everything that could have gone wrong, has. I don't understand why this disease is so cursed.
I have written about oxygen on 3 previous blogs and will report soon on early results in my practice. If you go to the side bar and search 'oxygen', they come up. HBOT is very expensive in a hard chamber, because of the expense involved in setting up and running a center. Soft chambers for home use are expensive, but not out of reach, especially if shared. We are using only a high flow oxygen concentrator at 10L/min by non-rebreather mask. I have patients improving with lower dose, 5 or 6L/min by simple mask. Cost of a concentrator, about $200/month or $200-$1500, for a used low flow concentrator to a new high flow unit.
Jamie
>Jamie–
Thank you so much for the oxygen info. I have tanks with a regulator that goes up to an 8L flow. I have never used it higher than 6L, usually at 4L for about an hour, for when I have severe MCS reactions. I will look into a concentrator. I would like to give my doctor some info about this, so that she will be more willing to prescribe the higher dose oxygen for me. Is there any online source of info I could pass along to her?
Thanks again.
>From the moment Annette fired Dr. Mikovits, the Whittemores have handled this situation in the worst possible way. It started when Annette cited Mikovits' supposed "insolence" and "insubordination" in the firing letter, as though Mikovits were her servant.
Mikovits has every right to the materials in dispute. They are her intellectual property. If anything, Annette stole the materials from Mikovits when she locked Mikovits out of the lab in a fit of childish anger.
If the Whittemores, despite Harvey's questionable business dealings, still have any heart left in their bodies, they will drop all charges against Mikovits and figure out a way to share custody of the materials.
All the hope I had in this world rested upon Dr. Mikovits' research. Now the Whittemores have destroyed her and destroyed my hope.
@Andrea: Hope you enjoyed the tenofovir. Too bad the rest of us will never get any.
>All the research points at HGRVs as the pathogen. We would be darn foolish to ignore that when negative studies have not clinically validated their assays and optimised to a synthetic virus that is not integrated and not the viruses found by Ruscetti and Mikovits. How can we pretend other research is any good when we have a real hypothesis for the disease. Can you imagine studying AIDS downstream affects, blocking use of ARVs and ignoring HIV! We have the chance to make people better, ignoring the virus won't.
>I have never trusted the results presented by the WPI as long as they stood alone. All along I was waiting for other labs to confirm their results. I am not surprised that things turned out the way they did, and now I keep my focus on present and future ME research, instead of dwelling in the past. Lots of new promising research is taking place, let's focus on that.
>"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."
Damn it, Jamie. I love this blog and appreciate all you do for this community…but will you please stop saying this???!
Yes, parts of all of this are tragic. And, parts of it give us a hope.
What can be done? What needs to be done to make sure this stays in the spotlight? Let's collectively, as a community, keep our eyes on what CAN BE DONE.
With appreciation.
>@Mette Marie Andersen
The results in Lombardi et al do not stand alone. We can know for a fact that Lo and Alter made the sane finding. They both found ME patients are infected with polytropic gag sequences of MLV-related viruses. Mikovits/WPI and Ruscetti/NCI had the same findings. There are also several unnamed labs who took part in that paper. Then we have the NIH and FDA with the same findings. We also know Hanson is finding polytropic gag sequences. We won't know what the host range is of the viruses until the isolates from Lombardi et al. are fully sequenced. We need Mikovits to do that. The other parts have only optimised to VP62. Both Lo et al and Lombardi et al. never found that synthetic virus, and assays must be clinically validated or their is no proof an assay works.
>I wonder ,who wanted the best for the CFS patients? Judy or Annette? The answer is easy…
Claire
>@Anon 12:48PM
Please stop misleading people with that silly garbage. All anyone has to do now is read the results of the BWG published in September. The NIH and FDA did not have the same findings and you know it. Please stop, it is unseemly.
>I am curious. We were told several positive studies were coming. WHat happened to them including Bieger who presented at Invest in ME. Have they all been shut down?
This is such a mess. I hope the WPI gets back on track and Judy finds a new lab to keep going with this line of research. I hope everyone learns from any mistakes and moves on as it is in the patients best interests to do so.
I appreciate you saying what you know and voicing your opinions. You spoke when you fealt it was time. Please continue to write your blog and don't hold back. I appreciate your opinions and bravery in speaking out.
>Lo et al was the same finding. In Lo they sequenced the gag region. They were polytropic. The gag region of XMRV is polytropic as XMRV is a polytropic xenotropic hybrid. As Silverman did the full sequencing and that data is now removed from the paper, the gag sequences in Lombardi et al. are polytropic. There is no other way to define these viruses other than host range. So both papers have so far sequenced the gag region and they both found them to be polytropic. There is no way you can say that is a different virus. Not one! I suspect you will now feign anger and won't even try to make up a story to fit your belief.
The assays is the BWG were different. All optimised to VP62/XMRV, which is shown to not be the viruses discovered. The study was also poor as has been spoken about on several occasions. Controls could not have been declared negative due to no PBMCs being prescreened and not all labs screening the controls. 22Rv1 in the same lab as some collection tubes, patients on medications that can give false negatives. Lo's team using the wrong assay from Lo et al. and not the assay that worked. Only 14 patients tested! The blood supply is not safe.
>Can anyone now tell everyone where these HGRVs came from now the 22Rv1 tale is debunked?
>The excuses you make for the BWG results are comical to say the least. WPI and Ruscetti did screen the controls, please don't say the did not. They were allowed to choose their own methods, they got exactly the type of study they claimed they wanted, and they failed. Badly.