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.
>"No, it isn't for the prupose of this study. "
Screening the blood supply and 14 patients is enough. Oh dear you have no idea.
"In Mikovits's own words, "you don't get an antibody reaction to a contaminant". Mikovits and Ruscetti together declared 10 out of 15 healty controls to be POSITIVE using an ANTIBODY test."
Mikovits didn't do the BWG. And there were no real controls I the study and contamination issues were introduced prior to distribution of the samples. You should read the paper. 22rv1 and a portion of collection tubes were both in the CDC lab. It is there in black and white. A potion of tubes not all. Read it. Poor study design and lab controls. But if it helps you to say conspiracy go ahead.
Lol you now admit an immune response cannot be to a contaminant. Serology results will be positive people as there were no real controls. PBMCs had not been pre-screened.
Lo's team (FDA) used the assay hat failed in lo et al. You cannot argue with that.
RRM what is the source of the raw gel you posted on the 4 October ? You still have not said.
>22Rv1 and some collection tubes in the same lab.
"For spiking of plasma, a large batch of supernatant from 22Rv1 cells was prepared from a T-75 flask plated at 60% confluency and grown for four days. Supernatant was collected and 0.45 μm filtered. An aliquot was tested by the CDC laboratory using six different real-time RT-PCR assays (19, 24-26)."
>"A single lot of EDTA BD Vacutainer Blood collection tubes (BD Biosciences) was purchased and distributed to two laboratories (CDC and NCI/DRP) for testing to ensure contamination with XMRV or mouse DNA was not present. Following validation, these tubes were used for all blood collections from the WPI and laboratory controls. Collection kits, including the XMRV-free certified tubes, were distributed to independent phlebotomists (Phlebotomy Services International, Central Point, OR)."
>Here's a suggestion for you Jamie – delete any "anonymous" postings and save the rest of us from this landslide of crap postings by pseudo scientists and oh-so-critical posers. Seriously. Does any of this help? No. Your blog helps, but the comments are getting nasty, and it makes what is usually a helpful blog downright unpleasant. You might save yourself and all of us a lot of stress we don't need.
Thank you for your honesty.
>RRM is anonymouse and was posting raw Lombardi data on the web when Max said he had it. Who ilia RRM and how did they get it?
>@Anonymous
"Screening the blood supply and 14 patients is enough. Oh dear you have no idea."
First, by saying "14" you are really diaqualifying yourself. The purpose of this study was not finding HGRV's in *ME/CFS patients*, but checking of the finding of HGRV's in persons could be verified.
Mikovits, through her own choise, enlisted 9 "HGRV+" patients and 1 healty, but according to Mikovits herself "HGRV+" control. Thus the sample size is really 15 (inclusing the 5 from Lo), not 14.
Second, it statistically depends if N=15 (or 14) is enough. For instance, when you do a simple heads/tails expeiment with checking if the coin is "honest" or not, it won't be a statiscally significant result for it being "dishonest" if you find 8 times heads and 7 (or 6) times tails. This could in other words have easily occured with an "honest" coin.
However, it would be a statistical meaningful result if you would get 14 (or 13) times heads and 1 times tails, simply because the chances of this occuring with an honest coin would be well below p<0.05.
Therefor, it is pretty much ignorant to assert that a sample size of 14 'is not enough' because, as I have shown, it depends on the results of the experiment.
And in the case of the BWG, if HGRV's are to be found in ~4% of healthy persons, or even 10% or 15%, you would expect to get these kinds of results (finding it in 10 out of 15 controls) in way less than 5% of cases.
Therefore, the BWG results are statistically significant.
"Mikovits didn't do the BWG."
Yes she did.
She said that the VipDx lab ALSO did some testing, but her own lab did test all of the samples from all of the patients and all of the controls too. I understand that this is a hard fact to accept because it basically proves Mikovits's' methods are no good, but that's how it is.
"Lol you now admit an immune response cannot be to a contaminant. Serology results will be positive people as there were no real controls."
Mikovits and Ruscetti couls use in-house contols of their own choosing. In any case, the controls were at the very minimum as real as in the original study, so you have basically accepted that those results are probably false positives too?
"RRM what is the source of the raw gel you posted on the 4 October ? You still have not said."
I have said ths six times now, I guess.
I will tell you one more time, though I have given up hope that you will understand it. Understanding seems to be "a choice" for you, sadly.
Source:
1. Go to the ERV blog.
2. Choose the "Magic Trick" blog post that was posted by ERV on September 30th.
3. Go to comment 296
4. Click on the link
5.Check the time of that post and you will see that it was posted before I posted it anywhere else.
"Lo's team (FDA) used the assay hat failed in lo et al. You cannot argue with that."
I cannot argue with people that simply say silly things and are refusing to back up these silly things with anything resembling a proper source…
Lo was free to use the assay(s) of his choice, and he used an assay that had previously detected MLV-like sequences in blood products.
He just failed to reproduce his earlier results.
>Shelley,
It would certainly be calmer, but preaching only to the choir would be dull. Much more to be learned by allowing the discussion. Some of the scientists here are the real thing, and I am sympathetic to their need to maintain their anonymity. After all, they are in the lion's den and trying not to get eaten. It is still good that they are thinking about it with us.
Sometimes the people who know the least hit the nail on the head with common sense. We will learn more if we hear everybody out. The internet allows people to be quick tempered and mean, but the anonymity encourages them to tell you what they really think, which has value. If you can thicken your skin, there is a lot to be learned. Although I don't like to be attacked, the process of writing this blog and thinking about the points of the people that disagree with me has sharpened my thinking.
Best,
Jamie
>@Anonymous November 27, 2011 9:09 AM
"RRM is anonymouse and was posting raw Lombardi data on the web when Max said he had it. Who ilia RRM and how did they get it?"
Why would it be me? Because I was (maybe) the first who posted it AFTER it got posted by an anonymous poster at ERV's blog?
In other words, it could have been you, JDJ, Mikovits or anyone else in the whole wide world. I reposted something that was made publicly available on a blog that I frequently visit.
That is no evidence that I posted it in the first place. But great logic.
Please go to the police and press charges. With your evidence of a crime, I am sure the police will be able to get a warrant to get to the IP's of ERV's comments and find out whodunnit. I am sure that way they'll find the person that broke into the WPI's computer's (or facility) to illegally retrieve the picture around the same time Mikovits was fired.
That just makes so much more sense than someone just retrieving the original picture from the PPT file that was circulating among a few people.
>"Why would it be me? Because I was (maybe) the first who posted it AFTER it got posted by an anonymous poster at ERV's blog?"
Now you claim you got it from another and Billy refused to answer. The authorities will want to trace you and who you have been in contact with. Thanks for providing Dr Mikovits with several leads on the attempted witch hunt and spread of lies.
>RRM,
I agree with you that the BWG showed that at this time there is not a reproducible assay, ignoring the possibility of specimen tampering. Given that a retroviral hypothesis fits the pathophysiology of the disease like a glove, how would you go about finding it, if you had free rein to look? Since you are putting in the time with us, could we move on? It is getting very repetitive. It would be far more interesting for you to teach us about the frontiers of the technology.
Assume for the moment that my hypothesis is correct. Simple animal retroviruses are infecting humans. The contamination issues involved in testing are daunting with culture and PCR, and serological assays developed so far to MLV's may have cross reactions. Not everybody, or even most people, who are infected get sick. How would you go about designing the experiment to solve the mystery of our illness?
Jamie
>If the viruses are aerosolised then 22Rv1/VP62 only had to be prescent in a lab for contamination of the CDC collection tubes to occur.
This would also support why it should never have been used.
"Retrospective analysis indicated that there was a short period of time (a few days) during which the 22Rv1 and RKO cell lines were maintained in the same culture facility. (…) horizontal spread from the XMRV containing 22Rv1 prostate carcinoma cell line maintained in the same culture facility."
http://www.landesbioscience.com/journals/5/article/15955/
RRM has admitted they are not a scientist.
>The authorities would not assume a single poster was posting raw Lombardi data on the web, they would also investigate whether it was given to several people to pass around. So it won't matter if you claim you did it later, as it should not have been available and was the property of the Lombardi group.
>Anonymous at 9:38 — I think the authorities should trace you and charge you with the crime of being unable to think critically.
>YoYomama
At least put together an argument.
>"Whittemore Peterson InstituteMany of you have questions regarding the blood working group. The purpose of this phase of the BWG study was to determine if current assays could reproducibly detect XMRV/MLV in blood samples. "They concluded that these results indicate that current assays do not reproducibly detect XMRV/MLV in blood samples and that blood donor screening is not warranted.
It is important to note that the results reported in the blood working were not based on the testing methods that are used in the clinical laboratory."
The assays used in the BWG by Lombardi/Vipdx were not those from Lombardi et al.
>If anyone is unsure, the clinical and commercial labs are different.
>@JDJ
As Anonymous correctly noted (increasing his batting average to 0.001), I am not a scientist. Not so say I don't hold any academic degrees, but certainly not in the field of virology.
Therefore, I honestly don't know how I would search. Perhaps you'll find it naive, but I do put my confidence in well-trained and highly-intelligent scientists within the field. Even though a single one may be closed minded (or even much worse), cooperation and competition with others, as well as other incentives (who wouldn't want to find something *new* that can genuinely help many people) will, at least IMHO, guarantee that their work will be of good quality.
I'd be skeptical of claimed revolutionary results by one group, not because I'm pessimistic but because these results are most easily be able to influence the enthusiasm of the scientists that made the discovery. Wanting something to eb true unfortunately doesn't make it so…
And most importantly (but this would go for almost any finding in science), I would be very wary of any finding that claimed great accuracy at one side, but which operated at the level of detectability at the same time. The two are really not compatible IMO: If you are able to detect XMRV in 108 out of 108 Lake Tahoe patients (for the Lombardi 2011 study), you should be able to accurately discriminate between patients and controls when you're put to the test.
@Anonymous November 27, 2011 10:15 AM
I am sorry, but you are plainly distorting the facts.
The "clinical laboratory" in that quote refers to the VipDx lab and not to the WPI Mikovits lab. With that quote the Whittemores wanted to deny the assertion that somehow the VipDx methodology was responsible for the BWG results.
There were basically two WPI owned labs at the time of the BWG study: the "WPI Mikovits lab" and the "clinical laboratory" (the VipDx Lombardi lab). You can now quickly assert that there was somehow a third lab now that you realise that what you've posted is actually contradicting your position, but that doen't make it so.
By explicitly stating that it was not the "clinical" Lombardi VipDx lab's methods that were used for the BWG study, the WPI are simply saying that IT WAS THE MIKOVITS LAB'S METHODS THAT WERE RESPONSIBLE.
Of course, this statement does not tell me much because the Whittemores surely want to defend Lombardi and his VipDx lab and I frankly don't trust anything that they say anyway, but the Whittemore saying that VipDx wasn't responsible for the BWG results surely doesn not support your position.
>@ RRM,
I guess I've confused you with someone who said he/she was a post-doc in a retrovirology lab. That's the problem with all the anonymous posts; they run together.
Why do you have a dog in this fight then? Are you sick?
Anyone else want to take a stab at my question?
Jamie
>My sister has been diagnosed with ME/CFS ~3,5 years ago. Although I was inititally very hopeful about the XMRV findings, I must admit I soon became very skeptical (I guess when I heard about the 98% figure after retesting the Science samples in January of 2010).
I have only allowed myself to be involved in discussions since the Alter/Lo controversy, simply because I didn't subscribe to the (IMO) wild conspiracy theories that were floating around and I felt that (desperate and therefore somewhat vulnerable) patients were being misled by a small but very vocal minority.
Unfortunately, whether one subscibes to certain conspiracy theories or not, arguing against them has only a limited effect, as the people arguing with the "truthers" are themselves seen as "arguments" in favor of the theory by proponents of the theory. It's a damned if you do and damned if you don't kind of thing.
It's not the first time that I have discussed sonspiracy theory and it certainly also not the first time I've been suspected of being a mysterious agent of the dark forces, but I've never had the honor of being suspected of 'original gel theft' by the rational, open minded (make sure it's not too open-minded about anything being possible; your brains may fall out) truth seekers.
>All the negative papers uses assays not proven to work, ie not clinically validated and look for the wrong viruses. You may want to portray that as a conspiracy RRM but it remains a fact.
>"If you are able to detect XMRV in 108 out of 108 Lake Tahoe patients (for the Lombardi 2011 study), you should be able to accurately discriminate between patients and controls when you're put to the test."
There were 101 patients in Lombardi et al. And only 25 from the Tahoe outbreak. If you are so interested in this why do you repeatedly get your facts wrong? This is not even complicated and anyone partly intrigued should now know this.
>"By explicitly stating that it was not the "clinical" Lombardi VipDx lab's methods that were used for the BWG study, the WPI are simply saying that IT WAS THE MIKOVITS LAB'S METHODS THAT WERE RESPONSIBLE."
Lombardi at ViPDx did do the BWG.
>@Jamie
I think we need to move on to where gamma retroviruses are generally found. We need to start testing tissue, probably lymph tissue for a start. Using the immune profile identified in Lombardi (2011) it would be easy to measure the changes in patients taking Rituximab and then see them return once treatment is stop and b cell levels return to normal.
>"wild conspiracy theories that were floating around and I felt that "
Then stick to the facts. Where did the viruses come from?
>Thank you for continuing telling us your story. It really helps to know some of the background of what has happened.
A reminder: "“Do not try to win over the haters. You are not the jack ass whisperer.”
>Thank you for reminding me, Lulu:).
Yours,
Jamie
>@Amy:
"There's a whole forum of these people. You don't have to look far to find them. They're the same (small group of) people who bullied fellow CFS sufferers for wanting to take part in Miller's study. They bully and disrespect a different researcher/writer/forum owner/fellow patient every week."
Exactly. It's the mecfs forums run and overseen by Patricia Carter, who has instigated a LOT of the bullying, and her cohorts like V99, Gerwyn, Robyn & Co. It's a real shame too, because there are indeed some fine, well-meaning people on that site, but they don't stick around for long because the anger and bitterness and vindictiveness is so palpable and tiresome (pardon the pun).
I really don't understand how anyone expects to get well, or even recover by 20-30% when they're so angry, spiteful and full of hate.
>I'm not sure why my last message came in for a hit.
There were questions about Lipkin. I saw a 80-minute video of him speaking at WPI about viruses. He also answered questions on that video and possible links to CFS, but he didn't elaborate on that at all, and explained what funds were needed for to study a possible viral cause.
When the CF Initiative was set up, and the grant from Hutchins Family was given, Lipkin was one of the scientists who was funded — or will be. And it was mentioned that he'd be studying viruses and possible link to CFS. That was it. It did not say which viruses.
(Also, I didn't write that point about Lo. I do not get into the virology of this disease.)
But really the barbs do nothing but to stifle discussion, which may be the aim of the barb-writer. Whatever the intention, it's just mean-spirited. We're trying to discuss a lot here. It's interesting until it isn't.
Can't people just discuss issues and points, even opinions freely?
>Hear, hear!
>Anyone care to refute the fact that assays not clinically validated don't work? To all those who want other areas investigated. Do you really want your EBV, lyme or HHV6 tests to be unproven? Shall we only use clinically unvalidated tests for fiseases like ME and new human retroviruses?
@anon 4:09
Anger and spite have never been proven to cause disease. Lol Stop with the fake concern and talk facts and evidence. Stop avoiding.
>"When the CF Initiative was set up, and the grant from Hutchins Family was given, Lipkin was one of the scientists who was funded — or will be. And it was mentioned that he'd be studying viruses and possible link to CFS. That was it. It did not say which viruses."
How can Lipkin be considered neutral? He is funded now for his own research. Racanilello has stated he is deep sequencing, but for what? What is his target? Another has inform me he is also looking for HGRVs, well that does mean he is not neutral. Why are all these project done on the quiet? What are they testing for? You can't merely screen for EBV, what is the hypothesis?
>Katy others were asking why Lipkin was never involved before as if he had special powers and should have been. Talking like that they only people to rely on are those who have discovered human retroviruses.
>Lipkin is regarded as a top "microbe hunter." He has done work on a number of viruses. He explained some of this in the video. And Wikipedia has an entry about it, which mentions some of the viruses.
I have no idea if he is "neutral" or not.
What side is a scientist supposed to be on? A side that says that research should only be done on Human Gamma Retroviruses?
Of course, a lot of scientists should be studying a viral connection to CFS.
No one is saying Lipkin is the only one who should be researching this.
And, yes, the information should all be brought out into the open for everyone with CFS, other researchers and doctors to see in a spirit of sharing and collaboration. That would be great if that happened.
>@Anonymous November 27, 2011 2:03 PM
"There were 101 patients in Lombardi et al. And only 25 from the Tahoe outbreak. If you are so interested in this why do you repeatedly get your facts wrong? This is not even complicated and anyone partly intrigued should now know this."
Oh, the irony….
I *know* that Lombardi et al. 2009 had 101 patients and that Mikovits and Ruscetti have said in their "response to comments" in Science that just 25 of those patients were from the Tahoe outbreak.
But thanks for reminding me. : )
However, that is why I *specifically* stated that I was reffering to Lombardi et al 2011.
Yes, 2011, not 2009. Please read it back.
Lombardi et al. 2011, in which 118 and not 101 patients, ALL FROM THE LAKE TAHOE OUTBREAK, showed a "distinct inflammatory signature".
After Mikovits showed this "distinct inflammatory signature" in 118 patients in a public presentation on the 29th of May in 2009, they tested these 118 patients for XMRV and found 118 out of those 118 patients to be positive for XMRV.
Thus, Mikovts/Lobardi reported a 100% accuracy in detecting XMRV in 118 out of 118 patient samples. Prety accurate assay must that be, and it should be definetely able to reliably differentiate between self-chosen positives and self chosen negatives.
Regardless, I offer you my apologies about the cohort of 118 instead of 108. I have no problem whatsoever with admitting that I was wrong with saying there were 108 patients in the Lombardi 2011 study instead of 118. Mea culpa.
Are you capable of doing the same?
>@Anonymous November 27, 2011 2:28 PM
"Then stick to the facts. Where did the viruses come from?"
They certainly seem to come from contamination, by either 22Rv1/VP62 plamid or trace mouse DNA contamination.
@Anonymous November 27, 2011 2:11 PM
"Lombardi at ViPDx did do the BWG."
According to Mikovits (through JDJ's blog), Mikovits did use the "expertise" of the VipDx lab to provide for a "double check".
In no way it has ever been suggested by either Mikovits or Deckoff-Jones that the "Mikovits lab" at WPI did not test ALL OF THE SAMPLES for the BWG study THEMSELVES.
It also doesn't make sense that Mikovits, for the most important study in her career, the study that could shut up Coffin, Stoye, McCLure (and even me), that she woud opt to go on a skiing holiday while she let "Vinnie" Lombardi do all the all-important testing.
>Hey RRM
I can't recall exactly where I saw this, but I seem to remember you calling Osler's Web a 'shitty conspiracy theory book.' If I'm wrong about that,, then I'm wrong, but I don't think so.
I am assuming you've seen David Tuller's piece on Virology Blog, but, if you haven't read it, you should.
Is that a shitty conspiracy theory also?
If not, why not?
>I'm not RRM, but I agree that Osler's Web, while perhaps not "shitty", is/was a highly overrated book based on the flawed assumption that ME/CFS is caused by a retrovirus.
As for "V99/Anon@4:36pm": Anger may not cause disease on it's own, but it certainly doesn't help anyone recover, nor do any negative emotions.
But I'm sure you'll disagree, in a snarky, angry, bitter fashion.
>I continue to be grateful for your blog.
>@ anon 4:09 PM I think you are behind the times. Gerwyn has made his own forum. And some chose not to follow. They realized he was wrong.
>i think coffin put forth a theory as to why there might be antibody response to xmrv even if the virus was contaminant..but i dont know enough to say if this was a good explanation or not.
i do not think lipkin is finding xmrv or hgrv's.
>JDJ wrote:
"Given that a retroviral hypothesis fits the pathophysiology of the disease like a glove,"
I would really like to know how you come across this statement considering the fact that Mikovits data has gaping holes in it. Seriously, what makes you think a retrovirus (lentivirus, gamma, spuma, whatever) is going to cause the pathophysiology of CFS? Don't give me some BS where you direct me to one of your blog posts where 15 extremely vague virology papers were cited.
Give me hard evidence to back up your claims because I'm just not buying your hypothesis.
>Well, Anon 8:02 PM. I've been writing about it for a year and a half, but here it is in a nutshell:
http://treatingxmrv.blogspot.com/2011/08/keeping-it-simple.html
Jamie
>"Lipkin is regarded as a top "microbe hunter." He has done work on a number of viruses. He explained some of this in the video. And Wikipedia has an entry about it, which mentions some of the viruses."
Lipkin has been marketed as a top microbe hunter. A retrovirus and particularly those in humans are not even a part of that.
>"I'm not RRM, but I agree that Osler's Web, while perhaps not "shitty", is/was a highly overrated book based on the flawed assumption that ME/CFS is caused by a retrovirus. "
Oslers web didn't assume ME was caused by a retrovirus, it highlighted how far the authorities are prepared to go stop retroviruses being investigated according to the scientific method.
>@RRM
Mikovits does not run the WPI. Lombardi at ViPDx did the BWG with those assays. The blood working group was to see whether there was an assay that can protect the blood supply. There is no high throughput assay. It was not the most important study of Mikovits career.
"They certainly seem to come from contamination, by either 22Rv1/VP62 plamid or trace mouse DNA contamination."
22Rv1 has not been shown to be infected at all. It was most likely accidentally contaminated with VP62/XMRV in the last few years. VP62/22Rv1 has never been in the WPI lab, VP62 plasmid was never in the WPI lab. VP62 cannot account for the immune response or the EM.
>"i think coffin put forth a theory as to why there might be antibody response to xmrv even if the virus was contaminant..but i dont know enough to say if this was a good explanation or not."
Coffin has put forth no explanation. You cannot have an immune response to a contaminant.
>Anon 8:02 PM,
Why does it piss you off so much? What if I'm right? Why does no one want to consider it, even if Judy Mikovits' data is all wrong? What is the resistance?
We know that animal cells in tissue culture produce simple retroviruses, capable of infecting the cells of other animals, including human. We take viruses attenuated in these cultures and inject them into humans, assuming they can't harm. We know that a similar retrovirus created in a lab can establish an infection in monkeys.
We know that there is another human retrovirus, HTLV, that causes neurological disease and cancer, but in only a small percentage of those infected.
Our informal survey is turning out to be worthy of a formal study, with controls. It shows the association between CFS and autism in offspring and siblings, as well as the increased incidence of the disease in partners, thus strongly suggesting an infectious etiology.
What other class of pathogen fits? It wasn't XMRV, so we should stop looking? Your comment was of the "your dumb" variety. Maybe you would like to tell me why. What's wrong with what I've said? Other than that Judy Mikovits has thus far failed to prove it. There's been an awful lot of smoke to be so sure there is no fire.
Jamie
>"I would really like to know how you come across this statement considering the fact that Mikovits data has gaping holes in it. Seriously, what makes you think a retrovirus (lentivirus, gamma, spuma, whatever) is going to cause the pathophysiology of CFS? Don't give me some BS where you direct me to one of your blog posts where 15 extremely vague virology papers were cited."
What gaping holes? ME looks like the neuroimmune diseases that MLVs cause in mice.
>Do those who are so angry — about what it's not clear — realize or care that for those of us with CFS, that this type of correspondence causes our symptoms to be exacerbated? Or is there no concern for those of us with this darned disease?
Some of us don't claim to be researchers or virologists but are people who are never without CFS on our backs. So, give us a break and try to discuss these points in a helpful way.
>Hi all! I've been participating in this blog for some time, and I am realizing that it probably isn't too good for my health! I think we all have heated feelings about this, and we all have good reasons for our feelings, no doubt. There is logic and passion on all sides–although of course, like everyone else, I think that my position has much better logic ;).
As ME/CFS sufferers, we need to refocus on looking ahead to where the future of research (and the future of care) is headed. I am sorry that Judy Mikovits and some others are probably feeling like roadkill along our highway, but as a community, we need to stop rubbernecking and move forward. Some patients feel clear that they owe a debt to Judy–those who feel that will want to lend her a hand. Other of us (I am giving myself away here) are not sure what to think about all this, and are not clear that Judy is altogether a victim. Still other may feel that Judy is the perpetrator and the ME/CFS community is the victim.
What binds us all together is the fact that we still struggle every minute of every day with this hellish disease–this disease that can reduce us to total dependency and that hangs over our every choice, our every step, our every action. There are no words to describe the nightmare of this life-negating illness, in which every move toward life and vigor brings the threat of living entombment. I have lived repeatedly in the different stages of my disease, from a half-functioning state in which no one can understand why I don't get busy and find a job, to my worst bedridden state in which I spend months unable to wash my own hair or sit up for more than 5 minutes. I live each day knowing that my choices and actions that day can reduce me from the former to the latter, like the falling of a curtain (or a sword).
I am excited to hear that some new scientists are showing an interest in our disease. Can anyone provide more details on these initiatives? Who are the researchers joining Dr. Enlander at Mt. Sinai? What are they planning to focus on? What is Lipkin pursuing? I've read a little about these things, but it's hard to find info about them on the internet, or at least I've had trouble finding it.
All the best to every one of you out there. We are all together in this, in the long run.