Let the lawyer games begin. My blog “Square One”, of October 1, was unfortunately prophetic. The WPI is in fact using money donated by patients to pay lawyers to sue Dr. Mikovits. One more in a very long line of horrible decisions. I am truly incredulous. This entire fiasco is doing great harm to the patient community, the extent of which is unknowable at this time. The research is destroyed. The notebooks and specimens are potentially compromised.
As I finished that last paragraph, a friend sent me Annette Whittemore’s blog just posted. I really don’t know how she keeps a straight face. She’s suing her chief scientist and the principle investigator on the institute’s grants, after termination without cause, to obtain notebooks and flash drives that Dr. Mikovits apparently does not have, since she was locked out of her lab suddenly and unexpectedly. I would say that as the “the guardian of this property”, Mrs. Whittemore has failed pretty miserably. And now she is using a little of the millions of unaccounted for dollars to sue Dr. Mikovits. I thought I understood the depth of the incompetence, but it just keeps getting worse. She thinks the patient community is going to be OK with this? Business as usual? Wait for the WPI to figure out a cure, without a chief scientist, and oh, please send more money? Who is she kidding? Sorry Annette, now we have to think about a legal defense fund for Judy!
I was going to write some good news, to follow the bad news, but I think I’ll write that when I’m not feeling like I’ve been slimed.
>Gosh Jonathan, it seems to me the 97 comments prior to yours lay it out rather well…
Jamie
>@Anonymous: November 12, 2011 6:56 PM
Leave Andrea Whittemore out of it.
Sure. When she and her family tell us why she can have a treatment that must be kept secret from the millions of sick patients that helped fund it. At the same time they sue the researcher that enabled the treatment to be found.
Uh, that's awfully presumptuous isn't it? How do you know that Andrea's treatment was from Mikovits and only Mikovits?
This entire "It's all the Evil Queen Annette's" fault is just hilarious, if it weren't so sad.
And for gawd's sake Patricia Carter, "Thank you…blah, blah, blah…for telling the truth..".etc., is so tiring and transparent. We've all had nasty private messages from you over on your 'crazy-forums', so don't think your Sweetness and Light act is working here.
>'Annette Whittemore has proven that she lacks the judgement and competence to run the WPI.'
She proved that when she hired Judy Mikovits, someone with no background in ME research.
>@Jonathan
"I for one, and quite a few in our local support group feel she made outrageous claims within months of the original paper being published, claims that could not be backed up in ANY way, especially about causality. But even worse was the fact that she left out critical information regarding proper testing methods until about 2-3 months ago. NO WONDER no one could duplicate her results."
You are one person so you cannot claim to speak for a group. What outrageous claims? Mikovits has never said HGRVs are the cause. There was no data left out of the Science paper that was not approved of by Science and the reviewer John Coffin and AZA was not germain for the publication.
Who has replicated the Lombardi paper? Not one study has! All the negative papers have looked using clinically unvalidated assays attempting to locate an unintegrated synthetic virus that is not the viruses Lombardi et al found. VP62 has nothing to do with those viruses. The gag sections of virus thus far sequenced are polytropic, as were Lo's in the gag region.
>"She proved that when she hired Judy Mikovits, someone with no background in ME research."
Mikovits is a retrovirologist. Coffin, McClure, Stoye, Towers, etc. have no background in ME either.
>We need Hillary Johnson on the case.
>what is something constructive we can do amidst all this pain and hardship? i just donated to the Mikovits legal defense fund. i hope others will as well. — rivka
>I'd say keep flooding messages, letters, emails to the NIH for more research projects and funding for CFS to find cause and treatments.
Keep the pressure on!
Get the word out to more people with CFS, their relatives, friends. Do emails asking people to do that. Even send them and post at blogs the names and addresses of where to send these messages. The more pressure, the better.
This is a critical moment.
>Hilary Johnson is the last person we need "on the case". It's her faulty 'science' that presumed there is only one cause, and that it must be a retroviral one, when evidence proves otherwise.
There are multiple causes.
>@5:06pm:
"Mikovits has never said HGRVs are the cause."
Bull-crap.
From the NY Times, Oct 8, 2009:
"Dr. Mikovits and other scientists cautioned that they had not yet proved that the virus causes the syndrome. In theory, people with the syndrome may have some other, underlying health problem that makes them prone to being infected by the virus, which could be just a bystander. More studies are needed to explain the connection.
But Dr. Mikovits said she thought the virus would TURN OUT TO BE THE CAUSE, not just of chronic fatigue, but of other illnesses as well. "
>Anon at November 12, 2011 7:39 PM wrote:
>One thing is glaringly obvious to me as a researcher (nothing to do with virology or medicine but some principles are the same). Both Judy and WPI are equally at fault for this – they don't appear to understand research ethics where human participants are involved.
>The level of intimacy that both parties have fostered with patients is inappropriate. It leads to expectations that may not be met; to emotional dependancy and possibility of broken trust. To a false and inappropriate closeness between people without power, and people with power. (The people with power can always walk away). And in some cases inappropriate financial exploitation). I can't begin to count the number of times people have said "I trust Judy (or Annette) becuase she is so nice/open/trustworthy/seems to have our best interests at heart. None of this necessarily leads to good research or good research conduct.
>People who do good, quality research may be cold, prickly, non-communicative and not willing to talk to patients. You cannot and should not judge the quality of someone's research on how charasmatic they are.
>Further, there is a reason why professionals who work directly with patients do not give out their home phone numbers or emails, and do not provide health advice or counselling outside of their expertise. It leads to a blurring of boundaries that can leave patients hurt and vulnerable. Requesting directly or indirectly for patients to contribute financially to legal costs for example, would be a striking example of inappropriate blurring of boundaries.
>People who are ill are often not well-off financially. I would encourage people to think very carefully before giving any more money to either of these parties.
This is a very apt comment, in my opinion.
Professional researchers do not act like this.
Cordially,
Lisa Petrison, Ph.D.
>@Jonathan
Is that it? No where does Mikovits say it is the cause. Do you remember how the discovery of the HIV virus was announced based on isolating 1 virus from 1 person. They even said they would have a vaccine for HIV in two years.
@Lisa
It is the norm for virologists to communicate with patients. Many of them have.
>Can't we all just wait and see what happens without being judge, jury and executioner?
We haven't heard publicly from Dr. Mikovits yet since her firing.
I'm just saying that when she spoke at conferences in Europe with CFIDS sufferers present, she stayed for hours after the sessions ended, to answer questions. She was seen as being sympathetic and kind to them.
We'll find out what's going on eventually, I would think.
Meanwhile, lots of research is going on, which can help us. And, also, we can pressure the powers that be to do research and to fund it.
The world does not rise and set on one institution or one researcher.
>"The world does not rise and set on one institution or one researcher."
I didn't know the world "rised".
>So patients who donated their money to WPI and Mikovits for the purpose of CFS/ME research …hoping to find a cause and possible cure …are now suppose to demand their money back from WPI and give it to Mikovits to pay for her legal problems? Judy would actually take patient's money to pay her legal fees? This is so incredibly unethical and distasteful, its almost hard to believe!
I suspect that both Mikovits and WPI are claiming ownership of these notebooks because whoever has the actual research in hand, is more likely to keep the grant money. Personally, I think both WPI and Mikovits should be stripped of any grant funds and the money be given to scientists working on CFS/ME, who haven't already lost their credibility.
Instead of giving money to Mikovits' PayPal, people should start filing their own lawsuits against VIPdx, WPI and Mikovits to recoup the money they wasted on their expensive but meaningless XMRV test! We patients need to focus our efforts toward research and funding that actually shows promise in finding answers for our disease ..not bail out some researcher like Mikovits who needs to take responsibility for her own serious mistakes!
>Combining research and sales and profits just seems to be intrinsically unfair. To charge a lot of money for tests which people are desperate to have just seems so wrong all around.
The CFS sufferers are the ones who paid the price–literally.
I think everyone should what they think is right. If I had donated to WPI or paid a lot for an XMRV test, I would be demanding my money back, and I would be very angryt as a person with this disease
It's the CFS-sufferers who don't benefit by any of this.
Funds will go to their legal fees. Whether anyone donates to Dr. Mikovits' defense is their own decision to do or not do.
>i have been involved in 3 law suits…..1 changed insurance laws in tx,……but….once a law suit begins it is like "opening a can of worms" & a no win for either sides because the law suits wipe the 'crap'out of people envolved, in all ways.
those of us who are sick (especially the old-timers) have come to realize that "each moment is precious" and learning to become the 'obserer' takes zing out of all the emotional drains. and many of us have 'choosen' to remove people out of our lifes, because of the drain, that we can't handle & we know now….it makes us even sicker.
i myself, sent $ monthly from my little ssi ck…to DR JUDY & HER Reserch & I think this law suit is COMPLETELY 'out of a power strugle' & w/ that said, I COMPLETELY agree w/what < "kkrizani" > said. !!!
this is all a BIG Dance for the BIG GUYS behind this…& " dr judy is the set-up" OR SHOULD I SAY THE "ESCAPE GOAT" ??. DO U REALLY THINK OUR GOVERMENT 'WANTS' "US" TO FIND A CURE ??? WHEN THEY ARE DOING THEIR BEST TO POISON US ?? DO U'R RESEARCH ……
(START WITH DR GARTH NICHOLSON'S BOOK " PROJECT DAY LILY' )
AS SAID BEFORE " THESE DISEASES WERE FROM CONTAINMENATED POLIO VACCINES " & OTHERS …
HOW CAN THIS 'MESS' TURN AROUND TO A WIN-WIN FOR EVERYONE ?? ONE THING IS FOR THE POSTING HERE NOT TO BE SO FILLED W/ HATE…LOOK FOR THE HIGHEST SOLUTION …FOR ALL !……." THE TRUTH ALWAYS PREVAILS "
MARIE MOORE
>I really do wonder what our government's "hidden agenda" is about CFS, why the reluctance to do real research, set up a real department and appoint scientists to study this disease and take it seriously.
This has bothered me for years, going way back. Why are they so resistant? I've always wondered why the CDC was actually obstructionist all this time.
I know that there was resistance to classifying multiple sclerosis as a real disease. Someone posted on a list-serve that it was called "Malingerer's Disease." Sound familiar?
And there was resistance on finding the cause of HIV/AIDS.
How much is actual ignorance? And how much is deliberate obstructionism? Or reluctance to dole out funds for research.
It does take a fight often to gain funding an serious research, even for cancers.
I really wish we were healthy enough to hold an Occupy NIH on this, the seat of the grant-giving, research appointments and point of view.
>@Lisa
Professional biomedical researchers to not use unvalidated non optimised assays of any kind
Professional biomedical researchers do not attempt to repeat a study by changing all the independent variables in that study
Claiming that the VP-62 strain of XMRV is the only possible strain of xmrv and all other Xenotropic Mrvs found in humans cannot be XMRV as coffin and Miller have done is not only unprofessional it is deliberately deceitful and ludicrous
Professional biomedical researchers do not claim that their hypotheses are fact
Professional biomedical researchers do not engage in postmodernistic use of language and use terms like XMRV specific when that term is given an unusual meaning
when you compare the level of professionalism displayed by Frank Ruscetti and Judy Mikovits to that shown by Miller coffin towers McClure and stoyle can you seriously say that the latter come even close to the professional ethical stance of the latter
dont confuse the current practices of a large group of retrovirologists as scientific practices because they are not nor are their practices ethical.
Your lack of understanding of science and your mold obsession are shining through Lisa
>I don't know why this blog is so glum lately…perhaps it is because there was a personal commitment and attachment to XMRV, Dr. Mikovits, WPI, and one by one those have fallen by the wayside.
However, Dr. Enlander is holding a conference in NYC on November 20, with David Bell and other prominent CFS doctors, and is affiliated with Mt. Sinai. To replicate the Rituximab study, to investigate GcMAF further, and MAF–the latter sounds really intriguing and just the kind of thing I'd love to try, given all my research on the gut microbiome, and my preference for simple treatments that augment immune function, rather than drugs with toxicity profiles…
It is a very exciting time. Ian Lipkin and Mady Hornig are completely brilliant, and they're now committed to proteonomic and sequencing research at the cutting edge, to gather much deeper information about ME/CFS…this is the best news in decades and I hope it is applicable to chronic lyme, too.
It feels like several breakthroughs are about to happen. It's all terrific news, and my takeaway from Rituximab is that rather than look for a single pathogen, we must look at immune function and try to shift it toward a more robust, healthy profile. Surely that drug is far from the only way to do it. For instance, Jamie cited a good response to Actos…
I just don't see a heckuva lot of harm coming to the patient community at this point because of lawsuits between Mikovits and WPI. All in all, the international saga re: XMRV called attention to the disorder, and got other researchers interested…something that was probably already fermenting because we know the Norway study was underway for a few years already.
Jill Neimark
>no cause identified=no cure ever found
this is worth checking out
http://scieme.blogspot.com/2011/11/congratulations-to-dr-enlander-on-his.html
thus far no neuroimmune disease is cureable because no one knows what causes them
the vp-62 strain of xmrv is nothing at all to do with the ME retroviruses
why people dont get this simple information is beyond me
lets not bother to look for a single pathogen causing AIDS.Lets not bother with antiretrovirals and try and shift the immune system to a more healthy profile instead I,m sure AIDS patients will be fine on Actos
Ian lipkins plan to look for gammaretroviruses in ME knowing there are no reliable assays and without using scientific diagnostic methods is IMO bordering on criminal negligence
Are you just unwell Jill would you let anyone test you or yours for HIV using unvalidated unreliable assays?
>"Hilary Johnson is the last person we need "on the case". It's her faulty 'science' that presumed there is only one cause, and that it must be a retroviral one, when evidence proves otherwise.
There are multiple causes."
What evidence? You mean lack of evidence? You do realize they're finding reverse transcriptase in the brains of ME, MS, autism, Parkinson's, ALS, etc, no? Why is it there? The neuropathophysiology, cytokine profile, and immune depletion/dysregulation of ME is entirely consistent with a retrovirus, whether other co-factors or triggers are present.
As for filing individual lawsuits, that's just not realistic. A class-action lawsuit would be, though I'm not sure it would be constructive at this point. We need a comprehensive investigator like Hillary Johnson again, because there's just too many conflicts of interest, compromised replication assays, and government suppression or denial.
Personally, I wouldn't go near the WPI, even as they pretend to be moving forward in the neuroimmune field. Damaged goods and incompetence. They hired an endocrinologist? Great, let's turn this into a thyroid/adrenal problem exclusively and treat that. Symptom suppression, like suppression of genuine efforts to find the real cause. That's the ticket.
Ironically, that certain ARVs and GcMAF have help ameliorate symptoms, leading to full functionality in some cases augurs for a retrovirus. GcMAF has its genesis in a Japanese researcher's efforts to inject a synthetic version of the body's own macrophage-activating factor that it could no longer make on its own to eradicate HIV.
>There is no evidence whatsoever that there are multiple causes of ME any more than there are multiple causes of HIV dementia or neuro aids
there are of course multiple causes of chronic fatigue and 4 minor symptoms
>The lawyers favour pursuing the court case – $$$, but wpi will loose goodwill now and in the future, even if they win their case. The "Wings of Hope" the WPI calls itself are more likely to be a reality in the future if the lawsuit against Judy is dropped and Judy's research allowed to soar for now.
>more like the wings of hype!
>Anon who asked: "Are you just unwell Jill would you let anyone test you or yours for HIV using unvalidated unreliable assays?"
Even if a retrovirus were involved, who said the model was HIV? Even Mikovits has suggested the parallels would be to HTLV, which has four strains, only one of which is pathogenic, and then only a very small percentage of the time. Even if this were also the case in ME/CFS, you would still need to look at the immune system to discover why that is so.
But I really don't want to argue about it. I think the times are very exciting.
>Post 1 of 2 by Anon – WHEN WILL THIS END? I will be posting my comments anonymously, because I don’t feel that by posting my name it changes how I feel or whether or not you take me seriously. It’s easy to get caught up in the drama of what we want to believe did or did not happen. There will always be 2 sides to a story of which each party will see it as they want to. As I see it, too many people believe in what is being fed to them instead of taking the time to research it yourself and make an informed opinion. We are presuming we know everything and that immediately the WPI is guilty of something. By definition presumption means “the belief on reasonable grounds or probable evidence.” I am not sure our reasonable grounds comes from anything more than what Judy has spoon fed her current believers which is then blogged here. Second, probable evidence – none of us were there so literally we have NO PROBABLY EVIDENCE…we have hearsay.
It sounds so ridiculous for all of the posts since this “scandal” broke to say that people wanted their donated money to go towards the research Judy was doing in one breath and now in the next say we should give all of our money to her defense fund. Is that research? How does that bring about a cure for anyone other than Judy and her current legal problems? I have followed the articles for ME/CFS for sometime because of a close family friend that is sick. With the October 2009 paper in Science it has provided Judy and Annette the opportunity to speak to the media over the years and many of the articles I have read quotes one or the both of them. I have to say Judy sounds quite crazy. I own my own company and if I had an employee making the claims and saying the things she did I would have fired her a long time ago. As another person points out why was it that Judy has been fired from other jobs. Is that not alarming to anyone else? There is talk of fraud with Judy’s work and then her firing only sounds like maybe something is going on that we don’t know. Just because the WPI is not talking about the matter is most likely because they are protecting themselves from any further legal mess that may or may not come about because of Judy. It seems as though most of this drama has been stirred up by Judy and her close followers who seem to hang onto to her every word. I don’t blame them that happened to me once only to find out how feeble minded you become when you place someone on a pedestal and believe they can do no wrong.
>Post 2 of WHEN WILL THIS END? I feel as though someone should be asking Judy how much she actually made and compare that to what WPI was able to bring in for donations towards research and you might ask yourself if the researcher herself costs more than what can be spared for research. As with most research directors they come with a high price tag and as I read how Judy spent so much of her time answering emails and attending seminars across the world how was the research being done if not by a team of competent researchers back at the lab who just attached Judy’s name to it. So were you really giving your money to “Judy’s research” or were you giving it to Judy’s ego so that she could take credit for others work while she was elsewhere. Should we even begin discussing how Judy was providing medical advice to patients when she is not a physician and how unethical that is and I believe illegal. Sure, WPI has not handled this firing or the aftermath very well at all. I assume they feel they just lost a friend and someone who was going to save millions of people around the world. It’s not easy to end that kind of relationship and when you are professional you truly watch what you say – unlike Judy and the lines she has been feeding to Jamie.
On November 12th Anon wrote – “Under the United States judicial system, Dr. Mikovits is innocent of the crimes of which your mother has accused her until she is proved guilty by a court of law. We have absolutely no reason to believe the “facts” you have posted above, but every reason to question your mother’s bizarre and erratic behavior.” I am sorry but shouldn’t we also look at this from the other direction. Shouldn’t Annette and the WPI be given the same courtesy and why shouldn’t we believe that Judy’s behavior is not bizarre and erratic. It always has in media interviews, why not now. I don’t feel like I should be taking a side just yet, but I do feel as though WPI needs to be defended because of the lack of professionalism being displayed but some lady named Lilly, Judy and Jamie. Judy keeps saying she is in talks with a few institutions that want her to come and continue her research. If she was such a hot commodity don’t you think she would have had an offer by now? It seems odd to me that they would still be in talks if they didn’t consider her such a liability. She should have thought more carefully about her moves after being fired and placed more attention on maintaining whatever credibility she has left looking for a new job. My understanding is that most scientists in her field do not regard her as a professional and found her firing to be more credible for WPI. Now who knows until someone comes forward. But like I said there are 2 sides to every story and each party will want you to believe how they saw the story unfold. Take the time to do your own research and wait to see how it may or may not play out in court before you make any decisions. In the meantime I no doubt see the actions of all this anger doing nothing proactive for the disease. You have given yourself your own reality show played out online and its time that Judy’s and WPI’s 15 minutes are up and we focus on funding for this disease.
Isn’t the real problem the lack of funding – big funding – funding from the government. Wouldn’t it behoove everyone involved to become advocates for the disease at the government level to get dollars for more research? As the drama from Judy’s firing plays itself out and eventually dies – as all dramas do – we will be left with nothing and the work will have to begin again. See this as your opportunity to bring the cause back to life by advocating and getting our government to take the disease serious enough that millions more are pumped into finding a cure. As time passes you will be able to see where you allegiance lies – is it with Judy, WPI or some other institution. Then you can work on putting these millions of dollars that we can hope to get from the government into whatever person/institution you think will do the best job.
>I don't think you understand that our government is broke. CFIDS is way down on the list of priorities, more so now than ever. I agree about not vilifying the WPI, but it works both ways. I don't see a lawsuit against the former head researcher as being constructive. It merely taints her further. As I said earlier on this thread, let the next generation sequencing studies that Judy presented continue apace, because they appear promising? Who is going to pick up the cause? The CDC? The NIH? Please.
>Anon 1:53,
My opinions are based on my own experience, not anything "fed" to me by anyone.
Jamie
>Who cares whether Judy conducted herself unprofessionally by creating expectations. She should have been given advice not to do that from her boss at the beginning if that were the case. If you have never been in that position, you might make the same mistake too. There were benefits: raising awareness, funding, etc. all the good things she did.
What matters is that if she is more likely to further research, and most people seem to think so, then give her the funding and don't undertake a court case to prove she might have done some unprofessional things.
Even if the court case is able to dig up dirt on her by saying she said a white lie or whatever at some point, this should be weighed against the fact that she was compassionate, she tried to bring the research forward and raise awareness to the need to find the answers. Her intentions were for the good of the people. She had good intentions.
I think the health of the millions of sick patients is more important than anything.
I am very grateful for what the WPI did but would hope they choose the path that is in the interest of the millions. The court case should be based on whether it is in the interest of the millions or not.
Whether she conducted herself prim and proper and was the image of professionalism is unimportant in my books. She was herself. That isn't harming anyone, especially intentionally.
>I can't help but wonder which one of the cowardly Whittemores is posting on this blog as "Anonymous" making all kinds of unsubstantiated allegations.
Come out, come out, whichever Whittemore you are!
It sounds extremely immature, which makes me wonder if it might be Andrea. Then again, it's making sounds like a lawyer, so maybe it's Harvey. But it's also making emotional statements, so it could be Annette.
Too bad the Whittemores are so ashamed of their name they have to hide using "Anonymous."
Patricia Carter
>The ME retroviruses are gammaretroviruses.These cause neuroimmune pathology and death in mice cats and apes
The mechanisms by which they cause immune dysfunction and neurotoxicity are well known
why would one have to look at the immune system to see what was causing the immune dysfunction.The logic rather escapes me
many do favour clonal expansion as a mode of replication rather than reverse transcription.That is why the comments about lack of sequence variability in the vp-62 strain indicating that xmrv was a contaminant was so foolish/disingenuous
without judy heading the research the suffering of 17 million people will go on and on
no cause no cure
the real problem is people who hold science degrees and monopolize funding act as though they are allergic to the use of the scientific method
judys work is the only attempt at forming a causative hypothesis in 30 years
Now if the other bastards would shove their avarice and egos up their arses then we would be able to rigorously test that hypothesis.If the hypothesis is unable to stand prolonged rigorous challenge then it can be modified or abandoned.
all they have to do is use an assay already optimised to detect gammaretroviral sequences in clinical positives then one way or another we could move on
It really is not difficult
use objective diagnostic criteria and then use validated assays which have been optimised to detect the target nucleic acids in clinical positives
oh and look in tissue not blood
>"I would say that as the "the guardian of this property", Mrs. Whittemore has failed pretty miserably. … I thought I understood the depth of the incompetence, but it just keeps getting worse."
Yes, you are right: Annette Whittemore's should have kept close taps on Dr. Mikovits.
>"the real problem is people who hold science degrees and monopolize funding act as though they are allergic to the use of the scientific method"
Isn't that precisely what Judy Mikovits did?
>http://news.sciencemag.org/scienceinsider/2011/11/lawsuit-filed-against-chronic-fatigue.html
>Of course nothing makes sense.
Gulf war syndrome
Vaccines made with mice cell cultures
Autism
The truth will never come out.
>I've been thinking. Would someone mind telling me what JM has accomplised in the time that's passed since the publication in Science?
It seems to me that the end product of her work to date comes fairly close to "not much". The main paper has been partially retracted, some of her "Science" data is under investigation from one of the major scientific journals; major virologists have failed to validate her findings; she couldn't re-produce her own findings; she's had to acknowledge lab contamination after being fairly hostile to colleagues who'd suggested it earlier; the sequences in Genbank weren't significant and the other sequences she said she was going to put up haven't emerged.
Can someone point me to a robust contribution she has made – maybe I've forgotten (And progressing the science would be good rather than "profile raising").
I can't help thinking that no matter how sympathetic she is to PWME that there is misplaced respect for her work as a researcher.
>Whatever anyone did at WPI or not, or what Dr. Mikovits is doing or not doing, the legal fight will not help those of us with CFIDS. It does not benefit us, does nothing to alleviate the suffering of those with our disease.
And we should demand funding and programs from the government. We should be pressuring them constantly. Absolutely.
The government is not broke. It has priorities, like war, like bank bailouts, like not taxing the super-rich. Trillions of dollars for each of these categories.
It is the NIH's responsibility to dole out research grants, I believe. And the pittance for CFIDS research is ridiculous, although I'm glad something is funded.
It took a big fight to get research on HIV/AIDS, and for people with this disease to get treatments.
Is anyone going to Dr. Erlander's conference to see what's going on? I think I read that there will be a way to see this online.
>Why did WPI, UNVEX, and VIPdx give patients the run around regarding the accuracy of their VIP dx tests? The same person was answering the phone from the same location when answering for VIP and UNEVX. They were telling patients to call the other org. No one got any answers. Who all had keys to the lab both before and after Dr. Mikovits firing? Why does WPI care so much if the the science material mean nothing? Is this merely a smear campaign aimed to discredit the PI? What will the keycards show? Maybe all this should have been figured out before the very unprofessional blog letter was sent out.
>Oh I forgot one more question. Why is Andrea so much better? Inquiring minds want to know?
>@November 14, 2011 4:53 PM
You should perhaps ask that question of Lombardi.
>To double-check: Is this the worst-case scenario, that people here are suggesting?
In 2006, Mikovits, calling herself “Dr. Judy,” is working as a saleswoman for Pharmanex, telling customers that vitamins will help them beat cancer. (Plus tending bar.) Somehow she gets hooked up with the Whittemores, who (buzz has it) have decided to get involved in CFS research “for the money.”
Mikovits is hired with the intention of proving that a retrovirus causes the disease. When no retrovirus immediately presents itself, Mikovits “creates” one by dumping a chemical called 5-AZA on the CFS patient samples (but not the control samples). This makes endogenous retroviruses that are sitting around doing no harm look like they’re pathogens. She sends off some of these samples to other labs, so that they will find the “retrovirus” in the patient samples but not the controls. Lombardi 2009 results.
WPI immediately sets up XMRV testing, with large numbers of patients paying $500+ (all out of pocket) to get tested. Since there is no actual retrovirus, the testing means nothing. Nonetheless, Mikovits tells all the patients that even if they’re negative, they eventually will be found to be positive because XMRV is “the cause” of CFS (and autism). She spends most of her time talking to tearful patients on the phone and presenting at patient conferences.
Other researchers publish papers failing to find the retrovirus. Mikovits accuses them of not following the WPI’s procedures (which is true, since they’re not adding the magic 5-AZA to the patient samples). She insists that the other researchers are inept and/or a conspiracy. The other researchers get pissed.
Mikovits gets a big break when some of the patient samples in what became Lo 2010 actually get contaminated. Plus CFS patients are so demoralized by having had their illness covered up that they’re willing to believe that everyone in the world is in a conspiracy against them, so that buys a lot of time. It’s also helpful that the isolated, desperate CFS patients are in the perfect position to be receptive to mind control — all Mikovits needs to do is show them unconditional love, give them a new identity (XMRV+), and promise them an easy answer (ARV’s).
The BWG paper was the breaking point. If the WPI test had just been of equal quality of the other labs, they would have gotten away with it. Their not being able to reliably find XMRV when it actually was present in positive spiked controls was a bit of a blow and shook everyone up, even though patients didn’t seem to notice much.
The Whittemores never had asked too many questions of Mikovits because (again) they were in it for the money, but at this point they understand for sure about the doctoring of the samples and become concerned the information is going to get out and get them sent to jail. Arguments erupt.
Feeling flustered, Mikovits takes one of the slides from Lombardi 2009 and presents it at a conference labeled for what it actually was — doctored with 5-AZA, to make endogenous retroviruses look like pathogens.
Mikovits knows she’s about to get fired, and so removes some incriminating evidence (including some notebooks and computer drives) from the laboratory beforehand. Then she persuades some various people who are ticked off at the Whittemores for other reasons to make her case to the CFS patient community.
Abbie Smith’s “partner in crime” notes that the two slides are the same and submits the information to Science, launching an official fraud investigation.
The Whittemores sue Mikovits for “theft of property,” hoping that if the materials are recovered and are incriminating, people will be sympathetic to them for having been “duped” and they will not be held criminally accountable.
Mikovits denies having those materials and asks patients to pay her legal expenses.
Whether this actually is what happened is as of yet unknown to most of us, I know. But is this what’s being suggested might have happened?
Huh. That’s pretty bad, if so.
>@November 12, 2011 12:20 PM
Where's the data on the VIP dx tests that patients were being charged up to $600.00 for? Why the need for deep sequencing if there is a problem? Dr. Mikovits is not the one that is lying.
>my whole family has either cancer or a neuroimmune disease except one. I was found positive by sero and long culture. Even Andy Vaughn admited that it's a possibility for humans to develop a neuroimmune illness if infected by certain retroviruses. They found a pathway in the recent paper done with Dusty Miller. None of the studies were looking for the HGRV that Judy and the Ruscetti's found. They were all looking for Silverman's contamination. 3 of my family members have had or have died from cancer, and 5 have an neuroimmune illness that include parkinson's and MS. Interesting.
>So Dr. Mikovits is now a liar of all things because she would not agree to turn over cell lines to Lombardi, which was the reason for her firing according to Annette. Try another story anon November 12, 2011 12:20 PM . I see all Andrea's anon "friends" are out in full force.
>@Anonymous Double-check at 10:13pm: The lies you are posting on this blog are so transparent they would be laughable if you were not disparaging the character of such a fine scientist. What is your agenda? Do you just enjoy attempting to destroy the reputations of accomplished scientists? Are you trying to make up for your lack of accomplishment by tearing down the accomplishments of other, more skilled and creative scientists?
If you spent your time working on your own projects, maybe you would have something real of your own to talk about and you would not need to resort to disparaging others in order to try to build yourself up.
Get a life!
>@November 12, 2011 1:09 PM Nice try. Where's the VIP dx data? When will the patients that paid for those tests get their refunds? Just who is trying to cover who's rearend here? Why did the WPI not secure the notebooks and materials when she was fired according to WPI for a CELL ISSUE? Where are the materials and notebooks? There are Hippa laws and standards and procedures for securing the NIH grant materials which came up missing. It was WPI's responsibility to have secured any access to those materials. Just who all had keys and keycard access and what exactly did they have to hide. Where's the assay data on the VIP dx testing that patients paid for?
>This is very eerie: Anonymous 1 vs. Anonymous 2, all kinds of accusations all done behind the cloak of anonymity.
Anonymous 1 should be a mystery writer, a very elaborate plot all worked out.
I say let's wait until WPI and Dr. Mikovits go to court, and read the testimony.
Meanwhile, as I keep asking, how does this battle help any of us with CFS?
>FEDS are in this big time and will probably come down hard on someone. You don't mess with the FEDS.