Yesterday made clear that it is going to be a circus. All that’s needed is cotton candy and clowns. Annette Whittemore is still selling fairy dust and the fate of humanity depends on whether Judy Mikovits was perfect or not. It’s more exciting than a high wire act. The CAA, the folks at the CDC, most of the scientific community are all gleeful. They wanted to turn the iconoclast into Joan of Arc. Since she isn’t a saint, the Salem Witch Trials is a better metaphor. If the scientific community had actually been impartial, they wouldn’t be so happy. They say it needs to be about the science, not the scientist, but in fact, it was, and is, very personal, not about the science at all.
I am not a lab scientist and cannot evaluate the slides written about in yesterday’s Chicago Tribune. I refuse to read ERV’s blog on general principles. Trine Tsouderos seems to be slumming for sources. And Annette Whittemore, who has no viable option but to blame Dr. Mikovits for everything that ever happened at the WPI, has turned to the journalist with an agenda. The debunker. Necessity makes strange bedfellows. Even discounting my own experience of Dr. Mikovits, which makes fraud as an explanation for an error extremely unlikely, it makes no sense that she would intentionally subject herself to the possibility of that fraud being detected by using the same slide again on purpose. The only person who has a reason right now to characterize a mistake, if one was made, as fraud, is the person trying to save the WPI. And maybe ERV and her ilk. Now all that money that was just raised at Vivant and the WPI annual fund raiser can be spent on lawyers to go after Dr. Mikovits, as they try to continue to lure patients down the yellow brick road. The baby in this divorce? The grants. An institute without a chief scientist and a scientist without a lab.
What’s left? A lab running a bunch of tests that I can order from Quest and LabCorp, for which insurance will pay. A CEO who, when I was there, had six people working for her, including a personal assistant, while Dr. Mikovits had two, and then one. A doctor working for himself. An awful lot of empty space. Less than no respect at the medical school. A post doc. A paper which looks like, one way or another, it will be completely discredited soon with everybody calling everybody a liar. Some GenBank sequences and related patents, which I know very little about, but which I imagine are enough to muddy the waters for everyone else, and therefore prevent work from seeing the light of day. Why would anyone want to get into this mess now? My fear is that the WPI will try to exist without substance to preserve their intellectual property. At this point, the counter on the top of the side bar is counting more lost time.
All this in the context of: I still think a gamma retroviral hypothesis is the best one we have.
Today’s song: Stuck In The Middle With You
>THinking about the larger picture: IF we had funding, FUNDING FOR SPECIFIC CFS biological studies and not the junk funding from NIH which may be wonderful within another context, would we be in this spot. WE NEED MILLIONS of dollars so researchers, like everyone else in this economy do not have to compete, squabble and grovel for 150,000 here and there.
NIH is the problem CDC is the problem. These splits and wrangling over intellectual property happen everyday, but we only know about this one because the WPI and ALL the people concerned stepped out of the box. NIH FUNDING BIAS IS THE TOP ISSUE.
>Thank you, Jamie. You just keep on giving us the truth. I would rather have this harsh truth than live on lies.
Patricia Carter
>All we need now is a war between Dr. Judy and the WPI…This is so very sad!
>Sounds like you are saying the WPI are going to spend money going after Mikovits? Why?
They have caused harm to patients being stopping her research in the middle of it for no reason.
>So, basically, what should patients be doing right now?
>Agree, Pat.
>You are so paranoid. Amy contacted WPI not the other way around. No one is blaming Judy for fraud except ERV. Wow you are such a fear monger.
>all that effort raising money so Judy could carry on with the research!
Now the WPI has its building, has opened its clinic and then it locks the researcher out.
and why the hell did Annette have 6 assistants and Judy have only 2 and then down to one?
where has and where is the donation/fund raiser money going, as I am sure none would be happy for a single cent to be used on anything other than Judy completing her research.
The NIH should give Judy a permanent lab where she works solely on ME (cfs)and where we can donate directly to her work, and demand that the WPI have to handover any monies or research brought in as a result of Judy's work.
>I was very upset when I first tested positive for XMRV but just kept on keeping on. Now I'm back to ground zero. I guess it really doesn't matter to me personally what my underlying cause is unless there is an available treatment. I still do oxygen therapy etc. and am pretty high functioning. I am glad I did not spend the money to go be treated at WPI. I did see the interview where Annette was saying people were coming in unable to walk and were up and doing well after treatment. Thanks for clarifying that information for me.
I feel sorry for everyone involved. I too smell someone burning at the stake or is that steak??
>Anon 10:29 AM,
Trine Tsouderos. Amy Marcus's article was excellent and accurate as always. However, journalists were unable to reach Dr. Mikovits because her WPI email address was co-opted.
If anyone would like to reach Dr. Mikovits, she welcomes your emails. Her email address is:
jamikovits@gmail.com
Jamie
>If the CAA was *truly* a pro-patient, let's find the retrovirus/virus/whatever it is that isn't just a psychological cause organization, they would be beating down the door of Judy Mikovits with every dollar they could find.
But most all of us know they aren't, and they won't.
Speaks volumes.
>If you have tested positive with a WPI assay or a VipDx assay you are positive.
>Thank you for giving us your insight on this very sad and disappointing outcome. I am a ME/CFS sufferer who was lucky enough to meet and correspond with Dr. Mikovits. I worked tirelessly to raise money for the WPI(Dr. Mikovits) in both the Chase and Vivint Campaigns. I even donated my own money to the WPI and paid for a serology test from VIPdx! I cannot believe that the money we raised and donated could be used to go after Dr. Mikovits! I truly hope that the WPI stays focused on their mission statement and not some spiteful act of revenge. The Whittemore Peterson Institute should be grateful for everything that Dr. Mikovits brought to their Institute! She is a brilliant and passionate researcher who brought light into the darkness of millions of people suffering around the world. She is the reason that the Whittemore Peterson Institute has the support it has to date! If you talk to Dr. Mikovits – Please share with her that we believe in her and we so appreciate everything that she has done for the ME/CFS/Lyme/FM community. We are hoping and praying that she will continue her research. We will support her wherever she goes!
>If anyone would like to send mail to Dr. Mikovits you can do so directly at my address, I live in the same town. Dr. Judy Mikovits, c/o Lilly Meehan, 7081 Wolverine Street, Ventura, CA 93003 USA
>Any thoughts on how we can best do advocacy while waiting for the dust to settle?
The most frustrating thing about doing ME-related posts on my blog, when I started out in 2008, was that I was largely limited to awareness-raising. Then the Science article came out, and suddenly I could include a call to action: donate to the Whittemore Peterson Institute!
With so many chunks of the story missing, I'm not yet willing to cast WPI as the villain of this piece. Maybe everybody was acting in good faith; I don't know. But I don't feel comfortable asking people to donate to them right now. I don't even know what they'll be doing, going forward. Their brief statement on Facebook said they remain "committed to a comprehensive research program," which contradicts the original news on this blog saying they'd closed down their entire research facility.
So what's the call to action now?
>OMG! Dr. Mikovits is not a saint! Well, that discredits her. All good science proceeds through the efforts of psychologically perfect, flawless scientists. No neuroses. No personality quirks. I believe we need a battery of psychological screening tests to make sure no one gets a grant in any scientific field until they can demonstrate 100% psychological perfection under all circumstances.
michael
>Jamie, As usual I really appreciate your keeping us in the loop, and putting it all out there.
I do fear, though, that speculating that the WPI will spend their donated money on litigation with Dr M will simply foment fear and create divisiveness. Until you know for sure that that is what is happening, maybe refrain from posting things that may unnecessarily rile patients up use up their limited energy.
For all we know the WPI may just move on and are positioning themselves away from Dr M for reasons we just don't know or fully comprehend, much in the way they split with Dr P. From this vantage they are very political, and its possible they want to distance themselves now from someone they view as politically "charged." Who knows, I am speculating now.
Just trying to say, let's stick to the facts until we know more, so as to avoid tearing our hair out for nothing :)
>Who wants to bet that the NIH will stop the Lipkin study. The newly formed CFI and Lipkin will announce that they will look for HGRVs. Lipkin will find them and play the hero?
>Nothing the WPI has done or said makes any sense if they want HGRV research to succeed, but it does if they don't.
Look at the negative papers and how they never responded. Look at the support Mikovits didn't get. What about trying to make friends with the CAA and telling people to vote for them. Not letting Mikovits do the blood study in house and instead putting it to VipDx.
>Fyi as of today, the lipkin study is going on as planned.
>FYI after the mess of the BWG why?
>I would like to know how the person billy on me/cfs forums gained access to the raw Lombardi data.Surely that could only have been an inside source at the WPI. It looks as though Dr M is being set up
>I realise there is nothing wrong with the research lab and Mikovits, but is it correct that ViPDx have not been using proper contamination control and the staff have not been trained properly? If this is true was did Annette know about it? I know Lombardi runs ViPDx.
>Re the Lipkin study. At least we've got the Ruscettis on our side. Maybe Lo?
Of course Dr. M was set up. She's been in a lot of cross hairs for 726 days, 16 hours, 8 minutes and 54 seconds now.
>We have no one on the side of science when the controls for the BWG never had their PBMCs screened. They could never have been declared negative. They really must be very embarrassed.
>Patricia Carter said: "Thank you, Jamie. You just keep on giving us the truth. I would rather have this harsh truth than live on lies."
Well, if she "just keeps giving us the truth", then how do you explain all her rosy blog posts prior to her being fired?
Sheesh, what a kiss-up.
>I have a feeling Lipkin is in line to "discover" HGRVS.
They may even go as far as inventing a new catergory of RV allowing them to name and disconnect it from the Lombardi virus.
This may have been long established and the WPI may have been unnder relentless pressure from the powers that be to either "give it to us, or we bury it".
To be honest I dont care who claims it now as long as we start to get recognition and real treatments.
We will always know the truth and maybe the best time to fight for it is after we get RV recognition and treatments. If indeed that ever does happen.
I have no idea what happened at WPI or with Annette but if I was her and the government said "give it to us or we bury it", I would have to give in.
Personally I think the witch hunt of Judy was inevitable as she stood in the way of the government. If Annette has jumped on board the witch hunt at the expense of Judy that is a very sad state of affairs.
BUT we will never forget Judy and this time around unlike HIV, the internet has allowed us to see truths minute by minute.
We have to make a promise to Judy that history will show the HGRV discovery to be hers, even if we have to swallow a bitter pill in the present if a rediscovery happens.
It is so ironic that the governement always had to be on board this to make it work. As a worldwide health crisis its just to massive for one small institute.
However there must be a hundred ways not to throw decent honest and brilliant scientists under the bus.
Lets pray for a real scientific outcome not a CFI cover story!!
>@Robin
Who are you meaning when you say "rosy blog posts"?
>Anon 1:41, I'm not sure why. But yesterday I was told by someone involved that it was still going to happen. And they weren't entirely sure why either. Of course this was yesterday and maybe things have changed since then…
>Anonomous said above, and I like to correct:
"Look at the negative papers and how they never responded. "
Annette put out a press release of a table which showed exactly where all the negative papers didn't replicate the original study.
The WPI did respond. Get your facts straight
>That was to one paper. Where is the rest? It was weak. They haven't been backing the research properly. Where was the Singh response? You must remember seeing the press on that paper surely, but no response. What about the blood working group?
>Give Judy the Vivent money to continue the research. That is where people wanted the money to go, for her clinical trials. Patients want an actual treatment because they are tired of 30 years of fairy dust and tests that are useless. Why else do you think they voted?
>New Article in Science
http://news.sciencemag.org/scienceinsider/2011/10/xmrv-researcher-fired.html?rss=1&utm_source=dlvr.it&utm_medium=twitter
>Abbie Smith has no right to have attack Frank Ruscetii and Judy Mikovits. Her university should do the right thing and investigate why she also posted doctored enlargements that could not have been the originals.
>V99? Is that you? The science article says "Mikovits's collaborator, Francis Ruscetti of the National Cancer Institute (NCI) in Frederick, Maryland, who ran all of the Western blots, confirms that the Ottawa slide uses the same image that appears in Lombardi et al." Perhaps it's time to move the discussion forward. I think you have better things to discuss then how very much you would like to shoot the messenger. Perhaps apologizing to some of your fellow commenters would be a start, especially the fellow patients who were just trying to figure stuff out and probably didn't benefit from your bullying.
>Dr. DJ, yesterday on twitter, whoever tweets for the WPI said, "We have a clinic with 2 doctors. Dr. Fredericks office is [phone number]." To the best of your current knowledge, who is the other doc (not Fredericks) and what are the other doc's quals?
Or is the other doc fairy dust, too?
>hey lay of the fairy dust, thats my domain.
fly
>Abbie Smith went out of her way to falsely accused Frank Ruscetti and Judy Mikovits. To compound her problem doctored images were included in her blog. Whether the discussion on where those images originated continues won't be controlled by individuals posting on a blog. It will rest with Ruscetti and Mikovits.
Perhaps you know where that is Anon?
>Oh V99 I knew it was you!
MattK
>MattK, do you know where said images came from?
>"They say it needs to be about the science, not the scientist, but in fact, it was, and is, very personal, not about the science at all."
Your fearmongering and spewing of hate is so amazing it simply baffles the mind. You simply cannot accept that XMRV really has no link to CFS. To me, its simply amazing that you just cannot accept the overwhelming evidence and continuously turn a blind eye.
And you are FLAT WRONG. It has always been about the science. That's why numerous studies disprove XMRV and CFS.
The fact Mikovits committed fraud is anathema to the scientific community and that's the reason she got fired from WPI. There is no scapegoat here.
I am a postdoc scientist working in a lab next to Racaniello. Heck, I have even published a paper on XMRV (my data is not fraudulent!). I know fraud when I see it and those western blots were EXACTLY the same. I'm shocked she didn't get called out on it right then and there when she presented it.
Jamie you want to know what's truly sad? That she caused the CFS research community and the retrovirology field to spend millions of dollars of studying a massive artifact. It's a diservice to CFS patients who have suffered so much with their illness and the fact that you ignore this, perpetuate their fears, and lambast basic science research makes you a coward and a hypocrite. You are the LAST thing the scientific community and CFS patients needs right now.
Hopefully from this tragedy CFS research can move on and truly find a cure/cause for this disease. Too bad millions have already been wasted.
Jason
>What were these six people that worked for Annette doing? What were their job descriptions?
>What an absolutely inane question 7:20.
>Anon 2:56, if you want to see a template for what I believe you correctly predict concerning "discovery" and gov't and money in the ME world, have a peek at the documentary "Under Our Skin" which outlines the medical and political situation in the Lyme world.I watched this for the first time yesterday and the light bulbs were popping over my head.
There is a very savvy medical journalist interviewed who outlines some very key changes in science and medicine in the last 20 years that I think apply equally well to the ME situation. And remember, the Lyme patient community has had a pathogen from day one, so no reinventing the wheel for the ME/XMRV/(new name here) juggernaut.
First was making organisms patent-able. Second was managed care.
Dollars to doughnuts XMRV (or whatever it will end up being called) is of prime importance as a revenue producing product. Whoever gets to claim it will make zillions. Tests, treatments, vaccines (remember the failed Lyme vaccine?). Thus patients aren't people, we are revenue streams. Moo, I'm a cash cow. In their dreams.
Once it has the stamp of approval and the trade deals are hammered out with the big insurance companies, ka-ching, a chronic illness suddenly turns from liability to big bonuses, your name in the journals of the day, and the bosses love you.
At least that's one potential. If there is a way to make money from ME this is the most likely scenario, I think. There are other potentials, of course, which are not so hopeful (as if being treated worse than an animal unless I am a "market" is hopeful) – that is not what has happened with the Lyme patient community, which is frightening to see and contemplate on a personal level. It boils down to bucks.
Welcome to the corporate/government/medicine complex, where suffering = profits. Offices for the military/industrial complex are down the hall to the left. They all play golf together and kick some new new ideas around from time to time, I'll bet. Failing that, the revenues will pay for think tanks to do the thinking for them.
All I can say is god forbid that a small group of moribund, morally bankrupt "scientists" and "doctors" do the further defining of ME, and go on to create and lock down the "standard of treatment" that Lyme patients have been subjected to and died as a result of.
Looking around at the specifics of ME politics and world politics in general I see a trend. From personal observation (I'm getting old) what I see is the result of corporate morals falling off a cliff in the 80's. Corruption and greed, etc, have always been there but somehow, while we were watching TV or something, this heinous lack of morals became institutionalized and is now a requirement to survive in a business climate. The whole world is now a banking/business climate so make of that what you will.
Human dignity and compassion were the cost. This must, and will change. When? I've no idea. But I'm holding for this: he of the highest light wins.
>Dear Patients and Friends,
While I can't speak for Judy I can tell you how I feel. I feel terrible that our relationship is ending this way. It's easy to understand why you might think of our separation as a divorce. Judy has been with me since 2006 when we first began the institute. I hired Judy to work with me to help solve the problems that are affecting millions of people like yourself. You are now personally invested in the outcome, just as we are. Judy has been a valuable member of a team that many of you have never met. I have asked her to speak on behalf of the scientific efforts of this entire institute and she has done so with great enthusiasm. In the course of her travels she has offered her hand to patients, in friendship and support, and for that we are all very thankful. However, Judy had another important job to do as an employee of the WPI. She knows that she, like everyone else at the institute, has to abide by a common set of rules that apply to one's conduct. Without those rules there would be anarchy and injustice in the work place. Judy chose a course of action which I had to respond to. I am deeply disappointed by her choices. Now we have to move on. As adults, we can chose to lash out with hatred against one another or try to make the best of a difficult situation and minimize the damage to the innocent bystanders like yourself. You are part of a caring group of people who must feel awful about having to watch this public display of cruel mud slinging on the internet. You are right though, it isn't fair to anyone to be forced into taking sides. I believe we have a better choice and that is to get along with each other and truly wish each other well. Because you asked. I will tell you how I am feeling about Judy leaving. I'm sad for me for you and for Judy. I will miss Judy's friendly smile and her enthusiasm for the science. I have learned so much from her. I will miss our discussions and our trips together to various conferences and meetings. But I have a job to do. As the leader of this institution I have to continue to do all I can to keep our team focused and moving forward; building on the progress that we have already made in science and advocacy. I'm lucky that I am not alone in these important efforts. WPI has a wonderful team of researchers, doctors and administrators who are working hard every day on your behalf. They are dedicated and passionate about making a difference in some one else's life. Your lives. I hope that Judy will keep building, as well. Just like a dear friend who is moving away, I wish nothing but good things for Judy. I hope that everyone will soon begin to understand that they do not have to take sides to care about either one of us, because in the end we all want the same thing; answers and healing. I hope too, that before long, Judy will feel the same way. Thank you for caring, Annette
>http://news.sciencemag.org/scienceinsider/2011/10/xmrv-researcher-fired.html?rss=1&utm_source=dlvr.it&utm_medium=twitter
Science Insider
Chronic Fatigue Syndrome Researcher Fired Amidst New Controversy
by Jon Cohen on 4 October 2011, 6:19 PM
>Honestly, now that Ruscetti has confirmed to Sciencemag that the figure from the paper he co-authored and the figure that JM presented in Ottawa are the same gels and not from different experiments as JM claimed, I think some of you owe Abbie an apology.
I realize this may be hard to do, but considering the vitriol spewed at her, I think it would be the decent thing to do.
>@ Annette… I very much appreciate the time you took to write your post and come here to post it. However, until I have more details about just what exactly WPI intends to do in the future, I personally cannot support anyone there.
>@Jason
A few thoughts:
1. Fraud is to be decided by a committee of peers or in a court room. Not by a guy with just a first name spewing charges. Or by another blogger who's called Dr. Mikovits a c*nt.There are formal procedures to be followed not a hanging by internet charges and counter charges.
I will admit that I don't have the expertise to decide whether fraud has been committed. But I also don't see where you can speak for the scientific community. Especially when I'm reading cogent arguments on both sides.
2. "fearmongering and spewing of hate" Are you meaning Jamie? Unclear. I don't see Jamie or any of Dr. Mikovits supporters spewing hate. Hate is also a strong word that needs defining. There are strong opinions on all sides about who is helping or hurting the cause of progress in CFS research. Strong opinions of those sort do not mean "hate".
I've said at times that Drs. Stoye and Coffin are horse's asses. Is that "spewing hate"? I've been in academia and learned first hand that lots of people with degrees fit that category. I don't hate them. I am angry with how Annette Whittemore has handled her end of this fiasco, but I don't hate Annette. I think she's operating out of what seem to her good motives.
And I've no idea what "fearmongering" is.
My biggest fear is that the science and the funding of the science of CFS will go back to where it is was pre-October, 2009. There was absolutely no interest or funding by the NIH; inept, at best, efforts from the CDC.
The notion that the "millions" wasted on XMRV research would have been better spent is naive. But then you're young and haven't lived with CFS for 20-30 years. There has been virtually no funding of serious CFS research not ever.
3. Given how disturbed you are about all this "waste" I'd be more convinced of your seriousness if you said you were committed to spending your career in getting to the real cause or causes of CFS. It's easy to take shots from the sidelines and then make the usual safe career choices once you learn that the NIH just ain't going to fund grants into CFS. I hope I'm wrong. I hope that the NIH has finally seen fit to face up to the criminal neglect towards and epidemic of an disabling disease affecting a million Americans; but so far I see no evidence.
We CFS patients have been hurt by the disinterest of the medical establishment for 30 years; and hurt now by its seemingly only interested in the for or against XMRV story. The sympathy I see expressed seems false as it's so newly arrived and seems completely attached to merely discounting the XMRV theory. For CFS patients, this is same old same old.
Last point: I suspect you are not old enough to remember the vitriol spilled on Anthony Fauci by ACT-UP. It was very nasty and its effect was to get him to focus on AIDS when he and the government would have gladly let that "gay disease" simply kill gay men. That was an era when for 8 years the President could not bring himself to utter the word, "AIDS". Not that any President then or now can be brought to mention "CFS".
michael allen, ph.d.
>Annette, I just read your post and it saddens me. The handling of the divorce between Judy and the WPI was handled in a way that frankly was awful to the the band of patients devoted to the WPI, to your work and Judy's.
We really need something more than PR boilerplate as an explanation for why this happened and why it had to happen in such a sudden, abrupt, and insensitive way.
As I said in my previous post above, I assume you acted out of the best of motives but I don't know what they were.
Additionally, to those of us devoted to the WPI, the WPI is synonymous with XMRV and HGRV research. If you want to have credibility, you must convince us very quickly that the WPI has a mission and a capacity to fulfill and fund that mission. Right now, it looks to me like another mismanaged, underfunded, well intentioned attempt to do something good. I'm not blaming you as much as trying to assess what I see. I've been involved with other non-profits and as a patient endured the systematic failures of almost every attempt to make progress toward an understanding of CFS.
The larger picture looks to me like the powerless imploding under massive external attack. And I mean by powerless, all of us with CFS, our families, and friends; and the brave doctors willing to risk being marginalized by their committment to treating CFS. And I count you and your family in that word powerless. Perhaps you didn't realize how brutal the assault would be. After 20 years of illness, I am almost used to it.
I don't know that you've much time to establish some credibility for the WPI. And it should certainly begin with transparency regarding Judy's departure.
michael allen, ph.d.