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.
>Lying to a jury is perjury. Are you saying she is perjuring herself?
>3,000 dollars has been spent you can look at court documents. And guess what not a dime is patient donations. God Jamie why don't you ask WPI before you accuse people. You are causing more harm than you can imagine! Just listen for once. You are being lied to too. When the truth comes out you will not support Dr. Mikovits that is for sure. I was one of her biggest fans. She is delusional as I've witnessed it for myself. I probably will have to testify.
>Highway to Hell, indeed!! How much more are people with this horrible disease going to have to endure?
>It seems Annette Whittemore is getting her rich and illiterate friends to post more lies on this blog.
"And guess what not a dime is patient donations."
Prove it.
>No Lombardi's results were not reported. That's a lie. Tgats what this whole thing is over. WPI was trying to get to the bottom of it all starting in August with the BWG results. Judy freaked out, quit, panicked, you name it. She's a loose cannon. . They have contacted thr correct authorities and like I said everything will come out. You should also know Lombardi is not a junior researcher as some have led you to believe. Dr. Lombardi's paper on his tests will be out. So will the
Lipkin study everyone needs to stay calm and let the
proper authorities handle this. WPI cares About the truth. Whatever it ends up being if it's a retrovirus great if not other studies will continue. WPI isn't going to stop because their daughter is feeling better. Not cured either. She's explained many times a case study will be published. You are barking at the wrong people. Maybe you should ask Dr. Judy why she left NCI so abruptly? Oh wait she can't talk about it with anyone neither can NCI. Suspicious ? You bet.
>…and who's that sitting in the corner, keeping so quiet and rubbing their hands in glee? Why, it's the psychiatrists, loving every moment of this. They couldn't have masterminded this better themselves.
I believe everyone was genuine at the WPI – the Whittemores, Dr Mikovits etc. I believe they all really wanted, and want, to find a cure for this disease.
I also think that, whatever the ruck between them, which is obviously huge, they must overcome it and find a way to work together (even if at a distance)towards this common goal, if a cure is really what drives them. Everything else should be secondary.
BB
>Not so sure a class action lawsuit shouldn't be filed against the WPI on behalf of the patients who paid for XMRV testing, regardless of whose responsibility it was. I think Whittemore is running scared, as well she should be.
Any lawyer out there willing to take up the fight?
>the BWG PCR at the wpi was carried out by Dr Lombardi using vip-dx reagents and cycling conditions.As Annette herself stated on face book that is not the same test as used in lombardi et al
Dr Snyderman I agree with every word you say
>The worst part is now WPI isn't sure anything is true that she has been saying. ANYTHING!!!!
No one trusts her and no one trusted her in the BWG they caught her lying. The weird thing is why aren't they saying anything. As patients don't you want the truth no matter the answer? Why hasn't Michael Busch ,or any of the people on the board said a word? Worse done anything about it? Because if someone does make a stink about a paper published in Science it will be retracted. The BWG would have to retract their paper and start again. But wait instead they are watching us implode. Awesome. How do you feel about being the fool? Being taken to the cleaners? Awesome me too! I'm unbelievably angry at my government. They have not written WPI back once when they reported the problem. No one has looked into it: except it's there. In plain sight.
>What are you talking about Anon above, are you sure you are feeling ok? Mikovits has done nothing wrong!
>I do want the truth, no matter the answer.
What if Judy is the one telling the truth, and she is destroyed, and we spend another 20 years wondering "what if?", like we did with Defreitas?
>Fact 1 VP 62 and 22RV1 were in the labs of WPI. Dr. Mikovits said they weren't. WPI believed her.
Fact 2 Vinnie did not have mycoplasma contamination. His samples were not reported. Fact 3 Not all the results were published. Which is misrepresentation of the truth and a blatant and utter misconduct violation.
Fact 4 the tests being done in the lab of Dr. Judy Mikovits are not the Science paper But….. are none other than the MD/PHD and Were not reported!!! who created a better test ? I'll leave that to you. . Judy was not doing culture. Oops have I said too much I guess you'll have to find out the rest in her notebooks. Oh wait they are missing! Ring a bell here??? She's covering her buttocks. WPI figured it out after an investigation. Told her she was going to expose her and yep presto pronto notebooks are gone!
>Fact the VP62 plasmid was never in the WPI or NCI labs. Fact 22Rv1 was never in the WPI or NCI labs!
> The argument in Paprotka et al. (a study led by Pathak and Coffin) is that the sequence isolated by Silverman, which he claimed came from patient VP-62, is a result of a unique recombination event. This unique recombination event occurred between a virus, found in many species of mice, and a hitherto undiscovered replication defective erv, when the xenograft which was involved in the creation of the 22Rv1 line was passed through mice.
They claim, but cannot prove that these mice were NU/NU and or Hsd mice, as they contain the viruses or at least the virus fragments they deem to be necessary to further their hypothesis.
They argue that their assays did not amplify XMRV in the early xenografts, but after several passages of the cells through the proposed mice their assays were able to amplify XMRV. Thus XMRV must have been absent from the early xenografts and created by this unique recombination event.
So we have to judge between two explanations. One is that the VP-62 sequence was generated by a unique recombination event, or that the PCR assays used lacked the clinical sensitivity needed to detect low copy VP-62 sequences in the early xenografts.
Given that a unique event is so very unlikely they must provide very strong evidence that VP-62 equences were indeed absent from the early xenografts and that their apparent absence was not caused by the failure of their PCR assays. Absence of evidence is not evidence of absence.
If one focuses on the initial quantitative PCR assay using one envelope primer it becomes clear that there is no evidence provided regarding the copy number of VP-62 sequences per 100 cells in the NU/NU or Hsd mice, later xenografts or early xenografts. This is because the PCR amplified what were known to be VP-62 sequences from the DNA taken from 22Rv1 cell line and the CWR-R1 cell line. The problem here is that the copy number of VP-62 in these cells is huge, being 2000 copies per 100 cells and 3000 copies per 100 cells respectively. We do know that this assay could detect ERV sequences in the mice and the early xenografts, but we don’t know what the copy number of ERV sequences is compared to the copy numbers of VP-62. Thus it is quite possible for VP-62 sequences to be present but undetectable, due to a lower copy number for example. There are other more complex reasons. In any event absence of evidence is not evidence of absence. We also have the problem that this assay with the env primer was not used to screen other species of lab mice or wild derived mice. Had this assay being able to detect either XMRV or ERV sequences in these mice the paper would have collapsed. Certain vested interests have argued that it would be silly to use this assay with this primer to screen the other mice because the primer could amplify both VP-62 and ERV sequences. In that case why use that primer to screen NU/NU and Hsd mice, and indeed why use that primer at all. I wonder what the defense is for not using this primer and assay to any screen wild mice. Wild derived mice are not wild mice.
Part 2 below
>There is no evidence that this assay can amplify XMRV specific env sequences other than in the DNA taken from 22Rv1 and CWR-R1 cells. There is no evidence that this assay with this primer could detect VP-62 sequences in the DNA extracted from lab mice, the early xenografts or the later xenografts. The later xenografts were not screened using this assay. In fact figure S3 in the SOM (Supporting Online Material) shows that provided this primer was used at all to screen the later xenografts using the second single round PCR, then that PCR assay could not amplify any product. As this primer was used to screen the early xenografts with the second PCR assay (Figure S3), not to use it to screen the later xenografts would be a serious departure from the scientific method.
Next we examine the second PCR single round assay with a gag primer, which is only capable of detecting VP-62 gag sequences. Figure 2D and 2E suggest that this assay, with this primer, was used to screen the early xenografts. This is however in direct conflict with the text, which states that all the primers used with the single round assay were capable of amplifying both VP-62 and ERV sequences. This is prima facie evidence of misfeasance and at the very least should be investigated. In any event, it seriously weakens if not invalidated their claim that gag sequences were not present in the early xenografts. Indeed we once again have the scenario that there is no evidence that this single round assay can detect VP-62 gag sequences in anything other than the DNA taken from the 22Rv1 or CWR-R1 cell line either. So they cannot provide evidence that their assay could detect VP-62 GAG sequences in mice or later xenografts let alone the early xenografts.
Thus I will leave it to those without vested interests to consider whether these authors have provided convincing evidence that VP-62 sequences are absent from the early xenografts, bearing in mind that absence of evidence is not evidence of absence and that the alternative explanation is a unique recombination event, which cannot have happened in the past and its future occurrence is a virtual impossibility.
Finally the paper does not fulfill the minimum requirements of surviving a peer review process. There is not enough evidence to enable the scientific merit of the study to be judged or enough data in the methodology section to enable replication. The claim that it is custom and practice among a certain group of retrovirologists not to include such details unless they deem it necessary merely means that none of their studies should have passed the Science peer review process or indeed any rigorous peer review process. Contrary to statements made by certain vested interests the Science magazine is not published merely for the perusal of certain retrovirologists but also other scientists from different disciplines. I would remind everyone what the requirements of science are:
Data and materials availability
All data necessary to understand, assess, and extend the conclusions of the manuscript must be available to any reader of Science.
Paprotka et al., ‘Recombinant Origin of the Retrovirus XMRV’ does not meet the requirements as specified by Science.
>@Anonymous 1:09 pm, a.k.a. Andrea Whittemore:
Andrea, I'm glad that the treatments Dr. Mikovits found for you have made you feel well enough to post on blogs.
But I would advise you, for the protection of your health, not to get involved in this.
Under the United States judicial system, Dr. Mikovits is innocent of the crimes of which your mother has accused her until she is proven 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.
>Everyone needs to stop assuming things. Fact how can you prove anyone of these statements is correct or who they are from. waiting for the court to decide.
>This latest development is, unfortunately, no surprise to me though it is another terrible chapter in this story. There will, I think, be more to come. Judy Mikovits now joins a fairly small but elite group of truth-tellers that have been targeted and persecuted by those we have been told and believed were there to champion truths and human rights.
The reason I say this is because I have learned to regard our government and its agencies as a criminal organization and enterprise. And they have a long, long reach.
One of the most educational things I have done to see this clearly is to sit down and watch all three Godfather movies back to back one weekend. If you want to truly understand how government, money and politics work, there isn't a better graphic illustration than this, in my opinion.
To then see the documentaries Burzynski and Under Our Skin makes this concept and knowledge specific to Big Pharma and the policies that are now emerging in relation to many illnesses – cancer, AIDS and of course M.E. to name a few.
In this paradigm people and patients are resources to be used and then discarded. Pathogens are property to be exploited for profit.
To wake up to the strategies and become more than a compliant herd is to become the enemy and risk being targeted, such as you have seen in the some of the comments on this blog. Having people like the trolls that show up here, there, and everywhere in an attempt to discredit and muzzle any opinion or thought that dissents with the push of these "Godfather" agendas is as predictable as sunrise and sunset.
Make no mistake: the process of dis-illusionment can be very painful. However, since the process of being targeted and attacked is equally painful I vote on the side of educating myself and having a clearer understanding of what is going on. It is my hope that having a more accurate vision will inform whatever steps I need to take to protect myself, my health and well-being. It also broadens the application of my compassion.
I also know that in the end the forces that are perpetuating these agendas cannot win. What I have and what I am cannot be taken from me, ever. There are worse things than death in the face of what is going on, one of which is to suffer in ignorance. If there are ways to thrive, I am committed to finding them and living them. As I always say, he of the highest Light wins. And besides, the best revenge is a life well lived.
>BB, (anonymous 12:39 PM)
I totally agree with your post. To demonize either side at this point in time is doing greater harm. The patients are the losers again. Please everyone wait for all the truth to come out without all this speculation, the false accusations, etc. I do have a feeling that both sides have made errors but I am reserving my judgment. I feel we need to allow the courts to sort out the facts without all this hateful speech. This has turned out to be my worst nightmare. It is no wonder I have trouble trusting people that say they want to help us. What a can of worms!!!
Again I will state that I am reserving my judgment. I cannot know enough to judge and I dare say most of you are in the same boat. But as a patient this whole thing strikes deep and makes me feel sick inside! Also I feel horrible for those that have been more directly hit, sunk money into it or have their names on records, etc.
As always Jamie, I am thankful that you do offer us this venue to post as well as hear from you from time to time. I will keep all you said in mind as this unfolds. ;) Also appreciate you posting one of my favorite theme songs in this crazy unpredictable life.
MM
>why doesn't judy now share the treatment that is getting andrea well. is there a gag order against sharing that info?
after what has happen it wld seem she has no obligations to wpi, they are going after her, so why doesn't she in return reveal the treatments.
why are the patients the ones continually screwed. ppl donated money so that treatments could be found….treatments that obviously work for andrea have apparently been found why are they not being shared?
>With a court case going on who could reveal that. The WPI should step off and stop doing this.
>telling the truth is not demonizing anyone
Judy is completely blameless
Annette is guilty of betraying judy and betraying patients
fact
>I'd also prefer any class actions to be pointing in the direction of the psychs, not to those who actually put time, effort, brains, reputation, care and money into trying to find the biomedical cause of this disease.
Really, let's save the class action for those who grew fat on our misery, not those who tried, gave us hope, and screwed up somewhere. They aren't the baddies.
BB
>In a video presentation Ian Lipkin made a WPI on viruses, he said that Judy Mikovits uses cultures. He said it. I saw the video and heard him say that.
Someone, perhaps Andrea Whittemore, should say whatever treatment is helping her to improve, so that other CFIDS sufferers can benefits. Keeping this private does not help us.
We want to know of everything that could help.
I think we all need to wait and see what comes out in court. Hopefully, the truth will prevail — although one never knows.
>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.
>ok….
trying to piece together what the Anonymous poster has said.
basically there saying Judy did have Vp62 in the lab and the 22rv1.
There also saying that lombardi has created a better test?? and dr mikovits wasnt so good at the testing.
There saying mikovits new lombardi was better and so stopped his information getting into the blood working group paper?
there saying that the blood working group are not speaking up about retracting the science paper – because they dont want to cause a fuss because then the whole world will have to face up to the fact that its a whole family of gamma retroviruses and the blood working group are happy to let the whole world think xmrv is over.
there saying mikovits ran out the lab with her laptop when wpi confronted mikovits and then mikovits got a phone call from annette fireing her?
so where does this leave Ruscetti?
confusing.com
>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.
>Who are you?
>Sam who ever that was, I think is someone pretty smart.
>Do we know you from someplace?
>Anon @ 12:53AM
By your argument, Dr Mikovits is not a liability. Surely WPI was aware of her employment history. An Institute cannot hire a Director willy nilly without an extensive interview process and reference check. If in fact they did do a slip shod hiring process, we’re back to my point of Annette being in over her head, aren’t we?
Reference checks in the research world are usually much more productive than in the corporate world. It’s a smaller pond to fish in. Anyone doing hiring that is worth their salt knows who to call to get input on a candidate beyond the now ubiquitous date of hire, date of termination, salary and job title. WPI had to be well aware of what Dr Mikovits brought to the table, both positive and negative. If in fact they perceive her as a liability, that’s on them.
It’s interesting to ponder that lawsuits are so often brought by the person with the deepest pockets that is most in the wrong. They file away, knowing full well they can bury their foe in debt, keep them from pursuing their career, smear their reputation and send them a tsunami of stress. They bank on it, and it’s often their only strategy. Win by being the bully. It happens all day every day in this country, and this is yet another sickening example.
If we weren’t all broke and at the energy level of walking road kill, I’d love to see an Occupy WPI filling the lobby with our air mattresses and oxygen concentrators and zillions of pill and supplement bottles until this inane lawsuit is dropped.
Anon @ all the ones that are Andrea – 1:27PM specifically
Andrea, you have a distinctive writing voice. Sincerely, it is not in the best interest of your improved health to engage here. People’s emotions are too raw and you are only putting yourself in the line of fire. Most of us are feeling sucker punched and betrayed by the WPI, and you can post every 10 minutes from now till we buy what Reeves and Wessely are selling and it’s not going to change anyone’s mind. And again, in all sincerity as a fellow patient, you better pray this doesn’t go to court and you have to testify. Not many of us could tolerate the physical demands, much less the machinations of attorneys.
>Thank YOU to those that gave their names..
The rest of you are Spineless and sickening…
Grow UP or get a Name and
have the balls to use it !
Jamie, Please screen for Anonymous posts
again PLEASE….
>@ Samuel.
Hi Samuel. I'm Anon from 7:29. I haven't posted here before and would be surprised if you'd read me anywhere else as I tend to be a reader rather than a writer. If you were wondering if I was connected to any of the players in this saga, then no. I've got a background in research and evaluation (non-medical). I've a good understanding of research processes generally.
My brother was diagnosed with ME/CFS a number of years ago, and was moderately unwell. He is well now, and has been for a long time – he considers himself fully recovered, but I still have an interest in the disease.
>I agree with the sentiment of Occupy WPI, us with everything we need with us.
But we can all speak and write and protest with whatever we've got.
That is true, that people are snowed under every day with lawsuits, documents, forced to pay attorneys' fees, bankrupted, stressed out, by people with endless resources. That's how it works.
And to stand up to that and buck that is tough.
Meanwhile, I'd like to know what helped Andrea Whittemore, not to disparage her at all. She's ill, but what is helping. That should be shared with CFIDS sufferers, just out of human support and sympathy for like-afflicted CFS sufferers.
>Fact everv hidden thing will be revealed
>@ ME_CFS_Unite
I agree with you.
In these awful circumstances, the days of allowing people the privilege of posting anonymously should now be ended.
Jamie, please do not allow anonymous posts anymore.
>Fact, VP62 plasmid and 22Rv1 were not in the WPI or NCI labs. Lombardi is now running the WPI and has always run ViPDx were he did the Blood working group testing.
As Mikovits has no claim to patents there is no exist use for saying this is an issue for her.
Fact, researchers talk to people when it suits them. Most in this story have, so Mikovits is not special in this regard.
This attempt to make this legal matter look like a tiff is disgusting. Mikovits plainly did not have a chance to take the items and who ever got the original slide onto the web was trying and failed to cause trouble for her. They must also have the items.
Richard
>@
November 12, 2011 7:06 PM
Anonymous said…
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.
If you wish to give a lecture on research ethics
I suggest you direct it against people like Coffin stoyle McClure Levi Towers Knox and Wesselly
It is unethical to conduct research into the existence of an oncoretrovirus in people with ME using unvalidated assays. It is unethical to play with people,s health by engaging in a name game and pretending that one proviral sequence could ever be representative of a family of retrovirus.It is unethical to present hypotheses as fact or design studies to confirm prejudicial viewpoints.It is unethical to interpret findings in light of those preconceptions where peoples health is involved
It is unethical to present computer simulations as scientific evidence and to rely on the post modernistic use of language to deceive readers of publications which purport to be scientific
It is unethical to abandon the scientific method and then when glaring flaws in methodology are pointed out to accuse patients of ad hominem attacks
it is unethical to state that patient involvement in their illness and their right to air their views and be in contact with scientists is inappropriate
it is unethical to use the old boys network to peer review each others studies
It is unethical for editors of journals to be a ble to authorize the publication of papers just because they agree with the conclusions and save a number of methodologically flawed studies to increase their impact in the media as part of an assault on sick people
it is unethical for a group of govcorp scientists to claim the moral high ground when their research procedure indicate clear bias
It is unethical to deprive sick people the right of transparent peer review
It is unethical to portray a group of govcorp grant maintained as un biased objective people.It is equally unethical to portray the right of sick people to criticize unscientific methodology and speculative conclusions as inappropriate
One of the key requirements of any ethical framework is empowerment and the fostering of autonomy. The treatment of sick people by this group of govcorp scientist is in breach of any ethical framework in existence.To pretend otherwise is will full misfeasance carried out under the cloak of anonymity
It is unethical to design and present studies which are not designed to distinguish cause from effect and then claim that the pet theory of the researcher is proven
It is unethical to design studies in such a way as to provide impossible criteria to fulfill a subjective declertion of a positive finding
>It sounds like compassion and sympathy for a doctor to give our direct contact information for sick people. Not all can do it, but for a researcher it is a kind thing.
I have read that Dr. Mikovits has gone to conferences in Europe where she stayed for hours after the sessions ended to answer questions, and was very kind.
I hardly think that's suspicious behavior. It shows sympathy for people with CFS.
Also, people can give or not give to a legal defense fund. I see requests for this all over the Internet on all sorts of issues. Choose not to do it if you don't want to, but don't speak for others. If they want to, they will.
But really, the unknowns should identify themselves or they won't be taken seriously — or even read by others. It's not only meek and spineless, but it shows disrespect for the rest of us, those of us who are ill.
>Correction: Line 1 above should be "for a doctor to give out" (a common CFS typo).
>There may be genuine reasons why people do not feel safe enough to put their names to what they write. This is a very emotive subject, there's a lot of hurt on all sides, I'd rather be allowed to read it all and make up my own mind.
I am upset that money myself and my other half donated, (money we could ill afford) seems not to have been put to good use.
The weeks of endless voting each day, for what? where has that money gone to? I (like so many of us) found it a real slog to make the time and energy to vote daily. Yes it only took a few minutes to vote each day, but it used up precious energy supplies, physically and emotionally.
I do know that both sides involved need to sort this out and we need to get to the truth. Mud like this sticks, and it harms every other genuine effort that's out there trying to do their bit.
The shrinks must be delighted to watch all of this sorry mess unfold :(
Whatever the truth is, it needs finding and sharing with the rest of us.
I have appreciated reading through many of the well presented posts left on here, anon or not.
>Dr. Roger Dodd on HGRVs.
"…we have heard that this virus might have entered human populations tens of thousands or more years ago…"
26:57
1st XMRV conference – should have been called first HGRVs conference.
http://www.facebook.com/l.php?u=http%3A%2F%2Fvideocast.nih.gov%2FSummary.asp%3FFile%3D16098&h=BAQFHFbH2AQHfG334CQbN4eUMD_N_Dlsm0ySDfoUkTuwpow
Greg
>when I was a young graduate I was of the belief that the scientific method could uncover the objective truth about areas investigated. I argued vigorously against feminists who argued equally vigorously that what we perceived as unbiased scientific evidence was in fact for the most part sociopolitical propaganda. the rich and powerful have come to dominate the construction and dissemination of information which pretends to be scientific in nature and hence definitive.This information is controlled and spun and involves very little rather than the product of the preconceptions and prejudices of those carrying out, and those funding the studies.Contrary evidence is suppressed by being rejected for publication of left ungathered by the refusal of funding. Do I still have faith in the scientific method ? yes I do.Do I have any faith that men in white coats will apply it? no I don't.Information from these kind of publications are increasingly instruments of mechanistic hegemony. My profound apologies to my feminist sparring partners of many years.You were correct the kudos given by the public to apparently scientific information has allowed science to become a tool of oppression
>@ Gerwyn.
1) Two wrongs don't make a right. Unethical behaviour in one part of the field, does not nullify unethical behaviour in another part. It is illogical to suggest this.
2)My research background has been influenced by critical theory and feminist theory (amongst other things). You do not see a power imbalance in the way that Judy and WPI have managed patient relationships? I sure do. I see distressed people who feel strongly betrayed and tricked – for multiple reasons.
All else cosidered, this is partly because of the false intimacy that has been fostered inappropriately by these professionals. That they are conducting this latest embarrassment publicly via social media, and appealing to the patient population for emotional (and possilby financial) support is unprofessional and unfair. It drags patients into an upsetting, stressful and unprofessional mess.
>@Anonymous 10:06 AM,
The reason Dr. Mikovits had so much contact with patients is that Annette Whittemore did not provide her with appropriate support staff.
Lacking enough assistants, Dr. Mikovits had to respond to patients' emails; get them enrolled in studies; give them their study results; and answer their phone calls. This was in addition to her other jobs–heading the research lab, writing papers, fundraising, giving talks in this country and abroad, etc.
I can attest that no one but Dr. Mikovits *ever* responded to any of the emails I sent to WPI. I repeatedly emailed Whittemore and her receptionist with questions and ideas. No response. I emailed Andrea. No response. Dr. Mikovits would reply immediately.
She did the work of several people. It's unclear to me why Whittemore didn't hire more help for her; the WPI's finances make clear that the money was there. Alternately, Whittemore could have done some of those jobs herself.
Sadly, it seems that much of the WPI's income was pumped into expensive fundraisers for the Country Club set of Reno.
In an incredibly tone-deaf move, the WPI's Facebook liaison (probably Andrea) posted photographs from one of those fundraisers on the very day that news broke her mother had fired Dr. Mikovits.
Patients watched, numb and disbelieving, as Andrea posted close-ups of expensive chocolates and wine. In the background, wealthy guests feasted on hors d'oeuvre made of only the finest ingredients.
Meanwhile, from other internet sources the dreadful news piled up. The Wall Steet Journal reported on Mikovits' firing, then Nature. We learned that Annette referred to Judy's "insolence" and "insubordination".
And still there was no comment from WPI, only more photos of the Whittemores–evidently going for a populist look–wearing cowboy hats and plaid shirts, their arms draped around the shoulders of common people.
Anonymous 10:06, you may view Dr. Mikovits' contact with patients as unprofessional, but I see it as stemming from Annette Whittemore's strong sense of entitlement. She treated Dr. Mikovits like a servant, and now from the comfort of her McMansion she's lobbing grenades at the woman who–with her credentials, integrity and intelligence–raised WPI out of total obscurity.
FWIW, shortly after Dr. Mikovits was fired, I asked the WPI by email, "Who will respond to our emails now that Dr. Mikovits is gone?" I received no response.
>I don't have a dog in this fight. But, clearly, something was amiss at WPI and the lab now known as UNEVX. However, that Peterson left a promising new facility with his name on it, Dr. DJD was let go, Dr. Snyderman wants nothing to do with the clinic, Judy Mikovitz was fired and now being futher tarred and feathered in a rather public way stinks to high heaven. I wish Annette would come on here and tell us what her true motives are, rather than offering more platitudes, regardless of whether she has a gag order or not. If her daughter has been posting here as has been alleged, it would seem the gag order is a formality, because, intended or not, Andrea's comments serve as a proxy. At the very least, I think she owes it to this community, who helped foster much of the research and treatment that helped her condition improve, a list of the therapies that she is taking.
However, it is premature to throw Annette under the bus and this biopolitical circus is merely hindering further progress in the disease. While I still strongly adhere to the retroviral theory in this illness, I do not think the CDC and its subsidiary in the CAA have our best interests at heart, and the HHS can ill afford another pandemic. The results of the BWG/Lipkin studies appear to have been severly compromised. Even the self-proclaimed Coffin admits that a retrovirus is likely in play.
However, I keep an open mind. This following abstract lends more credence to the autoimmune theory (though a virus can trigger such a chronic, self-perpetuating state), supporting the small study out of Norway. Dr. Snyderman, you, ill as you are, might find the most interest in this paper as it discusses CLL and is statistically significant at 95% of CFS patients with these autoantibodies.
http://www.ncf-net.org/pdf/AnticardiolipinAntibodies.pdf
Annette, I am not going to sit here in judgement of anyone's actions, but we need the very promising next generation sequencing studies to be pursued to the end, and litigation and obfuscation is not constructive in this regard. Please reassess. I think vilification of anyone, including you, is very destructive and helps no one in this very ill community.
>To the anon at November 12, 2011 7:39 PM
I trusted Judy not because she was so nice and kind, but because I was impressed by her clear thinking.
two options.
Maybe Judy is a liar and a conwoman, but if she is, it will be revealed.
But maybe Judy is on the level, and maybe she is right about HGRVs – and maybe it will be covered up, just like De Freitas. Just like all the evidence that we have a physical illness is ignored. I can't risk that outcome, therefore I must support Judy.
>@Anon 10:06 AM
Do you know how many researchers have been talking to patients through various methods? Dusty Millier, Andy Vaughan joined a forum to talk to patients too. People have spoken to Vincent Racanilleo, Myra McClure has responded to emails. The list does go on. Mikovits has not acted any differently to any of them.
"…does not nullify unethical behaviour in another part. It is illogical to suggest this."
What unethical behaviour?
"…I see distressed people who feel strongly betrayed and tricked – for multiple reasons."
I see no one who feels this way about Mikovits.
>Jamie, could you please explain your statement:
"This entire fiasco is doing great harm to the patient community, the extent of which is unknowable at this time. "
How is it that it could be doing great harm, yet the extent of the "great harm" is unknowable?
Seems to me like you're (once again) assmuming it's doing great harm, when in fact, it may not be.
?
>""…I see distressed people who feel strongly betrayed and tricked – for multiple reasons."
I see no one who feels this way about Mikovits."
Well, you must not know very many people. 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.
She out to go back to tending bar.