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
>"It is an infectious disease, so more people will get it and go down from it while we wait."
You see here is where I have a problem with you. There is just no proof of this statement. Simply none. There may be suggestions in the literature here and there from the past and now but no definitive proof.
The way you state it seems like fact. "It is an infectious disease"
Sure this may be a hypothesis, I'll grant that. But what if you're wrong? What's if its autoimmune triggered? Genetic components? Both? Environmental triggers? What if CFS patients are immune compromised and are more prone to infections?
To state "It is an infectious disease" may not be true and and a patient who does not know much about medicine or science and looking for something to hold to could grasp at your comment as if its the truth.
As a doctor, you know very well the definition of a differential diagnosis, so I implore you to do something similar on the scientific side and entertain multiple multiple/complex hypotheses to the cause of CFS.
You will better aid your patient population by exploring all the alternatives.
>More for Jason,
Doctors were allowed to diagnose and attempt to treat a patient for hepatitis before we knew that non A, non B was hep C. It is exactly analogous. The footprint of retroviral disease is there.
I don't understand why a scientist would want to be responsible for treatment, or lack thereof, for millions of very sick patients? It is a lot to have on your conscience. Why do you even have an opinion? Are you so sure that our disease is not retroviral in origin that we shouldn't have a crack at RT inhibitors? You admit you know nothing about the pathophysiology. How sad is that? First the scientists, who know nothing about the science, do their thing. Then the doctors get to think about it next. While the patients suffer in silence.
It needs to be a collaboration, translational research, scientists and doctors together. That is why the events in Reno are so tragic. Such a waste.
Dr. Jamie
>Jason,
Yes. I think it is obvious that it is an infectious disease. I communicate with very large numbers of patients. You admit you know nothing about the disease. Our partners have subclinical disease and crash with regularity, sometimes after 20 years. Our children have autism, which is how it looks in the developing brain. From a clinical perspective. Family groups have common symptoms, even when there is no genetic relationship.
Perhaps I do say things with too much authority. After all, who am I? A sick doctor, with a sick daughter. It's just that from my perspective these things are obvious and the people who are disagreeing with me don't know what they are talking about. Clinically speaking. Maybe I'm inflammatory to get your attention. It's better than being ignored. At least I've got you thinking about it.
Jamie
>Jason,
Your work should be guided by mine, not just the other way around.
Jamie
>@michael allen, ph.d.
"The sympathy I see expressed seems false as it's so newly arrived and seems completely attached to merely discounting the XMRV theory."
You nailed it! PERFECT. All these wonderful, caring, humane researchers like Jason coming out of woodwork to express their concern and sympathy for poor patients. Where were you before XMRV Jason? Which groundbreaking CFS research did you have to put on hold to study XMRV?
C’mon Jason, admit it to yourself: you coming on here and posting stuff isn’t about protecting the patients from harm, it isn’t about you helping to find answers to diseases (after all CFS patients have Cognitive Behaviour Therapy, and Graded Exercise Therapy, so why do they ask for more… or God forbid! that ridiculous notion of curing autism through focusing on anything environmental, like viruses).
It is about you protecting the doctrine: animal retroviruses do not cause human disease, and they can’t be passed on to humans via contaminated vaccines!
OPS, I did it! I mentioned the V word. Damn. I’ll be deemed a nutter. Swooosh goes my reputation as a thinking human being. Next I’ll be saying that patients getting better on ARV points to retroviral pathology. Silly me. I need to listen to reason, I need to be told by someone that exogenous retroviruses DO NOT cause neuroimmune diseases. And they certainly DO NOT contaminate biological products. EVER.
>I do not know the case with Jason, but many people likely oppose retroviruses precisely because they do not understand the disease.
In any case, retrovirologists reading this, please study the disease.
The advocacy consequences of severity:
http://thekafkapandemic.blogspot.com/2011/06/severity.html
A clinical description that will clear up a few things concerning the multisystem nature of the disease:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
Remember that many people are far sicker than described there.
Others will fill you in on markers, including cytokine patterns, that you might recognize from your work on retroviruses.
If you ask, advocates will point you to good places and people.
Just beware the aBvocates (with the capital B — the rather active anti-advocate organizations and people who typically get quoted in newspapers).
Most of what you read about the disease from mainstream sources is false or misleading.
Mainstream sources almost never describe the disease in question.
>I wrote some comments to you before, but apparently they got deleted or removed.
But whatever. I give up Jamie. You win. I don't think you will ever see or agree with my point of view and I don't have time to spare arguing with you.
Good luck to you and your daughter, I hope get past this terrible disease.
Jason
>@Anonymous October 5, 2011 3:33 PM
"Has the Lombardi data now been compromised?"
No, no, no, no.
Mikovits (or somebody else from WPI/NCI) had embedded the WHOLE of the original picture into the Powerpoint file of her presentation. The picture of the gel was cropped using the Powerpoint program itself.
One of the features of Powerpoint is that when you crop an image, the WHOLE image is retained. The Powerpoint software doesn't really remove the part of the picture that was "cut away", it just doesn't show it. The advantages of this technique are pretty obvious, I guess.
Problem is, when you share that Powerpoint file with a few fellow scientists, they can "uncrop" the picture using the Powerpoint software. One only has to click on the image in question, right click and choose to change the size and position, and then choose to reset the values (or adjust the cropping manually).
If you google a couple of PPT's with images and open them using Powerpoint, you can check this for yourself.
>Your comments were caught by the spam filter, Jason. I put them through. This blog is completely unmoderated, but there is no way to disable blogger's spam filter.
Jamie
>Jason,
Please read Samuel's post.
Thanks,
Jamie
>ninja edit – nevermind, my post was stated above. I missed it.
Jason
>Jason,
If you send me your email, I'll send you a song. Music and humor get me through, so I'd like to send you some. You already know I'm crazy, so…
Really, I am not the enemy.
Dr. Jamie
jdeckoffjones@gmail.com
>To add to Samuel's post…paper on cytokines and chemokines found:
http://iv.iiarjournals.org/content/25/3/307.full?maxtoshow=&hits=2&RESULTFORMAT=&andorexacttitle=and&andorexacttitleabs=and&fulltext=xmrv&andorexactfulltext=and&searchid=1&usestrictdates=yes&resourcetype=HWCIT&ct
>@RRM
So the gel can have been altered before it got on the web?
It wasn't released through an official source.
Yes, that is compromised.
>Quote by Jason: "Honestly, it doesn't matter whether I have an understanding of the disease (I admit – I don't. I'm a retrovirologist) or the medical issues."
Quote by Jamie: "You admit you know nothing about the disease."
Well if this is the sort of argument you resort to there is no point in saying much else.
The data in the Science paper is fraudulent. There is no question about it.
>@Anon
It is ridiculous to accuse Dr Frank Ruscetti and Judy Mikovits, and the rest of the Lombardi team of fraud.
Luckily sunshine laws will allow them to obtain all the computer information from ERV that she has on her university computer in relation to this.
>V99, I mean…uh, anon@4:31:
NEWFLASH: Ruscetti has admitted the slides are the same.
>Jamie, to Jason: "You admit you know nothing about the disease."
Kind of like Judy admitted during her question and answer session with Cheney in early 2010?
>@Anon 4:35 PM
Doesn't matter if they are the same.
The new ones now in public have been compromised.
>Yes I think I will rescind from being in the study and my family will too. If Dr. Mikovits and Dr. Ruscetti are not involved, then I want WPI to have nothing to do with me or my family. I'm contacting them today. I've had enough with miracle treatments
>The gel people are claiming to have come for the powerpoint would also need to match the other gel that is in public now. If they don't we have multiple copies.
It does look like the Lombardi data has been compromised.
>Is anyone from within this community – Jamie or leela or whoever – going to stand up to V99 and tell her to knock of this repetitive and undignified bullying? You may hate Abbie, but at somepoint someone has to say 'Ok, that's enough of that'.
MattK
>I have donated, voted, felt happy when the WPI presented new exciting news.
We were told the research should help us all around the world.
Tell me now why I should donate when the researcher is fired, she can't even get her notebooks from the WPI.
Is that about helping us all with ME/CFS?
Sorry,the action about not giving her notebook back is more telling than all the speeches of helping us all with ME/CFS.
"In Judy I trust"
>@Anonymous October 5, 2011 4:25 PM
Nope. Mikovits/Ruscetti have verified it is the same gel.
PS: Of course, anybody could have altered anything before it's posted on the web. It's actually the very nature of psoting things on the web that you can alter things before you post 'm. So there's really nothing special about this case, Sherlock.
In this case, both Mikovits and Ruscetti have flat out contradicted each other ('the RT means room temperature' vs 'it means reverse transciptase') but neither have questioned the authenticity of any of the files that are "out there", so I am not quite sure what you're getting at…
@Anonymous October 5, 2011 4:47 PM
"It does look like the Lombardi data has been compromised."
No. no. no. no.
There's no data from Lombardi et al. "out there". Yes, the data that Mikovits "included" in her Powerpoint, but no "new data".
Science just cropped that picture for conspiratorial purpo..ehhh…the purpose of clarity.
>There is data from Lombardi out there. The moment it is not in the possession of Mikovits or Ruscetti, anyone can manipulate the images.
>From Gerwyn Morris:
I found Annettes letter to be hugely disappointing
I fully support Judy and her science
There is no other scientific hypothesis re the cause of ME
gammaretroviruses are known to cause neuroimmune disease
If there is an alternative SCIENTIFIC hypothesis I have yet to hear it
To allow the raw lombardi data to fall into hostile hands is a crime against humanity
To willfully abandon HGRV research is an even greater one
>Jason et al,
Please, please, please note that in the era of HIV we have a lot of strange diseases going on and increasing with no clear reason as to why. Those of us with CFS know we got sick with something infectious – ran fevers, enlarged lymph nodes, reactived viruses of various sorts and no permanent recovery in years. We avoided mold and took antibiotics and thought we had Lyme yet NO FULL RECOVERY doing any of these things. If you read about HIV patients before they knew about HIV these folks were buying black market doxycycline on the street because they knew they felt a little better for awhile on it. It controlled the secondary infections. Then there was the Elaine DeFreitas research that was buried in 1991. So now in 2011 we patients are not going to allow this new research on retroviruses to get buried. Also, note that there are hints of a retrovirus in ALS (and probably in Gulf War Illness and maybe autism) And don't ask me for PROOF of all this. We are talking about some scary hints that MUST be followed, studied. The Mikowitses of this universe must not be fired. They must be paid to continue working. You should be asking your grad school supervisor to let you work on this. Hey, you could be the next recipient of the Nobel Price. This beats finding the cause of ulcers.
Here is the link to ALS in case you do your homework. (I used to be a teacher before I got to sick to stand up.)
http://www.alsa.org/news/archive/evidence-of-retrovirus-in.html
>@Anonymous October 5, 2011 5:05 PM
Err..Sherlock, this was Frank Ruscetti's experiment.
And even if the actual pictures would be at WPI, I am sure Ruscetti has a copy of the Mikovits slides (which, I might repeat, contain a copy of the infamous picture).
Or was his account also compromised by the conpirators?
>@Gerwyn
"To allow the raw lombardi data to fall into hostile hands is a crime against humanity"
Mkay. From Science's policies:
"All data necessary to understand, assess, and extend the conclusions of the manuscript must be available to any reader of Science."
Yesterday everybody in the whole wide world had to exactly replicate everyting Lombardi et al. has done.
Now, suddenly, it's a "crime against humanity" if peers get to see what was done exactly?
>RRM are you a conspiracy theorist?
Are you claiming someone has now managed to get into Frank Ruscettis lab?
That too would mean the Lomabardi data is compromised.
There is a difference between replication and data that is private property. Patients details for instance. The extent of your science education is limited isn't it.
>@Anonymous October 5, 2011 5:25 PM
No, my education is not that limited.
For instance, the patient details are not the "private property" of Judy Mikovits. They're not even "private property" at all.
Sorry to have to correct you on even this most trivial of issues.
>There is a rumour going around that anyone testing positive by Vip-dx is not positive for a HGRV infection.This is based on a misunderstanding of the BWG results
The PMBCs of previously positive patients sent to the wpi in the BWG became contaminated by mycoplasmia rendering them unuseable.
The normal Vip-dx methodology is based on culture of PMBcs before RT-PCR and serology
Thus the BWG has nothing whatsoever to do with the normal VIP-dx testing methods
Additionally the PMBCs from blood donors were not tested and thus they were not subject to the normal VIpdx methods.
As these methods are the most sensitive known for detecting a HGRV then one not say with any degree of certainty that the blood donors were indeed free of hgrv as claimed
the situation with the lab controls is very confusing as this was the only group subjected to multiple draws. It is already known that some draws test positive and some negative even though a patient is known to be infected
Once the small sample size and the highly controversial application of Kappa statistics is considered then the results become impossible to interpret
we also know that the tubes used to draw blood from the wpi subjects and the lab controls had been at the CDC to ensure that they were free of xmrv before being used.
That lab was used to prepare VP-62 spiked samples and contained the 22rv1 cell line
Gerwyn
>@RRM
The patient details would be private and confidential. Are you suggesting something has happened to those?
>WHO CARES WHAT GERWYN MORRIS THINKS ABOUT ANY OF THIS except his angry, bitter, devoted crazies on the me/cfs forums?
Just because he can't see any other hypothesis, doesn't mean there aren't others out there.
Look at faulty methylation/genetic mutations just as one example. In fact, isn't that why Mikovits used that chemical on those samples because it DEMETHYLATED the virus? Doesn't that suggest that faulty methylation may be another viable hypothesis?
OY. VEY.
>Jennifer why are you shouting?
Do you know what a hypothesis is?
Once you do, can you explain what you would test and how it explains all the observed abnormalities, signs and symptoms in ME/CFS? What would this focussed study being testing? Don't only say to see if this causes ME/CFS. You need to say how that would be tested.
>From Anon October 5, 2011 4:31 PM:
"WE NEED CLINICAL TRIALS. THERE IS MUCH TO BE LEARNED."
No, first we need to prove that XMRV-HGRV's cause the immune dysfunction in humans with ME/CFS.
Let's say they don't. Let's say there's not even so much as a link. 50% of people improving on an off-label drug seems worthy of clinical trials in and of itself, yes?
>"No, first we need to prove that XMRV-HGRV's cause the immune dysfunction in humans with ME/CFS."
That is not how it works. There are hundreds of FDA-approved drugs for various diseases in which the mechanism of action of the drug is not known.
>"50% of people improving on an off-label drug seems worthy of clinical trials in and of itself, yes?"
People with CFS improve as a result of all kinds of things. If these people were really well, and could prove it, that would be one thing. But even the author of this blog didn't improve very much, and she was doing so many things that her improvements could have been due to anything.
Quite a testimonial.
>This blog is Super full of nutty people. Did you ever stop to think the legality of all of these issues is keeping WPI from making blog comments such as Judy and Jamie? Do you think the WPI does not have the full backing of the University of Nevada? Do you think that they are busy actually working on a statement? Do you think the Whittemore's stole anything? Really Really? The Whittemore's have done nothing but donate millions of their own dollars to find the answers to neuro-immune diseases since I've known them. You know nothing of their backgrounds of philanthropy to community projects all around Reno! You know nothing of their integrity and responsibility using their precious time to help others . They were brought up not to air others dirty laundry. Dr. Peterson left because he could make more money with the Chronic Fatigue Initiative. He left because he wanted to be head of the research department and made a deal with Konnie Knox and to WPI was extremely unethical. He wanted to continue to give Iv's at 190.00 an hour. And was extremely unethical. When the Whittemore's found out they wanted nothing to do with him. He left the Whittemore's with a building with his name on it.
>Dear MattK,
Many of us who know V99 don't feel a need to censor her, or pretty much anyone else on the "patient side" of things. There are other members of the ME internet community who also repeatedly and persistently post their own statements, beliefs, theories, etc. with which many or even most of us disagree, or with which we partially disagree, or whatever. If we're sufficiently annoyed at some point, we might post about our annoyance or disagreements, but usually not. There's often no point in it.
It would be a mistake to believe V99 represents the entire online patient community, any more than I do — or even the majority of members on mecfsforums, where she posts most often. Let alone anywhere else.
It would also be a mistake to believe that V99, or anyone else, has a large influence over the beliefs of the online patient community. As in any situation, some people agree with her sometimes, sometimes not, and, for some, always or never. Just like people who aren't sick…
As is obvious in even a quick read of the online forums, patients' beliefs about what's going on in this illness are all over the map. There are even online communities who endorse the psychiatric causal theory and try to encourage each other out of their "illness beliefs."
Online patients may come together on single issues from time to time, but it would be inaccurate to generalize the number of signatures on a petition, for example, as representative of all patients.
So, no motivation here to shut up V99 or anyone else. It would truly be pointless anyway. Besides which, she generally cracks me up and, more importantly, I know she has a true heart and believes that what she does is in patients' best interest.
God knows "inside voices" have gained us absolutely nothing in the past 25 years. Loud, annoying, persistent voices, making extravagant claims, even when they're flat wrong, are serving us better.
With respect to bullying Abbie, you're kidding, right?
>Your comments here are that of a disgruntled former employee. Oops I mean employees! Judy and Jamie you make a great team ! Keep at it.
>Anon 6:24 PM:
Definition of DISGRUNTLED
transitive verb
: to make ill-humored or discontented —usually used as a participial adjective
Yep. I'll own that one, except I was never an employee of the WPI. I was an independent contractor.
Jamie
>This is getting quite ugly. What makes it even uglier is when patients intervene, thinking they are doing good, by advising scientists, by bashing other organizations and now even bashing Annette and WPI.
A certain forum, interestingly called MECFS though they say that those with CFS don't have what they got- have gotten quite good in that. Bullying other patients and other scientists that "don't get it".
It is really sad and I really wish I could opt out of this disease.
The truth is we do not have control over what is happening.
Getting aggressive towards those that try to help us is making us all patients look nuts.
The press has a very negative attitude about us now due to a small percentage of NUTS that is trying to interfere with science and other groups that are researching other things than retroviruses. (I have nothing against retrovirus connection., I think it makes a lot of sense in our disease)
I am hoping that each look at their own behavior and see if their behavior is harming other patients, physicians and scientists in any way.
The truth is we need everyone that is interested to enter our field to do so without submitting to bullying from patients. These people, with their own knowledge and expertise are trying to piece the puzzle of our disease. The best we can do is not interfering with their lifelong expertise.
>@Dr. Snyderman.
you said "There is no explanation for the improvement in my leukemia cell parameters other than a retrovirus responding to anti-retroviral drugs."
I say – Regression to the mean. It is a far far more likely explanation, as you should know.
>"These people, with their own knowledge and expertise are trying to piece the puzzle of our disease."
If I believed this, I would have no problem with keeping quiet. I don't.
>Anon at 6:20 "With respect to bullying Abbie, you're kidding, right?" Oh God, no I did not mean that! Ha ha, not in a million years. I meant the other patients. Everytime they start to have an independent thought she nips them in hocks auntil they go back in the flock. It's not very nuanced but it is relentless and I feel bad because some are obviously having a hard time and could maybe use a bit of space to think aloud without getting wrapped on the knuckles. Obviously this doesn't apply to you, and that's great. I'm glad you find it ammusing, I do too, but a joke is only funny so many times. I would think at some point, someone would butt back.
"It would be a mistake to believe V99 represents the entire online patient community" I never thought that at all. I know that's not true by a long shot.
On another note, I'm very curious as to why so many are eager to support JM over WPI. It seems, given current information, that the majority would go the opposite way.
Anon at 6:17 obviously agrees although, ahem, is perhaps not totally unbiased ;) This person does bring up a good point, whatever decisions have been made, the founders put their money where their mouth is and that has got to count for a certain amount of "heart in the right place" points. Certainly if V99 gets them you must see the good in everybody.
The more I think about it, the more I wonder how much the WPI knew about the shaky ground JM led them onto and what it was like when they realized the extent :/
MattK
>" Yes I think I will rescind from being in the study and my family will too. If Dr. Mikovits and Dr. Ruscetti are not involved, then I want WPI to have nothing to do with me or my family. I'm contacting them today. I've had enough with miracle treatments
October 5, 2011 4:46 PM "
Please do this in writing and by Registered Mail. A pain, but the best way because the letter will have to be signed for.
>Conversely, one might ask why such a large portion of the community wants to throw Judy under the bus. Because that is happening, too. Go over to Phoenix Rising and see for yourself. See?
It's not going down well, and some are jumping to one side and some to the other. Some are trying to stay neutral. But for a lot of patients, it boils down to trust, and it was the WPI that set the tone of open communication, and then failed to follow through. It was the WPI that was going to take our donation dollars and open a multiapproach clinic. It was the WPI that was going to research CFS, and not just the one possible retrovirus. It was the WPI that didn't say anything about the departure of Peterson, the guy who had his name on the door.
That's the point. Maybe there are good reasons for this that or the other thing. Who knows? We have been asked to invest our last bit of hope and our last dollars into an institute who in return promised to be "different", to be open, to be forthcoming. Certainly you have to understand that it's not Judy, or Jamie, or any other scientist or doctor, who asked us to rally behind them with fund drives and donations. It was the WPI.
It wasn't Judy or Jamie or any other doctor or scientist who promised us a new era and treatment on the horizon, it was the WPI.
It was HOPE that was being offered, to a community that had done without for decades. So surely, before judging patients for "getting involved" in the conversation and making noise about being hurt, you can maybe see why patients are upset? And maybestop blaming the sick people for scientists and researchers not helping us? That's highly cruel.
>So some of these people are stupid, some are incompetent, and some are unethical.
Maybe there's no need to take sides at all.
Can't we just throw them ALL under the bus and move on?
>oh my god this blog is going to self-destruct any moment. we really do look like a lot of crazy folks.
sad.