Judy Mikovits Has A Drawer Full Of Papers

by Johan on November 14, 2010

A listener on TWiV 105 compared dr. Judy Mikovits from the Whittemore Peterson Institute (WPI) to Andrew Wakefield, a British former surgeon and researcher best known for his discredited work regarding the MMR vaccine and its claimed connection with autism and inflammatory bowel disease. The Lancet retracted his 1998 publication, noting elements of the manuscript had been falsified. This is obviously not a compliment, but it was only a matter of time before someone would make the connection after Judy Mikovits not only spoke at an autism/anti-vax conference, later she also claimed that vaccination causes autism by triggering XMRV, without any publications or data to back up those claims. The hosts of TWiV didn’t want to go as far as to compare Mikovits to Wakefield, but the habit of Mikovits and WPI to make claims without proper publications leads to loss of credibility. The expression they used was gone off the rail.
Alas, Judy Mikovits is not the only doctor/researcher in the biomedical camp of ME/CFS to repeatedly make claims without backing them up with data and publications.

What is holding WPI and Judy Mikovits back from publishing? Apparently she has a drawer full of scientific publications, but, just like in the early days of HIV, no one will publish them. Just like the authors of negative XMRV papers got accused that THEY did not want to find it, now she claims that THEY don’t want to publish her research. Who are THEY this time? Is it Science, a handful of prestigious journals, or dozens of scientific and medical journals? I am finding it hard to believe that all relevant journals like Science, PLoS, PubMed, Journal of Virology, Journal of the American Medical Association, British Medical Journal, Retrovirology, Journal of Chronic Fatigue Syndrome, … all refused. But even if this is the case. So what? Why not do it yourself?

Publish

Cards

What was the reason they gave for refusing? I can think of several reasons without reverting to a conspiracy theory: bad science for one or maybe they want to wait for a validated clinical test for XMRV & MLV before linking it to yet another disease. Don’t drag the patient community into a(nother) conspiracy theory; that is not going to help our cause – quite to the contrary. What is so special about these journals anyway? They are a means for scientists to get their work published and date back from way before the advent of the world wide web. These are the tenties of the 21st century. This is the age of self-publishing. What are you waiting for?

Publish

What are your priorities? The advancement of science, helping ME/CFS patients, or a publication in a prestigious journal? Something to add to your resume? Another feather for in your cap? You’ve got the research. Just do it.

Publish

What do you have to lose? Respectability? You should have thought of that before making unsubstantiated claims. You should have thought of that before cozying up to the anti-vax movement. You should have thought of that before accusing fellow scientists of foul play just because they don’t agree with you or didn’t confirm your findings.

Publish

What about peer review? No worries. Just publish it on a website in the same way as it would be published in a journal. Doctors, scientists, students, and biomedical literate patients will rise to the challenge and pick it apart, praise it into heaven, or grind it into the dirt. You will get your peer review. Can you handle it?

Publish

Stop whining, “THEY won’t publish my articles. THEY don’t want to find the virus.” No conspiracy theories please. Conspiracy theories are the slippery slope towards irrationality. You’re not doing us patients a favor with this attitude. We might end up next to anti-vaxers, creationists, and alien abductees.

Publish

Set up a website for the articles, add a big Paypal “Donate to WPI” button, add a link to the order form on VIP Dx’ site, and add some Google AdSense bars. You will certainly make some money with your publications, which can be used for funding more research. Unethical? You should have thought of that before scaring patients into taking an unproven commercial test which had conveniently become available shortly after the publication in Science – without declaring a conflict of interest. You should have thought of that before urging patients who tested negative, into taking the next generation test, because of false-negatives.

Publish.

Cards

I don’t want to compare Judy Mikovits to Andrew Wakefield, or Annette Whittemore and WPI to the next company specialized in emptying the pockets of desperate patients. I really don’t. The research is promising, it has been confirmed by others, but more often it has been challenged. I agree with the hosts of TWiV, namely that the jury is still out on XMRV and MLV. What I am afraid of is that now ME/CFS finally receives much needed attention — thanks to WPI, that WPI’s attitude to make claims without publication and to accuse those who don’t agree or couldn’t confirm their findings of foul play, which could alienate a lot of potential allies. It’s not just between WPI and THEM. There are a lot of virologists out there who are very busy with their own research projects and (might) start taking an interest in XMRV & MLV and/or ME/CFS. Don’t put them off with your wild accusations and conspiracy theories. It should be easy to set this straight. Walk your talk.

Publish

Dr. Judy Mikovits and Annette Whittemore from WPI, I challenge thee. I call your bluff. Cards on the table, please.

Publish

Marxists are people whose insides are torn up day after day
because they want to rule the world
and no one will even publish their letter to the editor.
Mark Helprin

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{ 70 comments… read them below or add one }

chris November 14, 2010 at 10:54 pm

Hi,

Thank you for writing this. I don’t think you are thinking clearly on this one. The WPI is a very small group of people who have many daily pressures. The wider world does not realize how few actual people are behind this official name, the Whittemore Peterson Institute. This “edifice” has either no staff or borrowed part-time staff. It is not necessary for me to list the stresses on these people. Anyone who follows them closely can guess what they are. Each of us can be critical of the WPI’s shortcomings. It is very easy to do this. I have my criticism but keep them to myself. The WPI needs help. Research is paramount for them, treatment of patients is second. They have people shooting at them from all directions. The idea that they have time to self-publish to an audience who wants to put them out of business is a joke. If I were you I would put my mind towards how you can help this organization so that you do not wake up some morning and find that they are gone.

Again thanks for the article.

Best,

Chris
cfspatientadvocate.blogspot.com

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Johan November 15, 2010 at 8:42 pm

@chris
Thanks for the comment Chris.
If I am not thinking clearly I can always blame brainfog. ;-)
I have no knowledge of WPI’s inner workings. I do not know any of the people who work there personally, nor have I spoken to any of them. I have never been there. I only see what is available online. I wouldn’t care that much if WPI was just a research institute and Mikovits just a researcher, but they aren’t. The way the ME/CFS community (at least a large portion of it) is identifying with them is scary. The whole hype is scary. The loss of critical thinking by patients and organizations (websites and periodicals who consider it proven, who don’t even mention the negative studies, conspiracy theories, …) is scary. It’s almost like a religion sometimes. The current biomedical attention for ME/CFS is based on one thing, and one thing only: XMRV. If one thing goes wrong; it was contamination, it’s harmless, it’s an opportunistic infection, it’s not pathogenic, … we have nothing left and it’s back to CBT. There are so many ways of looking at ME/CFS: neurological, immune system, digestive system, … If XMRV would prove to be a dead end, then we would at least have some other research going on. The only researcher of which I recently read something who keeps an open mind and doesn’t focus solely on XMRV as a cause is Nancy Klimas.
That people are shooting at WPI is understandable, they have done the same thing to the researchers of the negative studies. What goes around, comes around. When other scientists take an interest in the research but are put off by the unscientific attitude we have a problem as it could reflect badly upon the ME/CFS community. Attitude is easy, WPI can change that overnight. As for the science, I say publish. Making claims without publication is the science equivalent of gossip. If the journals don’t want to publish or if there is a long waiting list, then self-publish. Why not start a new trend? If they are shooting at you, provide them with a clear target. Publish it with all the nitty-gritty details and let them have a go at it. Science will prevail, that is what I (want to) believe.
It may be hard to believe, but most of my criticism on the biomedical camp I keep to myself, hoping to be proven wrong in the near future.

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WR November 14, 2010 at 11:04 pm

The WPI and Mikovits have never made the claims suggested here. Following research undertaken with the National Cancer Institute into CFS and Autism, they have hypothesis what the results may mean, and have offered variety of different options based on their findings, not just the ones named here. As for speaking at an Autism conference, there is nothing wrong with that at all. Conferences should attract scientists within the relevant field. Autism is not a disease to be looked down upon.

Naturally with a discover of the magnitude of XMRV, it is better to have this research accepted into journals with excellent reputations and impact scores. That is the way it works. Clearly publishers are waiting for further information from the Blood XMRV scientific working group, and perhaps the Lipkin study, both of which involve the WPI/Mikovits, before publishing any new positive XMRV studies. After all, the Blood working group are said to have discovered the reason for the negative studies, an issue with sample processing/preparation, and will finally show that there has been no contamination. Furthermore, the WPI/Mikovits are not the only team finding MLV-realated retroviruses in CFS patients, that are not able to get their papers published. It is also unlikely to be study design. The WPI were published in ‘Science’, they know how to jump through all the correct hoops to be published and be acceptable to their superior standards. Also, lets not forget that these are joint studies with Frank Ruscetti’s lab at the National Cancer Institute. His reputation alone should put aside any fears of poor study design.

You ask, ‘Why not publish yourself’. Simply, because soon the WPI/Mikovits and others will be able to get published in top notch journals. Thereby avoiding the criticism of some of the negative studies, who paid to publish in lesser journals. Mikovits wasn’t whining when she said that no one would publish them at this time, she was likely answering a question on when their next paper, or anyone else’s paper would be out next. I have never seen anything that shows them claiming there is a conspiracy in this.

As for the WPI’s test, one reason for providing this was to allow those of us in locked down counties to take their lives back, and prove there was something to this discovery. If people in the UK had not taken the initiative to get themselves tested, then the ridiculous claim that this retrovirus could not have travelled, would have perpetuated for longer. It also contributed to the renewed interest in those who produced the first two negative studies, to start retesting. If you think there has been no move to stop or ruin this discover you are mistaken. Look at what happen to the NIH/FDA study that validated the findings of the ‘Science’ paper. So I say, wait, and then let the WPI prove all the neigh sayers wrong.

PS
The results and conclusions of autism study conducted by the WPI/NCI is on the XMRV 1st International Conference website for anyone interested.

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Johan November 15, 2010 at 8:46 pm

@WR
I have provided the links to the resources on which I based my article. Mikovits did suggest that vaccination could lead to autism via XMRV. Mikovits did speak at AUTISMONE. The anti-vax movement is using what Mikovits said. Mikovits didn’t say that her articles are awaiting publication, but that no one wants to publish her articles – big difference. If she was misquoted or misunderstood by journalists and patients on each and every occasion I would like to hear that so I can update my article or even publish an erratum. I might even go as far as an apology.

Who is looking down upon autism? After all the controversy caused by Wakefield, the scientific publications that found no link between vaccination and autism, and the deaths of people incl. children who didn’t get vaccinated because of Wakefield, it is an extremely bad judgment call to go out there and tell parents that vaccination might cause autism. Without peer reviewed publication and confirmation studies.

I don’t want to go into that discussion, but the NIH/FDA study wasn’t exactly a validation. A validation would mean that they found XMRV, they didn’t. They did find MLV, which was helpful, if not a lifeline for WPI.
I am puzzled, in what way can a XMRV test help you take back your life right now? It’s a commercial test, not a clinical one. There is no treatment, no cure, and it won’t help you get disability and/or benefits.

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WR November 16, 2010 at 1:10 am

Mikovits did not say XMRV causes Autism. She hypothesised that XMRV can cause XMRV to replicate after having a vaccine. That is not the same as saying vaccines lead to autism, but that the children may start to show signs, or get sicker then they were.

Where do I say that Mikovits said she had articles awaiting publication? Talking about unpublished studies is normal in the scientific world. The majority do it.

The NIH/FDA validate the finding of an MLV-related retrovirus. Alter and Lo agree. P or X, they will have the same parent virus, and they do share over 95% sequence identity, which is less than for HIV-1. As Singh has said, “Thus it is conceivable that PMV, M-PMV and XMRV may cause the same disease(s), if they cause disease at all.”

A test can help patients take back their lives by removing the power from the psychosocial school, by forcing scientists to recognise that people in the UK are testing positive, thereby invalidating their hypotheses that XMRV has a passport and was refused entry to the UK. This is one of the reasons that UK researchers are retesting.

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Joey November 14, 2010 at 11:56 pm

Bravo many times over. I agree it’s not time to call Judy a “Wakefield.” However, her remaining credibility with me was destroyed when she presented at AUTISMONE. I am skeptical to the point of cynicism now about anything she has to say. Thank you for this post.

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Joey November 15, 2010 at 2:49 am

Oh, and to the commenter above me: AUTISMONE is a cavalcade of quackery and anti-vax pseudoscience. Andrew Wakefield has been completely discredited, with his MMR/autism paper removed from the journal where it was published, with the editor saying he felt as though he’d been duped. Wakefield also had his right to practice medicine in the UK revoked. Not to mention the unnecessary and injurious colonoscopies he performed on children.

This is the man whose conference Judy attended, and it was she who perpetuated the antivax liars by speculating that vaccines could cause autism. (This is a quote but I don’t have the article at hand.) It was hugely unethical of her to support very bad and damaging pseudoscience in order to get her pet XMRV associated with as many diseases as possible.

If you believe autism and protecting children are serious problems, you should be horrified by Judy presenting at AUTISMONE, rather than supporting it.

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Johan November 15, 2010 at 8:48 pm

@Joey
Hi Joey. The way the ME/CFS community is identifying with WPI and Mikovits (see my reply to chris) we have a problem when she loses credibility. One can regain that, but it’s better not to lose it in the first place.
Not vaccinating is much worse than the alternatives considering available evidence. It is an extremely bad judgment call to scare parents into not vaccinating their children considering for example the whooping cough epidemic in California.

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~K~ November 19, 2010 at 5:18 am

Am I the only one that actually read where Judy Mikovitz speculated about autism? She laid out a series of conditions — the child had a genetic predisposition, the child had external stressors, the child had a latent XMRV, the child had a vaccine, and then the autism appeared. Note that in this scenario if the child does not have XMRV, autism does NOT appear after vaccination. Instead, for it to happen, a child has to have a host a predisposing factors, and vaccination is the straw that breaks the camel’s back. Vaccination does not ’cause’ autism, it activates the XMRV infection, and it is the active XMRV infection that causes autism. She’s speculating — and she clearly identified it as a speculation, that in this particular subset of vulnerable patients, vaccination is a possible trigger that arouses XMRV. XMRV is the actual culprit. If all of this is true, it doesn’t even need vaccination; it could be any stressor, such as an accident, an illness, etc, that is the ‘last straw’ that overwhelms the body’s ability to cope.

She has done further research on autism and XMRV and presented a poster about it; briefly stated, there is a strong association in families for a cluster of autism, CFS, and XMRV. An association is not causation, but it’s certainly an interesting finding, and it’s not original with her, either. A CFS + autism link had been proposed before anyone of us knew what XMRV was. Other studies have found that parents with CFS are 4x more likely to have a child with autism as the general public.

As a parent with CFS and a son with autism, I find my family fits the particular set of parameters that she is studying, so I am intensely curious about further developments. On the other hand, I also realize — and everyone else needs to realize also — that it’s a particular subset of people that meet these parameters. This may not apply to the much larger numbers of people with CFS or with autism. However, if it does pan out, then it would be lovely if my family and other families like mine could get some help. Having our concerns taken seriously and subjected to research is encouraging. Disparaging comments and narrow-minded refusal to think outside the box do not drive science forward.

Other physicians — very reputable physicians — have called for new thinking on autism, contending that the physical findings in autism argue for an epidemic of infectious disease. This was going on before Judy Mikovitz, and it’s not quackery. With autism spectrum disorders affecting 1 in 88 American boys, it’s high time to rethink our assumptions about autism.

The notion that a neurological disorder could be caused by an infection is a rather new idea, but is happening not only in autism. Recently research has shown a strong correlation between strep infection and being diagnosed with narcolepsy. Correlation is not causation, but research is moving rapidly, and it is theorized by very reputable scientists that it will turn out that strep causes narcolepsy, probably by damaging the immune system. Narcolepsy, like autism, was originally thought to be a psychological issue, then was shown to be a physical, neurological disorder, and now research suggests that they may possibly be caused by an infection. Both need further research to clarify, replicate and prove the theory, which will then hopefully open up new treatments.

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Johan December 7, 2010 at 8:21 pm

@~K~
There are more theories on autism, I recently read that it could be linked with leaky gut, like some other neurological diseases. I remember reading that a high IQ is a risk for having autistic children. Pick your theory.
Scientist may speculate all they want, but not in front of a audience of lay persons; they are not prepared to deal with it, to distinguish between speculation, interesting hypothesis, groundbreaking research and proven research. I think that should be a lesson learned from the past year.
I think we can agree on more out of the box thinking, more research and that when a doctor doesn’t know it is not necessary between the patient’s ears.

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Patty November 15, 2010 at 8:32 am

Joey and Johan Shut Up! Last time I checked you didn’t have a PHD in anything!

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Johan November 15, 2010 at 8:49 pm

@Patty
You are right that I do not have a PhD, but does that matter? I am not exactly discussing gag sequences and PCR here. If you need a PhD to discuss XMRV/MLV research in a positive or negative way it would get awfully quiet out there. Whole facebook groups and forums would have to shut down.

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Joey November 16, 2010 at 4:28 am

Patty, I see you have concluded that Johan’s and my opinions are invalid because we don’t have doctorates. May I ask where you acquired yours, since according to you it is a prerequisite for speaking one’s mind? By your own logic, if you don’t have one, you should quit posting your opinion.

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WR November 15, 2010 at 9:51 am

Wakefield is irrelevant to the discussion, and Autismone is clearly not his conference.

As for Mikovits, she did not say that vaccines cause autism. Mikovits hypothesised that because of the clinical similarities of ME/CFS and Autism, that XMRV infection may be detected in subgroups of ASD. She then showed some of their research into this. Now before anyone complains that you shouldn’t show unpublished research at a conference, about 99.9% of scientist do this. Here is one example. Bridgett Huber at the Invest in ME conference – she presented very early data on two separate areas under investigation. It’s a red herring and again irrelevant.

If more scientist’s of the caliber of Mikovits chose to present at conferences, decent science would have a better chance of taking hold, rather than allowing poorly constructed studies with illogical conclusions, that are sponsored by big pharma and money strapped Governments, to cover the economic and suffering of these growing diseases.

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Johan November 15, 2010 at 8:50 pm

@WR
Go easy on the conspiracies. If ME/CFS is a retroviral disease it would be lucrative to big pharma to prove this, not the other way around. As for the government, I think most politicians have no idea what it is about, there is a lot of conflicting information out there and patients are mostly not capable of explaining it to them in person. And then you would need a patient who could put things into context: the biomedical and psychosocial camp, the different criteria and how and by who they are used, the proven research, the promising research, … Even for the government taking action is more cost-effective than not taking action, surely when it would prove to be retroviral.

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WR November 16, 2010 at 12:57 am

The same people who make money from big pharma make money from insurance. It’s easier and cheaper for them to stop this being recognised. If you look back at what politicians have read, heard, been involved in, it is very clear that they know exactly what is going on. Perhaps not the misappropriation of funds, which has happened in the past, or the strange accounting practices now going on at the NIH. But they do find out eventually. And no Government plans for the long term, that’s when your opponent gets into power, and when you start to complain about them not doing what you wouldn’t. Hence why they ignore the cost-effeectivness of doing something now.

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Joey November 16, 2010 at 4:29 am

Wakefield is FAR from irrelevant. Judy’s association with him damages her credibility enormously, and that’s what this article is about.

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Debbie Anderson November 15, 2010 at 9:58 am

When you put millions of your own dollars into finding a treatment and a cure for M.E., as the Whittemores have, then you might have the right to be critical of that group of people. What have you done to find a treatment and cure? Have you tried to get papers published on any of your work which might lead to a treatment and cure? Have you funded any research that would lead scientists to find a treatment and a cure for M.E.?

It’s really easy to sit on the sidelines, use a caustic wit, and denigrate others who ARE trying to find that treatment and cure, but it’s not really productive.
It might make you feel as if you are contributing something to the overall picture, but actually, its just kind of sad…

I suggest you put your money where your mouth is. Maybe doing something productive and proactive with your life will help with the anger you seem to be feeling. Directing that anger at the one place that is actively trying to find answers for those of us with M.E. is not only silly, but mean-spirited.

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Johan November 15, 2010 at 8:51 pm

@Debbie
Are you saying that I should deposit a million dollar to voice my opinion? What about freedom of speech?
Actually I have and still am funding research: the XMRV/MLV test (no results yet), the neurotoxic metabolite test, and a wide variety of blood test of which at least some of them are used for research purposes (immune system). All paid by me, no intervention by health insurance organization. Voila.

Pun intended, but it is not easy to have to sit on the side-lines and I would love to be more productive. One point of my criticism towards WPI is that they don’t try to find answers (plural), they have their answer (singular) and want it to be it. Period. All the bets are on XMRV, and if it turns out not to be the answer then it is back to CBT. There is so much more to ME/CFS, to prove that you are really sick: immune system, digestive system, … Placing all that money, hope, energy, and awareness on one possible cause is not a good strategy.

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Joey November 16, 2010 at 4:26 am

I find it excellent that Johan is in fact doing a great deal of productive and proactive work with his analysis of CFS and the community, including its researchers.

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Jane Clout November 15, 2010 at 10:32 am

Johan, please don’t be so naive. Big discoveries that change paradigms always meet resistance in the early days. Start (not at the beginning) with Galileo, and move through time to the early days of HIV/AIDS, noting all the other incidences along the way. You misinterpret what is happening now with XMRV and the WPI.

Think on, fellow PWME.

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Johan November 15, 2010 at 8:53 pm

@Jane
Usually I am told I am too skeptical or critical, even negative, it has been a while since someone called me naive. ;-)
Maybe I do misinterpret what is happening inside WPI, but I only have press releases, patients blogs, Facebook, Twitter, and science blogs as my sources. If journalists and patients at conferences, interviews, workshops, … misquoted, misunderstood or exaggerated what Judy Mikovits said, then my article might be way off.
You right about the big discoveries-change paradigms-resistance thing, but is XMRV that big discovery that will change everything? Maybe, and maybe not. They are still looking for a decent test, let alone that they have proved causation.
I wouldn’t put Judy Mikovits in a line-up with Galileo just yet.

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Michele Krisko November 15, 2010 at 11:25 am

All of us patients around the world are impatient for answers. We wouldn’t be normal if we lived in this imprisoning disease and were not sitting (or more aptly laying) on the edge of our seats with anticipation of more published studies which would lead to clinical trials.

Those of us patients who are sitting, waiting, reading and hoping are not privy to all the things being done behind closed doors so how can we really have an accurate opinion on the subject. Really the most we can have is hopeful expectations. The only one’s who know what is going on at WPI are those involved. Unfortuantely science plays out in a certain accepted fashion, some of it beneficial and some maddening. As time moves forward perhaps that process will change but for now it is what it is and to be taken seriously and get published you have to follow the established rules.

In our haste as patients waiting we must keep in mind the consequenses of being too hasty and think a few steps ahead.

I do understand some of what Johan was trying to say but the attack on Mikovits character by inferring she must be more concerned with money is uncalled for. She is a deeply caring woman who is doing things neither Johan nor the majority even know about behind the scenes. This woman carries us all to bed with her, thinking how she can help us as quickly as possible. I do not view people as saviors, for they are not; however I think Dr. Mikovits deserves our respect as do the WPI staff, the CAA staff, and other organizations who are working for the benefit of all M.E/CFS patients.

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Johan November 15, 2010 at 8:55 pm

@Michele
It would be nice if Mikovits either followed the rules and awaited publication in a peer-reviewed journal before speaking up, or either changed the rules and self-published before speaking-up. But referring to unpublished studies and saying that THEY don’t want to publish her results is frustrating for the information junkie that I am. Alas, she is not the only one doing so, referring to studies which may (or may not) be published at some time in the near (or distant) future, but she and WPI have the most “clout”.
As for the money, there are some conflicts of interests as scientists would call it.
WPI and Mikovits (still) deserve respect, but they are losing credibility with scientists who started taking an interest in XMRV/MLV. That is worrisome. Not my little rant.

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laura November 15, 2010 at 2:40 pm

Try being XMRV+ and having CFS. then you will get it.

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Johan November 15, 2010 at 8:56 pm

@laura
What about having ME/CFS and being XMRV-? Does it make a difference? I know patients in both situations, who is worse off?
As for myself the jury is still out on the XMRV/MLV + or – verdict.

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WR November 16, 2010 at 1:11 am

Early days for testing. They could be missing plenty of positive patients.

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Jackie November 15, 2010 at 2:54 pm

I think you may be overlooking the fact that these stunning novel retroviral discoveries are the combined work of several agencies and world class viral researchers and pathogen hunters, some already experts in HIV research, including top scientists at the NCI and Cleveland Clinic, and subsequently the top echelons of the FDA/NIH, and other prestigious academic institutions in the US – not ‘just’ Dr Mikovits (although she already has a long and proven track record herself) and the WPI.

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Johan November 15, 2010 at 8:57 pm

@Jackie
I think some of the world class viral hunters you are referring have only recently joined up. Some of the authors of the negative studies also have proven track records.
As they are still looking for a reliable test for MLV (and XMRV) it is, IMHO ;-) , too soon to speculate on causation and treatment.

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Dionysus November 15, 2010 at 4:31 pm

Your article is speculative and lacks scientific rigour.
You make statements that demand to be backed up by evidence, but that evidence is lacking.
You make wrong assumptions about a situation that you clearly don’t understand.
You speak ill of a good scientist and you are apparently ignorant of the scientific facts which motivates her to speak out.
The science will ultimately prove you wrong.

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Johan November 15, 2010 at 9:03 pm

@Dionysus
Yes, it is speculative and it is not meant to be a scientific article.
Actually I am the one asking for evidence, asking to help me understand. Don’t turn it around.
Yes, I am ignorant of the scientific facts which motivate her to speak out. So is the majority of the people out there. That is the whole point I am trying to make.
The whole article is a challenge to prove me wrong and I wouldn’t mind to be proven wrong.
By using ‘ultimately’ you are implying that the science isn’t there yet, but Mikovits says it is in her drawer. If I have to wait to be ultimately proven wrong by science like you say, this would mean that Mikovits is indeed making unsubstantiated claims, even lying to us. Prove me wrong now!

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oerganix November 15, 2010 at 6:36 pm

You say you don’t want to compare Dr Mikovits with Dr Wakefield. Your whole post does just that. You smear her and WPI and then don’t want to take responsibility for it!

Dr Wakefield was kneecapped by the drug industry. The whole campaign against him is just as bogus as your campaign to impugn Mikovits and WPI. Other doctors who take ME/CFS patients seriously and treat them, in Belgium and the UK, have also had their ability to practice medicine taken away by the establishment that seeks to keep it in the psychiatrists’ hands.

Thanks for revealing where you’re coming from.

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Johan November 15, 2010 at 9:05 pm

@oerganix
Actually I don’t. Wakefield falsified his studies, I have said no such thing about WPI or Mikovits, nor do I even hold such thoughts. I want them to publish and behave in a way that will not discredit them and the ME/CFS community.
As for the Belgian doctors you are referring to, I am as outraged about that as the next patient, but funny enough even as a Belgian I feel I do not know enough to write about it. Apart from being a member of the Facebook group, providing a link to the online petition in a previous post, alerting them privately to some mistakes/vagueness in their information that is all I can do about that right now.
Your comment was quite revealing on your point of view on the vaccination and autism issue.

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Joey November 16, 2010 at 4:32 am

Supporters of Wakefield will never be proponents of science-based medicine. If they ever became the latter, they’d quickly shed their adoration of an ethically challenged and immoral human being who tortured children and directly helped usher in outbreaks of vaccine-preventable disease.

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Keith November 15, 2010 at 8:04 pm

This article has a nasty tone to it.:(
Dr. Mikovitz and the WPI never calimed XMRV caused autism. She did hypothesis or think out loud that it could possibly be a factor as there testing has found it in a high rate of autisic children and there families and ME/CFS and Autism share some similiar features.
I believe that is how all many great discoveries are made by starting with a hypothesis. How dare she speak it outloud, right?
I’m getting really tired of a male dominated society allways attacking outspoken and bold woman. My mother was an highly educated outspoken woman who is a published author in the mental health field and I saw her attacke by men and male dominated institutions all the time.
Is she not aloud to share her thoughts and ideas? She has done nothing but hypothesis outloud. I find that healthy. Discoveries are made through the sharing of ideas.
It is the WPI’s right to wait keep trying to have there data published in peer reviewed scientific journals. It gives the data more strength, credibility and perhaps wider audience. If there is a scientific bias against their data being published it is not the first time this has happened. The same situation occured with HIV in the early days. I am not at all surprised this is happening and niether should you if you went back and studied the history of HIV publications or rejection of publications.

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Johan November 15, 2010 at 9:21 pm

@Keith
I guess you could call my article provocative.
Yes, she did. As I try to recall what she said it was still a minority of autism patients who tested positive. Saying that to worried parents, with for example a whooping cough epidemic in the USA, is almost tantamount to shouting fire in a crowded theater.
What does Mikovits’ gender has to do with it? Duh? It never even crossed my mind.
There might indeed be a lot of similarities between ME/CFS and HIV in the early days, both in raising awareness and in (rejection of) publications. It would be interesting to read a study on that. Do you have links?

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Linda November 15, 2010 at 9:07 pm

Thank you for another wake-up call, Johan. Judging from the reactions of some commenters here, it was necessary to drop this brick. I can hardly grasp why people are reading so selectively and think to have discovered another fierce ‘attack’ on Judy Mikovits here. There is criticism here, rightly, of some ‘dangerous liaisons’ WPI and Mikovits got engaged in after their initial fine accomplisment.
But most of all I read this as a plea for scientific credibility. And I also read an open invitation here (to share hard data), a positive challenge (walk your talk), and a very fair request (publish the hard data, even if not through the established channels, – there are innovative ways to do that). Why did most commenters miss that?

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Johan November 15, 2010 at 9:33 pm

@Linda
Maybe I should use more smilies? It was intentionally provocative, maybe the comments and my replies will put that more into context/perspective.
I mean what I say about self-publishing. If she really has trouble getting her research published, then self-publish and let the world peer review it. I have no bad intentions proposing this. WPI has already written history with its XMRV research regardless of future outcomes and the probably most hyped research article ever ;-) . Why not try a new approach to publishing? There are ways to grade comments and commenters.

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Jen H November 15, 2010 at 10:36 pm

While I think you make some valid points, Johan, I think that there are most likely factors that we are not aware of yet pertaining to XMRV/MLV’s at this time.

I do, however, feel it is wrong, unfair, and somewhat slanderous for you to compare Dr. Mikovits to Dr. Wakefield. Just because Dr. M spoke at an Autism One conference, it does not mean that she agrees with the A-1 ideologies and treatments.

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Johan November 16, 2010 at 9:12 pm

@Jen
I didn’t (want to) compare Mikovits to Wakefield. I remember clearly stating that. I am worried that when people start comparing M to W and if ant-vaxers start using her arguments, then that is bad for us. We could do without the extra controversy.

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Keith November 15, 2010 at 11:25 pm

Here is the youtube clip of Dr. Mikovitz responding at one point on whether this finding of XMRV could have any meaning to the autism community on Nevada Newsmakers. When asked she uses the word herself that she is SPECULATING” that an immunization when turning on and b cells would stimulate XMRV reproduction if the virus was already present. This could cause an imbalance in the immune system between itself and the virus. She is SPECULATING on this process happening causing an immune dysfunction. She says so herself.
Is it wrong to speculate? I personally don’t feel it is. You may disagree.
I have ME/CFS and 2 children with autism and I don’t have a problem with her speculating on it.

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Johan November 16, 2010 at 9:03 pm

@Keith
She may speculate all she wants, but there is a place and a time for everything. Right now it’s not the time for speculating too much, hopefully they will agree on a test for MLV and XMRV soon. An autism conference, with strong anti-vax sentiment and worried parents, is not the right place to speculate.

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Keith November 15, 2010 at 11:52 pm

Here is a link showing that most autistic children tested were positive for XMRV although it was a small sample size of 17 in which 14 were positive.
Above you stated a minority of patients had tested positive but that does not appear to be true from the info I could dig up and had recalled following the research.http://www.autismcalciumchannelopathy.com/HIV_and_Autism.html

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Johan November 16, 2010 at 9:05 pm

@Keith
I seem to recall 40%, but I might be wrong about that. Still it is a very small group that got tested to start speculating in public.

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wellsprungalice November 16, 2010 at 2:10 am

Dr Mikovits perhaps needs to consider the power of media and how her actions will be perceived before she explores possible tangents to the main thrust of research.

Not many scientists are adept at PR. Not many specialists in non-media disciplines are (witness Tony Hayward, a geologist by trade, blundering through the aftermath of the BP spill).

Not many understand that, unless you manage the media, including the blogosphere, it will manage you.

Yes, maybe it’s valid to say that XMRV might have a role in the Autism/vax picture – but given how politically muddy that water is, and knowing that research into XMRV depends on maintaining its credibility to be heard, is it really a bright idea to say so?

If you are dealing with difficult scientific concepts, you have to accept that the media *will* attempt to simplify them, and their simplification *will* lead to misinterpretation and a confused picture. So, KISS – keep it simple, stupid!

A good PR person would be guiding the WPI on these matters (I know it’s probably impossible for them to afford this kind of support).

I think Dr Mikovits is guilty only of naivite about the effect of her actions on the image of the WPI and XMRV research once the media (and the blogosphere) have spun them.

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Johan November 16, 2010 at 8:57 pm

@wellsprungalice
I never looked at it like that, that WPI and Mikovits are naive in their dealings with the media. The Science article was probably the most hyped research paper ever. I don’t know if they planned it like that, but I always assumed that they stimulated all the attention in social media afterwards.
Call me paranoid, but if I would have any dealings with the media I would make sure I have a voice recorder with me at all times. I would use the possibility of commenting to correct any misquotes or misunderstandings and I would use my site or blog to get the information out there as I see at.

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Dominique November 16, 2010 at 2:40 am

Well…I think you opened a can of worms, eh!? I agree with you in that any scientist needs to be able to back up what they say. But I also have concerns that there is some things going on in our country where the truth is being withheld. I just finished reading two older books on ME/CFS and there have been links made between AIDS and ME/CFS and other illness through the HPV-6 (?) virus. Yet, no where is anyone talking about it. It just died. What if these two illness are indeed linked? We would then have a major epidemic on our hands.

I think, for me, the difficulty – especially after 20+ years of this – is who do I trust? I can’t make head or tail of what has happened and is happening today. That makes me frustrated beyond measure. I want answers and I think 20+ years of waiting should have produced something. So that begs the question, for me at least, why haven’t we discovered ANYTHING?

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Johan November 16, 2010 at 8:45 pm

@Dominique
Maybe we shouldn’t fight battles on so many fronts. All these questions, the chronic neglect from government, the injustice, the biopsychosocial mafia, the whys, the hows, … Just focus on the now, what do we need now: awareness, research, and treatment. Without pointing fingers, without the baggage of 3-4 decades. Save the rest for later.

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Cam November 16, 2010 at 3:36 am

Well written and refreshing post. I share all of your concerns. It’s about time someone had the courage to publicly voice some criticism.

I have my own concerns about the WPI. I’ll be starting a blog about them for the same reason you wrote this post. It would be a good thing if another organization picked up the XMRV ball and ran with it.

Feel free to contact me at my email address.

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Johan November 16, 2010 at 8:20 pm

@Cam
Thank you, someone must play the devil’s advocate every once in a while. Very useful.
I have nothing against WPI as an institute or Mikovits as a person. It’s part of their behavior/attitude that I have a problem with, that could reflect badly upon the ME/CFS movement. If the hype surrounding XMRV lives up to all expectations I will have no problem with WPI reaping the profits from their work.
My 2 cents based on 2 years as a hobbyist blogger: don’t start a blog against an institute or person, but we could use some more skeptical/critical voices out there.

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Joey November 16, 2010 at 4:24 am

Wow. I’m amazed by the rude and obnoxious tenor of many of these comments. Does one have to have a PhD to be able to read, comprehend, and educate oneself on what’s going on? Did this post, or my comments, include any complicated scientific analysis. No.

And I find it equally hilarious that people accusing Johan and myself of not being qualified to discuss these things do not have the degrees they insist that we have. Quite the double standard: your opinion, formed with a lack of a PhD, is perfectly valid, but those of people also without PhDs whom you disagree with are invalid?

Also, I’m absolutely gobsmacked that anyone here would actually support Wakefield. These kinds of scientifically ignorant opinions and comments are exactly why the mainstream CFS community is of no interest to me any longer. It’s all about emotion, no critical thinking or research involved. And that’s a damn shame. We’re lucky to have Johan.

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Johan November 16, 2010 at 8:30 pm

@Joey
Thanks for the compliment.
The way the article was written was a guarantee to provoke some emotional response, but some of the visitors and commenters are getting the message.
The whole hype/debate surrounding XMRV is too emotional to my liking. I understand, but I don’t like it. If fellow patients are allowed to post articles glorifying WPI, only mentioning the positive studies, attacking the authors of the negative studies, … I almost feel obliged to approach it from the other side. ;-)

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Jen H November 16, 2010 at 4:55 am

Are Mikovits and Wakefield associated? I have never ever heard of this. Please tell me if you know for sure.
Just because Mikovits spoke at a conference that Wakefield was at, it doesnt mean that they are collaborating or that she agrees with his methodology of procuring subjects for his research.
About vaccines, there are too many reports of people who have ME/CFS and children regressing after them, there may be some merit to these concerns. However, just because Judy speculated about vaccines and XMRV it doesnt mean that she is anti-vax. In fact in that same interview she states they have a goal of making a vaccine effective against XMRV infection.

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Johan November 16, 2010 at 8:06 pm

I do not know whether they are associated, I surely hope not. I also didn’t say she is anti-vax, but when you speak at an autism conference with strong anti-vax sentiments about a retrovirus that could be triggered by vaccination and cause autism you must be aware that this will have repercussions.
They are probably trying to make a vaccine for HIV for 2 decades, and less then a year after the article in Science they are talking about a vaccine for XMRV? Please. Lets wait for the clinical test first, redo the studies (+ and -) with larger numbers of patients, try to establish causation, and then try to find treatment.

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Jane Clout November 22, 2010 at 11:29 am

I think we have to trust the WPI to manage things their way. There are so many pushes and pulls in the web of reality, things are not so simple. The clearest vision is nearest the center.

Johann’s post is a tad arrogant, IMHO.

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Johan December 7, 2010 at 8:52 pm

Arrogant, dunno, it’s supposed to be provocative. IMHO

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linda December 2, 2010 at 9:58 am

i think MLV-related viruses will be found to cause all kinds of diseases and i think vaccines will be found to often be contaminated with them – just as a recent article reported animal vaccines were found to be contaminated with an infectious retrovirus.

i am glad that there are researchers who are not afraid to say what they think, even if it might be considered controversial in some circles.

without beliefs that seem “extreme”, we would never have gotten anywhere. all historical trailblazers were ridiculed – until the truth came out.

MS, autism, CFS…progress in these diseases have moved at a snail’s pace. it is about time a search for real a pathogen takes place!

linda

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Johan December 7, 2010 at 8:59 pm

@linda,
You, and many others with you, would like to belief that MLV is the cause of many diseases.
Progress is sometimes hard work, sometimes an “extreme” idea, and sometimes luck. Most extreme ideas probably turned out to be nothing more than an extreme idea.
You are right about the snail’s pace, but I believe it was dr. Singh who recently said that all easy diseases probably have been found.

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Katrina December 6, 2010 at 12:32 pm

I have re read your comments and have some real concerns. I do not have the impression that you are aware of the magnitude, over many, many years, of refusal to fund research into this disease. I’ve lived and seen this for the entire 20+ yr period. There were top AIDS and Cancer Specialists eager to do the research. EVen if they squeaked some impressive work through (coming close to markers ), they were promptly DEFUNDED, and their labs and careers at risk. It became the kiss of death to career to study “CFS”. Countless labs, clinics and studies were canceled out, being repeatedly refused funding. These had nothing to do with being controversial people themselves, or connecting with controversial “others”.

Now, I am blown away to be hearing the very same things re this Retroviral discovery. An entirely different matter from legitimacy of the work itself. But a quiet
warning, from colleagues not to touch this with a 10 foot pole. WHY? I do not know. I just know I have heard this from multiple sources, and far from the center of our advocacy or WPI world. A big contrast to a yr ago, when Retrovirologists were chomping at the bit to get cracking on studying this new, exciting discovery.
I have a non RV Scientist friend is who going to look into what the H is going on, because it sounds so suspicious…that this disease, with so many devastated by it…and the X and previous work…NOT being aggressively pursued. I have known of others with friends in the Science fields who received the same reaction.
Even before the MULV discoveries, I had a relative who was a retired head pathologist at the Mayo Clinic. He was amazed and appalled that no one yet was addressing CFS at the Mayo Clinic. I was told by a top Neurologist “We have no one studying CFS at the Mayo Clinic”. We have nothing to offer you. Now, why is that? I do not know. Perhaps you could pursue this mystery yourself.

It is not soley funds that are needed to publish work that’s been done. It also requires peer review, which of course requires peers willing to do reviews. What if they are not? Why would this be? Based on what, exactly, Scientifically? Since this “CFS” research and publication suppression was occurring long before Judy Mikovits, or anyone attending an Autism Conference, perhaps you could access the intellectual curiosity to look into it. The Washington Post ad campaign states that the WPI has been turned down for at least 6 studies. This is so familiar!! Repeatedly, over and over, to countless prestigious Scientists all over the world, for over 25 yrs.
While you are at the mocking of “conspiracy theorists”, could you answer this? Why is there a sealed Govt. file on this disease in the UK, from the peak of the 80s epidemic years? Why has it had the usual period of 20-30 years extended to something like 78 years ? This has nothing to do with Judy Mikovits’ work, or what she hypothycises sp?, or what Conference she attends. It happened before she came on the scene.
Could you ponder this, and get back to me? Thank You.
I’m going to check out the Washington Post Ad, and forward it everywhere, hoping to spark enough interest from the Media, Public and Medical fields, to find out why things are stalled…and break up the log jam. Hopefully, while I still have a brain and few years left.
Katrina
ME/CFS 1985

Katrina

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Johan December 7, 2010 at 9:29 pm

@Katrina,
I am very much aware of the lack of funding (and the money I had to spend on it, the wages not earned), the lack of attention, I really do, and I have no answers. I have heard the rumors, the hearsay, the conspiracy theories, … but are they answers? I have no access to sources to solve this mystery and I don’t feel like repeating the rumors, hearsay and conspiracy theories. I don’t know why the files in the UK are sealed for such an extended period, but I find conspiracy theories so depressing after a while and so disempowering. I guess it would be too much to hope that some of the Wikileaks files are about ME/CFS.

I noticed that the Washington Post ad doesn’t mention WPI. I am not a fan of the ad campaign, with the papers awaiting publication (Singh) and ongoing research (Lipkin) it is an example of bad timing and bad taste. I just hope it doesn’t backfire on us when the next studies are negative ones. But it is a “free” world – as I can have my say on my blog, others can do an ad campaign in the Washington Post.

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Debbie Anderson December 8, 2010 at 12:59 am

“I noticed that the Washington Post ad doesn’t mention WPI. I am not a fan of the ad campaign, with the papers awaiting publication (Singh) and ongoing research (Lipkin) it is an example of bad timing and bad taste. I just hope it doesn’t backfire on us when the next studies are negative ones. But it is a “free” world – as I can have my say on my blog, others can do an ad campaign in the Washington Post.”

Here I have to agree with you Johan. I have a really bad feeling that this virus ad is going to backfire on us. I have been told that the virus campaign is designed to force the government to act, and while i believe that it will force the government to act, that act will not be in our best interests. And I was told that the ad was designed to bring in more donations to WPI, yet as you said, there is nothing in the ad which mentions the WPI. I too believe its bad timing and bad taste, and feel that those who placed the ad will be lucky they are not prosecuted for trying to instill panic in the general public. One just cannot yell “fire” in a public arena, when yelling “fire” is designed to create panic in the public. It actually happens to be a criminal offense. And since Judy has not been allowed to publish further papers, there just is not enough proof as yet.

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Johan December 30, 2010 at 9:54 pm

I don’t think the ad qualifies for a criminal offense. If it does, a lot of ads would.
XMRV and MLVs receive too much attention for a cover-up, even if the most recent studies were rather negative (possibility of contamination). No retrovirologist will give up the opportunity to do research on a novel retrovirus. To boldly poke where no man has poked before is what’s being a scientist is all about.

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Katrina December 9, 2010 at 11:36 am

@Johan
Nothing I stated in my first paragraph is rumor, heresay, or conspiracy theory. Why would you respond with those terms? Perhaps you really are not aware.

You replied in the affirmative, yet called it “lack of” funding and attention. It’s not been the passive “lack of”; it’s been withdrawal, refusal, and rejection of… funding, replication, tests, treatment and disability benefits.

It’s also not been “lack of” attention to “CFS”. It has been entire stream of attention, from outright mockery within the CDC, to the derisive “Yuppie Flu” in the Media, to deluge of studies and publicity that patently falsely characterize those with it as hysterics, malingerers, depressed, personality disordered, exercise-avoidant, illness perpetuating, child-abused, deconditioned, tired people. Who need to exercise more, and stop “Thinking” they have a disease in which it is harmful, or even, a disease at all. All of this is quite well documented, in black and white.
The sealed UK files are a matter of Public Record.

At least you are honest and state that you find these matters depressing and disempowering. But placing these facts and those who address them under derisive banners does not make them incorrect.

We are different in this way. I find denying what is known, and prohibiting further data, extremely depressing and disempowering.

Of course I do also hear rumors heresay, and theories. I follow some of them, or wish them to be better investigated. But have not concluded the larger scope, or origin of the core, of the ultimate “WHY”. I can conclude re: individual events or pieces, but I seriously do not know, or pretend to… the complete WHY.

Do you not find that demoralizing in itself? I have lost 25 years of my life, to daily pain, cognitive deficit, Neurological impairment, suffering and Cultural ridicule. WHY is this acceptable, without even the dignity of acknowledgment, or knowing WHY ??

Tho I brought it up, I’ll leave the debate over the ad for now. I hear your concerns, and respect differences of opinion on the strategy. What I’ve not found acceptable is the frank attempts to sabotage it and vilifying of anyone supporting it. I admit I came onto the topic rather late. I made a calculated judgement call, once I knew it was happening, to vote on the final version, and to actively promote it. This is partially influenced by the upcoming BWG meetings (Dec 14th & 15th), and their far too slow Public response to the safety of the blood supply. They have been meeting since August of 2009.
At the least I feel that the “Precautionary Principle” and, “First do no Harm” is strongly warranted by now.

FYI….during the period that led to ActUp in AIDS activism, there were rather fierce differences of opinion in strategy, internally. Some were outraged and terrified at more radical approaches, certain that these would alienate the Scientists from continuing on. Others were certain that the circumstances were so dire and hopeless that the more bodacious approach was critical.

Personally, I believe that history will show that both “conservative” and “aggressive” actions, carefully organised, succeded in getting things moving, and countless lives saved.

Katrina

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Johan December 30, 2010 at 9:46 pm

@Katrina
As far as your first paragraph is concerned. I am well aware of the lack of funding in biomedical research and the diversion of funding to the (bio)psychosocial monstrosity. The only researcher I know of who has received the kiss of death is De Freitas, but you use the plural: AIDS and Cancer specialists, labs, clinics, studies, … Until you add names, dates, testimonials, … that kind information is neither useful nor convincing. Feel free to add a link.
It is also a matter of priorities. Biomedical research, respect and treatment are the top priorities as I see them. Anything that endangers those like making unsubstantiated claims, conspiracy theories, the hysteria, … must be sidetracked. Even the dirty history of CFS and the injustice done to patients diverts the attention away from the priorities, so they can wait IMHO.

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Sachiko November 30, 2012 at 10:12 am

Absolutely, Chris & Pauline. I was never fond of conspiracy thoieers BUT the number of previously-honest researchers who appear to have switched to the Dark Force side for no real reason, makes me wonder. Why did Ila Singh, once praising of XMRV, even having applied for patents, suddenly switch to denying it? Nothing else had changed. She claims it was just clumsy wording in her earlier papers. And Stoye maybe he can’t help it if he’s born thick. But the likes of Coffin & Racaniello DO know differently. It must be that they are threatened from above, by the Puppeteers, with loss of funding, tenure, status, contracts, all that stuff, and scientific integrity has gone well out of the window. It’s a sad world when Honesty and Integrity aren’t allowed in.

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Johan November 30, 2012 at 7:47 pm

@Sachiko,
Well, XMRV turned out to be contamination that will explain Ila Singh’s attitude towards XMRV. And Coffin and Racaniello go where the evidence leads them. ME/CFS looks like chronic infection, but no one has found the cause yet.
So, no need for conspiracy theories, threats, Puppeteers, or Men in Black.

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wellsprungalice December 6, 2010 at 8:22 pm

Excellent post, Katrina, thank you.

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wellsprungalice December 10, 2010 at 4:53 pm

Katrina

I would be most grateful for the opportunity to ask you some questions offline. Please would you be kind enough to contact me via the contact form on my website, which should be linked to my name.

Thank you

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Justin Reilly May 12, 2011 at 4:02 pm

I share your frustration at WPI’s data not being ‘freed’ into the public yet. I think you make a pretty good argument that it would be good for WPI to just self-publish. I think it’s a hard call. I think WPI is making the best call though, under the circumstances. Look at how DeFreitas’, WPI’s and Komoroff’s (1992) studies have been attacked though published in the most prestigious of journals. Imagine how attacked and buried they would be if they decided to self-publish. It took Komoroff FIVE years to get his landmark study published in Ann of Internal Medicine and still Bill Reeves got away with saying in MMW that what they studied “was neither CFS nor any other clinical entity”!!
Mikovits’ claims of bias are entirely consistent with the history of ME research and publishing. Pls read Osler’s Web or else defer to those who have or have otherwise apprised themselves of the political history of ME. Your dismissal of ‘conspiracies’ is contrary to the facts.

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Tony Mach January 25, 2012 at 2:12 pm

If she wanted to get the word out about the science (if we presume that was her motivation), she could have published in low-impact journals with ease (Lombardi et al. 2011 is proof of that). For crying out loud, she could have someone set up a website (as you outline) and call it “Journal of XMRV associated diseases”. If she really wanted to get the word out about her research (so other researchers could join in and help us), she could have done so. No need to publish everything in Science.

The fact is, her results and papers existed only in the context of her colorful talks. That is the disservice she has done to the patients and the field. If she had the papers ready and already submitted to a journal, she could have published them herself for long if (all?) the journals didn’t want to. For over two years, there were only two studies published: Lombardi et al. 2009 and Lombardi et al. 2011. For two years we have been hearing in her talks about XMRV in autism (6/15), about XMRV in atypical MS (3/3), about XMRV in fibromyalgia (12/20) – with no new data since at least October 2009.

I call BS on the existence of said papers. It is a canard. A red herring. Sand to throw in our eyes. There is no evidence she ever submitted any papers to any journals – no less that she ever written any these papers she claims that nobody wants to publish.

Her claims are a disservice to us all.

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