XMRV and chronic fatigue syndrome: Now I aint sayin shes a gold digger...

I was reading the next segment of Brian Deers expose on Andrew Wakefield this morning, and I couldnt help but notice some similarities between Andrew Wakefield and Judy Mikovits.

Mikovits was plucked from obscurity by people with an agenda. The only thing the people with the agenda didnt have was science to support their agenda. Mikovits provided them with that 'scientific support'-- one paper. High profile journal. High PR/news coverage. That one paper has lead to a gold-mine of 'diagnostic' tests (owned by the people with an agenda + Mikovits), drugs (Ampligen, an antiretroviral that has *failed* for *decades*), and supplements (BioRay, minimum)-- immediately want insurance to cover the tests/drugs, despite no FDA approval or established connection between test-->disease. Mikovits hailed as a savior by a maligned patient population despite every other scientists inability to replicate her results. Mikovits reacts violently to critiques of her research, never does the tests to prove critics wrong, never publishes replicated results in different patient populations. Rewrites history over and over and over so no one knows what she really did in the methods. Tells her fans she can connect XMRV to everything and anything under the sun-- still no publications. Tells her fans that other scientists are out to get her/them. Promotes bad science and non-information to her fans, who dont know any better, to make them feel 'informed' and 'educated' and persecuted by scientists. The people with an agenda release press releases left and right...


As FOX News and Glenn Beck would say, "Im not saying there is a connection, here. But it really makes you think."

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New findings will be presented by Dr. Judy Mikovits on January 17th, at a medical conference in Santa Rosa titled "The XMRV Retrovirus and its association with cancer and neuroinflammatory diseases: The latest on research, detection, and treatment". Also, findings with antiretrovirals will be presented: the good news: almost all CFS patients showed remarkable improvements after receiving antiretrovirals - the group that received Viread and Isentress faired out best - probably owing to some of AZT's toxic side effects, the group given AZT had higher fatigue scores than those receiving Viread and Isentress. Dr. Deckoff Jones, and her daughter report that they are 75-80% better at this time.

It takes either brass boobs or egregious stupidity to hint that Mikovits is an unethical scientist, a gold digger, as you so blithely put it.

From the Blood Working Group (which voted to ban CFS patients from donating blood), here is a statement from Harvey Alter. You DO know who Alter is. Co-discoverer of the Hep C virus? Lasker Award winner? Respected scientist and researcher?


DR. ALTER: Since Dr. Lo [from the FDA] had to leave early, I felt I had to come up and do some defense of him and Judy as well. I think, when a group finds a new agent, they become biased that this agent is real. When another group doesn't find an agent, they become, I think, even more biased that the agent is not real. That leads to this kind of contentiousness.

I think our goal should be not to bring the other side down, but to find the truth. I think the truth will out over the next year, with studies that are already planned.

At this point I concur that we have no evidence for causality. That's going to be very difficult to come by, especially when we are detecting at the limits of detectability and when assay performance is very critical to get equal results.

But I still want to counter by saying I think the current evidence for disease association is very strong, even though not universally confirmed. But IT HAS BEEN CONFIRMED NOW IN AT LEAST FOUR STUDIES, two of which were presented today, that either XMRV or a polytropic MLV is associated strongly with chronic fatigue syndrome. A point that I think was misrepresented today: In those labs who do find the agent, it is very reproducible. Judy has found the same patients to be positive by culture year after year. We have found a patient to come back after 15 years and still be positive. So this is not a single, isolated finding. It's confirmed by sequencing. It's reproducible over time.

Dr. Hanson has shown today how critical the assays are. When she tweaked her assay, she went from no findings to findings almost identical to the Lo lab. The diversity is now being confirmed also in the original WPI group. XMRV isn't the only agent even in the WPI lab.

Despite the very legitimate concern for contamination -- I think this is a serious issue -- there have been hundreds of negative controls in the same laboratory that are always consistently negative. An extremely sensitive mouse mitochondrial DNA has always been negative in the Lo laboratory. Lo has done the IPA assay that Dr. Coffin recommended. That is also negative. There just has been no evidence for contamination. Although you could say maybe the negatives could be negative somehow and the positives positive for contamination reasons, it really is not logical that that would be so.

I'm not a molecular biologist. I defer to Dr. Stoye, who is world-renowned in that area. But just as a simple doctor, it seems to me that you have used single-case anecdotal evidence to knock down the various possibilities. I just want to make a case to the committee that you can't -- your conclusion is that anything can happen in assays, and therefore it probably has happened this time. I think using that kind of anecdotal probability is not valid to negate REPORDUCIBLE DATA FROM FOUR DIFFERENT LABORATORIES. So at least keep that in mind.

Lastly, I'm not a chronic fatigue [syndrome] doctor, but I have learned a lot about [it] in the last six months and have spoken to a lot of patients. I'm absolutely convinced that when you define this disease by proper criteria, this is a very serious and significant medical disease, and not a psychological disease. It has the characteristics of a viral disease. It usually starts with a viral-like illness. If XMRV is not the causative agent -- and it may well not be -- there is still need by other groups to look for the next agent which may be the case.
Sorry to take so much time.
DR. HOLLINGER: Thank you, Harvey.

By Anonymous (not verified) on 12 Jan 2011 #permalink

You are a stupid little girl. What have you done of value? What have you published? Where have you worked? You write for a stupid little blog for graduate school boys and say vulgar things just to get hits to this pathetic little blog of yours. IF you grow up, I doubt you will be getting a job doing much of anything. You are a stupid, nasty, little nothing and you will remain a stupid, nasty little nothing.

Sadly you are an ugly girl. You may be able to get a few bucks for a blow job. That's about what YOU are worth.
Dr. Mikovits resume is below. Are you a PhD yet? Will you ever be one? Your stupid nasty comments WILL come back to bite you in your fat ugly ass. Stupid little nothing that you are.

Dr. Mikovits spent more than 20 years at the National Cancer Institute in Frederick MD during which time she received her PhD in Biochemistry and Molecular Biology, investigating mechanisms by which retroviruses dysregulate the delicate balance of cytokines in the immune response. This work led to the discovery of the role aberrant DNA methylation plays in the pathogenesis of HIV. Later in her career at the NCI, Dr. Mikovits directed the Lab of Antiviral Drug Mechanisms (LADM) a section of the NCI's Screening Technologies Branch in the Developmental Therapeutics Program. The LADM's mission was to identify, characterize and validate molecular targets and to develop high-throughput cell-based, genomic and epigenomic screens for the development of novel therapeutic agents for AIDS and AIDS-associated malignancies (Kaposi's sarcoma). Formally trained as a cell biologist, molecular biologist and virologist, Dr. Mikovits has studied the immune response to retroviruses and herpes viruses including HIV, SIV, HTLVI, HERV, HHV6 and HHV8 with a special emphasis on virus host cell interactions in cells of the hematopoietic system including hematopoietic stem cells (HSC). Dr. Mikovits' commercial experience includes serving as a senior scientist and group leader at Biosource International, where she led the development of proteomic assays for the Luminex platform that is used extensively for cytokine activity assessment in therapy development. She also served as Chief Scientific Officer and VP of Drug Discovery at Epigenx Biosciences, where she led the development and commercialization of cell and array-based methylation assays for drug discovery and diagnostic development. Dr. Mikovits has co-authored more than 40 peer-reviewed publications that address fundamental issues of viral pathogenesis, hematopoiesis and cytokine biology.

By sharon stapleton (not verified) on 12 Jan 2011 #permalink

Judy Mikovits:
to quote John Mellors "how many negative will it take to get rid of these religious fanatics"
You may blog it and discourage anyone from [participating ..Their goal is to prove everyone negative fro XMRV/MRV total corruption...crime against humanity.

You are surely not suggesting that Mikovits has sold her soul for a mere $146,154 a year for a 45 hour week are you - which is what WPI says her contract was in 2008 ? Still I guess all that travel and schmoozing at conferences has its attractions.

Mikovits is being quoted by some CFS activists as telling CFS sufferers 'off the record' that drug trials on XMRV positive(what's that again ?) patients, are proving effective with some actually 'cured'. These 'off the record' briefings are inevitably pumped out around the online forum gossip mills, along with promos for donation campaigns for WPI.

It's difficult to sort out whether all this is just ineptitude on the part of Mikovits, desperation on the part of patients, naivite by the WPI board or a combiation of all three. It's a mess and no serious medical Institute would allow thngs to progress in this way.


Worship is very attractive (though money is nice).

Read the Wakefield files in the BMJ, particularly the stuff about UCL/Royal Free trying to induce him to try and replicate his results. He refused.

The only implication I can see is that he knew then that they couldn't be replicated. He just thought he wouldn't be caught.

But he is still making pots of money and, as I say, that worship is heady stuff.

Now, I am not saying that she's totally lost it, but this really makes you think:

"I am not a clinician. I am a scientist. My enthusiasm for antiretroviral drugs stems from (unpublished) laboratory evidence that treatment with antiretrovirals impacts the disease.

Although scientific convention generally requires not discussing prepublication findings, the enormity of the public health disaster ethically requires suspension of these norms."

Judy Mikovits

To say Mikovits is wrong in her findings or not tactful in the statements she makes is a valid argument. The question of if she is right should be answered this year with the upcoming studies from Dr. Singh and the NIH BWG. But to suggest she is knowingly committing fraud like Andrew Wakefield by making up data or altering results is ridiculous and way off base. Do you honesty believe she is committing a fraud and is in it only for the money? That is quite a statement to make.

IVI-- That doesnt include any contracts she might have with REDLABS/VIPDx (shes the 'vice president'), or for her 'cooperation' with the manufacturers of Ampligen and the supplement companies. ~$145K would be baseline, and its still twice what my boss makes. 7-8 times as much as I make.

Scientists dont make money. We are not MDs.

Also, cool article :)

LJ-- I will happily grant your premise. Calling Mikovits a fraud is, at this point, over the line.

But what descriptor would you currently use to describe someone who:
Made a fantastic scientific claim about a physiologically and psychologically vulnerable population, purposefully obfuscated her methodology for over a year to detract others from replicating her results, refuses to replicate her results, cannot replicate her results with blinded samples, violently attacks others who cannot replicate her results (which is everyone), while constantly feeding demonstrably false scientific 'information' to the vulnerable population she is 'helping', all while directly and indirectly profiting from sales of products to said vulnerable population?

What would you use as a descriptor for that person?


By Prometheus (not verified) on 14 Jan 2011 #permalink

In response to this above: despite every other scientists inability to replicate her results.

No other scientist has tried to replicate the study.

Ernie, as has been said before, over and over again... why would you try to replicate that original CFS study when it was badly done (can't the WPI afford a qPCR machine?), and went up online with so little detail that you couldn't have done a "true" replication even if you'd wanted to?

If XMRV were out there, it shouldn't be so difficult to find.

#8 Prometheus
Pathological in this sense, or are you referring to her mental state?

By nejishiki (not verified) on 16 Jan 2011 #permalink



Mikovits treats the formation of the ad hoc hypothesis like it is going to be an Olympic category.

She fulfills the definition better than the cold fusion guys AND Langmuir's original examples to the extent it is the only plausible explanation of her behavior.

How strange (and kinda cool)is that.

By Prometheus (not verified) on 17 Jan 2011 #permalink

Btw, does anyone know if Annette Whittemore's daughter is tested positive for XMRV and taking anti retroviral drugs?

In somewhat related news, WPI is opening a clinic in May, the "Center for Neuro-Immune Disease".

They're not taking insurance, Medicair or Medicaid, but state:

"Fully operational, the clinic should generate income that will be donated back to the WPI and the research, percentage of gross to be announced at year end. We intend to have a fund for patients who otherwise cannot access care as soon as we are in the black."

They're not taking insurance, Medicair or Medicaid...
Because you can go to jail for defrauding the government, and insurance companies dont cover woo anyway (and will aggressively pursue compensation if it turns out youve defrauded them).

Not that thats why theyre doing that, or anything...

I also think it is patently obvious now that Dekoff-Jones 'blog' was a publicity stunt, now that she is working for WPI et al. Fitness programs/supplements do similar things all the time. "Look at me 2 years ago! I was fat/had CFS! But after working with the fine folks at ____, look at me now! I was once just like you, but I got better, thanks to ___! Thats why Im now working with ____! I am living proof that ____ works!"


Im interested in seeing how their 'clinical trials' work. Its cute that they are lying to patients about the side-effects of antiretrovirals, the 'strength' of the link between CFS and XMRV, and their lack of a quantitative measure of whether the antiretrovirals are even working. But you cant lie about this information to IRBs. They will not get approved. Which means if they are doing this shit on the side, and WPI is still affiliated with the University of Nevada, if they get caught doing an unapproved human trial, the federal government will shut down all clinical trials in the University of Nevada system.