XMRV and Chronic Fatigue and Autism and Chronic Lyme Disease: "Trusted organizations"

A while back I wrote about how the lead researcher at the Whittemore Peterson Institute, Judy Mikovits, is speaking at Autismone, a huge anti-vax rally in Chicago later this month.

I thought Judy was just a crank. Dime a dozen, whatevs.

Turns out things are worse than that.

Much much worse than that.

Its cranks all the way down.

Vincent Lombardi, first author on the original 'XMRV causes Chronic Fatigue' Science paper, founded some weird testing company several years back. This weird testing company was then bought by Harvey Whittemore (father of The Princess That Cant Be Named), and turned into VIP Dx.

VIP Dx is now the only company that has WPIs SUPER EXTRA SPECIAL XMRV test (dont have super special test, cant see XMRV!).

The Vice President of VIP Dx is... Judy Mikovits.

So lets be honest, here, VIP Dx is apparently the for profit arm of WPI. The same individuals are involved in both groups.

Well, turns out VIP Dx is buddy-buddy with BioRay. At BioRay, you can buy all kinds of fantastic supplements, like a mouthwash that keeps your dental fillings from giving you mercury poisoning, and my long-time favorite supplement, colloidal silver.

Apparently, VIP Dx and BioRay have teamed up to 'cure' autistic kids by pouring this crap down their throats:

BioRay and VIP Dx Labs present collaborative CytoFlora study results at Autism One

VIP Dx Laboratory is highly regarded in the field of Chronic Fatigue Syndrome and neuro immune disease testing. VIP Dx also tests for intestinal gut dysbiosis by means of the Immunobilan test, the same test used in BioRay's CytoFlora study. The CytoFlora study showed remarkable results with autistic children. Specifically:

* Improvement in speech and social interaction
* Reduction in abdominal pain and gastro-intestinal symptoms

Until now, antibiotics have been the only recognized treatment for elevated pathogenic bacteria and gastrointestinal inflammation. "We test many Chronic Fatigue patients in our laboratory with elevated IgA and IgM to bacterial antigens and most are put on antibiotics for six to eight months followed by a course of probiotics," noted Craig Setter of VIP Dx Laboratory. "The CytoFlora results represent the first time I have seen such a significant decrease in IgA and IgM in only a few weeks."

BioRay will be presenting the results and methodology of the CytoFlora study at Autism One.

Eleven children from BioRay's Cytoflora study were also tested for XMRV at VIP Dx Labs. Six tested positive for the gammaretrovirus XMRV. Two of these children are siblings whose mother also tested positive for XMRV. Dr. Judy Mikovits, Director of Research at Whittemore Peterson Institute, will be speaking about XMRV at Autism One. We believe this unique and informative presentation will be of interest to doctors and parents in the world of Autism.

VIP Dx licensed the technology for testing XMRV from Whittemore Peterson Institute. Come and speak with Marguerite Ross, Director of Marketing & Client Relations at VIP Dx, and Dr. Vincent Lombardi, PhD, Researcher & Consultant to VIP Dx. The VIP Dx booth is located next to the BioRay booth outside the main auditorium. This is a special opportunity to hear more about testing and on-going research occurring in the world of neuro-immune diseases.

Note the glowing review of this 'supplement' from VIP Dx.

And wait for it-- Judy can 'find' XMRV in autistic kids!

The findings have potential significance for a number of other disorders including, it turns out, autism.

Researchers tested blood samples from a "small group of children" with autism and found that 40% of them were positive for XMRV, according to a statement from the Nevada Commission on Autism Spectrum Disorders. More testing is underway which, the Commission said, "could dramatically increase that 40% positive finding." (Given the small sample size, such a statement is purely speculative).

Now, VIP Dx, BioRay, and Judy Mikovits are all going to AutismOne, with VIP Dx and BioRay having booths there to peddle their respective crap.

Amazing all the coincidences that are lining up here-- WPI just happened to find a retrovirus thats associated with every and any disease under the sun, including autism. But no one can find this virus unless they use tests from VIP Dx, a company who happens to be partnering up with BioRay, to sell anti-autism supplements.

Meanwhile, Judy has also 'found' XMRV in patients with Chronic Lyme Disease:

Q: How might the finding of the XMRV virus relate to Lyme Disease?

A: We are seeing XMRV in Chronic Lyme patients sent to us from several physicians. The hypothesis that chronic XMRV infection creates an underlying immune deficiency is consistent with many co-pathogens including Lyme.

Lo and behold, look at what other tests VIP Dx offers: LYME DISEASE!

Minor problem. *wispers loudly* Chronic lyme disease, under no uncertain terms, does not exist.

*slow clap*

Touche to you, troupe of mean hearted snake-oil salesmen! Duped Science. Duped the National Cancer Institute. Duped Cleveland Clinic. Even got Judy to completely and utterly sell out her mentor.

Someone has requested my opinion on these two letters in Science. I 100% believe the Netherlands groups recollection of Judys presentation at the Lisbon conference. Not only would disbelieving them require mass hallucination as an explanation, and them flat out lying about questions they asked her in the post-talk Q&A, but I have listened/watched/read numerous presentations given by Judy Mikovits. Her manner of speaking is very imprecise, and sometimes she says that are completely wrong (I dont believe I have ever seen her use the word 'quasispecies' appropriately. She also said some very bizarre things about endogenous retroviruses.).

Then on the other hand, we have one description of the patient cohort in the original Science paper:

Patient samples. Banked samples were selected for this study from patients fulfilling the 1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome (S1) and the 2003 Canadian Consensus Criteria for Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and presenting with severe disability. Samples were selected from several regions of the United States where outbreaks of CFS had been documented (S2). These are patients that have been seen in private medical practices, and their diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits and reproducible immunological abnormalities. These included but were not limited to perturbations of the 2-5A synthetase/RNase L antiviral pathway, low natural killer cell cytotoxicity (as measured by standard diagnostic assays), and elevated cytokines particularly interleukin-6 and interleukin-8. In addition to these immunological abnormalities, the patients characteristically demonstrated impaired exercise performance with extremely low VO2 max measured on stress testing. The patients had been seen over a prolonged period of time and multiple longitudinal observations of the clinical and laboratory abnormalities had been documented.

One description Judy was giving at conferences:

Moreover, it was surprising to learn during the presentation of this study at the 2009 Tri-Society Annual Conference in Lisbon (3) that the material studied was derived from patients from the well-publicized "outbreak" of CFS from Incline Village, Nevada, dating back to the 1980s. This outbreak has long been suggested to be caused by a viral infection, most notably with Epstein-Barr virus (4) or human herpes virus 6 (5)...
...Mikovits also reported a cytokine profile with high interleukin-8 and macrophage inflammatory protein-1{alpha} and a low interferon-{alpha} concentration (3). The authors suggested that the selection of their group of CFS patients was partly based on reproducible immunological abnormalities and presented it as an additional argument for the viral etiology of CFS. Although this cytokine profile may be associated with a possible viral infection (while by no means being necessarily specific), it has not been reported previously as such in patients with CFS.

And now a third description of that same cohort in a letter in Science:

Samples included in our study (1) were from CFS patients who fulfilled both the Fukuda criteria and the Canadian Consensus Criteria (CCC), regardless of severity. We regret that a sentence in the original supporting online material in (1) implied that immunological abnormalities were part of the CFS diagnosis; indeed, while many such patients do exhibit such abnormalities (5, 6), they were not required for diagnosis. All patients that met Centers for Disease Control and Prevention and CCC criteria were accepted; none were excluded. Patient samples were obtained from 2006 to 2009 and stored in the Whittemore Peterson Institute (WPI) repository. We did not state in Lisbon (7) or elsewhere that the samples analyzed in (1) were only from patients from documented outbreaks of CFS, nor did we state that the 101 patients described in (1) exhibited all the immunological abnormalities described in our Lisbon conference presentation.

LOL, WUT??? And its everyone elses fault that there is any confusion?? Just like its everyone elses fault they didnt understand WPIs PCR methods. Cause PCR is soooooo hard, no other lab on the planet can be trusted to do it without Judy personally 'instructing' them.

Recently the American scientist Dr. Judy Mikovits visited several European research groups to instruct them in the proper laboratory technique.

Bull shit.

Bull fucking shit.


More like this

Get real ERV and sycophants - everybody on earth has vested interests whether it is a 20+ year career built on attempting to "prove" ME/CFS (WHO ICD-10 G93.3) is a psychiatric disorder (Hello! Confirmation bias) or a parent who gives up on the CDC and decides to invest in private research. Golly it's not like that's never happened before. Remember how many private attempts there were to legitimize AIDS and confirm HIV in the 1980s?

It is incredibly naive to declare that only the WPI has an agenda. With the exception of the retrovirologists in the Dutch group, all the groups writing into Science are highly invested in ME/CFS not being an infectious neuro-immune disease - check PubMed. SHOCK. You mean they aren't neutral? Get me my heart pills Myrtle!

Yeah Judy Mikovats is a flake. Who cares? She's hardly representative of the many biomedical CFS researchers out there. Focus on the science. Not ill informed rumors that WPI was using one of the contaminated PCR kits. A quick factual check would accurately inform you that they weren't. Obviously subsequent XMRV studies done by anyone regarding any disease needs to use PCR primers derived from
gag or env, not pol. Big D little u and h.

Not only are the NCI and the Cleveland Clinic heavyweights in this ballgame, but so is retrovirus specialist Dr. Ila Singh and the researchers on the GlaxoSmithKline XMRV study. There are also quite a few XMRV studies in press right now including I believe a CDC study.

But gee that would take all the fun out of petty character assassination wouldn't it ERV. Whatever will you write about then?

"The WPI paper is #21. That is the only time it is mentioned, and not by name, at the end of the paper.

That is how scientists operate.

Not via the insane theatrics of Judy/Annette/Princess Crazy Ass."

That is not how Myra Mcclure acted and you are not slagging her.
She made numerous unfounded unproved comments in the Bristish Press about XMRV and how she was sure 1000% that it was not the cause of CFS/ME. She made unproven statements about contamination etc. I'll go and dredge them all up for ya shall I.

After McClure was through talking to the British press the word was that XMRV was not related to CFS. There were no question marks untill patients started to question this very arbitrary pronouncement made from 1 study at the time.
This virtually killed interest in further study of the possible relationship and killed any funding WPI might have recieved.
So you are saying scientists don't talk t the press. Well Myra McClure did and made comments that were very misleading indeed. Rip her apart if you are going to be unbiased which you are not.

Are you raving about the Danish? study which did RNA type PCR testing on 20 year old blood samples. I read that RNA PCR stops working after 2 years becuase the RNA degrades.
This is the level of crap comming from the studies that prove no XMRV in CFS. But not a mention of it here.

Your blog is biased and not scientific. It is merely and attack machine.
Most of the bloggers on science blogs reveal their true identities but you erv are abusing a known person from a very secure perch of anonimity.
You could be Myra McClure or Simon Wesley for all we know.
You can assure us all of your identity all you like but as a scientist should know that proof is the key.
I amazed at science blogs letting you carry on in such a biased way.
The treatment of CFS patients over the 35 years of my illness is a much bigger fraud and traversty by the medical profession and psychologists than Judy Mikovits.
How the hell you get a top listing in Google makes me very suspicious indeed.

i just skimmed thru this info, but i would like to remind everyone involved that u are talking about real people, and i think u should be considerate of real people who are suffering. i have been sick nearly three years and still have no help - thanks to assholes in the swedish medical system who don't care if you live or die or how much you suffer. cfs and lyme go beyond the borders of the u.s., and it's insane how different the criteria changes at borders. i still don't know what the hell to believe about my condition. but i do know that the doctors have been absolute monsters, and it's hard to stumble across threads like this bc there's a lack of sensitivity. do you know how many people commit suicide bc of these diseases?? do you know how hopeless it feels to be such a patient where no one even bothers to acknowledge that ur life has become a physical hell and that instead of help or compassion, you're just attacked by the doctors. and then threads like this seem to attack the patients as well bc mustn't we be stupid for believing in this or that?? ... i just think it weould go far to show some compassion. a lot of people reading threads such as these are very sick people who have no help and who are trying to make the decisions they can to save their lives bc we've learned that no one else cares.

VIP Dx, a company who happens to be partnering up with BioRad, to sell anti-autism supplements.

Ummmmm, you mean BioRAY? You might wanna change that before some burly guys in cheap suits show up at your door. I should know, I got kneecapped for returning a leaking gel box! ;-)

By Amenhotepstein (not verified) on 14 May 2010 #permalink

But but but ... only BIG PHARMA can have monetary interests in sick people!

Mikeymousevich is an heeeeeroooooo! Fighting against the Man!

Eurrrgh. How long before they bring Wakefield on board? He knows a thing or two about PCR as I recall it.

since when is Forbes an expert on Lyme Disease? There are so many issues with the IDSA review panel, that credibility continues to be strained. The panel was chaired by a former president of the IDSA, for one.

Before making your uninformed proclamation that chronic lyme does not exist, you might want to look at the relative science. This document could start pointing you to some:


By UnaSpenser (not verified) on 14 May 2010 #permalink

I was hoping the 'Lyme Literate' crew would show up so my regular readers could compare/contrast the behaviors of 'Lyme patients' with 'CFS patients'.

Im sure there are lots of people with CFS who will love Judy/WPI associating them with the 'Lyme Literate'.

ERV if you want the iron triangle of patient behaviors, you should talk about this "paper" ( http://www.dovepress.com/articles.php?article_id=4431 )which concerns Morgellon's and does its best to tie it in with a diagnosis of Lyme's disease. PalMD has a thread about it and by comment 3 we had a relative of Morgellon's sufferer wishing it on others :P

An added bonus of this paper is that with tick borne disease rates in California at or approaching 0/1,000,000 the authors suggested finding them in most of their patients seen at a lab in San Francisco.

Oh Noez! Autism is caused by XMRV virus! We wanta vaccine! Oh shit, wait a minute...

Move along. nothing to see...

re Chronic Lyme:

I thought that untreated Lyme disease certainly was a serious chronic disease?

You then have people who did have Lyme disease and then go on to develop chronic health problems. It's rather uncertain if they have more health problems than the general population, but things don't seem conclusive either way yet.

Thirdly you have those people with chronic health problems of no identifiable cause who have found some doctor with a dubious Lyme test and are now think that they are suffering from Lyme disease.

If XMRV is found to cause CFS then I wouldn't be at all surprised if many of the third group had XMRV and had just clung on to the Lyme diagnosis while there was such uncertainty with regards to CFS. (Lots of people just trust doctors. If you have one doctor telling you that he doesn't know why you're ill, and another saying that your test results prove you have Lyme disease, most people will think they have Lyme disease).

re Mikovits comments on Lyme - just another example of her talking about a controversial topic without having taken the time to look into it. (Ideologically, Ive always been in favor of encouraging scientists to talk more casually in public as a way of helping people understand that Scientists are nearly as crazy as everyone else, and it's the structures and systems of scientific inquiry that lead to the development of such a rationalistic world view rather than the personalities of the people involved. The whole WPI/Mikovits thing has led me to question this. Some patients seem to be hanging on their every word rather than thinking "Huh - who'd have thought it. They chat shit too.")

re the VIP Lyme test - from what ERV said, and what I've read, they should be emphasising the limitations of their testing. Does smell a bit quacky.

re all the autism stuff - sounds quacky to me. I really don't know anything about it though.

re the Science letter - none of them seemed that interesting to me. I thought it was funny that the WPI's reply seemed to be trying to draw such a distinction between off-hand unpublished comments and the paper published in Science. Is this an attempt to row back some of their comments, and have people judge them only by their published work? If all the work for the Science paper really was fully blinded that makes it more likely they've found something, unless they really are complete frauds.

re confusion over the Science paper: The WPI were trying to slip in all sorts of backhanders to the psychological CFS researchers. Mentioning the immune abnormalities was their way of saying "Maybe you should have looked at this some time ago, eh?" I never read it as being a required part of their diagnosis. I also never read the Science paper as saying all the patients came from CFS outbreaks - rather, a number of CFS researchers examining biological causes are based where there were outbreaks (that's how Peterson got involved). I see why it was confusing, but I think that this is a genuine clarification rather than the WPI changing past claims.

re Morgellons: Why haven't they just placed some of the most adamant patients under 24 observation and care and see what happens? Why has no-one done this? Personally, I'm really uncomfortable with claiming that patients are hurting themselves and putting stuff in the wounds unless we've got some pretty clear evidence that this is what they're doing.

Also - why hasn't someone (the CDC?) sent a load of blinded samples to the WPI to test? Or am I unjust unduly impatient?

Wow... BioRay is snake oil city. They have one formula that they suggest is good for kids that contains 18% booze. Jesus. If Judy did find something she is lucky rather than smart. What an idiot.

Again, on the other hand someone from one of the CFS forums got to talk one on one with Coffin. Apparently a different lab at NCI are looking at verifying the results now and Abbott Labs "recently" have started to provide a test that can find XMRV. We should know shortly one way or another.

Don't forget the adorable twins Addi and Cassi, whose parents who've gone all-out and designed an appealing (if not heart-breaking) website to tell their story and hawk products (and hope), who are also positive for XMRV and THEIR diagnosis is Neimann Pick Type C. http://addiandcassi.com/we-dare-to-dream-for-a-cure/

It's certainly possible that Dr. Mak-up-shitz has found the cause of all these diseases, although she's remarkably modest about it in her latest Science rebuttal. "Who me? I never said XMRV *causes* CFS."

But I doubt it.


The difference is that "chronic Lyme" boosters claim that there's an ongoing infection that can be cured with antibiotics. That's a whole different issue from a matter of lingering aftereffects. (In fact, I have some reason to think I may have had Lyme disease at some point, but I'm not aware of any legitimate test that would prove it.)

"...colloidal silver"

If I see one more high school science project testing the effects of colloidal silver on bacteria, I'm going to go find some puppies to kick. If you judge at science fairs and you see one of those projects, I won't think poorly of you if you punch the kid in the gonads. That project is just as prevalent as "which brand of hand sanitizer works the best" projects in the junior divisions.

Thanks for your opinion. You even dug up stuff about the labs I wasn't aware of.

I'm just confused then why isn't anyone else calling this shit out? Is Ruscetti a quack too? The other coauthors may not have signed this letter but they did say they confirmed the original experiment separately at the Cleveland Clinic and National Cancer Institute. How would they have gotten those results?

Is there anything to the point that they and others such as Dr. Coffin mention about needing to "grow" or culture the white blood cells? I haven't seen anyone respond to this, not the other labs, not this blog, nor any comments.

Re: chronic Lyme. Most of the ones with that diagnosis (given by quacks) should really have a diagnosis of chronic fatigue syndrome, so I wouldn't be surprised if studies on CFS show overlap with it.

@6 Tick diseases do exist in California though relatively rare. It is more than 1/1,000,000. You can check official reported cases statistics on that, and even official sources point out that that's only reported cases and they can only estimate what fraction of cases end up getting reported. Tick-borne diseases is why I'm here. I was bitten by a tick (yes, I saw it and got a classic-looking Lyme rash) and I have been disabled, bedridden, and housebound since. But no I'm not recorded as having Lyme disease. The doctor in SF is a major quack but some portion of his patients really did become ill following tick bites.

By Smurfette (not verified) on 14 May 2010 #permalink


Chronic Lyme-- Say you have a daughter with strep throat. But you cant get her into the doc for a while, and she ends up getting Scarlet Fever. Thats like the bad things that can happen if you dont treat Lyme. Way later in life, your daughter might have to get a heart-valve replacement because of the after effects of the Scarlet Fever. Thats like the long-term effects of not treating Lyme.

People with Chronic Lyme Disease would be as if your daughter grew up and DEMANDS she is put on long-term antibiotics for a chronic strep infection, but there is no evidence she is or has ever been infected with strep.

XMRV and Chronic Lyme-- Judy is 100% clear of her hypothesis regarding XMRV and a non-existing illness: "The hypothesis that chronic XMRV infection creates an underlying immune deficiency is consistent with many co-pathogens including Lyme." You are smarter than she is.

Confusion over the Science paper-- The supplemental methods section clearly states: "Samples were selected from several regions of the United States where outbreaks of CFS had been documented (S2). These are patients that have been seen in private medical practices, and their diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits AND reproducible immunological abnormalities."

Now, they clearly state: "We did not state in Lisbon (7) or elsewhere that the samples analyzed in (1) were only from patients from documented outbreaks of CFS, nor did we state that the 101 patients described in (1) exhibited ALL the immunological abnormalities described in our Lisbon conference presentation.

Oh, they didnt say 'all', what a weasel word! Both of these statements cannot be true. So which statement am I supposed to believe?

Why no one has sent blinded samples to the WPI to test-- Because no one cares about WPI. Big Pharma made their own test for XMRV, and they appear to be happy with it. If no one else can reproduce their association, WPI will be forgotten. If someone can explain their data was contamination, the paper will be retracted. But WPI itself is irrelevant to science, we all are. We are all cogs in the machine.

Impish-- I wrote about Abbots test a while back. It doesnt 'find' XMRV, but antibodies to XMRV.

WPI, October 2009, 2:50: "How does this finding change the world of Chronic Fatigue? #1, It ends the debate. CFS is not and never was a psychological disorder. Those who are ill have always known this. The physicians who take care of them have always known this and finally those who have attempted to keep patients from receiving medical care for this disease know this."

WPI, May 2010: "We did not state that our study (1) proves the cause of CFS."

I only minored in psych, so Im not going to analyze Ruscetti. I think he is established enough that even if it was something stupid like contamination of Invitrogen reagents people would get over it. I dont think, at this point, he is a kook. I just think hes a nice guy and personally invested. Thats not to say that he might not end up being a total kook, though :-/

If its any conciliation, other retrovirologists are looking into/disturbed by some things that are going on, here. Youre just reading me bitching about it cause I have a blog, and you arent hanging out at retrovirology conferences :)

How they got their results-- Thats one of the problems with their protocols being so unclear, and one of the things brought up in one of the other Science letters. We dont know how/why they did some of their assays. None of that information has been provided, as of yet. There has been some suggestion that a particular reagent derived from mouse cells was contaminated-- labs in other countries use other reagents. So, everyone could be right, technically, just not in the way they want to be.

Culturing cells-- I did talk about this. In Judys 'clarified' protocol, there is no mention of culturing cells pre-PCR. The 'culturing' she mentions is for a different assay all together.

Okay, thanks for the clarification. I remember now I did see your comment earlier about the culturing cells not being mentioned in the write-up. I just don't get it if the discrepancy between what is said in one place and another place is as obvious as you say it is. My immediate reaction was, that can't be possible if nobody's pointing it out. It feels like the emperor has no clothes and you're the only kid to call it out, which makes it easy for patients to conclude that there must not be anything wrong with the WPI. Oh well, I'm waiting for more studies to be published. I know there is one from a Dr. Huber coming.

Re: chronic Lyme

The characterization of patients isn't quite as simple as that. There are indeed some who are like you say, never had evidence of Lyme. There are also patients who officially had real Lyme disease with diagnoses and testing from legitimate doctors, but they end up at the quacks' office after they find they are still disabled and the regular doctors don't believe them. And there are some in between cases where it's not 100% clear if they had Lyme, such as tick bite plus rash but negative test. Not all of them take long-term antibiotics. Unfortunately, one of the only places people with chronic fatigue syndrome can get any sort of treatment is at Lyme disease quacks' offices. The Lyme quacks actually follow some standard guidelines for treating chronic fatigue syndrome and fibromyalgia, such as prescribing Lyrica or NSAIDs, but they tack on their quack signature antibiotic in addition and brainwash them.

I don't think so many patients would end up at Lyme quacks offices if not so many regular doctors denied that Lyme disease exists in CA, or even that ticks exist in CA, as well as refuse to believe that post-Lyme syndrome or chronic fatigue syndrome exist. All of this can be looked up very easily but strangely enough, they don't. If patients could get some basic pain relief such as an NSAID from a regular doctor, there would be less reason for them to go to quacks where they get the NSAID plus an antibiotic. I'd say if patients could just get an acknowledgement from regular doctors that they have a chronic illness even if they can't do anything or prescribe anything for them, that would prevent many of them from ending up at quacks' and then being inculcated into the chronic Lyme business.

Just a rough calculation of how many of the SF Lyme quack's patients actually have post-Lyme syndrome. Last I checked, as of 2005, the reported cases of Lyme disease in CA were 3/1,000,000/yr. It's estimated that 10% of cases get reported, so estimate 3/100,000/yr. That makes an approximate lifetime chance of getting Lyme disease in CA about 1/500. About 15% of people who get Lyme disease go on to have post-Lyme syndrome, so about 3/10,000. The SF Lyme quack draws on a population of about 10,000,000 so about 150-300 people in the extended Bay Area have actual post-Lyme syndrome, most of whom end up at the quack's office. That is enough to populate a quarter to a half of his patients.

Now I've become one of those commenters I hate who go off on long-winded tangents.

By Smurfette (not verified) on 17 May 2010 #permalink

Whoops, I think I missed a zero on that last calculation. That's ~1500 in the extended SF Bay Area with post-Lyme syndrome, more than enough for the quack to prey on.

By Smurfette (not verified) on 17 May 2010 #permalink

It feels like the emperor has no clothes and you're the only kid to call it out, which makes it easy for patients to conclude that there must not be anything wrong with the WPI.

What, exactly, do you want other scientists to do? Go on TV and bitch about how stupid Judy is? Write aggressive letters to WPI?

Thats stupid shit WPI does. Thats not SOP for scientists.

Like I already said, if no one can back up the XMRV-->CFS connection, the paper and the WPI will just be ignored. If they contaminated something, their paper will be retracted.

Thats it.

There are no theatrics, unless we are talking about me, who bitches about this kind of bullshit on her blog.

Lemme give you an example-- Eric Hunter is a Mege Huge Ultra Awesome name in retrovirology. He has a recent paper talking about XMRV and prostate cancer. This is the extent of their reference to the WPI paper:
"In summary, our data reveal important cellular determinants required for XMRV infection of human prostate cells in vitro, which may provide important insights into the possible role of XMRV as an etiologic agent in human prostate cancer. If it can be proven that XMRV infection is indeed widespread and can cause prostate cancer and/or other human diseases (1, 21, 34, 41), it is important to identify effective antivirals against this virus."

The WPI paper is #21. That is the only time it is mentioned, and not by name, at the end of the paper.

That is how scientists operate.

Not via the insane theatrics of Judy/Annette/Princess Crazy Ass.

And you dont really have to tell me much about Chronic Lyme. I have a premier Borrelia researcher 20 feet away from me :)

re Lyme: I took Mikovit's comment to mean that she's found XMRV in those patients who think they are suffering from Chronic Lyme, rather than that she has looked into the science behind Chronic Lyme and decided that these patients are suffering from an ongoing infection. It's still quacky to say these things, but quacky in a different way. (Actually - was this quote "The hypothesis that chronic XMRV infection creates an underlying immune deficiency is consistent with many co-pathogens including Lyme" from a Q&A? Is Lyme even a pathogen? - I though it was a disease? If she was just speaking off the cuff in reply to a question about Lyme disease, I think it would be fair to give some leeway. Mikovits does seem to talk very casually about controversial topics she seems not to know a lot about, and that doesn't inspire faith in her claims, but I don't think it's the same as embracing all the claims the surround Chronic Lyme.)

re "You are smarter than she is."
Given the way she's spoken about here, that's not much of an ego boost.

re "their diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits AND reproducible immunological abnormalities."

The Miss America competition is decided according to a contestants' beauty, grace and intelligence. That doesn't mean you're required to be terribly intelligent though. The section you quoted does not require that all the patients had reproducible immunological abnormalities. I see how it could have been misleading, but it does not necessarily contradict their later claims.

re: "Samples were selected from several regions of the United States where outbreaks of CFS had been documented (S2). These are patients that have been seen in private medical practices":

This is stranger. It could well mean that they were partnered with those CFS specialist who have been drawn to areas where outbreaks of CFS have occurred. Peterson works at an outbreak town, but sees lots of CFS patients who were nothing to do with any outbreak. Some other doctors are the same, but it does seem strange that the WPI would limit themselves to partnering with those doctors.

Or it could mean "We got samples from all over the place, and there have been CFS outbreaks everywhere, often largely ignored."

I said ages ago in a comment here that the Science paper was full of snide attacks on the psychological models of CFS that most readers would miss. (Equally the psychological replies were full of attacks on the biological models that many did not seem to notice). I think that this is what may have motivated the inclusion of some of the comments which are now causing confusion. I'm not entirely sure what was meant by the 'outbreaks' comment though.

re Blinded samples to the WPI: Well, I think the WPI may now be important in that many patients now seem to have faith in them. Arranging for a blinded study would have let us know if they're on to something or not, and if they're unable to distinguish between blinded samples then either they'd acknowledge their results were wrong, or we'd know they were quacks.

While I feel fine looking at the use of language, I'm still struggling with the virology stuff. Here's a German paper that found XMRV in 3% of patients. They mentioned finding it in the respiratory tracts, and that it could even be airborne.


It seems that people are getting different results for XMRV, and that (to me) the geographical differences explanation is unlikely. I don't know if this means that XMRV has contaminated a lot of testing procedures, or is more difficult to detect than we'd expect. Is there any indication as to why this test would find XMRV, whereas other German tests did not?

The more I read about retro-viruses the more I realise that my early 'XMRV is like HIV' assumptions could have been way off.

The way the WPI's been behaving doesn't inspire confidence in their work, but it does seem that there's a lot of doubt surrounding XMRV, and that it would be a bad idea to be too dismissive of the WPI's results just because Mikovits likes to run her mouth.


(What a long post).

Cos my last post wasn't long enough:

That German paper has 3% of healthy population with XMRV, and 10% immunodeficient - would that imply that healthy people are quite capable of shaking off XMRV? (Assuming the figures hold up.) How likely is it that XMRV can be fought off by healthy individuals (in an abstract theoretical way, recognising that the data's still really weak). I'd been assuming that, once infected with one, a retrovirus sticks around. Is this necessarily the case? Very likely to be the case? Thanks.

"What, exactly, do you want other scientists to do? Go on TV and bitch about how stupid Judy is? Write aggressive letters to WPI?"

No, I was just commenting on what the situation is, yes, exactly because the WPI has been doing crazy media stunts targeting patients, and because that's not how scientists operate, laypeople are getting a disturbing one-sided perspective. I think there is something new about the imbalance of information now with quacks reaching people via Web 2.0 and not much countering them in that space. However, you're not the only one with a blog.. the Virology Blog has covered XMRV and CFS several times but has been quite positive and given no impression that there's anything questionable about the WPI.

I'm not sure what scientists should do, or maybe they don't think they have a responsibility to do anything different from what they are doing. You and other scientists are in a better position to answer that. I did come across a discussion of this topic by some organization in the UK, on whether and how the interface between science and laypeople needs to adapt to the evolving media.. can't find it at the moment.

"And you dont really have to tell me much about Chronic Lyme. I have a premier Borrelia researcher 20 feet away from me :)"

Well, I'm not comment on the lab side of things.. I was just responding to your earlier stereotype of "chronic Lyme" patients which I don't think is really representative, but the loudest and craziest people who get in the media, kind of like the crazy commenters you get on your blog. It was also in response to the earlier commenter's incorrect statistics.

By Smurfette (not verified) on 18 May 2010 #permalink

Chronic Lyme most certainly does exist. If someone contracts Lyme but is misdiagnosed, or never seeks treatment in the first place, acute Borrelia infection can become chronic. The symptoms are different, and the infection may be harder to detect. The Great Lyme Debate is about whether or not Doxycycline always kills off the bacteria, and if any residual, post-antibiotic symptomatology is real or imagined.
"LLD's" promote the very convenient theory that the spirochetes can evade detection and/or the Doxy by clandestinely concealing themselves.
Living in Maine, I know 7 people who've had Lyme. Each one of them presented with remarkably consistent symptoms. Bell's Palsy, arthritis, rash, flu. Each of the 7 felt sick enough to seek treatment, and each was subsequently put on a 2-week course of Doxy. Each fully recovered. Each remain well.
Antibiotic-resistant Lyme Disease is the last thing WPI wants to be associated with.

By thomas_bernhard (not verified) on 20 May 2010 #permalink


This mentions a new negative XMRV study by Dr. Huber:

"She apparently believes that she's found a source of contamination in a reagent; that would be tough news for the WPI since it would be an unsuspected source; ie it's not an area they apparently would have thought to search."

Commenting on it Dr Peterson said (in what looks like an illicitly recorded Q&A) that Dr Huber's test was able to identify XMRV in a patient's samples he provided. Surely WPI reagents would not have been used prior to sending it? Would another form of contamination be needed too? And how would this explain the anti-body tests? Could they have been picking up something else?


(I took Peterson leaving the WPI to indicate he was sceptical about their XMRV work - apparently not. Maybe he just had a problem with the way they were presenting it?)

antibodies cannot be reproduce in reagents. How do you explain the recent 2-3 year German study?

Xenotropic murine leukemia virusârelated gammaretrovirus (XMRV) has been recently associated with prostate cancer and chronic fatigue syndrome. To identify nucleic acid sequences, we examined respiratory secretions by using PCR. XMRV-specific sequences were detected in 2%â3% of samples from 168 immunocompetent carriers and â10% of samples from 161 immunocompromised patients.

Xenotropic Murine Leukemia Virusârelated Gammaretrovirus in Respiratory Tract

Nicole Fischer, Comments to Author Claudia Schulz, Kristin Stieler, Oliver Hohn, Christoph Lange, Christian Drosten, and Martin Aepfelbacher
Author affiliations: University Medical Center Hamburg-Eppendorf, Hamburg, Germany (N. Fischer, C. Schulz, K. Stieler, M. Aepfelbacher); Robert Koch-Institute, Berlin, Germany (O. Hohn); Leibniz-Center for Medicine and Biosciences, Borstel, Germany (C. Lange); and University of Bonn Medical Centre, Bonn, Germany (C. Drosten)

Im assuming English isnt your first language 'Sally', as your first 'sentence'-like creation makes no sense-- antibodies have nothing to do with the study you cite.

I 'explain' that study in one word: idiotic.

You have to tap your heels three times and throw salt over your shoulder to 'see' XMRV proviruses in PBMC. Virtually no one has anti-XMRV antibodies. No one can find free virus anywhere in 'XMRV infected' patients. But these folks looked for free virus in bronchoalveolar lavages. And 'found' it?

What the fuck?

I could see looking in saliva or something, maybe, but bronchoalveolar lavages?

Thats idiotic, and I dont believe any of their results. XMRV is in no way JSRV, and these people had no reason to believe it would behave like JSRV. And if it did, 40% of the population would be positive for 'XMRV acting like JSRV', not 3-4%, and CFSers would be dying of lung cancer, not complaining about a cadre of non-specific mehs.

So, again, I 'explain' that study as 'idiotic'.