No sendoff today, instead some strange news to discuss. A few days back, Data_Jack was kind enough to alert me to a new post at ERV, which briefly mentioned that Judy Mikovits will be presenting about XMRV at the AUTISMONE conference.
A little background. Mikovits is the lead researcher on the XMRV study done by the Whittemore Peterson Institute (WPI). Austimone.org lionizes the now completely discredited Andrew Wakefield, as well as the eminently irrelevant Jenny McCarthy, in their efforts to continue frightening parents with bad science about a nonexistent link between vaccines and autism. Given that the CFS-XMRV link itself is still utterly tenuous, I was somewhat alarmed to see that Mikovits has moved on to autism.
And with good reason, as it turns out. I did a little searching about XMRV and autism, and found this article from another bastion of antivax lunacy, the Huffington Post. In it, Mikovits is quoted as follows (emphasis mine):
“On that note, if I might speculate a little bit,” she said, “This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes — the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That’s its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you’ve now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency.”
What. The. Fuck.
What is Mikovits up to, not only cozying up to one of the largest dangers to public health — the antivax movement — but spouting their party line that has no basis in scientific fact? What respectable scientist would perpetuate this myth, even with that gutless “I’m just speculating” caveat?
Here is the abstract for her presentation:
Chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD) share common clinical features including immune dysregulation, increased oxidative stress, increased expression of proinflammatory cytokines and chemokines, mitochondrial dysfunction and chronic active microbial infections suggesting an underlying immune deficiency may be involved in subgroups of CFS and ASD. We recently demonstrated the first direct isolation of an infectious gammaretrovirus, XMRV, from the blood of CFS patients. We have developed quantitative assays to detect XMRV replication and infection in cell culture. Moreover, we found evidence of XMRV infection in >85% of more than 200 CFS patients tested to date. These data implicate a role for XMRV infection in the pathogenesis of CFS. Because of the clinical similarities of CFS and ASD, we hypothesized that XMRV infection may also be detected in subgroups of ASD. This presentation will update the status of XMRV research, show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD.
Funny that the abstract promises to mention “evidence of XMRV infection in ASD” while leaving out any mention of the fact that XMRV is found in a percentage of healthy controls as well. (Aside from the WPI’s study, here’s a Japanese one that discovered the same thing.) Given this, I might expect that there’s evidence of XMRV infection in people with anemia, bipolar disorder, acne, a slight cough, myopia, etc. But because CFS patients and ASD patients share some symptoms, Mikovits is presenting at an antivax autism conference on the hypothesis — I see no study listed here that will be presented — that XMRV is involved.
CFS also shares symptoms with fibromyalgia, lupus, MS, and many other illnesses. Can we expect to see Mikovits presenting at conferences for all these diseases, sharing her speculation that XMRV is involved with all of them as well? Or has she simply identified another vulnerable, gullible population on which to push her extraordinarily premature agenda?
I wrote to the WPI this week about my concerns. As of this post, I have not received a reply. At the moment, therefore, I’m not seeing anything here to be positive about. If Mikovits is so eager to connect her research to a dangerous and fallacious area of “investigation,” my already iffy feelings about the WPI and the future of XMRV and CFS have plunged even further towards total pessimism.
“Funny that the abstract promises to mention “evidence of XMRV infection in ASD” while leaving out any mention of the fact that XMRV is found in a percentage of healthy controls as well.”
Sounds familiar. Doctors used to run ANAs to screen for autoimmune disease until they discovered that it is positive in many healthy people and in many with non-autoimmune conditions.
This is essentially my problem with some of the community, that this possibility is ignored and all hopes are being pinned on a direct causal relationship. It’s just far too early to say either way.
My doctor, who I think the world of as she is the only one who got to the bottom of my so-called fibromyalgia, still runs ANA tests to look for auto-immune diseases. If that test comes back positive, as mine sometimes do, she then runs more intensive tests. Every 6 months I go for my “it might be lupus” test.
I can see the good side of running ANAs in patients strongly suspected of having an auto-immune disease. However, it is dangerous to use a positive ANA as proof of having an auto-immune disease.
I suggest you watch a video by RFK junior where he speaks of the Verstratten study into autism and Timerisol (mecurial compound in vacines).
Part 1 – http://www.youtube.com/watch?v=UQG5Q4GWw2o
Part – 2 http://www.youtube.com/watch?v=DjPox5xBOLI
The study was conviently lost after a meeting at the CDC in the US. Kennedy apparantly recieved a transcipt of the CDC meeting of which the first part of the discussions concentrated on the indisputable link shown in the data of vacines to autism. The second part of the CDC meeting was devoted finding a way to cover up the data. The verstratten study data was conviently lost and new studies were commissioned which Kennedy describes as low grade fraud. RFK jnr is a lawyer who prosecutes these sorts of cases where corporate interests protect themselves from harm they have caused to populations. He describes subsequent studies the worlds media reffered to as proof austism was unrelated to vacines as Tobbacoo science and the proponents of those studies as biostiutes. Who do you work for I wonder? The vacine lobby. Good Pay is it. I’m sorry but the corporations spend hundreds of millions of dollars lobbying the US government and on so called impartial experts who are payed to spread propaganda that fits their requirements. One problem is no one knows these people are on corporate payrolls. During Bushes term retired Generals gave what were said to be impartial opinions about the war in the US media. Turns out later that they were all on the Pentagon Payroll. There are people spreading propaganda all over the internet, many of them corporate employees.
Dear Jenny (McCarthy? I’m honored!),
I am self-employed.
Love,
Joey
Judy Mikovits’ “Bad Science” as you call it has spurred a global tidal wave of interest in XMRV and its connection with prostate cancer and ME/CFS, the RNase-L antiviral pathway – and yes autism. Consider the tidal wave of research and interest into XMRV- in prostate cancer, RNase-L (the antiviral enzyme pathway shared in some prostate cancer and CFS cases) and CFS, such as from the Conference on Retroviral Infections. Check out the Cleveland Clinic’s very public (Youtube) Sones Innovation Award to Drs Silverman and Klein for their discovery of not only XMRV in prostate cancer, but also in ME/CFS. Stay tuned for the ARUP studies into ME/CFS/XMRV with Dr Singh, Dr Light, Dr Bateman… who did a first sampling of their patients – and on their compelling findings got refinanced for the Big Kahuna study. Consider that Dr Singh/Mikovits are collaborating with Dr Bannert in Germany who apparently is RE-TESTING his prostate cancer patients…. Nice that some scientists have an open mind. Imagine that – re-testing your 500 patients because you want the truth. I’d submit that the tide is turning globally in acceptance of the XMRV/prostate/ AND ME/CFS findings. Remember that Mikovits didn’t do this alone. Her initial results were validated in the National Cancer Institute labs and those of the Cleveland Clinic. If I were a betting person, I’d say her track record ain’t bad. Science is an iterative process though, and time will tell… so do keep reading on this topic.
You may also want to check your facts before jumping into statements like this:
” Funny that the abstract promises to mention “evidence of XMRV infection in ASD” while leaving out any mention of the fact that XMRV is found in a percentage of healthy controls as well.” For those interested in facts, the Japanese found XMRV in 1.7% of controls, while the Yanks found it in 3.7% controls. And those are the unsymptomatic XMRV patients – much like not all HIV patients get AIDS. Considering that the preliminary figures reported on XMRV in Autism by Mikovits are around 40%, not 4%, that raises some questions about who has got a case of Bad Science.
As for your taste in source material… c’mon.
Believe me when I say that if reliable replication studies ever do confirm a connection between ME/CFS and XMRV that could lead to some kind of treatment or cure, I will be among the first to embrace any and all research that lead to it. Whatever the eventual value of Mikovits’ XMRV study may be (and I have never once claimed any problem with the research itself as I certainly don’t have that knowledge) is separate from what I’m pointing out.
My problem here, as you don’t even begin to address in your comment, is that she is using a dangerous myth, that of the connection between vaccines and autism that people like our excellent example here, Jenny, believe, but no reputable scientist.
And as for my “source material,” read back again and you will find that it was Mikovits’ very own words as well as the text of her abstract (which I assume she wrote or at least approved). I get that you needed a dig at whoever alerted me to the situation, but Mikovits spoke for herself. Thank you for the reminder to link back to the abstract so that it’s all perfectly clear.
Hey Joey, And thanks for your speedy response. First off it’s great to hear you say that good science can convince you to change your mind. That’s more than a lot of hot-shot scientists can say. You know, I used to be a MAJOR skeptic when it came to the whole vaccine/autism thing. Then I got ME/CFS 11 yrs ago, and out of sheer necessity had to learn everything I could about it – because I was routinely laughed out of doc’s offices. I thought it important to show how in one fell swoop, Mikovits has brought more genuine scientific interest into the biological causes of ME/CFS than anyone else. Yes, she has her weak points. But man, has she caused a sea of change in the research area. Credible scientists & institutions following her footsteps. Cornell. Stanford. ARUP.
You’re right that I didn’t address your comment! OK, here goes… Part of what has swayed me to the possibility that vaccines might have a role in autism are indeed the many parallels with ME/CFS and autism. Oh yeah, and lymphoma. Gut problems. Sensitivities to light. Immune abnormalities. Mitochondrial disorders. Weird biorhythms (i.e. me still being up this late). All that stuff Mikovits describes in the quote you provide. But what really got me thinking was the buzz on the forums. SO many families with a shared history of lymphoma; ME/CFS; fibromyalgia; and yes – autism. Crossover symptoms. Food sensitivities. Irritable bowel. Patients with ASD and ME/CFS who get better with gluten/casein free diet. Also the accounts of Gulf War Illness vets who got masses of vaccines in a short period of time (and yes, other exposures too) – then returned home. And develop ME/CFS – then have a dysproportionate number of children with autism.
The thinking is that if XMRV causes ME/CFS, that alone isn’t enough. You need a trigger – such as massive stress (XMRV loves hormones; cortisol, the stress hormone is one; testosterone another); consider the hormonal linkages with ME/CFS (mostly women), autism (mostly boys), prostate cancer (well, that one’s obvious). But hormones are definitely a factor here somewhere. Some other triggers: think fibromyalgia and car accidents; another infection (eg. Epstein-Barr)… or something that stimulates your immune system in a wacky way. Enter the adjuvants in vaccines. That’s their job.
Vaccines are hugely expensive, and one way the pharmas get around this is to provide fewer of the stimulating virus particles – along with a “kick”: the “adjuvant” to get your immune system revved up. Of course there are the issues of thimerasol – I honestly can’t speak to them. But can toxins stimulate the immune system too? Plausible. So given my own experience; my reading of both published science and patient accounts; and the fact that SO far the XMRV research “fits”… I want to keep my mind open. Now as a (former) health care professional, I am also very mindful of the devastation of immunizable, preventable diseases. It’s a scary either/or scenario right now, and science MUST find a way to reconcile these SOON. From my perspective though, having lost family, friends, livelihood, lifestyle to ME/CFS, and now having developed heart failure in my 40′s, it’s dangerous myths (i.e. that ME/CFS’ers are just a bunch of psychotic malingerers – not folks suffering from the next AIDS) that vitally affect me.
So yes, I AM interested: what exactly IS the collateral risk from vaccines? With all the angry rhetoric, it’s hard to listen to the science. And I would add that it would be naive to think that a multi-billion dollar pharma industry is disinterested in the outcome. But I certainly don’t say it lightly that I personally am VERY concerned now about adjuvants. Is there a reason that the H1N1 vaccines for pregnant women were given without an adjuvant? Think about it.
Consider that “no reputable scientist” many years ago would have believed that ulcers were caused by H. Pylori bacteria. In fact there was just the kind of abusive outrage that is now being directed at the autism/vaccine link. Vitriol and intimidation get us nowhere scientifically, and that’s why I challenged your source (ERV, not Mikovits). All I’m saying is that the dots are connecting in a way that I wouldn’t originally have expected. It’s VERY interesting stuff. And there is a resonant consistency in the emerging scientific findings with not only my experience, but also the findings in Autism. Really fascinating parallels. I see many reasons why this could “work”. So keep an open – but critical mind, and enjoy the coming ride.
“Patients with ASD and ME/CFS who get better with gluten/casein free diet.”
Hate to disillusion you here but patients with ASD don’t “get better” on a GFCF diet. Their autism doesn’t suddenly improve. Yes, kids with ASD may also be gluten and casein intolerant and thus experience a great deal of pain because of that condition. Any kid in constant pain is going to act out and misbehave. Take that pain away and that kid’s behaviour is going to improve. However, it has nothing to do with their ASD. They are still as autistic as they were before the dietary change.
As I said, keep an open mind, as the science in this area continues to evolve. I’d also encourage you to perhaps delve into some of the fascinating research in the pipeline, particularly on urine peptides, and their link with exacerbating Autistic Spectrum Disorder (ASD) symptoms.
Here are just a few examples on the PubMed site from: http://www.ncbi.nlm.nih.gov/pubmed/19917211
1) Ann Clin Psychiatry. 2009 Oct-Dec;21(4):205-11.
The possibility and probability of a gut-to-brain connection in autism. Reichelt KL, Knivsberg AM.
BACKGROUND: We have shown that urine peptide increase is found in autism, and that some of these peptides have a dietary origin. To be explanatory for the disease process, a dietary effect on the brain must be shown to be possible and probable. METHODS: Diagnosis was based on DSM-III and DSM-IV criteria. We ran first morning urine samples equivalent to 250 nm creatinine on high-performance liquid chromatography (HPLC) reversed phase C18 columns using trifluoroacetic acid acetonitrile gradients. The elution patterns were registered using 215 nm absorption for largely peptide bonds, 280 nm for aromatic groups, and 325 nm for indolyl components. We referred to a series of published ability tests, including Raven’s Progressive Matrices and the Illinois Test of Psycholinguistic Ability, which were administered before and after dietary intervention. The literature was also reviewed to find evidence of a gut-to-brain connection. RESULTS: In autistic syndromes, we can show marked increases in UV 215-absorbing material eluting after hippuric acid that are mostly peptides. We also show highly significant decreases after introducing a gluten- and casein-free diet with a duration of more than 1 year. We refer to previously published studies showing improvement in children on this diet who were followed for 4 years and a pairwise matched, randomly assigned study with highly significant changes. The literature shows abundant data pointing to the importance of a gut-to-brain connection. CONCLUSIONS: An effect of diet on excreted compounds and behavior has been found. A gut-to-brain axis is both possible and probable.
2) The effects of a gluten and casein-free diet in children with autism: a case report. Hsu CL, Lin CY, Chen CL, Wang CM, Wong MK. Chang Gung Med J. 2009 Jul-Aug;32(4):459-65.
3) Beta-casomorphins-7 in infants on different type of feeding and different levels of psychomotor development. Kost NV, Sokolov OY, Kurasova OB, Dmitriev AD, Tarakanova JN, Gabaeva MV, Zolotarev YA, Dadayan AK, Grachev SA, Korneeva EV, Mikheeva IG, Zozulya AA.
4) Peptides. 2009 Oct;30(10):1854-60. Epub 2009 Jul 1.
The data indicate that breast feeding has an advantage over artificial feeding for infants’ development during the first year of life and support the hypothesis for deterioration of bovine casomorphin elimination as a risk factor for delay in psychomotor development and other diseases such as autism.
5) Role of polyunsaturated fatty acids in the management of Egyptian children with autism. Meguid NA, Atta HM, Gouda AS, Khalil RO. Clin Biochem. 2008 Sep;41(13):1044-8. Epub 2008 Jun 12. After taking Efalex, 66% of autistic children showed clinical and biochemical improvement, linolenic acid and docosahexaenoic acid showed the highest levels after Efalex supplementation.
Finally, for a great example of how diet affects the brain, consider the abundant research on a “ketogenic diet”, used to reduce seizure activity in patients with intractable seizures. In other words, it is not all that wacky that diet might affect neurobehavioral functioning in individuals with ASD. Finally, remember that Phase 1-3 clinical trials are unlikely for something that isn’t patented (i.e. GFCF Diet for Autism). Doesn’t mean it might not have some clinical relevance, but who is going to shell out $200 million for the full-blown clinical studies?
Time will tell about the ASD/diet story – particularly if XMRV is linked with Autism. Scientists have already captured differential replication rates of XMRV in response to hormone levels. Perhaps they’ll be doing that with XMRV replication rates in response to the Gluten Free/Casein Free diet… Interesting stuff.
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Well. It’s about a year later. XMRV has lost a great deal of steam due to solid studies that either couldn’t find it or strongly support contamination is involved. Additionally, Wakefield has been even further discredited due to the revelation of how much financial fraud was involved with his “study.” Studies by people who have not had their license to practice medicine revoked have also conclusively proven no association between autism and vaccines. I find reaching for a connection between autism and XMRV based on Wakefield’s lies to be even more egregious now than last year, as no scientist I would ever consider reputable would promote a theory associated with his disgusting lies.
In short, a year later, I completely stand by this post.