Chronic fatigue and XMRV — what one researcher (who’s been there) has to say
Weiss’ main point is that the history of retrovirology is littered with the debris of papers finding a link between a virus and a disease that later turned out to be false results caused by contamination. “There has been a long succession of ‘rumor’ viruses posing as tumor viruses and promulgated as the cause of chronic human diseases,” Weiss wrote.
Researchers at the Whittemore Peterson Institute for Neuro-Immune Disease, which led the team that published the original paper, have repeatedly denied they could have a contamination problem.
Weiss knows something about the issue. In 1997, his own team reported finding a retrovirus genome in patients with rheumatoid arthritis. Two teams — one in Sweden, one in the U.S. — “confirmed” his results. It seemed to be a breakthrough in rheumatoid arthritis.
But four years after Weiss reported his findings, he discovered he was actually detecting contamination from a newly discovered rabbit retrovirus.
“I raise an eyebrow when investigators declare that contamination is ‘out of the question’; once bitten, twice shy,” Weiss said.
Here is the article by Weiss:
Its freely available and very readable.
And then we have this analysis from Science on the recent XMRV workshop:
Tufts immunologist Brigitte Huber reported that her lab initially found almost no XMRV in CFS patient samples, but when they tested more samples from patients and healthy people prepared a different way, many were positive. These samples turned out to contain endogenous mouse retrovirus DNA, probably from a contaminated reagent, said Huber: “It’s a false positive in our hands.”
… Some meeting participants said the only way to establish that XMRV actually causes CFS and isn’t simply a “passenger” virus that doesn’t contribute to the illness is to treat CFS patients with antiretroviral drugs. Coffin cautioned that it would be “premature” to do so without an assay to monitor the amount of XMRV in a patient’s blood, as is now done with AIDS patients on antiviral therapy. But if such a test is developed, “I would not be averse to doing very small studies under tightly controlled clinical conditions,” he said.
… Hoping to figure out what’s going on, a federal working group involving labs at FDA, CDC, WPI, and elsewhere has compared results for blood samples to which various amounts of XMRV had been added. (All six labs detected it.) The group has also tested four WPI samples from CFS patients but isn’t ready to discuss the results because “we’re still confused by them,” says Coffin, who is part of the working group.
More answers could come from the study Collins announced. National Institute of Allergy and Infectious Diseases Director Anthony Fauci has asked Columbia University epidemiologist W. Ian Lipkin to collect blood samples from 100 CFS patients from four parts of the United States and 100 healthy people and send blinded samples to the FDA, CDC, and WPI labs for testing. “We’re interested in settling a discrepant observation,” Fauci says.
Its interesting to see Science have a change of heart. Its interesting other scientists are now speaking up about their doubts and concerns. But they all moved too slowly.
They did not speak out loudly enough, conservatively enough, to stop Judy and the WPIs PR machine. Wishy washy comments to the media. Far-too-supportive comments that over-reached the available data. Irresponsible speculation.
The damage has been done.
The Whittemore-Peterson Institute – A Light in the Darkness
There’s a moment in the film Schindler’s List in which the accountant, Itzhak Stern shows Oskar Schindler the list of Jews they’re saving. The document seems to glow with an almost spiritual light as he says, “This list is an absolute good. The list is life. All around its margins lies the gulf.”
Such moments of unsullied heroism are rare, but I traveled two hundred and fifty miles to Reno, Nevada this last weekend to observe one. I’m talking of course about the opening of the Whittemore-Peterson Institute for Neuro-Immune Diseases which is part of the new Center for Molecular Medicine at the University of Nevada, School of Medicine
My Wife, My Daughter, and XMRV
In the midst of her work with chronic fatigue patients Dr. Mikovits became aware that several of the children of these patients had autism. Understanding that the virus could be passed down from mother to child Dr. Mikovits tested a small number of these children and found that 40% of these children tested positive. In a statement from the Nevada Commission on Autism Spectrum Disorders, more testing is underway which “could dramatically increase that 40% positive finding.”
… Like the chronic fatigue syndrome/ME community, the autism community has long waited for answers. I know that our community wants to find the quickest path to safe and effective treatments for our children.
Wouldn’t it be ironic if the warrior mothers of autism found that in helping their children they were also helping themselves?
I wont link to that site, but the comments are exactly what you would expect from Age of Autism readers following Judy Mikovits comments. Let me be clear, I cannot comment on a connection/correlation between XMRV and autism. There has been nothing published. Nothing for me to review. What I can do is address a few things.
Judy Mikovits– “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.”
That is profoundly stupid. If an attenuated/killed/protein vaccine is enough to terrorize these childrens immune system, then why wouldnt a real infection do the same damn thing?
That comment isnt ‘speculation’. That comment is stupidity which defies basic logic.
Furthermore, Judy Mikovits and the WPI and VIPDX are in a collaboration with BioRay. BioRay is a woo-company that sells crap. They sell colloidal silver. They also sell CytoFlora, which they say treats autism.
What a crazy random happenstance that Judy can ‘find XMRV’ in autistic kids.
What a crazy random happenstance Judy chose to support antivaccination efforts at AutismOne.
What a crazy random happenstance Age of Autism is comparing WPI to Oskar Schindler, and seamlessly meshing their anti-vaccination stance with WPIs ‘new findings’.
By not speaking honestly about XMRV, we have created a monster.
It does not matter, at this point, whether finding MLV is a random hiccup of science. A contamination that sent us on a wild-goose-chase for a few years. It does not matter anymore. Subsets of the CFS and autism communities will always believe that their disease was caused by a retrovirus now. It does not matter what scientists say or find anymore. It does not matter what reality is anymore.
Dont believe me?
Groups like Age of Autism wont drop the vaccines–>autism hypothesis, and that turned out to be blatant, blazon fraud. If they wouldnt reassess their worldview when that came out, why would anyone expect them to drop the XMRV story if it turns out to be a simple mistake? And considering Judy/WPIs alignment with woo companies and homeless drugs looking for illnesses to treat, Im being generous by saying they may have potentially just made a ‘simple mistake’. More generous than Miss Judy is, when dealing with her ‘colleagues’.
Im glad other scientists have got their heads back and are treating XMRV/human-MLV-like/magic-eye-MLV with a more skeptical eye now. But I think its too little, too late. Though some fractions of the CFS/autism community dont act like it at times, they are grown adults. They dont need to be talked down to. They dont need their hopes needlessly raised by people they are supposed to be able to trust. Theyve had to deal with a lot of bullshit and disappointment in their lives.
From the many supportive comments and emails I get, they want reality and practicality and an honest assessment of the data, like everyone else. If you give people anything less than this, dont act surprised when an autism/anti-vax/pro-crap-supplement monster emerges.