Push and Pull Over Chronic Fatigue Syndrome
Study that linked chronic fatigue syndrome to a retrovirus draws doubts.
July 27, 2010
Both Hillerby and Mikovits say the team's paper was closely examined by peer reviewers looking for evidence of contamination — and that the researchers also found evidence of an immune response to XMRV, something they said would not occur in a contamination situation.
Other research teams may not be finding XMRV in chronic fatigue syndrome patients because they are not doing the experiments in the same way as the institute, Mikovits said.
In January, the Reno Gazette-Journal quoted her as saying one British team had "skewed" its study design to avoid finding XMRV in patient samples. "Some are not trying in completely good faith," she said in an interview with the Tribune.
Dr. Jos W.M. van der Meer of Radboud University Nijmegen Medical Centre in the Netherlands, a co-author of one of the studies that failed to replicate the findings, told the Tribune: "I don't like these kinds of fights. I would prefer to have scientific debates on the scientific level."
Driven by what she says is the urgent need for action on XMRV, Mikovits has publicly tied the retrovirus to disorders including atypical multiple sclerosis — though she has not published data supporting these claims.
Last month, she spoke at the Autism One conference in Chicago about her new research on XMRV and autism, joining a lineup of speakers that included disgraced autism researcher Andrew Wakefield, who recently lost the right to practice medicine in Britain for serious professional misconduct.
Mikovits wrote in an e-mail that she realizes presenting at the conference "could destroy what is left of my career" but felt she had to accept in order to help sound the alarm.
She accused researchers and government agencies of being more interested in previously published research linking XMRV and a form of prostate cancer than in her work. Chronic fatigue syndrome affects women at four times the rate of men, according to the Centers for Disease Control and Prevention.
"So research dollars will go for XMRV-infected men with cancer but not women with CFS," she wrote in an e-mail. "[This] left me no recourse but to play the autism card! Will they ignore the children too?"
Virologist Vincent Racaniello of Columbia University said raising an alarm about XMRV would be premature given how little is known about the retrovirus.
"Her claim has to be validated," Racaniello said. "Otherwise, not only is money wasted, but people can be harmed, physically and psychologically."
Dr. Jamie Deckoff-Jones, a physician in Santa Fe, N.M., and her daughter both suffer from chronic fatigue syndrome and have been taking AZT, raltegravir and tenofovir. Deckoff-Jones said she is aware of the risks but feels ready to accept them.
"I am still a scientist at heart," she wrote in an e-mail. "But life sometimes forces leaps of faith."
Deckoff-Jones, whose blog about her treatment includes dosages, said other people interested in trying anti-retrovirals have contacted her. "Some of us simply don't have the time to wait," she said. <cont>