Judy Mikovits, the chronic fatigue syndrome (CFS) researcher who had a paper linking the condition to XMRV retracted, has co-authored a book that’s coming out on May 6.
In an announcement on Age of Autism, co-author Kent Heckenlively gives a taste of what readers might find in the book, titled PLAGUE – One Scientist’s Intrepid Search for the Truth about Retroviruses, Chronic Fatigue Syndrome, Autism, and Other Diseases:
In many ways I felt her story, especially the campaign of persecution against her, mirrored that of many other honest scientists who have looked for answers to the questions raised by these diseases.
“These diseases” are CFS and autism, and it’s not hard to see the parallels Heckenlively is drawing between Mikovits and Andrew Wakefield. Some in the autism patient community see the retraction of Wakefield’s fatally flawed 1998 study claiming to demonstrate a link between autism and vaccines as evidence of persecution at the hands of a powerful drug maker lobby. (For more on the repercussions of Wakefield’s study and the anti-vaccine movement, see Seth Mnookin’s award-winning The Panic Virus.)
Sadly, the narrative around CFS and autism has left many of those affected feeling abandoned and ignored: CFS sufferers because they were initially told they didn’t have a “real” condition, parents of children with autism because they were unable to receive the treatment their children needed or the support they yearned for. In both cases, some vocal members of those patient communities have latched onto theories — CFS and XMRV, autism and vaccines — that hold no scientific water. They take the scientific rejection of those theories as either another abandonment or as proof of some larger conspiracy, even as researchers try to figure out what’s actually going on.
Here’s a teaser for the book:
On July 22, 2009, a special meeting was held with twenty-four leading scientists at the National Institutes of Health to discuss early findings that a newly discovered retrovirus was linked to chronic fatigue syndrome (CFS), prostate cancer, lymphoma, and eventually neurodevelopmental disorders in children.
When Dr. Judy Mikovits finished her presentation the room was silent for a moment, then one of the scientists said, “Oh my God!” The resulting investigation would be like no other in science.
For Dr. Mikovits, a twenty-year veteran of the National Cancer Institute, this was the midpoint of a five-year journey that would start with the founding of the Whittemore-Peterson Institute for Neuro-Immune Disease at the University of Nevada, Reno, and end with her as a witness for the federal government against her former employer, Harvey Whittemore, for illegal campaign contributions to U.S. Senate Majority Leader Harry Reid.
On this journey Dr. Mikovits would face the scientific prejudices against CFS, wander into the minefield that is autism, and through it all struggle to maintain her faith in God, the American justice system and the profession to which she had dedicated her life. This is a story for anybody interested in the promise and peril of science at the very highest levels in our country.
The story is certainly full of drama, and twists and turns. Mikovits ended up in jail at one point on charges that were later dropped. But while the teaser mentions “early findings,” what it omits is that papers linking XMRV with CFS and prostate cancer have been retracted.
The Science retraction notice is worth reviewing:
Science is fully retracting the report “detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome” (1). Multiple laboratories, including those of the original authors (2), have failed to reliably detect xenotropic murine leukemia virus–related virus (XMRV) or other murine leukemia virus (MLV )–related viruses in chronic fatigue syndrome (CFS) patients. In addition, there is evidence of poor quality control in a number of specific experiments in the Report. Figure 1, table S1, and fig. S2 have been retracted by the authors (3). In response to concerns expressed about Fig. 2C [summarized in (4)], the authors acknowledged to Science that they omitted important information from the legend of this figure panel. Specifically, they failed to indicate that the CFS patient–derived peripheral blood mononuclear cells (PBMCs) shown in Fig. 2C had been treated with azacytidine as well as phytohemagglutinin and interleukin-2. This was in contrast to the CFS samples shown in Figs. 2A and 2B, which had not been treated with azacytidine.
Given all of these issues, Science has lost confidence in the Report and the validity of its conclusions. We note that the majority of the authors have agreed in principle to retract the Report but they have been unable to agree on the wording of their statement. It is Science‘s opinion that a retraction signed by all the authors is unlikely to be forthcoming. We are therefore editorially retracting the Report. We regret the time and resources that the scientific community has devoted to unsuccessful attempts to replicate these results.
In fact, a 2012 study — co-authored by Mikovits — “puts the speculation to rest” about any link between the virus and CFS, according to lead author Ian Lipkin.
MAR Consulting Inc., led by Drs. Frank Ruscetti and Judy Mikovits, seeks to understand complex and innovative biological issues to yield unbiased integrated, cutting-edge information for patients and physicians impacted by some of the most challenging chronic diseases. Utilizing their combined 75 years experience in tumor biology, immunobiology of retroviral-associated inflammatory diseases, cancer, stem cell biology, hematopoiesis, and drug development, MAR focuses on research projects, consulting (to patients doctors, academia, and industry) and lecturing without the restrictive authority of vested interest groups, following Thomas Jefferson’s dictum: “Here we are not afraid to follow the truth wherever it may lead, nor to tolerate error so long as freedom is left free to combat it.”