I spent last weekend reading Sharyl Attkisson's wonderful new book, Stonewalled - My Fight for Truth Against the Forces of Obstruction, Intimidation, and Harrassment in Obama's Washington and I couldn't help but hear echoes of the plight of Dr. Judy Mikovits that we detailed in our book, PLAGUE.
To hear Attkisson tell it, there has been a gradual erosion, not just of our civil liberties, but of the media appetite to challenge powerful entities. These entities could be a rich corporate sponsor who pays for advertising on the station or a federal government which seems to grow not just more powerful, but also more unaccountable. It makes me think that those of us in the autism and ME/CFS communities are simply a part of a much larger story, and that our efforts should be centered around finding similar groups which have been marginalized because it served certain corporate or governmental interests.
I want to quote from a section near the end of Attkisson's book and a conversation she had with one of her long-time friends in journalism, David Kirby (author of Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy) about what has been happening over the past several years.
"I couldn't wait," says Kirby, speaking of Obama being elected president in 2008.
A "new era" was being ushered in. At last the GOP was out, and a new era of transparency was about to begin. He was the real deal, a Constitutional scholar who understood the fundamental importance of basic freedoms - the right to information and accountability, for example - to our democracy and its vaunted promise of "life, liberty and the pursuit of happiness."
Then I tried to get information out of this new gang.
The first six months of 2009 was a daily lesson in rejection, frustration, and anger. I could not get any information out of anyone - not the USDA, not the EPA, and certainly not the White House. FOIA requests, the few that were actually fulfilled, came back with up to 90% of the text "redacted," blacked out like an angry child had taken an extra-wide Sharpie to the pages.
Attkisson goes onto report Kirby's disillusionment with trying to investigate important stories, which eventually caused him to realize he needed to write his own book about the subject.
The most shocking thing I found in researching Dr. Mikovits' story was the violation of the most basic standards of science and open investigation by forces that were opposed to her work. It was just like Kirby getting a document from the government that had 90% of the text "redacted." How is that transparency? And in the way Dr. Mikovits was treated by many of the most powerful people in research I found myself asking, how is this science?
Among the most egregious events documented in the book were the conditions under which Mikovits would participate in what became known as the Lipkin multi-center study to determine if there was a connection between the XMRV retrovirus and chronic fatigue syndrome (ME/CFS).
Mikovits was supposed to perform her work at the National Cancer Institute (where she had previously been employed for more than 20 years and head of one of the labs), but according to an e-mail from Ian Lipkin dated December 1, 2011, the NIH supervisors (presumably Harold Varmus of the National Cancer Institute and Dr. Anthony Fauci of the National Institute for Infection and Allergy who were copied on the e-mail), did not want her stepping foot on the grounds of the National Cancer Institute, a prohibition they were willing to back up with security personnel. (And this was being decided by others while Mikovits was being held without bail in a Ventura county jail!)
Since when is security supposed to keep a scientist out of her own lab? Isn't that a little like the Catholic church telling Galileo they want a "replication study" for the movement of the planets, but denying him the use of his telescope, and sending a division of the Swiss guard to enforce the edict? What were they so scared of her finding if they did let her into the lab?
This was just one of many instances we document in the book which only serve to underscore the gross violations of the scientific method and simple justice which were perpetrated not just against Dr. Mikovits personally, but against the ME/CFS community, and by extension, we believe, the autism community.
And yet, after reading Attkisson's book I'm struck by the similarities to what she experienced in her investigations. It's as if the country in which I grew up in, the one in which the government was supposed to be accountable to the people, has suddenly become populated by a bureacratic class who seeks to deny people information. For these government employees, "truth" has become a relative term, not an absolute necessity for a healthy society.
Attkisson's book makes me realize that we in the autism and ME/CFS communities are not just an isolated tribe, but one more marginalized group among many. Our enemy knows how many of us are out there, but we in our isolated little bands are unaware of our true numbers. We need to find each other, support each other, and join together to bring down their empire of lies. It's the only way there will be any hope for our children.
Kent Heckenlively is a Founding Contributing Editor to Age of Autism and co-author with Dr. Judy Mikovits of Plague: One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome, Autism, and Other Diseases. Release date is November 18, 2014. Visit his website at Plague The Book. You can order the book HERE.