by Kent Heckenlively JD
Can fifty people in a bookstore on a Saturday night change a person’s opinion on the fate of our country?
I’ve been an autism advocate for fifteen years now, written more than 250 articles on various facets of the disease across many different web-sites about:
(1) the refusal of our research community to do any meaningful science which would change people’s lives, and
(2) the near-universal silence from the public on asking the vital question of why so many people are sick in the most highly-advanced society the world has ever known.
I even wrote a book with a twenty year government scientist, Dr. Judy Mikovits, who has published more than fifty peer-reviewed articles in the world’s top scientific journals and was head of the Anti-Viral Drug Mechanisms lab at the National Cancer Institute.
That book, PLAGUE: One Scientist’s Intrepid Search for the Truth About Human Retroviruses, Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases, was published in November of 2014, nearly two years ago.
The response from the public has been wonderful.
We now have 126 customer reviews on Amazon, making it third in the Virology section, just behind The Hot Zone and The Panic Virus. We’re hot on the heels of The Panic Virus, which has only 144 customer reviews. I’m holding out hope that we beat them by Christmas, or when the paperback version of PLAGUE comes out in February.
One would think that a book written with an accomplished scientist and having more than 700 footnotes, as well as great interest from the public, would at least get a few reviews in the mainstream press. But it has not. PLAGUE has not received a single review, even though among those 126 readers who posted their reviews on Amazon it has a 4.6 rating out of 5 stars. It has the same customer ranking as The Hot Zone (4.6) and is well above The Panic Virus (4.2).
My co-author and I have appeared on national and local radio shows and we have gone as far as the University of Minnesota to talk about our book, but nothing seems to break through. I think the low point for me was when I appeared at a bookstore as part of a “Local Authors” event. I think there were more of us on the panel than there were in the audience.
When a local chronic fatigue syndrome (ME/CFS) advocate came forward and said she wanted to sponsor a talk with Dr. Mikovits and me at our local bookstore I said, “Sure.” I mean, what’s the worst that can happen? Maybe the two of us stand at a podium and there are five people in the audience.
But instead of five people, there were well over fifty people and every one of the chairs were filled. Judy and I had talked about how to make our public talks more interesting to a lay audience, so I opened up with the advice I got from a professor in law school about ethics. My professor had said that if you wanted to avoid trouble in life, “Don’t lie, don’t cheat, don’t steal, and if anything sounds fishy, tell everybody.” I followed up with how when I had grown up the common refrain from my father’s friends was that “Jack Heckenlively is the most honest man I’ve ever met,” and how this made me proud to be his son.
Later in life, however, I learned that if you are honest you can potentially become a “disruptor” and in the words of economist Alan Greenspan, become an agent of “creative destruction.” Now we all know about creative destruction from the tech industry, but when science has built itself up to claim things are true because of “consensus”, you’ve just made that evolutionary process of creative destruction more difficult.
To quote President Kennedy, “Those who make peaceful revolution impossible, will make violent revolution inevitable.” I talked about the “fierce integrity” of Dr. Mikovits and her “fierce compassion” to help those afflicted with terrible diseases like chronic fatigue syndrome (ME/CFS), autism, and cancer. I talked about her work, the wholesale abandonment of many in the field to actually try to replicate her work, and their insistence on doing experiments which would lull the public into thinking there was “Nothing to see here. Nothing to see. Move along.”
Judy was amazing and brilliant, talking about how she hoped her discovery would mean that no patient with chronic fatigue syndrome (ME/CFS) would have to wait more than six months to get a diagnosis, and we would take the lessons learned in the fight against the HIV retrovirus and apply them to this new retrovirus. I thought she also did a great job of linking the issue of corruption of this area of science with what seems to be a greater unveiling of corruption in both of our major political parties.
There was a difference that night..
These were all the things we’d said many times before, but the audience was different that night. I’ve often said that the worst thing about the perversion of science in the investigation as to the cause of so many chronic diseases has been an injustice not just to science, but to the greater whole of society.
I don’t care if you don’t agree with my thoughts, but then damn it, come up with your own. Don’t leave these people to suffer. I don’t care if it’s the chronic fatigue syndrome (ME/CFS) patient confined to their bed for twenty four hours a day, barely able to walk a few steps to the bathroom, the child with autism, or the person suffering from a previously rare type of cancer. Indifference is not an option. Lead, follow, or get out of the way. That audience asked questions and they were engaged.
Among the fifty people in that audience I saw the America I believe in. The America which cares about people who are suffering. Because it is a fundamental human trait to try to relieve suffering, even if you are also faced with your own challenges. That is what is noble in human nature. If you suffer with chronic fatigue syndrome (ME/CFS) and you hate how the medical community has belittled you over the years, you should understand how the autism community feels when they have been similarly vilified. And the autism parents should understand that the chronic fatigue syndrome (ME/CFS) community has much to share with us as to the corruption of science. We need to have compassion for each other. If you suffer, I will make it my business to get answers for you. And I hope you will put in your effort for me.
After the talk, about fifteen of us went out to dinner. One man had come all the way from Hong Kong, as he had recently been diagnosed with chronic fatigue syndrome (ME/CFS) and wanted to spend some time with Dr. Mikovits to see if she could offer some suggestions about his treatment. There was also a young woman who was working for a close friend of my father, and she was trying to decide between a career in law or investigative journalism. At one point during the dinner, our host said what was in all our hearts. “We are doing this to help all of humanity. It doesn’t matter what country you come from, your age, or what condition you have, we all have to work together. We all have a role to play.”
That is my America, the one that makes me proud.
by Kent Heckenlively JD
Kent Heckenlively is the co-author with Dr. Judy Mikovits of PLAGUE: One Scientist’s Intrepid Search for the Truth About Chronic Fatigue Syndrome (ME/CFS), Autism, and Other Diseases. You can order the book on Amazon, Barnes&Noble.com, or from your local bookseller.