My Evening With Ian Lipkin and Mady Hornig…

As an attorney I learned that people often don’t readily tell the truth.  Especially when they have done the wrong thing…

By Kent Heckenlively, JD

Federal Court documents say:

“Throughout their professional relationship, Lipkin made clear that he expected Plaintiff to be his largely-silent and always subservient partner, forced to work almost exclusively on his projects and to give him undue credit for her own work, to the detriment of her own professional growth, stature in their shared field, and productivity.” 

That’s why my approach was always to ask questions, listen to the answers, and act as if I totally got what they were saying. You’ve probably seen the same act on pretty much every cop show.

But what I was REALLY doing was seeing how they answered the questions.

You see, among lawyers, the LOGICAL presumption is that if you catch them lying about ONE THING, you’re probably going to catch them LYING about a LOT of other things.

If you catch them acting ABNORMAL OR CORRUPTLY in one circumstance, you have a window into how they’re likely to act in similar circumstances.

On the night of September 19, 2013 I spent time with Ian Lipkin and Mady Hornig at a small cocktail party in Manhattan.  

I knew who they were and they knew who I was.  I had HOPED that there was the possibility of making movement in answering important questions about chronic fatigue syndrome (ME/CFS) and autism.

In light of Mady Hornig’s lawsuit against Ian Lipkin and Columbia University, it is interesting to review my visit with the two of them.

I have ALWAYS believed that if my enemies want to end this war, I will be happy to go the extra mile for peace and truth.  Some of my fellow autism activists thought it was a fool’s errand.  But I always like to get an up-close look at my enemy.  Sometimes I will discover I have misjudged them.  Other times I will realize that there is no way we can be allies and that there is only ONE Way all of this will end.

I give you the account of my night with Ian Lipkin and Mady Hornig as detailed in my book, INOCULATED: How Science Lost its Soul in Autism.

“I must confess that I was nervous as I dressed in my New York hotel room for what was billed as a “Cocktail Reception to Celebrate the Work of The Center for Infection and Immunity Featuring W, Ian Lipkin, M.D., Columbia University, Mailman School of Public Health – Hosted by Emanuel Stern at the SoHo Grand Hotel, 310 West Broadway, New York City.”  I couldn’t help but feel like some barbarian tribal leader, summoned by Caesar to Rome for an audience.  I dressed in black and when I looked at myself in the mirror thought I looked a little like Luke Skywalker in Return of the Jedi, surrendering myself to Darth Vader to be taken to the Death Star.  I mean, isn’t that what heroes are supposed to do?  Venture into the very lair of the enemy?  Luke at the Death Star?  Frodo and Sam at Mount Doom?

I took a cab to the SoHo Grand Hotel, entered the lobby, got directions to where the event was being held, and made my way to the location.  I opened the doors, expecting to see some grand ballroom, but instead saw a cramped little space with six to seven tables, a buffet and drink table set up at the back with folders on the work of the center, along with some cute little blue plastic circular hand sanitizers emblazoned with the crest of the Center for Infection and Immunity as well as a line drawing of a microscope, and a podium with microphone at the front for the speakers.  There were maybe thirty people in the room.  I’d seen bigger crowds at a PTA meeting.  “This is the grand citadel of science?” I thought to myself.

Looking around the room I quickly identified Mady Hornig.  She is an attractive woman, with a lean, angular face, surrounded by ringlets of dark hair.  I made my way over to her and introduced myself.

She smiled broadly, cocked her head a little to the side, and extended a hand.  “Kent!  It’s so nice to finally meet you!”

“Really?” I asked, with a laugh.  “It’s nice to meet me?”

“Yes.  Why not?”

“Well, I’ve written articles which have criticized some of your research.”

“Were they mean?  Or rude?”

“I don’t think so.  I didn’t make it personal.”

“Then we don’t have a problem.”

“Okay, Mady, I’ve got a question I wanted to ask you for years.”

I paused for a moment and she gave me a look which seemed to say, “Proceed.”

“I consider your article, ‘The Neurotoxic Effects of Thimerosal are Mouse Strain Dependent’ to be one of the most important papers in autism.  But you published that in 2004 and now it’s 2013.  Why no other papers?”

She rolled her eyes and said, “You don’t know?”

“No.”

She proceeded to tell me that after the publication of her paper, a blogger named Autism Diva had published many articles criticizing her work, referring to it as the “Rain Mouse” experiments[i] and it had caused her a great deal of difficulty with the Columbia administration.  “I felt like I was under probation for like five years after that paper came out.”

“Did this Autism Diva person have any academic credentials that would make the administration sit up and take notice?” I asked.

“None.”

“And they listened to her?”

“Yes.”

We gave each other one of those looks that in my mind happens only when two autism parents get together, we tell our war stories, and then come to that inevitable point where further investigation should be done and it isn’t and you both think, “That’s autism.  They really don’t want to ask the important questions.”  We talked for a little while longer and she told me she came from a socially prominent family who ran something called “Camp Hornig.”  I later found an article on “Camp Hornig” in The New York Times that described it in the following words.

The invitation to Camp Hornig, as its patriarch – an investment banker and a triathelete – likes to call it, might include tennis at courts sunken into an apple orchard or kayaking out to the Atlantic from the dock across the road.

“It might be for a fund-raiser for Riverkeeper, the environmental group of which Mr. Hornig is a director, with Hampton blondes like Christie Brinkley meandering across the four acres punctuated by Japanese anemones, daphne and peonies shaded by stone walls and a pergola woven with purple wisteria.

Or it might be for entrée into Ms. Hornig’s salon on the veranda of the main house, with writers and artists holding court, and guests encouraged to converse on topics like politics and religion that typically zip lips in polite company.” [ii]

It sounds like a nice place.  I doubt I will ever receive an invitation.

I found an article on another member of the Hornig tribe in the pages of The New York Times.  Donald Horning had designed the detonators for the world’s first atomic bomb, code-named Trinity.  After connecting the switches on the night of the final test and scampering down from the tower holding the bomb, the scientific director of the Manhattan project, J. Robert Oppenheimer, ordered him back, not wanting to leave the bomb alone during a lightning storm.  While waiting in the tower in the electrical storm with the world’s first nuclear device, he passed the time by reading a collection of humorous essays.  Babysitting an atomic bomb and reading a joke book.  He sounded like just my kind of guy.

“Around midnight the storm had moved through, Hornig was allowed to come down from the tower to wait with the others in a small bunker located about five miles away.  As recounted in the article, “The bomb was detonated at 5:29:45 a.m. on July 16 [1945] as Dr. Hornig and the others watched from the bunker.  He later remembered the swirling orange fireball filling the sky as ‘one of the most aesthetically pleasing things I have ever seen.’”[iii] 

“Hornig worked as a science advisor to President Lyndon Johnson from 1964 to 1969, advising him on space missions, atom smashers, and more mundane issues such as beds for Medicare patients, and desalinization plans.  He later became president of Brown University and was one of the youngest scientists ever elected to the National Academy of Sciences.” [iv]

As she talked about her family, it was easy for me to see how even though her thimerosal article had put her on “probation” for five years, her family standing would have in some way protected her.  I got the impression that Mady Hornig had endured something of a Mexican stand-off with Columbia over her research.  Given her family connection, it would have been difficult for Columbia to get rid of her.  But they could probably make her daily life unpleasant.

I found Dr. Lipkin a short time after that as I had a present I wanted to give to him.  Lipkin always reminded me of the actor, Kevin Costner, with his intense, intelligent features, and although he looks thin, I was a little surprised to discover he wasn’t more than five-foot-ten.  I had expected him to tower over me, but we were pretty close to eye-level. 

I gave him a hard-cover copy of the book, “7 Men and the Secret of their Greatness,” by Eric Metaxas.  I’d read an earlier biography by Metaxas of the English political figure, William Wilberforce, who was on the way to becoming the Prime Minister of Great Britain, when he made the choice to fight against slavery instead. 

The book I gave Lipkin profiled seven men, including George Washington, Jackie Robinson, and Dietrich Bonhoeffer, a Christian pastor who had stood up to Hitler and been executed in the final days of the war.   Each of the men chose to surrender some personal advantage for what they believed to be a higher cause.  Washington had given up the opportunity to become king of the United States after he beat the British.  Robinson had decided not to respond to all of the racial insults thrown his way when he became the first high profile African-American to play professional baseball, even though he had a fiery nature.  I wrote an inscription to Lipkin inside which read, “A man’s past is not his future.  I think you are a good man, but you could be a great one.”

Prior to the evening’s talk I was able to spend a good deal of time speaking with Dean Linda Fried, as well as some of the other guests.  Before the evening’s presentations I asked Dr. Lipkin if I could record the talk.

“It’s probably going to be very boring,” he replied.

“That’s okay.  I’d still like to record it if it’s okay with you.”

“That’s fine,” he replied.

Dean Linda Fried opened up the evening by talking about the work of the Center for Infection and Immunity, mentioned that some of the people involved in the making of the film Contagion, a big screen film with Matt Damon, were present.  She also spoke with pride over how the Columbia team was the only American academic institution to be invited to the Kingdom of Saudi Arabia to figure out the source of the Middle East Respiratory Syndrome (MERS), a corona virus.  Lipkin served as master of ceremonies, bringing Mady Hornig out first to talk about autism.  Hornig began by saying that “Twenty years ago, I would suspect that few, if any of you knew of a family member, or of a family that was affected by autism.  Today, I would be surprised if any of you didn’t have some connection to a family that was affected by autism.”[v]

Hornig talked for a little while longer about autism, the amazing repository of samples Columbia had, whether the microbes in the digestive system could be causing some chronic diseases, the possibility that vitamin D levels might be at issue, then moved back and forth between talking about chronic fatigue syndrome/ME and autism, as if they were interchangeable problems.  I was pleased that I had recorded the talk, because it was earth-shattering to me.  I begin with Dr. Hornig in the middle of her presentation.

Mady Hornig: . . . We have one of the largest collection of chronic fatigue syndrome samples in the country, if not the world.  And are moving in this disorder, which like autism, has been thought of as a psychological disorder for such a long time.  It’s been stigmatized.  People don’t want this diagnosis because they feel they’re going to be told it’s all in your head and you should be trying harder.  And it robs people of their vitality in the prime of life.  There are a million people in the United States who are currently diagnosed with chronic fatigue syndrome.  And we are looking for biomarkers and blood markers to tell us who might respond to certain types of therapy and who might have a response to a particular course of action that may really mitigate their diseases.

We’re really excited about that.  It is really important work and addressing autism and chronic fatigue syndrome is really a vital function because there are so many individuals who are afflicted, who are often looked at as unsolved cases, things we can’t do anything about.  So we’re really excited about that.  And I’m happy to take any questions if you want.[vi]

The room was silent.  I wondered if I should stand to ask a question, but I was bursting with excitement inside, and didn’t want to blow it.  The book I was writing at the time, PLAGUE, made the argument that autism was simply what chronic fatigue syndrome/ME looked like if the triggering event happened while an infant, and chronic fatigue syndrome was what autism looked like if the triggering event happened while an adult.

I felt like I was in the room on probation, and I didn’t want to get thrown out.  None of the assembled guests seemed to have a question, so Lipkin stepped back to the podium.

Ian Lipkin:  So many people are aware of the work we do with emerging infectious diseases.  But we use the same tool kit to study chronic diseases.  And autism, as Mady said, is a disease that’s emerging, as is chronic fatigue syndrome.  When we began working on these fifteen years ago they were described as psychological disorders.  And they’re clearly recognized now as biologically based.  And the genetic tests and the protein studies that we’re doing suggest we may have some clues to not only recognize them early, but to treat them as well.  I’m going to turn this over to Mady for questions.  Are there any questions that anybody would like to pose?  (The room was silent for a moment.)  You can also talk to her afterwards.

Finally a woman raised her hand and Lipkin called on her.

Ian Lipkin:  Melanie.

Melanie:  What about the increase in allergies?  Is that related?

Mady Hornig:  Very interesting point.  Have you heard of the so-called “hygenie hypothesis?”  There’s an idea that perhaps we’re too clean in our society.  You’ve got some of these souvenirs, those hand sanitizers.  There’s an idea that perhaps we need to be exposed to certain bacteria and parasites, to some degree, in order to have a healthy immune system.  That’s one thought.

There are also stimulators that may also need to be considered.  Heavy metals from the environment and other sources.  We get it from our food and other sources, mercury as well as manganese-

“Stimulators?”  I thought to myself.

Lipkin quickly chimed in from a few feet away.  Was he worried about what I might be thinking when she started talking about mercury and “stimulators?”

Ian Lipkin: Coal-fired power plants!

Mady Hornig:  Exactly.  Coal-fired power plants are a very important source of mercury in the environment.  And we know this can alter your immune system to actually respond to all sorts of exogenous agents, including various sorts of viruses, and so forth, in an auto-immune fashion.  Also, probably interacts with genes.

So, genetic susceptibility, the environmental exposure, and probably timing.  The “three strikes” hypothesis.  Genes, environment, and timing, which are probably very important in determining who might have these reactions to relatively common agents.  Not everybody has autoimmune disease, not everybody has allergic disorders, but these are very important.  We are just now doing an analysis in chronic fatigue syndrome and allergic signals and signatures in the peripheral blood as well as the spinal fluid, to see if we can predict a certain response, hopefully to different types of intervention.[vii]

I sat at my table in the SoHo Grand Hotel in New York City simply thunderstruck by what I was hearing.  I was among the avatars of science and they were saying the same thing that we, supposedly “anti-science” parents, were claiming.  Children with autism, and also allergies, were probably being exposed to certain “stimulators” such as mercury, which then altered their immune response to “various sorts of viruses, and so forth.” 

According to Lipkin, we should be concerned about the mercury floating in the air from coal-fired power plants, but avoid like the plague the issue of the mercury which was directly injected into the bloodstreams through vaccination.

Genetics certainly played a role, but something new had come into the environment.  The genes were the same as they’d been for thousands of years.  When Donald Hornig scrambled back into the tower on the night of July 16, 1945 to wait for the storm to pass so that the world’s first atomic bomb could be detonated, he wasn’t wondering why 1-2% of his fellow countrymen couldn’t fight the Japanese because they had autism.

A couple more questions were asked, then I decided it was my turn to join the conversation.  I raised my arm and Lipkin noticed me.  Maybe it was just my perception, but I thought I saw pure, stark terror in Lipkin’s eyes at what I might say.  He didn’t seem to know if he should call on me, but I was the only one in that small room with my hand raised.  I gave him a little half-smile and kept my arm in the air.  Finally, after a few awkward moments, he called on me.

Ian Lipkin:  Kent.

Kent Heckenlively:  One doctor I’ve talked to suggests what may be happening in diseases like chronic fatigue syndrome and autism is that there’s a massive powering down of the mitochondria, causing low mitochondrial energy.  Is that a natural consequence of the things you’re looking at?

Mady Hornig:  Very, very important.  If you consider the blood cells that are important in your immune system, they all have mitochondria.  Mitochondria are critically sensitive to oxidative stressors.  Oxidative stress can happen from heavy metals, it can happen from viruses, it can happen from bacteria.  And if you have a mitochondrial compromise, in other words, your mitochondria are the energy centers of all your cells.

If this happens in your immune cells, you can shift that immune cell, that white blood cell, to where it is an auto-immune type of responsiveness.  So that whereas before it may have been healthy and been able to respond to a virus by containing the infection and clearing it from your system.  Instead, the mitochondria, if there’s an oxidative stress reaction, you may actually shift it so that the virus induces an auto-immune response and that auto-immune response may lead to anti-bodies.

That is, your body producing anti-bodies, which react against all sorts of body parts, including the brain.  So in autism and chronic fatigue syndrome those may be particularly important types of auto-antibodies that we want to try to detect, and try to understand the process that leads to them.[viii]

It seemed that Lipkin decided Mady Hornig and I were having too much fun discussing the critical issues in chronic fatigue syndrome/ME and autism because he quickly stepped to the podium, thanked Mady for her presentation, and introduced the next speaker, Brent Williams, who would talk about the microbiome.

Williams began his presentation by asking the audience whether we should consider ourselves a man or a microbe.  After people had shouted out various responses, he said we were both.  He then launched into a very interesting discussion about the microbiome, which is the way scientists describe the different populations of bacteria which live inside of us.  The current thinking is that these bacterial communities may play a vital role in our health and well-being.

Brent Williams:  So at the Center we are dedicated to trying to understand how these microbes and our collective microbiome is impacting human health.  And to these ends we are looking at several factors that may be important, what microbes may be important.  These include autism, colorectal cancer, as well as women’s health issues.  We were the first to show that in children with autism there is an alteration in the types of microbes inhabiting the intestine and the composition of those microbes.

And what we found is that there was actually this link to how children with autism were able to digest carbohydrates.  And these changes in carbohydrate metabolism were actually altering the microbiome.  And we have recently started looking at how microbes may be influencing cancer.  And we have recently done a study with Steve Lipkin at Cornell, looking at very aggressive forms of colorectal cancer.  And what we found is that there are very specific microbes that perform very particular functions that we really believe are driving the progression of these types of colorectal cancer.[ix]

Dr. Brent Williams continued his discussion of the microbial world and its link to health and I found it all to be very compelling.  Laurie asked another interesting question, this time about whether the abnormal bacteria were a consequence of a bad diet which led to the abnormality and then disease, or whether the abnormal bacteria came first, leading to disease.  (The short answer was: Good question – We don’t know.)

Dr. Luc Montagnier, the French scientist who won the Nobel Prize for discovery of the HIV retrovirus had recently been looking at abnormal bacteria in autism, so I raised my hand again to ask a question.

Ian Lipkin: (Author’s note – He seemed a little less wary when calling on me this time.)

Kent?

Kent Heckenlively:  I know that Luc Montagnier, who has the Nobel Prize for HIV is now treating autistic children with long-term antibiotics.  Do you have any thoughts on that?

Brent Williams:  So Luc Montagnier just came to our center recently, because he was interested in one of our findings in autism.  That we had found a particular bacteria called setorella, that was found in more than 50% of the children with autism and absent in controls.  But in regards to antibiotics, I think antibiotics can be very dangerous.  Because in using an antibiotic you’re not really targeting the bacteria that is the problem.  And what you’re ending up doing in some cases is wiping out all the beneficial gut flora, which might open you up to other infections.  You know, definitely, as we start to understand which microbes cause which problem, then we can really begin to target those microbes rather than wiping out everything.[x]

I thought Dr. Williams made an excellent point.  In addition to my concerns about vaccines, my daughter, Jacqueline had several ear infections (which we think were connected to her cow-based milk formula) and was treated with several rounds of anti-biotics.  I have always wondered if that might have also contributed to her seizure disorder and autism.

The final speaker was Dr. Simon Anthony and his presentation was about trying to create a world database of viruses, such as those that exist in seals or birds, bats, and rodents, even in remote places like the Amazon jungle.  That way we might have some understanding of them before they come rampaging into the human population, like the Ebola or Marburg virus.  It was an ambitious and worthy project.

When the evening’s presentations finished an older man came up to me and extended a hand.  “I don’t know you, but you asked some really good questions.  Are you a scientist?”

“No,” I replied.  “I’m just an autism parent.”

There was a good deal of social mixing after the talks.  I stood next to Ian Lipkin as he displayed for everybody what looked like an enormous plastic suitcase filled with scientific equipment.  This was their rapid response kit, ready to be packed up and shipped anywhere in the world there was a suspicious viral outbreak.  He was leaving the next morning to Saudi Arabia to investigate the Middle Eastern Respiratory Syndrome, eventually found to be linked to a corona virus.

I had a wonderful and animated conversation with Dr. Jay Varma, a tall, good-looking Indian man who was Deputy Commissioner for Disease Control in New York City.  I told him the story of Jacqueline’s vaccine reactions, and he nodded, saying he’d heard a lot of similar stories and that “we need to find out what’s going on with these kids.”  Even though I’d just met him, I had an overwhelming desire to hug the man.

As the evening wound down I drifted back to Mady Hornig.  She seemed to have enjoyed my questions during her talk and I was still feeling good that I’d made at least one member of this distinguished gathering think I was a scientist.  I told her about the book I was writing with Dr. Judy Mikovits and the XMRV investigation and asked if she’d let me interview her for it.

“Sure!”

“I might get you into a little bit of trouble,” I warned her, knowing we would both be thinking of the difficulty she’d run into with Autism Diva and the “five years” she felt she’d been on “probation” at Columbia for the research she’d done on thimerosal.  “You probably want to consider for a while before you answer.”

“Okay, I’ll think about it.”

The night was coming to a natural close when Mady turned the conversation in an unexpected direction.  “I’ve always thought I should write a book about my life in science.”

I’m certain I could not conceal my surprise.  “I’d love to help in any way I can,” I said, shocked by this sudden revelation.

“I might need some.”

“I’m happy to assist.  I’ll call you next week.”

“Okay.”

There was no doubt about it.  I’d spent the night with a member of the scientific nobility, maybe even a queen.  And even though some might consider me the barbarian leader of a bunch of anti-science savages, I still had my manners.  I took her hand, bowed slightly in deference like a nineteenth century gentleman, and kissed her hand.  “My lady, I take my leave of you now.”

I phoned several times the next week and left messages, but she never called back.  I figured she must have finally come to her senses.  I am a dangerous man.  A collaboration with somebody like me would probably put her academic career at Columbia in great jeopardy.  It was a new experience for me to be the “bad boy.”  Normally, I am the straight arrow, the goody-two-shoes, the Dudley Do-Right.  Maybe in times of injustice it is exactly those types of people who become the fiercest of rebels.

Regardless of what she thought of me, I will always have fond memories of that single night at the SoHo Grand Hotel in New York, the greatest city in the world.

And that was the last I heard from Mady Hornig and Ian Lipkin.

In light of Mady Hornig’s lawsuit I see things in a slightly different light.  Even then, the entire enterprise seemed so fragile.  I concluded that my enemy was weak.  And the corruption I suspected in their science was just as present in their personal lives.

And yes, Mady Hornig struck me as a bit of a “damsel in distress.”  

I mean, did she really want me to collaborate with her on a book about her life in science?  In retrospect, I think it was a small rebellion on her part.  She WANTED the truth to get out, but LACKED THE COURAGE to tell it.

And to speak candidly, around the age of twenty-five I stopped being the white knight to damsels in distress.  The truth is, nobody gets “saved” by somebody else. Put on your big-girl pants and do the right thing.

The tragedy of a person’s life is always more human and complicated than you expect.  One is tempted to excuse bad behavior, but then you see the examples of true courage, like that displayed by Dr. Andrew Wakefield and Dr. Judy Mikovits and you realize there can be no commerce with corruption.

By Kent Heckenlively, JD
Kent Heckenlively is the author of INOCULATED: How Science Lost its Soul in Autism, available on Amazon and at Barnes&Noble.com

 

 

 

 

Bibliography:

[i] Prometheus, “Dr. Hornig’s Autistic mice,” A Photon in the Darkness, July 29, 2005, www.photoninthedarkness.blogspot.com/2005/07/dr-hornigs-autistic-mice_29.html

[ii] Kathryn Shattuck, “Trying to Corner the Market on Charity,” The New York Times, April 22, 2010, www.nytimes.com/2010/04/23/travel/23away.html?_r=0

[iii] Douglas Martin, “Donald Hornig, Last to See First A-Bomb, Dies at 92,” The New York Times, January 26, 2013, www.nytimes.com/2013/01/27/science/donald-hornig-a-bomb-scientist-and-brown-president-dies-at-92.html?_r=0

[iv] Douglas Martin, “Donald Hornig, Last to See First A-Bomb, Dies at 92,” The New York Times, January 26, 2013, www.nytimes.com/2013/01/27/science/donald-hornig-a-bomb-scientist-and-brown-president-dies-at-92.html?_r=0

[v] Columbia Cocktail Party, September 19, 2013 – SoHo Grand Hotel – Featuring Mady Hornig, Brent Williams, and William Karesh (recorded with permission.)

[vi] Columbia Cocktail Party, September 19, 2013 – SoHo Grand Hotel – Featuring Mady Hornig, Brent Williams, and William Karesh (recorded with permission.)

[vii] Columbia Cocktail Party, September 19, 2013 – SoHo Grand Hotel – Featuring Mady Hornig, Brent Williams, and William Karesh (recorded with permission.)

[viii] Columbia Cocktail Party, September 19, 2013 – SoHo Grand Hotel – Featuring Mady Hornig, Brent Williams, and William Karesh (recorded with permission.)

[ix] Columbia Cocktail Party, September 19, 2013 – SoHo Grand Hotel – Featuring Mady Hornig, Brent Williams, and William Karesh (recorded with permission.)

[x] Columbia Cocktail Party, September 19, 2013 – SoHo Grand Hotel – Featuring Mady Hornig, Brent Williams, and William Karesh (recorded with permission.)