TOUCHED BY LYME: "Under Our Skin" producer says cronyism and conflicts of interest have stymied Lyme research
Kris Newby, senior producer of the awarding-winning Lyme disease documentary, recently addressed the Institute of Medicine's listening session for "The State of the Science" of Lyme and other tick-borne infections. She observed that Lyme research has been tightly controlled by the same lead IDSA Lyme guidelines authors for the last 20 years–while we still have no reliable testing and no effective treatments for patients who fail the IDSA protocols.
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The Institute of Medicine, part of the National Academy of Sciences, is examining the “state of the science” regarding Lyme disease. In April, the IOM heard from various scientists. Recently, the IOM committee held the second of several “listening sessions” via telephone conference call, which allowed Lyme patients and advocates to give input.
What follows are remarks from Open Eye Pictures Senior Producer Kris Newby.
My name is Kris Newby, and I’m the Senior Producer of the award-winning documentary on Lyme disease, UNDER OUR SKIN. I am a science writer by profession, with a BS in engineering/premed from the Univ. of Utah and a Masters in engineering from Stanford.
While filming UNDER OUR SKIN, I spent four years trying to understand how and why Lyme disease research went off track. My investigation involved hundreds of interviews with researchers, clinicians and patients, as well as an extensive analysis of grants and the conflicts of interest of the researchers receiving those grants.
In my three-minute slot, I’ll suggest some science areas for the committee to pursue as it sets the course for research.
But first, I’d like to start off with a quote from Dr. Willy Burgdorfer, the NIH Scientist Emeritus who discovered the organism behind Lyme disease. While we were filming at his home in Hamilton, Montana, he told our film crew:
“The controversy in the Lyme disease research is a shameful affair, and I say that because the whole thing is politically tainted. Money goes to people who have for the past 30 years produced the same thing — nothing.”
I believe the top priority of this committee should be to enlist a greater diversity of researchers and Lyme-treating clinicians to help set research priorities.
Lyme disease serves as an excellent case study on how cronyism and conflicts of interest can lead to stagnation in medical research.
This research has been tightly controlled by the same lead IDSA Lyme guidelines authors for the last two decades. Collectively, their university labs have received over $130 million dollars in government grants since 1990. Over half of these grants have gone to only two universities, New York Medical College and Yale, and a disproportionate amount of the grants have been used to support these researchers’ personal interests in tick-borne disease vaccines and tests. For example, New YorkMedicalCollege researchers alone have founded 5 test/vaccine companies in the last few years.
Looking at the state of Lyme disease today, 20 years later, we still have no reliable testing and no effective treatments for the large percentage of Lyme patients who fail the IDSA protocols.
So, for your workshop on Lyme science, I say you urgently need to bring new ideas to the table, by enlisting the following researchers:
Dr. John Aucott of Johns Hopkins, who is identifying early Lyme disease serum markers to help develop tests that will work during the first month of infection.
Dr. Ben Luft of Stony Brook, who is working to identify which Lyme strains are the most virulent in different geographic regions, because our current FDA-approved Lyme tests only look for one of 120 known strains.
Dr. Eva Sapi of the University of New Haven, who is investigating the role of biofilms in allowing Borrelia to create persistent illness.
Dr. Karen Newell of Texas A&M, who is working on a novel genomic strategy for overriding Lyme’s ability to disrupt the immune system.
Dr. Brian Fallon of ColumbiaUniversity, who is developing new criteria for diagnosing late Lyme.
Dr. Cheryl Koopman of StanfordUniversity, who is working to define symptom clusters to aid in the diagnosis of Lyme disease.
And finally, I feel it’s important to get input from the many community-based Lyme clinicians who are on the bleeding edge of treating the chronic manifestations of the disease.
Thank you for listening.
To read testimony from other patients and advocates, see the Touched by Lyme blog.
Thank you for taking seriouse this information. We are in this fight together, We will see changes as we continue to speak out!!!
Excellent points! And, excellent suggestions — now if they will only take them to heart!
Thank you for your time & effort, and for speaking out on behalf of those who are unable.
When you came to AZ Chris with the movie and I first learned about your work, you are fighting this for all of us whom suffer with this disease. Thank you for your continued effort; your work will prevail!!!I am 90% better due to my wonderful doctor who takes a lot of heat to help his patients. Thank goodness for people like him and you. I now take calls to help the sick understand this disease and help patients at our clinic to give back. I was blessed because my Lyme was disguised as Lupus, Scleraderma and RA; this is was my blood work diagnosis. Not wanting to take those harsh medications, i sought out integrated medical doctors who got me well. There is hope with the right testing and treatment; you are on the right fight. Thank you!!!
Thank you so much for your work on the film and for all that you've done to help change the way Lyme is treated. I've been struggling for the past 4 years to find somebody that will treat me, but all I get are responses like, "But you've already taken the antibiotics. That means your symptoms are either from permanent nerve damage or something else." They simply refuse to look any further into the matter, even though I got WORSE after taking the antibiotics!
From the bottom of my heart, thank you for your hard work!
The circumstances that keep Lyme sufferers untreated, stigmatized, and misdiagnosed need continued professional efforts like this. If they won't listen to vocal advocates from patient communities, then hopefully they will listen a little more to their peers. Thank you so much Kris.
If people like Kris Newby continue to speak out loudly, we will begin to see real progress on the fight against diagnosing, treating and then vaccinating against Lyme and other tick-borne disease. Bravo for speaking out, Kris, and know there are hundreds of thousands (if not millions) of people standing in your shadow for whom you are speaking.
Slowly but surely we lyme suffers will convience the doctors it is real. How can so many people be denied help when we are dying with this chronic lyme disease. Thank you for the boldness and persistance in your work.
I am so glad to hear that Kris was able to contribute her extensive research to the IOM. I am holding on to the hope that we will see the day that Lyme testing & treatment are not hindered by institutions like the IDSA.
Kris you are a shining light for Lyme patients. Thank you for so eloquently speaking the truth for us.
Kris I have suffered for the last 12 years with chronic lyme I am now taking Doxy. And acidopholus everyday. I now feel healthy and symptom free But if I stop,as in the past ,it will return with a vengeance. Thanks for you're help!
Thank you. The film was outstanding and from this movie, I learned that newborn infants are born with Lyme's. Children who may not test positive on the Lyme's tests will suffer without being able to know what is happening to them. I hope I can give back to those who stayed determined to fight this disease and create an awareness!
Kris was also one of the few testifiers who was asked a question by a panelist. Panelist Nina Gerber asked Kris to comment on failure of treatment.
Kris replied her answer had different levels. First, that she and her husband first treated via IDSA treatment which failed. Then they treated using ILADS standard of care and did much better.
She referred to Dr Steven Phillips with peer-reviewed journal articles proving persistence, that 2-4 weeks of antibiotics isn't enough, and to read research done by Ben Luft at Stonybrook.
That the Lyme bacteria has 50% more plasmids than syphilis, that it mutates rapidly, that strains vary everywhere, yet only one strain is tested for, the one that came originally from Shelter Island, NY.
I don't know if anyone could have said it better. You are 100% right. People have figured out a way to funnel money to their dead-end research and keep it coming. I think that when there are no applicable results from the funded research, than those organizations need to be rotated to the bottom of the list or grant recipients. The amount of money being wasted on dead-end research is so vast, that it would probably be better to not spend any. It's the private, non-affiliated research that is developing the results being used to make those with autism and Lyme disease well. And there is a connection.
I WOULD LOVE TO HEAR ABOUT YOUR COMMENT THAT LYME DISEASE AND AUTISM ARE CONNECTED, AND HOW YOU LEARNED THIS. (WHERE DID YOU READ ABOUT IT, ETC.)
THANKS, LORA JOHNSON (I CONTRACTED LYME IN 1989 AND WAS MISDIAGNOSED FOR
THREE YEARS, SO MY CONDITION BECAME
SEVERE. MANY DOCTORS, THERAPIES, AND MEDICATIONS LATER, I AM FAR BETTER AND AM ABLE TO WORK PART TIME AND HAVE SOME SEMBLANCE OF A LIFE. I HAD A SPINAL TAP AT ONE POINT TO PROVE THAT THE INFECTION WAS GONE, SO THE REMAINING SYMPTOMS ARE CALLED FIBROMYALGIA. IN ADDITION, KNOWING THAT LYME CAN AFFECT THE ABILITY TO GET RESTORATIVE SLEEP, I HAD A SLEEP STUDY DONE ($2,000 OUT OF POCKET) TO FIND THAT I HAD SUCH A SERIOUS SLEEP DISORDER – TO THE POINT THAT I WAS NOT DREAMING AT ALL; WHICH IS WHAT IS DONE TO POW’S TO KEEP THEM EXHAUSTED, WEAK, AND CONFUSED. SOUND FAMILIAR ?
If they, or someone in their family had Lyme, things would be a lot different.
Thank you for this information. It is long overdue, and will hopefully not be too late for many lyme infected people. In this instance haste does not make waste !!!! Lets get going.