16 August 2002

Franklin Award Nominee to present at 13th International Symposium on the Autonomic Nervous System

2002 Franklin Award nominee D. M. Lindsay has been selected to present his contentions about autonomic nervous system dysfunction, orthostatic intolerance, and the chronic fatigue syndrome at the 13th International Symposium on the Autonomic Nervous System in Hilton Head, SC, this 24-27 of October.

D. M. Lindsay (left) and Jon Scheibel in the Rayburn Congressional Office Building. Lindsay stated, "the bathroom had the only mirror that we could find to make this pic of both of us possible. Zach was busy parking the rental car." Click image to enlarge

D. M. Lindsay hopes that his abstract, entitled "Acute and Chronic Aspects of Dysautonomia Prompt Proposed Novel Pharmacological Treatment", may change the way some fatigue related disorders are viewed and even treated. Lindsay, still only in his early 20's, suffers from chronic fatigue and orthostatic intolerance and hopes to benefit from his proposed treatment. He will present his contentions and proposed treatment during one of two poster sessions at this prestigious international symposium organized by the American Autonomic Society ( AAS, www.americanautonomicsociety.org ). "Autonomic investigators from all over the world will be traveling to this symposium to present their findings. There is no better opportunity to impact the course of autonomic nervous system investigation than to present at the AAS's symposium. It seems that virtually all of the top clinicians and investigators involved in the treatment and investigation of ANS dysfunction will be in attendance," stated Lindsay.

The acceptance letter. Click image to enlarge

An estimated one million Americans suffer from dysautonomias (pronounced dis-auto-gnome-ee-uhs), which are disorders of the autonomic nervous system. The autonomic nervous system (ANS) regulates body temperature, blood pressure, heart rate, metabolism, and other "automatic" physiological functions. D. M. Lindsay is believed to be one of the one million American dysautonomia sufferers.

Lindsay has been virtually homebound since the summer of 1999 when he came down with mononucleosis, a viral infection that precipitated his chronic, disabling condition.

Despite suffering from severely limiting chronic fatigue and orthostatic intolerance, D. M. Lindsay has worked tirelessly, first to discover what type of disorder may be causing his disability, and then to develop a treatment for it. He first theorized that a "sympathetic nervous system insufficiency" may be responsible for his fatigue, lightheadedness, and other symptoms in April 2000. At that time he also proposed a possible treatment for his illness. In January of 2001 Lindsay found the National Dysautonomia Research Foundation (NDRF www.ndrf.org ) and proof that disorders like the one he described did indeed exist.

Zach Jones (left) and D.M. Lindsay before the NDRF banquet. Click image to enlarge

Shortly thereafter Lindsay also learned that his initial, April 2000 proposed treatment had shown some benefits in a closely related condition. Those benefits were deemed "paradoxical" by some in the field of dysautonomia research and may not have been fully explored. "This is not unusual," stated Lindsay. "Research into dysautonomias is relatively new, though a couple of investigators like Dr. Streeten and Dr. Coghlan have been looking into these disorders for quite a while. There is so much still unknown and there are always more ideas in science than there is time or money. But I hope that my contentions will make the line of research I propose an important priority within the field," Lindsay added.

(left to right) Vanderbilt's Bonnie Black and Dr. David Robertson with D. M. Lindsay. Click image to enlarge

Since the beginning of 2001, Lindsay has read hundreds of pages of journal articles relating to various aspects of autonomic dysfunction, his contentions, and his proposed treatment. He has corresponded and/or discussed his contentions with more than a dozen investigators in places as varied as Japan, Scotland, England, Canada, and in every corner the United States. "My discussions with various basic scientists in related fields has been vital to my progress. These investigators know their work and I'm glad they're willing to discuss their work with me," remarked Lindsay.

Earlier this year, an upcoming St. Louis filmmaker, Matthew Scott Krentz, began making a documentary about D. M. Lindsay's story. "I don't know how D.M. deals with his condition. I don't know how other dysautonomia sufferers deal with their's either. But I do know that theorizing the existence of a class of disorders long before you have proof that they exist is unusual. I also know that developing a new treatment for the disorder from which you suffer is also unusual. When I heard about his story I wanted to document is much of it as I could," stated Krentz.

Dr. Cecil Coghlan of the University of Alabama discusses chronic fatigue with D.M. Lindsay. Click image to enlarge

In January of 2002, Lindsay was nominated for the Benjamin Franklin Citizen Scientists Award for his proposed treatment of his own disorder. Information about D. M. Lindsay's Franklin Award nomination is available at the bottom of another edition of the SAS E-Bulletin at www.sas.org/E-Bulletin/2002-01-18/news/news.html

On March 18th, 2002, when President George W. Bush came to speak in St. Louis, Republican Missouri U.S. Senate candidate Jim Talent, and the folks at Talent for Senate, made it possible for Lindsay and Krentz to attend the President's speech. Moreover, when a local high-end clothier, Mr. Guy, learned of Lindsay's story, they outfitted D. M. Lindsay for the event at no charge. More information on Lindsay's attendance at A Missouri Salute to President George W. Bush is available at www.sas.org/E-Bulletin/2002-04-05/features3/features.html

This June 29th, at the University Of Pennsylvania, during the Society for Amateur Scientists' (SAS) first annual Citizen Scientists Conference, Franklin Award nominee D. M. Lindsay gave a presentation entitled "Chronic Fatigue, Dysautonomia and the Development of a Novel Treatment." Lindsay's presentation covered an overview of dysautonomia, a brief summary of his contentions, some of his personal story, and anecdotes about some of the virtues and habits that have served him well thus far in his research. More information on the SAS Conference at Penn is available at www.sas.org/Conference/Conference-2002.html , and an approximate text of Lindsay's presentation is available at www.sas.org/E-Bulletin/2002-07-12/features2/features.html

D. M. Lindsay discusses his contentions with Dr. Roy Freeman of Harvard Medical School and friend Zach Jones.. Click image to enlarge

At the NDRF Patient Conference held in Washington D.C. July 18-20, Lindsay met with other dysautonomia sufferers and learned about their experiences with autonomic nervous system dysfunction. Lindsay also had the opportunity to meet with many of the top research physicians in the field to discuss his abstract, proposed treatment, and its possilbe benefits. In addition to meeting with dysautonomia sufferers and investigators, Lindsay also met with Kevin Johnson, the Legislative Director of Congressman Istook of Oklahoma, to discuss the pressing public health problem that dysautonomia represents.

But of all these events, Lindsay considers his upcoming presentation at the 13th International Symposium on the Autonomic Nervous System to be the most important. Lindsay explained, "this symposium offers me a chance to present my contentions to the best possible audience: experts on the autonomic nervous system from all over the world."

Logan Hall, the location for the SAS conference at Penn, June 28-30, 2002.. Click image to enlarge

However, even though Lindsay hopes to go on to eventually become an M.D. Ph.D. and a writer, he never loses sight of the task at hand. Lindsay summed up his motivations for his research: "I love science, but everything I have done this year -- and indeed during the last several years -- has been designed to give me a chance to regain my health. I have been blessed with the ability to affect my situation for the better by first identifying the condition from which I suffer, and then developing a proposed treatment for it. I do get tired, and I often feel poorly, but I never lose hope because I believe I have the ability to improve my lot by my research efforts.

"But I never forget that I'm not the only one who suffers from truly debilitating chronic fatigue and orthostatic intolerance. One reason I work so hard is because my proposed treatment may help others, as well. I work hard because many of them can't do what I do -- in terms of my research and such. I work hard because I'm afraid others might lose hope.

"I work hard, but I don't work alone," Lindsay added. "Zach Jones and Jon Scheibel came with me to both D. C. and Philadelphia. My mother, Donny Carver, his family, my aunt, uncle and grandmother have all helped me. Linda and Dan Smith, and the professional dysautonomia investigators all work tirelessly to help people like me. Most recently I'd like to thank nurse Candy Busdiecker for her expert help. And lastly, Dr. Blumer, Dr. Wilson, Dr. Squier, Dr. Graham, Dr. Hasser, Dr. Reid, Dr. Thomas, Dr. Young, and many many others have helped to steer me through the world of scientific research. Without all of their help, I wouldn't have been able to do what I've done thus far."