Long time chronic fatigue syndrome supporter and theorist, Rich Van Konynenburg died last night in his sleep. His wife Diana reported:
“There is no easy way to say this, and this message is very difficult for me to write.
Rich died early this morning. It appears that he suffered a massive heart attack in his sleep. He did not have a history of heart disease, so this was sudden and quite unexpected. It doesn’t seem possible to me that Rich is gone. I am at a loss to express how profoundly I will miss him (I already do!)”
Rich Von Konynenburg was a unique figure. Many people have created theories and proposed treatments for ME/CFS but Rich, who did not have the disorder and was not a medical doctor, was able to uniquely engage the patient community in his ideas and protocols. Seemingly inexhaustible, few individuals have been as generous and forthcoming with their time and attention.
A physicist by training, Rich Von Konynenburg received a Ph.D. from the University of California Davis in 1974 and then worked at the Lawrence Livermore National Nuclear Laboratory for 30 years. He began studying ME/CFS about 15 years ago, and formally proposed a biochemical model of stress-induced glutathione depletion in the disorder in 2004.
Rich’s theory proposed that glutathione, the master anti-oxidant in the body and a key player in the cellular energy production system, was depleted in the cells of ME/CFS patients, and he believed this leads to many of the dysfunctions found in ME/CFS.
Even as Rich published his work he began readjusting it to take into account recent information implicating the methylation process in glutathione depletion and disease. After much research and attending numerous conferences and seminars Rich came to believe that a methylation block was at work in both ME/CFS and autism, two disorders he became convinced had similar underlying causes.
In 2007 he re-engineered his theory (now called the Glutathione Depletion – Methylation Cycle Block Hypothesis) to incorporate his new understanding, and he created a simplified methylation protocol specifically for ME/CFS patients based in part on Dr. Amy Yasko’s work. Rich’s Simplified Methylation protocol has been used widely by patients.
An ever present figure at ME/CFS conferences, Rich, to his frustration, never got on the main stage at the IACFS/ME International conference, but his theories and treatment protocol spread quickly into physicians’ practices with Dr. Neil Nathan, Dr. Enlander and Dr. Myhill and others using it and with Dr. Myhill posting a page on his theory on her website.
Rich’s theory on the connections between autism and CFS was published in the Townsend Letters in 2006 and he collaborated with Dr. Neil Nathan on a 2009 study which found that 2/3rds of respondents had received positive effects. He gave a three hour lecture at a conference in Sweden, was a main speaker at the Mt. Sinai conference in 2011, and was due to present at the International Lyme Conference before his untimely death in 2012.
Rich will be remembered in the ME/CFS Community for his creativity, his passion, and above all his generosity and willingness to carefully explain (in over 2700 posts on the Phoenix Rising Forums) his theories and treatment protocols.
Below are excerpts from a tribute from Sergio, an ME/CFS patient…
I first knew of him when I was 23, and bedridden 24/7. I had fallen sick 1.5 years ago…..
I asked him for professional advice several times, and we corresponded both publicly and privately many times over the last years.
He definitely saved my life. He diagnosed a cyanide poisoning I was suffering from taking cyanocobalamine. I think very few people on the earth would have been able to arrive at that conclusion… I was astonished and followed his advice (supported by my Doctor), and I did overcome that acute situation…
Then he helped me to move to the States to follow a treatment. I could not have done it without his help…. In some way, following Rich’s advice, I got to find my current treatment, which so far has improved me from being bed-bound to being at about my 60%. This allowed me to enroll in medical school last year.
Now I am studying the second year of medical school, and I am, more than ever, determined to become a Doctor, no matter what, in order to try to help people with these kinds of neuro-immune diseases.
Rich, as a scientific and an exceptional person, not only gave me the strength and hope to go on when life did not make any sense to me, but certainly guided my life and helped me to find a purpose, a goal, that I am going to pursue until we finally find out what’s going on with these conditions.
Looking back on my interactions with Rich, the word that came to mind is an old-fashioned one: a gentleman, a kind, good-hearted man with a robust sense of humor and a keen commitment to the ME/CFS Community. He will be missed…