A Tribute To Rich Van Konynenburg

Posted by Cort - View the Post on the Blog

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...

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My deepest condolences. We've lost a great man in many respects. Generous, bright and uniquely altruistic.
My deepest condolences to Dr. Van Konynenburg's wife and family. What a tremendous loss to the ME community and to Science. He was truly a Great Man; one in a million. Though very saddened, I thank God for sending us this Angel who helped us so much as a scientist and a friend.
A truly fine man. I met him last fall at the Mt Sinai conference, and he seemed to be in 100% health. He's saved a number of people with M.E; anyone in his family reading this should know that you are related to great man.

Wow, condolences to his family. I never met the man, but value his contributions to our plight greatly. Very saddened to hear this news.It makes me want to cry, knowing this man, and all of us suffered so much and didnt get better. J
i'm just devastated, as i think we all are. i felt like rich was one of my good friends. but i think many of us felt that way. he just reached out to so many of us. i adored him. i used to tell him i loved him after our conversations, and he would get embarrassed. :)

i thought so highly of him. i feel lucky to have had him in my life. his mind, and the amazing access we all had to his mind, was invaluable. a life line. you don't get access to that kind of scientific "big picture" mind usually, do you? not if you are a "lowly" me/cfs patient, isolated in bed or homebound or living in a tent because your chemical sensitivities so bad you can't tolerate a house. but he gave to just these sorts of people. he gave and gave and gave to our community - he gave his intelligence and his compassion. each email/post he sent to us was always framed by words like, "i'm sorry to hear how badly you are doing..." and "I hope you feel better soon." and he expressed outrage to me about the way we have been abandoned by our gov't and the medical community.

i do think we it would be good to do a memorial service for him for the me/cfs/lyme/mcs community, via conference call, if rich's family thinks this is an appropriate idea, so that everyone who is homebound can attend and share their love and grief, just like we did for our sweet patrick kelly (who took his own life -- because 17 yrs with me/cfs was such torture). rich was one of the very first people i asked to speak at patrick's service. once rich said yes, i knew i could pull it off (something i was not sure i could do). but with rich's support, i felt i could. rich was like that: a pillar in our community.

it is surreal to lose two friends in just a few short months. both gave so compassionately to our community.
I was in correspondence with Rich and met him at the Mount Sinai Conference in November 2011, conversing with and posing questions after the presentations. I can only repeat the things I have read here and elsewhere - he was a gentlemen, even something of a saint, someone generous with his time and mind. At his suggestion, I did a number of tests and he interpreted the results and told me what supplements might help. He did the same for dozens, perhaps hundreds of others. I have improved over the course of 2 years after having come down with CFS, and he certainly figured within that difficult slog. He had a presence and his ideas were imposing. Other specialists I have met showed great respect for him. I wish there were more people out there like him.
Thank you for all you did Rich, I agree with all sentiments posted above. This news brings tears to my eyes, his presence on this forum was appreciated and valued by many, and will be for a long, long time. RIP you great soul.

A dear friend has gone to be with the Lord. My heart is heavy. In the 13 years I have known him, he showed himself to be brilliant, compassionate, patient, a truly humble servant and a fellow believer so I know he is walking with Jesus. My thoughts are with his wife, Diana, and his family.

God Bless them and bring comfort to them as they go through this difficult time. We share in their sorrow as we learn how to live without Rich in our lives.

Marti Zavala
Celebration of Life and Memorial Service via telephone

In addition to the in-person services the family is holding (detailed on Rich's facebook page: https://www.facebook.com/rich.vankonynenburg), we will hold a Celebration of Life and Memorial Service via telephone conference call for our beloved Rich Van K, so that the ME/CFS and Lyme and MCS communities -- including those who are bedridden and homebound -- have a place to say goodbye, pay our respects, grieve together and heal from this huge loss we feel so very deeply. Rich's wife, Diana, will join us. It will not be scheduled until a few weeks from now. -- Rivka
The dynamic Rich helped pioneer, glutathione depletion and oxidative stress, is now the basis behind Biogen's newest billion-dollar drug: BG-12. He was trying to develop for treatment of our illness.

BG-12 is by far the most effective drug for MS to come out so far; and it actually works the way Rich said it would. The drug is based on one of the supplements Rich recommended in his protocol (dimethyl fumurate). There's an absolute straight line, no question.

I don't know how many of his ideas were actually poached by Biogen (the corporation started studying it in 2005; and he came out with demethylation protcol in 2004..hmm). But if it eventually becomes of use to CFS patients, he will have left us a big gift.
Anyway, a good man and great scientist is gone. Rest in peace, Rich.
Hi MishMash:

can you tell us which of rich's supps is the dimethyl fumurate? i can't find that name in his most recent protocol which was last updated on aug 25, 2012.

I've posted on another thread about the sadness of this news but just want to add that I heard from a friend who met him that despite all his knowledge he was the most courteous, gentle, self effacing and kindest of men.
Not having been around on PR for as long as others my contact with Rich had been minimal, and yet his death has affected me hugely. I always felt his kind, courteous and compasionate presence here on the forums - a solid defender and helper to many. Watching his presentation in Sweden, when it became available, made me see even more keenly what a fine and approachable man he was.
Good Morning to all,
I just now heard about Rich's passing. To his Wife and Family, we extend our deepest condolences. Rich was an exceptional human being: his kindness, his generosity, his brilliance, his integrity, and his compassion touched us so profoundly that I almost couldn't believe at times that such a person was within our reach--and he was. It became so that I began to rely on Rich, because I often didn't know where to turn watching my daughter suffer this horrible disease, which robbed her of a normal life. Rich responded every time I wrote to him. I clung unto him, and felt that there was a raft there, he was the raft, and that I could turn to someone who was not out for money but whose research and patience were directed to save lives. How kind he was to me. How very kind. I remember he once wrote a very lengthy analysis of my daughter's status, and I delivered it to the physician who replied: I agree with every word that Rich has written.

I wrote to Rich about a week ago again. And he did another big favour: he contacted a doctor and obtained the information that we required. Who would do this sort of thing without money?

Rich, thank you for everything you did. God Bless You. I will be lost without you to turn to for advice, as I have so often in the past. You exemplify what it means to work for the benefit of mankind. You are a role model for each of us. Rich, may the earth you will lie in be like the softest down. Everlasting Memory Rich.
Rich was a prince among men. His kindness was immeasurable , and his generosity was unstinting. He gave his considerable knowledge and attention freely to anyone who asked. Rich was a true scientist and a great humanitarian. I will never forget him.

Erica Verrillo
It is amazing how one person can touch so many lives, many of whom he had never met in person. I am so glad that I took the opportunity a few weeks ago to tell Rich that he was one of the heroes.
My deepest condolences to his wife and family. It feels like I have lost a friend, although I never personally met him. Every time I read his posts, it put me at ease. He made me always think this disease can be solved and most importantly: that somebody cared.

One day, we'll meet,
Dear Diana, I am so very sorry for you and your families loss. And for us here at Phoenix Rising.
Rich was so very kind and generous to us all.
Thank you to Rich.
A great man. Humble, extremely bright, good sense of humor. Compassionate and overly generous with his time. Just knowing he was out there helping those of us with CFS was a great comfort. He will be missed. So sorry for the families loss and the loss to all others who greatly admired him.