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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.​
Sergio​

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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Comments

Im feeling this news deep. Rich was a friend to us all, I dont think there could be any nicer person. The time he spent helping us while asking nothing in return. He truely was one of the good guys ... and someone who had so much wisdom. His passing is a huge loss to all.

Condolences to his wife and family. We wont be forgetting Rich.
 
Cort and others.

We've been talking about Rich's passing in the chat.. so many of us are very sad about it.

Wondering if we can dedicate the day of his passing each year as a special memorial day named after him.... to remember all those researchers who have put their hearts and time into trying to find a cure for us. I'd really like to see him and others who also devoted so much time to ME/CFS remembered in this way.
 
We first came into contact with Dr Rich a year ago when we were living in Thailand, our desperate escape from America to try to find an inexpensive place to live as we dealt with MCS. Thanks to his protocol and his wise words of advice and sage analysis we started to get better...and better.

4 months ago we were well enough to take another big leap and move back to the States. So far it's worked well and our health has improved again.

We wouldn't be here without Dr Rich.

Just another two people who owe their life and quality of life to Dr Rich,
Django & Dorothy
 
We first came into contact with Dr Rich a year ago when we were living in Thailand, our desperate escape from America to try to find an inexpensive place to live as we dealt with MCS. Thanks to his protocol and his wise words of advice and sage analysis we started to get better...and better.

4 months ago we were well enough to take another big leap and move back to the States. So far it's worked well and our health has improved again.

We wouldn't be here without Dr Rich.

Just another two people who owe their life and quality of life to Dr Rich,
Django & Dorothy
 
By the way, I think what made Rich so rare is that he was very smart, but he was also very humble and honest about what he didn't know. That allowed him to take in new information and synthesize new treatment approaches. I can think of two pretty big names in this area of research and treatment who became very stubborn, even in the face of more evidence, or they became "gurus" and seemed to become more money-focused as they set up their empire - neither describes Dr Rich who was the anti-thesis of that.

That's why I think one of the best things we could do is endow a scholarship in his name. One that is designed to support a young medical researcher who has a similar mix of humility, intelligence and caring that Dr Rich has.

Also, we need to continue the research that he started, we need to find other young, talented people who might be interested in entering this field of research and we need to support them as a community if we're to have any hope of finding better treatments for these terrible diseases. Maybe we can combine these two into one scholarship. I'm not sure where would be the best place to do it...but it could make a real difference and seems like a very appropriate way to honor Dr Rich's life.

Django
 
I was amazed and deeply touched by Rich's tireless dedication to our community.
His life will continue to inspire me to try to emulate his kindness and generosity.

Ellen
 
My deep condolences to Rich's family and loved ones. When I first read the title on my feed reader I thought that there was some well earned award he was being given. It didn't register until I read further that "tribute" was referring to his death. Even now I have trouble accepting that he is no longer here.
I've been around the ME/CFS community for a very long time and I have never seen anyone who has been as consistently helpful to others, even tempered in his own arguments and in listening to the arguments of others, and as devoted to following a rationally based path to solve some of our puzzle. How he kept track of all the questions, lists, forums, posts, and discussions, always wiling to respond to requests, has amazed me over the years. His persistence and dedication to the facts, and his willingness to change his mind and his theory as new facts presented themselves has been a model of truly scientific thinking, and his passion for the ideas never became an ego thing in any of the discussions I have been in with him over the years. I will miss his presence in our community very much, and will mourn his passing.
 
My deep condolences to Rich's family and loved ones. When I first read the title on my feed reader I thought that there was some well earned award he was being given. It didn't register until I read further that "tribute" was referring to his death. Even now I have trouble accepting that he is no longer here.
I've been around the ME/CFS community for a very long time and I have never seen anyone who has been as consistently helpful to others, even tempered in his own arguments and in listening to the arguments of others, and as devoted to following a rationally based path to solve some of our puzzle. How he kept track of all the questions, lists, forums, posts, and discussions, always wiling to respond to requests, has amazed me over the years. His persistence and dedication to the facts, and his willingness to change his mind and his theory as new facts presented themselves has been a model of truly scientific thinking, and his passion for the ideas never became an ego thing in any of the discussions I have been in with him over the years. I will miss his presence in our community very much, and will mourn his passing.
 
I really like Django's idea of a scholarship in Rich's name for up and coming ME/CFS researchers.
 
I'm deeply sorry to hear this. Rich was a lovely man - that came loud and clear through his posts on the forums here and on the videos of the talk he gave in Sweden. He was so generous with his time and his interest in our illness was a great help to so many. My sincere condolences to his family.
 
I have just read the news and I am so shocked. Rich was a lovely man, I had been in communication with him for many years and he was always so thoughtful and kind and open minded. As new information came to light Rich was always willing to adjust his opinions although of course he didn't ever get away from the role of glutathione and methylation in our illness.

I do hope that his family know how much we in the ME/CFS community all cared for Rich and how sad we are that we will no longer be able to hear his words of wisdom. I feel like I have lost a very caring friend.

Pam
 
Oh my. This is such a shock.
I first got to know Rich over on the ProHealth board. I remember when he posted about his simplified methylation protocol and asked if anyone wanted to try it.
I think I was one of the first couple dozen people to decide to be his guinea pigs and try the protocol.
I remember how patient he was with us -- how he explained things over and over again to people who were not biochemists and had brain fog and could sometimes be dense or grouchy. I remember how he listened carefully to our experiences and incorporated them into his theory.
It made a huge impact on me personally that someone with Rich's brainpower saw the plight of people with ME/CFS and wanted to help us. It wasn't his job to help us. He wasn't trying to save an immediate family member. Apparently he just cared and thought he could contribute something.
Gosh. I will miss him so much.
Forebearance
 
Rich was a good man who really was like a saint to the CFS community. We have lost a dear friend, an ally, and a great mind.

Rest in peace, Rich.
 
As many others have already said, the announcement of Rich Van Konynenburg‎ untimely death was a terrible shock. Many good things have already been said about Rich so I am not going to repeat them. However, there is one bad thing about Rich that needs to be said, and that it is that it sucks terribly that he no longer exists. You shall be missed, my friend!
 
Cort and others.

We've been talking about Rich's passing in the chat.. so many of us are very sad about it.

Wondering if we can dedicate the day of his passing each year as a special memorial day named after him.... to remember all those researchers who have put their hearts and time into trying to find a cure for us. I'd really like to see him and others who also devoted so much time to ME/CFS remembered in this way.
I like the idea of dedicating a day to Rich, but would prefer to memorialize his birth rather that his death.
 
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.
http://www.ncbi.nlm.nih.gov/pubmed/22267202

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.
I really wish Rich could be here to see this medication come to fruition. It would have made him enormously proud to know that his concept on demethylation (put simply) would virtually be made available to help sick people around the world.

And it may just be the first medication made available for CFS!

I can say that Rich was a friend of mine and I hope the day comes again that I might be able to walk beside my friend again! That will be a good day!
 
I am so sorry. He was an admirable man.
 
Words cannot express my sadness at this news. I have known Rich for many years, communicated with him often, and benefited greatly from his knowledge and kindness. Of all the people I have personally known in my life, I admire Rich the most. His nickname around the house is "genius", but he was so much more than that. He helped so many people that he didn't have to help. At a time when our health care system is controlled by greed, he worked selflessly for others. I will remember Rich forever and will miss him.
 
Thanks to all for the remembrances of Rich and for the kind words of love and support. They are of tremendous comfort to me and to our family.

Diana Van Konynenburg
 
I am shocked and saddened by this news. Like many others I corresponded with Rich extensively on the net, however unfortunately I never got to meet him in person. I have had CFS a long time and encountered many people in the field. Rich stood out for me as someone who was incredibly kind, generous and modest. I think these qualities contributed greatly to his brilliant scientific mind, where he was open-minded and holistic in his approach to reconciliation of the many heterogeneous components of CFS.

In particular Rich greatly inspired me a few years back when I was lost after years of mainstream medical treatment. His kindness and scientific approach gave me my clarity of mind back and as such my belief and trust in myself. Similarly to Sergio I too am now studying medicine, and I hope to be able to contribute more in the future to the scientific understanding of this condition and other misunderstood chronic illnesses. In fact I had my first paper published last year, and much of this was a result of the self empowerment inspired by Rich.

All my greatest sympathies to Rich's friends and family. Please take some peace from the fact that Rich has inspired many and his legacy lives on. It is certainly immortalised in my mind and will continue to inspire me.

All the best,
WillM