• Phoenix Rising needs funds to operate: please consider donating to support PR

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...

View the Post on the Blog
 

Comments

I was so very saddened to hear this news. Rich was such a great, kind man. I was always amazed at how much time and passion he devoted not just to understanding and researching this disease, but in connecting with patients individually to help as many as he could. A tragic loss. My deepest sympathies to his friends and family.
 
Even having joined this forum recently I was shocked and saddened by Richard's death, my deepest condolences to his wife and family.

I enjoyed his talk on CFS/ME in Sweden that he sent me a link to, he seemed a very generous, humble and genuinely kind person.

I hope that someone can keep developing upon the work he has done for ME/CFS, so that it will benefit this and other communities as well.
 
He made a difference, a very big difference....Thank you Rich.
 
I cried yesterday and I am crying now. Rich I owe you everything. When I first got sick a doctor in Manchester send me a paper on the Methylation Cycle but I was too scared to try it. I joined this forum and after speaking to a lot of people, including yourself, I trod the waters and slowly began to get a bit better. I am able to walk a few paces, I managed to get to New York, all because of you. I can wash myself on my own and it's all because of you.

I approached Rich last year and said that my charity, Neuroimmune Alliance, wanted to undertake trials on the protocol in the UK. Rich was happy to help with my applications for funding and was coming over at the first Neuroimmune Alliance event in the summer of 2013. I was due to speak to him next week but that conversation is now lost in time.

Why God chose to take Rich I cannot say but his work shall not be in vain , I shall make sure no-one forgets it in the UK.

RIP Rich - I shall miss you more than words can say.
 
As I wrote on another thread here on PR, Rich was a remarkable man with the rare combined qualities of keen intellect, kindness, generosity and deep humility. I know he will be greatly missed by so so many and my heart goes out to his family.

I hope it's ok to ask what prompted Rich to take an interest in M.E? - for which I am of course forever grateful.
 
He told me he had a friend that had CFS. They later moved away..
 
Shine on Rich........and thanks again for all your help.
 
Rich was a truly exceptional human being. He was a generous spirit, so patient and compassionate with all of us in the online CFS community. He never turned down a question, and was always willing to take the time to help. I am grateful to have known him, and will miss him a lot, as will so many others whose lives he has touched.

My condolences go out to his family and all his close friends. RIP Rich. We love you.
 
A death of someone is always sad but now my heart is crying.
Rich, your effort to try to help the people with our disease was very appreciated in all over the world
RIP Rich - greeting and sending many thanks from east Europe
 
I was very shocked to hear about this loss. My sympathies to Rich's loved ones.
 
Rich lived his life with passion and a deep sense of purpose; he leaves behind a rich legacy. He was a deeply compassionate and generous soul who never tired of reaching out and trying to help others. Everyone was invited to stand under his umbrella. He will be greatly missed, and his work will live on.
 
Thank you for passing on this very sad news. I never met Rich but I will miss his thoughtful contributions to the Phoenix Rising forum.

What a terrible time his wife must be going through right now. My thoughts are with her and with all the rest of Rich's family and friends.
 
Rich set us a great example of how to help each other, supporting, respecting, and differing--when he often did--in a clear, un-egotistical way. I feel he exemplified how to draw distinctions in different views, without belittling or putting down others. He always stayed clear of negativity, without staying clear of either people or the essentials of any issue. I hope we take his example of generosity, kindness, honesty and responsibility, because those ethical qualities are key to our working successfully together and finding the answers that work.

Rich gave us a lot of science education over the years, along with a new approach to treatment which many have found helpful. He pulled up our self esteem with his respectful treatment and encouraged us to think more like scientists. He also left the field of medical understanding of ME/CFS in a better place than he found it. For anyone reading this who has not seen Rich in action, I would highly recommend the videos of his talk in Sweden. There are links to the videos on the bottom of this column:
http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-conference-rich-van.html
 
So true Sing. I hope everyone can be more like Rich. He was always a gentleman.
 
What a sudden and terrible shock. Rich was a passionate medical detective who never tired of deconstructing the web of biochemical mystery. He was a man with great heart and even greater compassion for all those who suffered with the devastation of CFIDS. I have kept a large file of all our emails which I still refer to frequently and also use to educate the less informed doctors in my community. Rich will be very much missed across the many forums he contributed to and will be remembered for his acuity and dedication to all. Many condolences to his family in their time of loss.
With love and sadness,
Alison
 
What a sudden and terrible shock. Rich was a passionate medical detective who never tired of deconstructing the web of biochemical mystery. He was a man with great heart and even greater compassion for all those who suffered with the devastation of CFIDS. I have kept a large file of all our emails which I still refer to frequently and also use to educate the less informed doctors in my community. Rich will be very much missed across the many forums he contributed to and will be remembered for his acuity and dedication to all. Many condolences to his family in their time of loss.
With love and sadness,
Alison
 
I posted this on another thread, but thought maybe it belonged better on the Tribute thread:

In Loving Memory of Rich
Where once a man stood up for us
extended hand and mind in trust​
with ne'er a blighted word to speak​
and led by heart did wisdom seek;​
he longed to dredge the mystery from hiding.​
Where long his shadow once did fall​
we sense now just his clarion call​
and what is left behind remains​
indelible--uncounted gains;​
his noble heart in memory residing.​
His counsel many souls did seek​
those ill and desperate, pale and weak​
And how his gen'rous steady hand​
with forthright calm and kindness grand​
outstretched in patient constancy there guiding.​
We cannot say what would have come​
but shall recall what he has done​
with everlasting heartfelt love​
as he looks on us from above​
with wisdom ever potently abiding.​
 
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
Thank you for this, Rivka.
 
I heard about Rich's death during a call made to a fellow CFS sufferer on one of my bad days. It wasn't a bad day because of physical suffering but because of another healthy-bodied friend and confidant who turned on me, inferring this illness must be psychologically-based. How ironic that our community lost one of its biggest non-CFS-suffering supporters on that same day. This grieves me...for Rich's family, for his close friends and for a community that is consistently degraded and invalidated. As well as tirelessly trying to help us get better, Rich validated us...and there are so few who are willing to stand up and do that. He will be sorely missed. Much sympathy to those who were close to him.