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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

This was sent from Virginia

I am one of the people that you and Rich helped when I was bedridden in Mexico with CFS.

Please extend my gratefulness, again, to his widow. I was alone, frightened, and very uninformed. He took the time to write and his information was instrumental in my return to the states. I really never expected the level of care he showed someone obviously with so little expertise.

Virginia Carmichael
 
Five years ago my health was in free fall following pesticide poisoning. At that point Rich's protocol made the difference between life and death for me and it has formed the basis of progressive improvements ever since. We only corresponded briefly but his generous, caring and unassuming nature and his exceptional insight made a huge impression on me. He is a great loss to us all.

With heartfelt sympathy to his family.
 
I had no idea. I'm so, so, so deeply sorry to hear this. I think I'm a bit in shock.

He was so generous here, always willing to help, or to lend his expertise to a question. I was always really touched that he took the time to give his advice to me.

He will be missed. I'm very grateful for the time, effort, and energy he's put towards helping this illness for so many years.
 
Rich was an extraordinary man - brilliant, kind, and generous. I am so grateful for having had the chance to know him.

Diana, my most heartfelt sympathy for your loss.
 
I am profoundly shocked and sad to hear this terrible news. My deepest sympathies go to his family.

Rich seemed always to be there for us - I was constantly in awe of his compassion and dedication to our community.

A few months ago, out of the blue I got an email from him offering to look in depth at my case as I hadn't benefited from his protocol. He spent what must have been days explaining all my test results and analysing my symptoms, giving me links to published work and summarising research on immune dysfunction that seemed relevant to my problems. We had never met but he seemed to care deeply.

His generosity and kindness with remain with me always. I feel I have lost a dear friend.



Jenny
 
I would like to express my condolences. I had not been in contact with Rich, but have read many of his very helpful posts. It is so kind of people to help strangers, with their knowledge and time.

Rest in peace. x
 
I have been through quite a lot in the last few years. I never got the chance to tell him how profoundly his patience and time have affected me and my health status. He started a freight train of good things that eclipses anything I have previously been through. My gratitude and RIP.
 
you will be missed, Rich. a good man, and generous. with important ideas. I've always appreciated having you in our corner.

condolences to your family, friends, and associates.
 
Diana, I'm so sorry for your loss of Rich.
I was so shocked and saddened by this news I have not been able to respond until now.
Anything I write cannot convey how much he has meant over the years.
He never gave up on us and I know he never would have. I thoroughly enjoyed my interactions him and reading his posts. He had a brilliant mind and kindness I have never seen before.
Like Jenny said above, i also feel like I have lost a dear friend.
 
Rich's wife asked me to post this here. I'm so grateful to whoever organized this effort and contributed to it. Thank you! -- Rivka
_______

Today I returned home to find an incredibly beautiful lemon tree on our front porch, and it was planted in a large, quite beautiful pot.

The accompanying card indicated that it was from all of you at Pheonix Rising. I'd like to thank you, and all of the others at Pheonix Rising for the tree and for all of your kind words. They have meant so much in this nearly unbearable time.

Warmest possible regards,

Diana Van Konynenburg
 
This is very sad. I had not been in contact with Rich, but I'm still reading his many very helpful posts.This is a great lost for the ME/CFS community.


Astrid
 
I, too, am devastated by Rich's passing and my heart aches deeply. The odd thing is, I had only known Rich(through emails) for about 6 months, yet he had a profound effect on me. It's true that a good part of that was because of his expertise in this area, but, equally affecting was his incredible kindness and humanity. I was constantly amazed at the effort he put into my case, and when offered to be paid he said he would do it for free. Who does that? Only a remarkable human being. I know now that many others had a similar experience, though Rich gave you the feeling that he was focused only on you. I enjoyed our exchanges well beyond the information that he gave me. I felt a warmness from him that transcended the cold computer screen text. I found myself longing to meet him someday, and deeply sad now that I will never be able to do that. I know I am going on about this, but it is because I find it difficult to put into words the tremendous loss I feel, and the whole PWC community feels, from his absence in the world. My deepest condolences go out to his family.
 
I am stunned. I have not been to PR for awhile due to back at work and no energy but again not sleeping so thought I would stop by and catch up. I am so sad right now. My sympathies to Rich's family. What a kind and generous soul, giving of his knowledge and time to help desperate strangers try to make sense of what they are living with, helping to by educating and offering a strategy, encouragement and hope. This is a maddening illness and Rich could bring calm to a worried mind, he was able to take complex topics and make them understandable. He embodied the type of person, for those fighting this illness and all its maddening symptoms, need to have in their lives. What an enormous loss on so many levels. May his contributions to trying to find answers for those with CFIDS/ME/CFS/FM continue to produce fruit and hope in the community. Wow, what a hole in the fabric of life now that Rich has passed. Diana please know Rich was a blessing that words cannot convey. I have dealt with so many health issues for so many years I had just about given up. Drs had done more harm over the years but Rich in the short time I knew him gave me renewed hope. Rich educated me and helped me understand what I am dealing with which gave me hope and motivation to keep trying. Priceless, generous man. What a sense of loss I feel right now...I can only imagine how his family feels. I hope they realize how much the CFS/ME community appreciates Rich and hold him in the highest esteem.
 
Rivka, has the memorial already occured? I could find no info and when I goto his facebook page I cant see anything, I think I have to have already been friended on fb to see any postings on his wall from Diana.
 
hi roxie60

what a beautiful post you wrote.

the "in person" memorials have happened, all in CA. but we are planning a telephone conference call memorial for all in the me/cfs/lyme/mcs communities to attend. we are right now working on that. it will be a sunday, sometime in the next 2-4 wks.

best,
rivka
 
I like many others, am gutted by Rich's untimely passing. I only knew him through his willingness to reply to my emails, and his irreplaceable knowledgeable imparted on this forum. It's funny, how even though you can have contact only through emails, you are left with the distinct impression of a gentleman.

He leaves such a gaping void.
 
I posted elsewhere and wanted to add my condolences to this tribute. Rich was such a warm, generous and well-respected man. He will be very much missed not only for his dedicated intellectual contribution but also for his kindness and understanding. Rich was kind enough to help me on a couple of occasions. People with this disorder are rarely treated with the compassion that he showed us. Rich will be very deeply missed. My thoughts go out to Diana and your family.
 
So sad to hear about Rich. A lot of you have been on this site longer than me and no doubt you got to know him better than me. It didn't take me long though to notice that he was very gracious with his time to try and help people. My condolences to his family.
 
I just happened to sit next to Rich during an IACFS conference (I can't recall now if it was Madison in 2004 or Ft. Lauderdale in 2007). Before the scientific session began we intorduced ourselves and chatted briefly. He told me of his new Glutathione depletion theory with great enthusiasm. I found his ideas very interesting and him very charming and obviously very smart. (As a former biochemist I was familiar with methylation cycles, etc. but as a person with cfs, at that point I was no longer able to concentrate on complicated chemical pathways and the like, so his theories were way over my CFS-fogged head!) Throughout the conference I saw him drawing cycles and discussing glutathione with everyone - the holy grail of CFS, so to speak.

I saw his lenghty and helpful posts here occasionally over the years and thought back to our brief meeting. Just a few weeks ago I watched the online presentation he gave in Sweden and thought of him again.

After 20 years disabled with CFS, last year I was diagnosed with Lyme Disease, Babesia and Bartonella. My LLMD recently precsribed for me glutathione injections, which reminded me once again of Rich and our brief meeting years ago. ( The glutathione has been amazingly helpful, and I can't help wondering why didn't the CFS community get on board with Rich's theory 5 or 10 years ago? We might all be feeling better by now! Unfortunately the mainstream medical community still doesn't have a clue about glutathione - my PCP claimed last week he had no idea what it was!)

Some people come into your life just once, but leave a lasting impression. Rich Van K. was one of those exceptional people. He obviously touched many lives, including mine. I'm very sorry he is gone.

(And, if you're diagnosed with CFS/ME, or Fibromyalgia, make sure to ABSOLUTELY rule out Lyme and co-infections by someone that knows! Tick-borne illnesses my be at the root of CFS, MS, ALS, Parkinson's, Alzheimer's and Autism. Get the facts and you may get your life back.)

Julie Engle in MN
 
Wow! Rich was so active and involved in helping people it seems impossible that such a lively person could have just passed on like that. What a shock it must have been to his family. What a great loss....