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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

I know this is late. I wrote directly to Rich's wife early on as she responded to an email I sent to Rich with the terrible news. I have been browsing these boards for quite some time from a distance and decided to reach out to Rich directly via email because I was so interested in his research and protocol. I was always impressed on his involvement on the boards and his determination to help people.I was completely blown away by Rich's swift response. I wrote an email sort of figuring I would never hear back as I was sure he was receiving thousands of emails all the time. He was so kind and sent me all his material to share with my doctor and to pursue the pathway panel testing. I wrote to ask him a question about the protocol a couple of weeks when I got the awful news. I was so shocked, my heart fell into my chest. I have vowed that as a tribute I would pursue the pathway test as well as try Rich's protocol and will share my progress with others. I want to help with his research and I figured that was a way I could contribute. I I truly hope Rich's hard work will be carried on and studied and published one day! Thank you Rich for everything. You touched many many lives.
 
Please forward widely



All are invited to the

ME/CFS, Lyme and MCS community's

Memorial Service

for

Rich Van Konynenburg

on

November 18, 2012



== What When Where ==



WHAT: Memorial Service for Rich Van Konynenburg, researcher and leader in the ME/CFS, Lyme and MCS communities.

WHEN: Sunday, November 18, 2012. At 2 pm EST USA; 11 am PST USA; 7 pm London/GMT. We'll end the memorial after everyone who wants to share has had a chance.

WHO: Especially welcome are those from the ME/CFS, Lyme and MCS communities. However, this is also open to anyone anywhere who wants to join us in remembering and honoring Rich.

WHERE: This memorial service will be held as a telephone conference call. Call in using a landline telephone, mobile phone or computer phone. So even if you are bedridden in California, the UK, Australia or anywhere, you should be able to join us if you can use a phone to call the USA.

HOW: The conference call dial-in phone number is: 805-399-1000. When prompted, key in the Participant Access Code: 997436#. The call will cost the normal fees associated with a long distance phone call to the USA, and no more.

INTERNATIONAL CALLERS: Consider using an international calling card. Or if you have Skype, go to your Skype account and click on "Call phones" and it will allow you to pay for the call. If you do not have Skype, you can download a free account at Skype.com. There, read how to buy Skype credit for making outgoing calls (that you would pay for). Or read how to buy Skype "Pay As You Go" minutes. Do all this prior to the day of the memorial service. After you select one of these options, on the day of the memorial service you will dial in to the conference call by using the same phone number (805-399-1000) and the same Participant Access Code (997436#) as listed above. NOTE: Calling from your mobile phone to join the USA conference call may be much more expensive for international Skype users than calling from a landline phone. Plan accordingly.

PLEASE SHARE: On the call, you will have an opportunity to "raise your hand" to indicate you wish to speak. Please keep your sharing to under two minutes, so all who wish to share can do so.

RSVP: There is no need to tell us you are attending, just come!

QUESTIONS: Contact Rivka(at)ThatTakesOvaries(dot)org



== Details ==



On Sunday, November 18, 2012, please join members of the ME/CFS, Lyme and MCS communities in saying "Thank you; We love you; Goodbye," to our beloved community leader, Rich Van Konynenburg.



We will be joined by Rich's wife, Diana; Dr. Neil Nathan, who worked with Rich on his Simplified Methylation Protocol; and Dr. Derek Enlander, who has known Rich for over a decade -- as have many of us.



Together, as a community, we will gather to grieve, mourn and begin to heal from this deeply felt loss. And the loss is substantial. Rich was a well-known community leader, a man who posted thousands of health and research related messages on the various ME/CFS, Lyme and MCS forums and listservs -- all about trying to help us, to alleviate our suffering, to make our lives better.



Rich was the most accessible researcher we ever had, unfailingly answering our thousands of questions and concerns, not just because this was an intriguing scientific puzzle but because he cared about us. His wife Diana recently described how his large office overflows with papers, spilling out into the next room. Many of those stacks of papers are our test results that he tirelessly analyzed for us, without asking for anything in return, just so he could help us understand complicated situations and decide complex next steps in recovering our health. Diana describes how Rich would come to the dinner table at night and talk about his research discoveries and understandings, and how he'd be so happy when he could make our lives a bit better -- and how he'd be deeply sad when he witnessed our suffering. He would weep when we wept, he would rejoice when he could help us. And there are many people he did help, both through his scientific analysis and his compassion.



Join us at this memorial service to tell us what Rich meant to you. Share your memories and personal stories of Rich, and read excerpts from emails/posts he sent you. This small act of sharing will help all of us grieve our loss and allow the healing to begin.



For questions, please email: Rivka(at)ThatTakesOvaries(dot)org
 
Please forward widely



All are invited to the

ME/CFS, Lyme and MCS community's

Memorial Service

for

Rich Van Konynenburg

on

November 18, 2012



== What When Where ==



WHAT: Memorial Service for Rich Van Konynenburg, researcher and leader in the ME/CFS, Lyme and MCS communities.

WHEN: Sunday, November 18, 2012. At 2 pm EST USA; 11 am PST USA; 7 pm London/GMT. We'll end the memorial after everyone who wants to share has had a chance.

WHO: Especially welcome are those from the ME/CFS, Lyme and MCS communities. However, this is also open to anyone anywhere who wants to join us in remembering and honoring Rich.

WHERE: This memorial service will be held as a telephone conference call. Call in using a landline telephone, mobile phone or computer phone. So even if you are bedridden in California, the UK, Australia or anywhere, you should be able to join us if you can use a phone to call the USA.

HOW: The conference call dial-in phone number is: 805-399-1000. When prompted, key in the Participant Access Code: 997436#. The call will cost the normal fees associated with a long distance phone call to the USA, and no more.

INTERNATIONAL CALLERS: Consider using an international calling card. Or if you have Skype, go to your Skype account and click on "Call phones" and it will allow you to pay for the call. If you do not have Skype, you can download a free account at Skype.com. There, read how to buy Skype credit for making outgoing calls (that you would pay for). Or read how to buy Skype "Pay As You Go" minutes. Do all this prior to the day of the memorial service. After you select one of these options, on the day of the memorial service you will dial in to the conference call by using the same phone number (805-399-1000) and the same Participant Access Code (997436#) as listed above. NOTE: Calling from your mobile phone to join the USA conference call may be much more expensive for international Skype users than calling from a landline phone. Plan accordingly.

PLEASE SHARE: On the call, you will have an opportunity to "raise your hand" to indicate you wish to speak. Please keep your sharing to under two minutes, so all who wish to share can do so.

RSVP: There is no need to tell us you are attending, just come!

QUESTIONS: Contact Rivka(at)ThatTakesOvaries(dot)org



== Details ==



On Sunday, November 18, 2012, please join members of the ME/CFS, Lyme and MCS communities in saying "Thank you; We love you; Goodbye," to our beloved community leader, Rich Van Konynenburg.



We will be joined by Rich's wife, Diana; Dr. Neil Nathan, who worked with Rich on his Simplified Methylation Protocol; and Dr. Derek Enlander, who has known Rich for over a decade -- as have many of us.



Together, as a community, we will gather to grieve, mourn and begin to heal from this deeply felt loss. And the loss is substantial. Rich was a well-known community leader, a man who posted thousands of health and research related messages on the various ME/CFS, Lyme and MCS forums and listservs -- all about trying to help us, to alleviate our suffering, to make our lives better.



Rich was the most accessible researcher we ever had, unfailingly answering our thousands of questions and concerns, not just because this was an intriguing scientific puzzle but because he cared about us. His wife Diana recently described how his large office overflows with papers, spilling out into the next room. Many of those stacks of papers are our test results that he tirelessly analyzed for us, without asking for anything in return, just so he could help us understand complicated situations and decide complex next steps in recovering our health. Diana describes how Rich would come to the dinner table at night and talk about his research discoveries and understandings, and how he'd be so happy when he could make our lives a bit better -- and how he'd be deeply sad when he witnessed our suffering. He would weep when we wept, he would rejoice when he could help us. And there are many people he did help, both through his scientific analysis and his compassion.



Join us at this memorial service to tell us what Rich meant to you. Share your memories and personal stories of Rich, and read excerpts from emails/posts he sent you. This small act of sharing will help all of us grieve our loss and allow the healing to begin.



For questions, please email: Rivka(at)ThatTakesOvaries(dot)org
sorry that the above announcement did not hold its original format. -- rivka
 
RivkaRivka,

Thanks so much for organizing this. I know it is a complicated thing to get off the ground.

We really appreciate it!

Sushi
 
I was saddened to hear this news. I have much appreciated his time and attention.
 
I've just heard. I'm so very, very sorry. He helpfully replied to some of my queries on the forum, when I wasn't expecting him to, and as someone above said, he was such a helpful and comforting presence on the forums. His information did give you hope that something could be done, that a way could be found through this hideous maze of problems. And he was so generous with his time and knowledge. What a terrible loss...
 
Oh no. I just found out. My deepest condolences to his family also. I am so sorry for your loss. Rich was always so willing to be helpful to us. It was so different from the way we are usually treated by anyone who should be knowledgeable about what is going on with us. I am sad he is gone.
 
I haven't been on the PR site for a few months now, and was absolutely stunned when I logged on today, to see that Rich had passed away. I have exchanged emails and information with Rich a few times over the last couple of years. Rich was always gracious and went out of his way to help those of us who sought him out. My deepest condolences to the Van Konyenburg family. Rich will be sorely missed by all.
 
I am yet another person who was touched by Rich - what a tremendous loss to the community. He was a great man, personally and professionally. I give thanks for his work daily, and wish his family and those who loved him peace and strength.
 
Please forward widely
All are invited to the
ME/CFS, Lyme and MCS community’s
Memorial Service
for
Rich Van Konynenburg
on
November 18, 2012

== What When Where ==

WHAT: Memorial Service for Rich Van Konynenburg, researcher and leader in the ME/CFS, Lyme and MCS communities.

WHEN: Sunday, November 18, 2012. At 2 pm EST USA; 11 am PST USA; 7 pm London/GMT. We’ll end the memorial after everyone who wants to share has had a chance.

WHO: Especially welcome are those from the ME/CFS, Lyme and MCS communities. However, this is also open to anyone anywhere who wants to join us in remembering and honoring Rich.

WHERE: This memorial service will be held as a telephone conference call. Call in using a landline telephone, mobile phone or computer phone. So even if you are bedridden in California, the UK, Australia or anywhere, you should be able to join us if you can use a phone to call the USA.

HOW: The conference call dial-in phone number is: 805-399-1000. When prompted, key in the Participant Access Code: 997436#. The call will cost the normal fees associated with a long distance phone call to the USA, and no more.

INTERNATIONAL CALLERS: Consider using an international calling card. Or if you have Skype, go to your Skype account and click on "Call phones" and it will allow you to pay for the call. If you do not have Skype, you can download a free account at Skype.com. There, read how to buy Skype credit for making outgoing calls (that you would pay for). Or read how to buy Skype "Pay As You Go" minutes. Do all this prior to the day of the memorial service. After you select one of these options, on the day of the memorial service you will dial in to the conference call by using the same phone number (805-399-1000) and the same Participant Access Code (997436#) as listed above. NOTE: Calling from your mobile phone to join the USA conference call may be much more expensive for international Skype users than calling from a landline phone. Plan accordingly.

PLEASE SHARE: On the call, you will have an opportunity to "raise your hand" to indicate you wish to speak. Please keep your sharing to under two minutes, so all who wish to share can do so.

RSVP: There is no need to tell us you are attending, just come!

QUESTIONS: Contact Rivka(at)ThatTakesOvaries(dot)org

== Details ==

On Sunday, November 18, 2012, please join members of the ME/CFS, Lyme and MCS communities in saying "Thank you; We love you; Goodbye," to our beloved community leader, Rich Van Konynenburg.

We will be joined by Rich’s wife, Diana; Dr. Neil Nathan, who worked with Rich on his Simplified Methylation Protocol; and Dr. Derek Enlander, who has known Rich for over a decade — as have many of us.

Together, as a community, we will gather to grieve, mourn and begin to heal from this deeply felt loss. And the loss is substantial. Rich was a well-known community leader, a man who posted thousands of health and research related messages on the various ME/CFS, Lyme and MCS forums and listservs — all about trying to help us, to alleviate our suffering, to make our lives better.

Rich was the most accessible researcher we ever had, unfailingly answering our thousands of questions and concerns, not just because this was an intriguing scientific puzzle but because he cared about us. His wife Diana recently described how his large office overflows with papers, spilling out into the next room. Many of those stacks of papers are our test results that he tirelessly analyzed for us, without asking for anything in return, just so he could help us understand complicated situations and decide complex next steps in recovering our health. Diana describes how Rich would come to the dinner table at night and talk about his research discoveries and understandings, and how he’d be so happy when he could make our lives a bit better — and how he’d be deeply sad when he witnessed our suffering. He would weep when we wept, he would rejoice when he could help us. And there are many people he did help, both through his scientific analysis and his compassion.

Join us at this memorial service to tell us what Rich meant to you. Share your memories and personal stories of Rich, and read excerpts from emails/posts he sent you. This small act of sharing will help all of us grieve our loss and allow the healing to begin.

For questions, please email: Rivka(at)ThatTakesOvaries(dot)org
 
My sincere sympathy go out to Rich's family and friends, along with my own heartfelt sadness to hear of Rich's passing. As many of us in this community have felt, Rich was an incredibly generous and caring soul, and I have him to personally thank for suggesting I give the Cutler protocol a go this past July. I started chelation in August, and I am finally hopeful in the healing and recovery I am experiencing. I owe Rich more than these words can express. I am so incredibly grateful. Rich's work in this world has been a success; he has done his duty with a willing heart, and I pray he is now in peace and at rest, basking in the fruits of his labor. Thank you, Rich!
 
I think I must have joined Phoenix Rising right after Rich's passing, but since then I've read literally hundreds of his posts so I feel almost as if I knew him. I stumbled across one of Rich's more recent posts (mid 2012) where he outlines his current assessment and outlook on CFS/ME. I found it fascinating and thought some other people would like to read it too:
Hi, Angela.

I appreciate the high opinion you have expressed about my abilities. I have to be honest with you, though, and admit that there is a whole lot that I don't know about many of the topics that are discussed on these forums. One area that I don't know a lot about is the details of translating the genomic polymorphisms, and interpreting what all of them mean. While it's true that I had something to do with getting your doc interested in these things, I think she is way ahead of me now in her understanding of how to apply them, and I think you are very fortunate to be seeing her. I do think that there is a lot of potential in studying the genomics, and I'm glad that others here are doing so, too.

I also want to say that I gain a great deal by participating in these forums and the other ME/CFS internet groups as well. A lot of what I have been able to learn has come from people here and in the other groups over the years. Some of it has come from papers or articles people have posted, or from their own thoughts, and some has come from studying in an effort to answer questions raised by people.

I realize that not everyone in these forums and groups has a scientific or biomedical background, but personal experience of people who actually have the disorder is also very helpful to me, in keeping my research relevant to the real world of those who have ME/CFS. After all, it's considered a syndrome, which is composed of symptoms, and who has the symptoms? I don't, and many of the clinicians and other researchers don't, either. I prefer to get information about them first-hand.

Like everyone else, one of my big limits is time. I would like to get a grasp on all the relevant topics, but I have to choose my battles and try to be strategic, continuing to focus on the goal of completely cracking ME/CFS. At this point, in my own mind at least (and I know that there are many in the ME/CFS community who might not agree) I believe that I understand the core of the pathophysiology of ME/CFS. The main parts that I think I don't have a good grip on are the etiologies, i.e. the root causes, and also the things that accumulate because of dysfunction of the immune and detox systems after the onset of the illness, and how these parts fit together with the part I think I understand. These are the areas I think I most need to focus on now, so I'm planning to try to get more up to speed on the immune system and the infectious diseases we see in PWMEs, as well as the toxins and detox system.

The work with GcMAF is very promising. The Rituximab results are intriguing. There is more detailed analysis of cytokines now. There is better testing for Lyme disease. The gut microbiome research has become active. The work on biotoxins has become pretty detailed and advanced. I would like to be able to pull all of this together. I think that understanding these sorts of topics is what we need to bring more people to complete recovery, which we are still not able to do today.

Thanks again for your confidence in me!

Best regards,

Rich
 
What a great loss for all of us - not only of a wonderful friend, but someone who devoted so much of his time and energy and prodigious intellect to our quest for understanding and treating this disease. His humanity and compassion were unmatched by anyone I've ever personally known.

Thank you, Lotus, for posting this.

I can hear his voice, see his smile, and miss him so very much. Thank you, Rich.
 
It is unfortunate that this world has lost a very, very great human being. I believe I owe him so much. I just wish that I could of met him so I could thank him from the bottom of my heart. No doubt, that he will always be in my prayers. Rest in peace, Dr. Rich Van Konynenburg.