A Tribute To Rich Van Konynenburg

September 26, 2012

Rich Van Konynenburg’s generous support of the ME/CFS community will not be forgotten..

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…

93 comments

{ 93 comments… read them below or add one }

redo September 26, 2012 at 4:59 pm

My deepest condolences. We've lost a great man in many respects. Generous, bright and uniquely altruistic.

justinreilly September 26, 2012 at 5:17 pm

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.

HowToEscape? September 26, 2012 at 6:27 pm

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.

RIP

john66 September 26, 2012 at 7:03 pm

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

RivkaRivka September 26, 2012 at 8:01 pm

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.

Mitavec September 26, 2012 at 8:29 pm

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.

ggingues September 26, 2012 at 8:34 pm

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.

GG

martiz September 26, 2012 at 9:13 pm

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.

Heartbroken,
Marti Zavala

RivkaRivka September 26, 2012 at 10:16 pm

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

MishMash September 26, 2012 at 10:20 pm

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.

RivkaRivka September 26, 2012 at 11:43 pm

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.

rivka

Enid September 27, 2012 at 1:19 am

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.

justy September 27, 2012 at 3:02 am

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.
Justine.x

Helene September 27, 2012 at 4:51 am

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.

Erica September 27, 2012 at 5:31 am

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

LisaGoddard September 27, 2012 at 5:40 am

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.

Overstressed September 27, 2012 at 5:57 am

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,
OS.

Ritto September 27, 2012 at 7:28 am

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.

scott45242 September 27, 2012 at 7:56 am

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.

LaurelB September 27, 2012 at 8:29 am

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.

Arise September 27, 2012 at 8:41 am

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.

Sallysblooms September 27, 2012 at 10:26 am

He made a difference, a very big difference….Thank you Rich.

Uno September 27, 2012 at 10:27 am

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.

anniekim September 27, 2012 at 10:39 am

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.

Sallysblooms September 27, 2012 at 11:01 am

He told me he had a friend that had CFS. They later moved away..

Tammy September 27, 2012 at 11:28 am

Shine on Rich……..and thanks again for all your help.

Dreambirdie September 27, 2012 at 1:21 pm

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.

Tuha September 27, 2012 at 1:40 pm

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

anniekim September 27, 2012 at 1:56 pm


Sallysblooms

He told me he had a friend that had CFS. They later moved away..

Thanks for sharing that

Ocean September 27, 2012 at 2:05 pm

I was very shocked to hear about this loss. My sympathies to Rich's loved ones.

MDL September 27, 2012 at 2:14 pm

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.

ahimsa September 27, 2012 at 7:09 pm

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.

Sing September 27, 2012 at 7:13 pm

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

Sallysblooms September 27, 2012 at 7:44 pm

So true Sing. I hope everyone can be more like Rich. He was always a gentleman.

avreed September 27, 2012 at 7:55 pm

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

avreed September 27, 2012 at 7:57 pm

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

leela September 27, 2012 at 8:13 pm

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.​

justinreilly September 27, 2012 at 8:44 pm


RivkaRivka

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.

confetti11 September 27, 2012 at 10:57 pm

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.

taniaaust1 September 28, 2012 at 5:37 am

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.

taniaaust1 September 28, 2012 at 6:02 am

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.

Django September 28, 2012 at 8:58 am

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

Django September 28, 2012 at 9:00 am

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

Django September 28, 2012 at 9:06 am

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

ellenelle September 28, 2012 at 9:12 am

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

Jimk September 28, 2012 at 10:59 am

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.

Jimk September 28, 2012 at 10:59 am

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.

caledonia September 28, 2012 at 11:17 am

I really like Django's idea of a scholarship in Rich's name for up and coming ME/CFS researchers.

Sasha September 28, 2012 at 11:47 am

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.

bertiedog September 28, 2012 at 2:00 pm

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

Forebearance September 28, 2012 at 5:39 pm

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

minimus September 28, 2012 at 5:41 pm

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.

nanonug September 28, 2012 at 6:36 pm

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!

Little Bluestem September 29, 2012 at 12:12 am


taniaaust1

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.

August59 September 29, 2012 at 8:05 pm


MishMash

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!

helen41 September 29, 2012 at 9:17 pm

I am so sorry. He was an admirable man.

qofmiwok September 29, 2012 at 10:37 pm

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.

richvank September 29, 2012 at 10:55 pm

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

WNM September 30, 2012 at 3:34 am

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

Cort September 30, 2012 at 7:12 am

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

mfinch September 30, 2012 at 8:33 am

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.

Sparrow September 30, 2012 at 12:40 pm

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.

bel canto October 1, 2012 at 1:43 am

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.

Jenny October 1, 2012 at 4:24 am

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

wishing well October 1, 2012 at 11:39 am

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

LaurieL October 2, 2012 at 11:43 pm

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.

WillowJ October 4, 2012 at 12:14 am

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.

globalpilot October 4, 2012 at 12:24 am

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.

RivkaRivka October 8, 2012 at 11:37 pm

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

Astrid October 12, 2012 at 4:32 am

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

bushie October 12, 2012 at 12:52 pm

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.

roxie60 October 13, 2012 at 1:03 am

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.

roxie60 October 13, 2012 at 11:57 am

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.

RivkaRivka October 14, 2012 at 9:02 am

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

SJB944 October 16, 2012 at 7:20 pm

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.

RosieBee October 17, 2012 at 4:06 am

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.

Rand56 October 17, 2012 at 4:54 am

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.

TheLilyPad October 19, 2012 at 12:58 am

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

triffid113 October 20, 2012 at 9:13 pm

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….

lef07003 October 22, 2012 at 5:32 pm

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.

RivkaRivka October 22, 2012 at 9:25 pm

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

RivkaRivka October 22, 2012 at 9:27 pm


RivkaRivka

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

Sushi October 22, 2012 at 9:36 pm

RivkaRivka,

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

We really appreciate it!

Sushi

Freddd October 26, 2012 at 5:40 pm

I was saddened to hear this news. I have much appreciated his time and attention.

Mog October 27, 2012 at 1:24 pm

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…

Mya Symons October 31, 2012 at 1:07 pm

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.

drex13 November 5, 2012 at 3:45 pm

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.

icalla November 6, 2012 at 12:40 pm

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.

RivkaRivka November 14, 2012 at 12:09 pm

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

Tara December 3, 2012 at 9:38 am

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!

Lotus97 May 16, 2013 at 8:35 pm

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

bel canto May 17, 2013 at 1:10 am

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.

topghetto April 8, 2014 at 9:44 pm

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.

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