• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

In Memory of Rich Van Konynenburg.

Quilp

Senior Member
Messages
252
Dear group members.

This post is from Rich's wife. 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!).

I am trying to figure out how to begin notifying everyone who will want to know. Please feel free to repost this message on any forum or group where people who interacted with Rich will want to know of his passing.

Diana Van Konynenburg

A few weeks ago I needed some help. Not for the first time Rich was there to offer his considerable knowledge.
I sent Rich a message apologising for the fact that I couldn't offer him anything in return for the help he has given me over the last year.
He sent me this reply :-

You're welcome, Mark. What you've given me is another data point! One of the main ways I learn about ME/CFS, as well as making sure that my hypotheses are on track with reality, is by interacting with you guys. So, thank you!

Rich

Despite being the recipient of his help, he went out of his way to thank me. That was Rich, so warm and generous.

Life is full of regrets. After having received that last message I resolved to give Rich a mention on the boards because it was the only way I could thank him.

I decided against it because I felt that a public show of appreciation might embarrass him. How I regret not making that call. Please forgive me, because I will never forgive myself.

Love to you Diana xxx
 

LaurelW

Senior Member
Messages
643
Location
Utah
Dear Diana,
I am shocked and incredibly sad at the loss of a really incredible man. He was caring, smart, knowledgeable, compassionate....he will be deeply missed. My heart goes out to you.
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
This is so hard to take in. It is because of Rich that my health has improved
so much since following his protocol. I found out last year that I have Lyme
and it was exciting news when Rich posted that he had started working with the
Lyme community and some ILADS dr's as to how methylation plays a role in why
people with long term or chronic lyme were not improving. He was to present his
findings at the next ILADS conference in a few months.
It is an understatement to say he will be missed....not just by his family but
by the CFS/LYME community. He can not be replaced. He was so generous with his
help and knowledge. He didn't just put the information out there for us but was
our mother hen, our guardian angel....answering endless questions over and over
and keeping us on track.
I feel like an orphan
 

Chris

Senior Member
Messages
845
Location
Victoria, BC
Diana, all our sympathy in your grief. I too had some email contact with Rich when I started his protocol some years ago--he was patient, careful, helpful, as he always was with us. He was very much appreciated here, and will be sorely missed by this whole community--a very bright light in a part of the world in which there are not enough like him.
Chris
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I'm terribly sorry for your loss.

There are very few people who are truly irreplaceable but I'm sure that Rich fell into that category.

I will never forget his kindness and generosity.
 

SpecialK82

Ohio, USA
Messages
993
Location
Ohio, USA
I am shocked and saddened by this news, he was truly a hero for many here. Such a selfless and kind human being; what a terrible loss for all that knew him.

Prayers going out for Diana and his family, so sorry for your suffering, we are with you in spirit.
 

natasa778

Senior Member
Messages
1,774
Diana I am so sorry for your loss. It is so shocking and so very sad. I have known Rich through this and several other patient and parents forums for many years. He will be missed for his depth of knowledge and insights and also for his kindness, generosity and endless patience.
 

akrasia

Senior Member
Messages
215
Hi Diana,

I remember when Rich first began to participate in this community on the list cfsfmexperimental. His contributions were always intelligent and kind, grounded in a compassionate curiosity he seemed always willing to share with everyone.

He was an ambassador from the land of creative scientific thinking, validating the serious nature of the illness and bringing great comfort to people through a very generous patience.

Great loss.
 

Ember

Senior Member
Messages
2,115
Such a terrible loss! It's rare to encounter a life so fully informed by faith. The Dalai Lama declared his religion to be kindness, and Rich's life declared the same. He must be in the company of angels now.
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
My deepest condolensces on your loss.

I'm shocked and saddened to hear this. Rich gave those of us in the cfs community more
compassion, hope, intellect and wit than anyone else I know. His willingness to listen and give honest,
intelligent and open minded feedback will be missed.

Hugs ... Marcia
 

Sallysblooms

P.O.T.S. now SO MUCH BETTER!
Messages
1,768
Location
Southern USA
This is a terrible shock. I have had so much help from him. He was so wonderful to so many, wanting to help in every way he could. He was generous with his time and knowledge. I am so very sorry for you and his family and friends. I will always remember him. We are all SO much better for knowing him. Sally
 

InvertedTree

Senior Member
Messages
166
I have no words. I am stunned. As many others have mentioned Rich gave so much to our community. I could always count on his wise words as well as his calming influence during rough times. He helped me personally and it seemed his ministry was to us.

Rich had a presence even if he wasn't posting. It was a loving, calm, patient presence. I will miss him a lot. He will be missed by our community and we lost a wonderful researcher.

My prayers are with you and your family Diana. Thank you for letting us know-that was so kind of you to think of us right now....
 
Messages
37
Such tragic news, like many others, I so appreciated his posts & his generous spirit.

My thoughts & prayers are with you & your family
 

Xandoff

Michael
Messages
302
Location
Northern Vermont
Dear Diana,
Please accept my humble sympathy. When we lose someone wonderful as Rich it lies so heavy on our heart and mind. I was once told by a very wise Woman that grieving is "soul work" as our heart and mind are not up to dealing with all that grief entails. My prayers are for you and that the power of your soul will carry you through this terrible tragedy. We are all here with you in y(our) time of loss.