Friday, September 28, 2012
It was with great sadness that I learned of the death of Rich van Konynenburg. Rich did a tremendous amount of good for patients with neuro-immune illness. He was a beloved figure.
Rich's background was in engineering. He was retired from a job at Lawrence Livermore Laboratories when he got hooked, through chance, into applying his intellect and fine mind to the complexities of ME/CFS. He stumbled into the field as many do - through having a friend with ME/CFS. What a wonder and a delight this chance happening was for the rest of us!
Rich van Konynenburg - an independent, non-medical, unaffiliated researcher - has done a tremendous amount to "get at" this illness. The operative words here are independent and unaffiliated. Bringing betterment to this patient population became his life. He connected to the patients and felt their isolation and frustration.
It was said about the painter Georges Braque that he was "all there, all the time". Well Rich too was "all there, all the time".
About ten years ago Rich formed an idea about this illness - the essentials borrowed from an Autism treatment of Jill St. James and Amy Yasko. Rich transferred this Autism treatment, with adjustments, to ME/CFS, developing, through analysis, the idea that glutathione depletion was a critical problem in this illness. Applied to ME/CFS, the idea was a good one, it had legs, and the theory put into practice has brought a great deal of betterment to many ME/CFS patients. Over the years, Rich elaborated, researched and promoted his concept of a methylation block/glutathione depletion as a central, perhaps the central, feature with these neuro-immune illnesses. Once in, he displayed perseverance, love, support, empathy, resolve, intelligence and an astonishing array of other wonderful human qualities. As far as I could see, this fellow had no downside.
Rich van Konynenburg will not be replaced. He is truly irreplaceable.
For a number of years, Rich was a member of the Ratna Ligne group, a privately financed alliance of clinicians and researchers. It was here that he was able to present his big picture concepts of the working of this illness. It was here that he forged long-term relationships with other thinkers.
I first heard of Rich van Konynenburg from Dr. Karen Vrchota of Winona, MN. Dr. Vrchota was an early believer in Rich's ideas of methylation blockage, with accompanying glutathione depletion. Dr. Vrchota introduced my daughter to the protocol and over time, it has benefited her. A number of years ago, Rich wrote an analysis on my daughter. He was interested in her case as it was so well documented. What did I learn from reading this analysis? I learned that this is a complex multi-faceted illness that has to be taken apart and attacked in pieces. I learned that there are existing therapies that can help with this illness. I learned that certain things need to be done for other things to be added.
In time, Rich built a relationship with Dr. Tapan Audhya at Vitamin Diagnostics and asked Dr. Audhya to construct a test or series of tests that accurately measures reduced glutathione and various components in the methylation cycle. With these tests patients were able to identify the problem - and more importantly were able to track progress. These few simple supplements supporting the therapy remains one of the essential actionable treatments for this illness. A great many people have experienced positive benefit with the methylation protocol and testing.
In 2009, Rich did a privately funded treatment study with Dr. Neil Nathan. The study can be found here. The positive study results warranted further controlled study, which has not been done.
I first encountered Rich van Konynenburg in January 2007 in Fort Lauderdale at the IACFSME conference. Rich presented a "poster paper" on the methylation blockage concept. This meant that he "posted" a visual display of his research ideas (for selected hours).
At this conference, after each series of lectures, there was an "open microphone" question period. Rich was quick on his feet, always first to the microphone, waiting to ask his question. At the end of his question time, he would move to the end of the line, hoping to ask another question. His questions were always articulate, specific, challenging, thoughtful and respectful. Always they connected his theory to the existing, mostly abstract, dogma being presented at the conference. One looked at this situation and wondered, what is wrong with this picture?
Why is this fellow Rich asking the questions? Why is he not up front, on the lectern, giving a lecture and presenting his ideas? It made no sense to the perceptive viewer. After all, Rich had a thoroughly constructed theory, a practical and researched idea, an idea that was actionable, and one that could be studied and tested. All this was too much for the powers that be.
The response from the dias to his politely framed clarifications were always the same - a lackluster indifference. What did they ultimately think of Rich voicing his ideas publicly? At the next conference it became clear. At the 2009 Reno conference they canceled the open microphone and took questions through writing, enforcing a situation where they could control the flow.
In Reno, I asked Rich about this change of format. He just looked at me and smiled that wonderful wry smile of his - and said nothing. My conclusion was that he "had seen it before". Rich's response was to move on, to give renewed effort to the avenues afforded to him - the poster paper presentations.
I saw Rich in Reno in 2009, in Ottawa in 2011, in Bethesda at the NIH and in NY at the Mt. Sinai ME/CFS Center conference in 2011. Rich was always the same, engaging anyone who would listen to his ideas. At conferences he could be seen standing from the beginning of the day to the end conversing with anyone from Dr. Cheney to the newest patient or advocate. Rich had a passion for the subject and no bias. One never got the sense that he was talking down to you. He was fascinating.
More recently, and to our collective good fortune, Rich van Konynenburg reached a broader audience in the presentations of his work. He gave a comprehensive three-hour lecture on his theories in Sweden a year ago, which can be viewed here. He also made a shorter version of this lecture at the Mt. Sinai ME/CFS conference in New York in November 2011. This conference was organized by Dr. Derek Enlander. Video footage was made of this lecture and will be available online. There is a blog post on his presentation at this conference here.
Rich was scheduled to speak at the November 2-4 ILADS Lyme conference in Boston. This lecture will now be given by his friend and research colleague Dr. Neil Nathan. Rich was also scheduled to talk in Belfast on Novermber 11, again at the invitation of Dr. Enlander.
Perhaps now the NIH will pick up on his research idea and run studies to conclude what the rest of us already know: Rich's protocol brings benefit to a large number of patients.
The death of Rich van Konynenburg is a devastating loss to the ME/CFS community. Patients all across the world are crying because of this very sad news.
Sunday, September 2, 2012
A few years back I bought and read a book by Dr. Benjamin H. Natelson called Your Symptoms are Real. I have read a great many books on neuroimmune illness, CFS, diet, lyme disease, gut ecology, B12 and so on. Dr. Natelson’s book did not distinguish itself in any particular way - except for one detail. On page 161, Dr Natelson mentioned the benefit of using a pedometer to track increased or decreased movement in illnesses involving fatigue and Post Exertional Malaise. This seemed a good idea so I bought the pedometer type that he suggested (Yamax 701) and had my patient begin wearing it. Like many things the novelty of compiling data on steps taken per day diminished - and more serious circumstances emerged that overwhelmed us, and the pedometer was set aside. However I did not lose interest in nor did I forget the idea – and the subject has revisited me.
Four months ago I stumbled, through my son Peter, upon a newer type of pedometer called a Fitbit. This device is worn clipped on a belt or pants and counts both steps and stairs climbed. What I found most interesting was that this device downloads its information wirelessly to a program on your computer. In this way, it collects or compiles all the data over days, months and years. It has a small way station where you can charge the battery. Each time this way station is plugged into the computer it automatically and wirelessly downloads the most recent information. This download can be done on a daily or weekly basis.
The Fitbit costs about $100 and you can read more about it here: fitbit.com
The wonderful thing about the Fitbit tracker is that it provides objective information or relatively objective information. This is particularly welcome news in an illness that has no tracker of betterment or improvement on therapy. Everything in ME/CFS is self-reported - subjective reporting of the patient, usually via a form. This pedometer device eliminates the uncertainty, bias and confusion of subjective reporting, at least in one category.
The Fitbit purports to be accurate. To me accuracy is less important than consistency. In my case, I pay less attention to the daily steps and more attention to the monthly steps. The program for the Fitbit graphs movement in daily, weekly, monthly and yearly categories.
I know of a number of ME/CFS patients who use this device. All attest to its benefits. One of them has used this device now for four months. She puts it on and gives it no thought - except to program it or recharge the battery. One great advantage is that health care supporters can access the information. For the month of May, this particular patient took an average of 1800 steps per day. In the month of August, the steps averaged 3000. The months in between indicated gradual, measured improvement.
(The question of why this improvement has taken place is another, very confusing matter, and will be addressed in later posts.)
The Fitbit can be used for both general tracking and for specific situations. For instance, if a patient was beginning a new therapy, like GcMAF or Rituximab or Enbrel, he or she could use a Fitbit device to establish a baseline. Over the next six months or so, the patient and physician could both get important information about the patient’s increased or decreased ability to move. The numbers tell the story.
Through my experience with diabetes I have been convinced of the importance of tracking devices. A tracker, particularly a tracking blood test, is absent in ME/CFS - and there is a great need for something to be developed. With existing testing there are various possibilities – NK functionality (LU30), CD57, c4a, MMP-9, Methylation panel, Acumen mitochondrial testing, Nagalase or a combination of all of these. Perhaps others would have suggestions here?
In fighting through the variables of this illness, one longs for something specific, something one can accept for real or as real. In a small way, the Fitbit does its part.