Blue Skies in MN (NK cell function)

I was pleased to receive the DVD of the Invest in ME conference. The Invest in ME conference was held in London in late May and is the premier research conference on ME/CFS. It is useful for me to watch a number of these lectures again - as I missed much during the conference day. It is an overwhelming concentration of information. Yesterday I watched Dr. Andy Kogelnik's presentation on the Open Medicine Institute. Today I viewed the lecture by Dr. Don Staines. It is a fine little talk and seeing it the second time ratcheted up my understanding of the great importance of this research. Dr. Staines is associated with the NK cell research going on at Griffin University in Australia. He was standing in for Dr. Sonya Marshall-Gradisnik, who was unable to make the conference at the last moment. Dr. Marshall-Gradisnik, working in collaboration with Dr. Dan Peterson and Simmaron Research, was scheduled to give an update on her work. Dr. Staines gave an overview of the work being done in Dr. Marshall-Gradisnik's lab on NK cells and other immuological aspects of ME/CFS.

Dr Staines demonstrated that Dr. Marshall-Gradisnik's studies revealed a clear impairment of NK cell function in ME/CFS, as well as a consistent reduction in NK cell lysis. This study points to low NK cell cytotoxity in this patient population. He went on to characterize a number of other immunuological impairments, including aberrant NK bright cells. These impairments across a variety of compartments form a fingerprint of this illness. (Interestingly Dr. Ian Lipkin suggested very much the same thing on September 10, 2013.)

Dr. Staines indicated that much rides on the outcome of this research by Dr. Sonya Marshall-Gradnisnik. Dr. Marshall-Gradnisnki and Griffith University recently presented five papers at the International Conference of Immunology in Milan. This paper examines Neutrophil function in ME/CFS. This one focuses on T cell dysregulation. A third examines Dendritic cells and Monocytes. Hopefully more will be published soon. I myself put great weight on the importance of this ongoing research and believe it will give a clear avenue into this illness, its diagnosis and treatment.

(Interestingly, in reading about Dr. Staines, I notice that he has done extensive research on Vasoactive Intestinal Peptide and ME/CFS, mostly about eight years ago.) 

Meanwhile, back in my world of practicality, I track NK cell functionality in my daughter using the Focus lab NK cell functional assay (LU30). 

Last week I was speaking to Dr. Derek Enlander and I asked the him the following question: “Over the years, I have noticed that a modest increase in NK cell function reflects patient betterment.  Do you find this in your patients?” Dr Enlander answered, “Yes, absolutely.”

The key question is, can NK cell functionality be increased?

It is my experience that MAF 314 raises NK cell functionality to a modest degree over time. No one at this time understands much about the activity of MAF or GcMAF but, in some patients, it does something to strengthen the immune system. My daughter’s NK cell functionality over the past two years is tracked in these NK cell functional assay numbers: 17, 21, 34, 29 and 15 (norm is 9-170).  The numbers in bold are when the patient was taking MAF 314. Since stopping MAF 314, the patient has returned to baseline NK cell function of 15. Since stopping or taking a break in MAF 314, patient betterment has diminished in some regards. In other ways, improvement seems to have been maintained.

Various other compounds are promoted as improving NK cell function. Primary among these is Isoprinosine.  Additionally one might list Zadaxin, l. Shirota (Yakult)), AHCC, Panax ginseng, LDN, Modified Citric Pectin, MGN 3, Epicor, Avemar, Ashwagandha, and ReishiMax (Ganoderma lucidum).

Dr. Nancy Klimas uses both AHCC and Isoprinosine, but there is no published indication of the benefit of these treatments.

Linda Tannenbaum is running a small trial on Moringa oleifera. Moringa is rumored to increase NK cell functionality.

Dr. Derek Enlander has formulated a compilation of various compounds reputed to raise NK cell function. This product is called Long Acting Natural Killer (LANK) and, in time, its activity relative to NK cell function will be tracked in his patients.

I would be interested if anyone has had success in raising NK cell functionality, documented by LU 30 testing. I know of one patient whose NK cell function increased dramatically on anti-retrovirals.

Here is a recent article about NK cell work at nearby University of Minnesota. Here is another recent NK cell function study.

I would recommend purchasing this modestly priced DVD from Invest in ME. A number of the talks are fascinating and illuminating, especially, as I said, with more than one viewing. I am particularly interested in reviewing the presentations of Dr. Amolak Bansal from Epsom and St. Heller University Hospital and also Dr. Carmen Scheibenbogen of Berlin Charite.

All this leads me to restate the obvious. It is important that another conference be established on the model of Invest in ME - one day private discussions, one day of public lecture. The subject needs to be "Treatment Now".  We have watched for eight years as the Invest in ME conference has consolidated and expanded research into ME/CFS - and a similar effort now needs to be made in discussions and presentation of available treatments. A worthy goal would be to formulate a clear diagnostic and treatment protocol for newly diagnosed patients. At this point, with the possibility of standardized treatments, it makes no sense to delay any more on this issue. Enough people have suffered with lousy treatment early on and Dr. Lipkin's talk yesterday indicates what most of us already know: the first few years are critical for intervention in order to blunt the negative progress of this illness. Also more effort needs to be given to those vast number of patients who are severely ill, unable to get proper medical care and ignored in almost all clinical trials. These severe patients hold the key to this illness and they should both be attended to and studied. 

"All there, all the time." - Rich van Konynenburg

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.

Mt. Sinai ME/CFS conference - Dr. Enlander lecture

Dr. Derek Enlander, who practices medicine in NYC, was instrumental in arranging a one-day ME/CFS conference at Mt. Sinai Hospital on Sunday, November 20, 2011. Dr. Enlander is well known in the ME/CFS community for his devoted work with patients with this illness. Dr. Enlander has provided support and care for thousands of patients in NYC and indeed worldwide. He travels regularly to Ireland and England and attends most ME/CFS conferences, playing a very important role down in the "trenches".

With a recent generous gift to Mt. Sinai Hospital by one of Dr. Enlander's patients, Dwight Merriman, Dr. Enlander wasted no time in getting this research and treatment center at Mt. Sinai underway. In the process he has enlisted three top researchers, two of them previously unknown to ME/CFS research. These researchers are Dr. Eric Schadt, Dr. Miriam Merad, and Dr. Ila Singh. On the clinical side, two well-known ME/CFS researcher/clinicians will be collaborating with Dr. Enlander at Mt. Sinai - Dr Kenny De Meirleir and Dr. David Bell. They will be undertaking various treatment paths, some of which are outlined in Dr. Enlander's lecture. See also Dr. Kenny De Meirleir's lecture on the latest with GcMAF.

Dr. Enlander, ever the gentleman, gave the last lecture of the day on that Sunday. In many ways his lecture functioned as a summation of the day's presentations and pulled various threads together.

Collectively these six lectures at this conference gave those in attendance great hope for the future of ME/CFS research at Mt. Sinai Hospital. The Mt. Sinai ME/CFS Center gives every indication of wanting to work collaboratively to get at this disease. This entire enterprise is exciting news indeed and we have Dr. Derek Enlander and his fine colleagues to thank for it. Let us hope that this small scale, hard-hitting conference idea becomes a regular practice.

The audio and videos of these lectures were done by Peter Cairns and Nicholas Cairns.

Mt. Sinai conference - Rich van Konynenburg

The upcoming conference at Mt. Sinai (on Sunday November 20, 2011) is a step in the right direction. This conference, the first of the new Mt. Sinai ME/CFS treatment and research center, embraces the serious exchange of treatment and research ideas in ME/CFS. There are some new names here, and we look forward to hearing from them. There are also some more familiar figures. The interaction should be illuminating.

The conference will start at 11 and will feature five half-hour presentations by Dr. Derek Enlander, Dr. Kenny De Meirleir, Dr. Eric Schadt, Rich van Konenynburg and Dr. Merriam Merad. After a lunch break there will be a panel discussion with the participants. (Judy Mikovits was scheduled to join the panel discussion, but will be "unable to make it" as she was arrested on Friday, November 18th in her hometown in CA on a fugitive from justice charge.)

I was pleased to see the name of Rich van Konynenburg among the speakers. Rich is an "independent operator" in the ME/CFS world - and one of the best. Over the years, he has developed a very convincing biochemical explanation for the part that methylation blockage and glutathione depletion play in ME/CFS. Rich has existed on the periphery for too long. He needs to be brought into the discussion. Rich is a welcome addition to this list of speakers, and perhaps this exposure will get some traction for his ideas.

I have followed closely the work of Rich for a good number of years now. Rich has presented poster papers at each of the major ME/CFS conferences (and at various other conferences). Once in a blue moon, he is actually invited to speak, and to present his thesis on the connection of the methylation blockage and glutathione depletion in ME/CFS. His ideas are firmly based in biochemistry and very well might play an important part in understanding and penetrating this illness. Certainly Dr. Enlander believes in the reality of methylation blockage, and his formula for treatment involves elements either borrowed from Rich's theory or coincident with it. Other clinicians also are paying more attention.

Rich's presence at the recent IACFS/ME conference was very noticeable, as he seems willing and able to talk individually with people without prejudice. He is on his feet all day of the poster conferences, presenting in a nutshell his complex set of ideas. Why he has never been given a time slot to directly address a conference session I will never know. His ideas need further exposure.

Here is a article by Rich van Konynenburg on Phoenix Rising. A revision of the original simplified protocol and a discussion can be found here. Discussions of the methylation protocol can also be found on various ME/CFS forums.

The first time I observed Rich van Konynenburg in action was at the 2007 IACFS/ME in Ft. Lauderdale. At that point, attendees to the conference could come to an open microphone and ask questions directly to the panels. In general the panel members "froze up" with the clarity and persistence of Rich's (and others) questioning. It was obvious that the "ability" of the panel members to engage unfamiliar territory was limited. Rather than trying to come to terms with what Rich was suggesting, they changed the format at the next conference to written questions - and in this way the organizers could control (and eliminate) the questions that were more penetrating or "difficult". This "technique" is used more and more today by important people who are averse to things "entering in". My response has always been, "Let's hear more from this fellow".

Recently, Rich gave a three-hour long lecture at a conference in Sweden. It is available online in three sections and they can be accessed in the following videos. I recommend viewing it in parts, as it is well worth watching.

Treatment for this complex, yet measurable, dysfunction is relatively simple, and can be found in various places on the internet. Rich himself engages on various forums, discussing with patients and advocates the specifics of his ideas, disassociating himself from giving medical advice.

It becomes obvious that his interest in ME/CFS is a labor of love. Certainly he cannot be accused of making money off of his idea, as he is always "on his own dime". Instead we find that his motivation to "get involved" is similar to many others in this field. He has a friend who has the illness.

Rich also is free of the usual entanglements - as he is neither an academic researcher nor an ME/CFS clinician. Instead his background is in electrical engineering. In his retirement, he has turned his fine mind onto the problem of solving or getting to the source of ME/CFS. Actually, like other important contributors to the mechanisms of ME/CFS (Dr. John Chia comes to mind here with his revisiting of older UK research of enteroviral involvement in ME/CFS), these ideas on glutathione depletion are not new, but borrowed from practitioners in autism. Rich had the insight to see the connection. We will all benefit from his insights.