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. 

Striker drugs or terrain modulation?

Here in Minnesota, I try to escape the role of a patient advocate for a few hours and recapture my own reality. Often I go into the Minneapolis Institute of Art, a very deep and broad collection that takes you into unexpected realms. The museum is always near empty. I am not complaining about this, but it does say something about the larger "culture" in which we live.

I have many favorites here and I visit them each time as if they were old friends, which indeed they are. The above portrait by Goya is high on my "favorites list" and represents for me what doctoring is about - in this age or any age.

It is entitled "Self-portrait with Dr. Arrieta". Goya painted it in 1820 in appreciation of his physician, who saved his life. The inscription at the bottom, painted in oil paint, reads, "Goya gives thanks to his friend Arrieta for the expert care with which he saved his life from an acute and dangerous illness which he suffered at the close of the year 1819 when he was seventy-three years old. He painted it in 1820."

This painting speaks for itself - with subtleties that reveal themselves on close and repeated viewing. In this world of ME/CFS, there are a number of doctors who match Goya's idea of Dr. Arrieta, both for skill and devotion. One of them is Dr. Dan Peterson, who was recently interviewed by Debra Waroff on ME/CFS Alert. As quickly as this twenty-minute video appeared on the internet, it disappeared - for unknown reasons. ProHealth has a written transcript of the interview here.

I stood by chance in a room with Dr. Peterson at the IACFS/ME conference in Reno, NV, in 2009, and witnessed an outpouring of love for this physician from his patients. It was a powerful moment, perhaps the most moving public testament that I have ever seen. Since then I have had the opportunity on a number of occasions to see Dr. Peterson making presentations and lobbying for more research into this nasty illness, ME/CFS.

At the FDA meeting this spring in Bethesda I stumbled into the room where Dr. Peterson was sponsoring, along with Simmaron Research, a small, informal but powerful roundtable discussion regarding treatment. Other physicians were present, including Dr. Nancy Klimas and Dr. Derek Enlander, both of whom provide support and care in the old-fashioned manner of Goya's Dr. Arrieta. The discussions were both lively and informative and more interaction between well-meaning clinicians should be taking place. This specific (pre-FDA meeting) gathering was entirely the result of Dr. Peterson's effort, spending his own time and money to make this happen. Dr. Peterson is a generous soul.

In recent years Dr. Peterson has reached out to establish research and treatment relationships with many other people, most noteworthy being Dr. Andy Kogelnik of the Open Medicine Institute. This looks to be a fruitful collaboration.

I have witnessed similar but larger discussion formats instituted by InvestinME each year now, where they gather a large group of researchers and physicians in one room to have day-long discussions.

In March, Dr. Peterson made a presentation of a clinical study of his use of Vistide in ME/CFS. An article on the use of this drug by Cort Johnson can be found here. Vistide is a heavy-duty antiviral drug that needs to be carefully managed. Dr. Peterson has by far and away the most experience with this drug - and also with Ampligen. Dr. Peterson uses other modalities, also that are in the category of what I would call "striker drugs". They are designed to knock the hell out of a target and allow (or hope to allow) the immune system to get back on top of whatever. I myself have met a number of individuals who have gone through Dr. Peterson's treatments and come out the other side being able to build a better life. On the other hand, I wonder how many patients "blow out" on his treatments?

In looking at Debra Waroff's fine interview I found myself wanting to ask how Dr. Peterson determines that a particular patient would qualify for treatment with Vistide - or for that matter with Ampligen? He obviously makes his decision based on viral titers and other tests - and on his clinical judgement. The specifics interest me.

It is noteworthy that in this short interview Dr. Peterson does not speak of lyme disease or its coinfections, nor does he address mycoplasmas or mycotoxins.

Debra Waroff speaks of Dr. Peterson as the "Father of CFS". In this she is partially correct, as there were two fathers of CFS - the other being Dr. Paul Cheney. Each of these physicians has continued, in straight-line fashion, their separate pursuits of the diagnosis and treatment of this illness. The manner in which they diverge in their approach is worth noting, as their angles of approach are so different and almost seem unbridgeable. One might even believe that they are dealing with two different illnesses. And yet their patient cohorts must be similar, both involving patients coming from all over the world.

If Dr. Peterson utilizes heavy duty drugs to strike a particular target ("a serious drug for a serious illness"), Dr. Cheney eschews this, leaning more in the direction of "terrain issues", the larger contextual field in which the illness pathology operates ("The microbe is nothing, the terrain is everything"). The language of Dr. Cheney does not intersect at all with Dr. Peterson's. With Dr. Cheney there is no mention of Valtrex, or Ampligen, or even Acyclovir. Instead, from Dr. Cheney we hear terms like bison cell-signalling factors, trophic factor, Vaso Intestinal Peptide, adult stem cells, MAF 314, GcMAF, BLAK water, Isoprinosine (Inosine) - all used variously in an effort to alter the terrain instead of directly striking an approximate or assumed target. When Dr. Cheney does bring out the "big guns" to attack a virus it is Artesunate or Colloidal Silver.

Dr. Cheney's ideas are presented in a lecture in another post on this site. The ideas presented in this lecture are totally fascinating. Dr. Cheney has a very individualistic diagnostic device in his IVRT echo machine, a device to which he is seriously tethered. So far very few people seem to be paying attention to Dr. Cheney's important diagnostic and treatment criteria. This is not understandable to me, this marginalization of perhaps the most acute and complex mind in the field. One hopes that Dr. Cheney's impressive work does not go in the direction of Dr. Jay Goldstein's.

While Dr. Cheney maintains a relatively withdrawn or private image (in spite of attending many conferences), he does have important interactions with various clinicians - for instance Dr. Shoemaker, Dr. De Meirleir, and many others outside of the typical ME/CFS arena.

Interestingly, Dr. Cheney also does not talk much about lyme disease. When he does, he is indecisive, as if he is unable to decide where this bacterial element resides in the larger picture.

These two physicians, these two "fathers of CFS" - Dr. Peterson and Dr. Cheney - represent the extremes. It is as if they are in an unspoken contest to get at this illness - from decidedly different directions, from poles as far apart as possible. The world created by the tension between these divergent approaches is totally fascinating. It is in the dynamism - the crunch - of these two approaches that progress is going to happen.

My conclusion, in watching the unfolding diagnosis and treatments in ME/CFS, is that more treatment discussions need to take place, particularly regarding this dynamic of drugs versus terrain modifications.  Many other clinicians - Guyer, Enlander, Klimas - live in the world in between, adopting items from both ends of the spectrum.

There is a great need to have conferences or retreats where treatments are discussed. Some clinicians give an indication of being able to play well in the playpen while others have not. This of course can present problems.

A treatment conference should be held inviting Shoemaker, Enlander, Cheney, Klimas, Peterson, Horowitz, Brewer, Chia, Lerner, Montoya, Bhakta, De Meirleir, Kogelnik, Mikovits and others. The Invest in ME format of one day for private discussions and one day for public lectures is decidedly the best. It would be important to first develop a clinical treatment protocol for newly diagnosed patients. (Additional attention should be given to the severely ill patients, who hold the key to this illness.) There are diagnostics and interventions that can be done now. If these clinicians waver in their confidence in being able to do this, I and other advocates and patients could give them some good starting points. Many of us have learned the hard way.