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.
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.
