Saturday, November 23, 2013

Mt. Sinai ME/CFS conference – November 20, 2013

The second conference at the Mt. Sinai ME/CFS Center was held on Wednesday, November 20, 2013. (The first conference was two years ago.) This year’s conference was an upbeat, almost exuberant affair, a set of fine lectures capped by a question and answer period. Dr. Derek Enlander organized the conference and presided over it with his usual charming and respectful guidance.

Various people, patients mostly, spoke positively to me of “the focus" of the conference and of the variety of information that it presented. Of course the packed room included many of Dr. Enlander’s patients - but there were also patients of Dr. Peterson and, I presume, of Dr. Klimas. One had the feeling that a number of the attendees had not previously attended a conference like this. At the end of the day it seemed as though many people did not want to leave.

A number of factors coalesced in this particular situation. Dr. Enlander, the sponsor and originator of this conference (aided mightily by Dwight Merriman, a major donor), is on the faculty of Mt. Sinai. This important medical center in NYC promotes the Mt. Sinai ME/CFS Center, which, in turn, is a huge platform upon which to operate a conference venue and to project information about this illness ME/CFS.

The speakers, limited to five, included clinicians and researchers.

The first speaker, perhaps the most dazzling (in the general sense), was Dr. Eric Schadt. If you want to be amazed, check out this talk from the last conference, recorded by my son Peter Cairns. Dr. Schadt has big plans for data assembly and manipulation. He works on various projects with various collaborators, all at the same time. Dr. Schadt, always dressed informally in his own private uniform, seems to be in a hurry. One wonders how much he knows about ME/CFS - and the feeling that I get is that he applies a schema from an allied chronic illness to ME/CFS. Nevertheless, he laid out various immensely complicated networks of disease, explaining the complexities and “perturbations” (a great word) along the way. It was all quite exciting. One wonders how much he works on our illness - and the big question is, how can we get him to do more work on ME/CFS? He seems propelled in a direction that would be extremely helpful. Certainly he is not lacking in enthusiasm, and is brimming with confidence.

Of particular note was his work with a technical collaborator, Dr. Joel Dudley, to find a drug for an existing illness (IBD), using their computational techniques. Through their elaborate process Joel Dudley identified Topiremate, an anti-seizure drug, to treat IBD in rats. No one previously had come close to thinking of using this drug for IBD. In another instance a previously unassociated tri-cyclite drug was found to be effective in a certain lung cancer with the results being published in Cancer Discovery.

The implication is that such a drug discovery process could be applied to ME/CFS. My suggestion would be to have Dr. Schadt and Dr. Dudley work on a drug-targeting project for ME/CFS, something that might be both quick and specific. For instance, imagine the possibilities if Dr. Schadt’s technology could interrogate particular cell lines from a tightly constructed cohort of ME/CFS patients.  
Next up was Dr. Judy Mikovits, who gave another of her amazing “outside of the box” lectures. It was also a surprising lecture, at least to me, who was not expecting her to touch on this subject.  But this is a wonderful thing about this researcher – she goes where she wants to go and always with the patients in mind. The reader might remember that Dr. Mikovits was jailed two years ago as she prepared to come to NY to give a presentation to the first Mt Sinai ME/CFS conference. At that time a great pall descended on this well-attended conference, as most conference attendees reacted with deep sadness to the very astonishing strangeness of the jailing of a researcher.  At least for this second Mt. Sinai conference day, many participants were pleased to see Dr. Mikovits speak – and it was a triumph, another masterstroke of Dr. Enlander. In fact, many of the attendees had come exclusively to hear Dr. Mikovits’ talk. I was among them.

Dr. Mikovits, without a job and without money, has continued over the past several years to attend professional conferences (cancer, GcMAF, mitochondria, lipid, lyme, ME/CFS) and to unleash her immense curiosity in the direction of this illness. She makes unusual, dynamic and wide ranging observations. We need to have more minds like hers at work towards our betterment.

Speaking of curious and fine minds, it was just a year ago that my friend Rich van Konynenburg died.  He gave a fine presentation at the last Mt. Sinai conference and his presence today was and always will be sorely missed.  Two years ago, Dr. Enlander showed his stripes by inviting Rich to give his first, or one of his first, presentations at a major conference. For years, I had observed Rich get marginalized in various situations –and his important ideas relegated to the periphery of conferences - but he always persevered. He was a wonderfully gifted and intelligent man, and when I think of his absence I want to weep.

Dr. Mikovits chose this moment to revisit an old topic, a topic that for all intents and purposes was seen as having been put to bed.  Dr. Mikovits’ lecture was an update on events since the Lipkin paper on XMRV. In today’s lecture, Dr. Mikovits presented various papers, some older, some newer that – and in a straight-line fashion - strung together the case that allowed the door to be reopened on a retroviral fingerprint in this illness. It was quite a talk, adjusted to the audience level, but still difficult to absorb. 

Towards the end, Dr. Mikovits touched briefly on one of her recent investigations - aberrant mitochondrial workings at the genetic level. She is investigating genetic testing for indications of secondary mitochondrial dysfunction that has shown up in a few ME/CFS or ME-like patients. Courtagen is the company that does this testing. This test might very well identify an important part of this illness - with the possibility of immediate treatment. The medical director of Courtegan is Dr. Richard Boles, whom I had heard about several years ago from Dr. Joseph Brewer. Dr. Boles is an innovator.  The hope is to form a collaboration with Courtagen, where they would run a small trial on severe ME/CFS patients.  

To me, Dr. Mikovits has the most “out of the box” thought process in this illness world.  In order to move this along, I think she needs to have more input into future conferences.  Like Rich van Konynenburg, she has “a feel for this illness”,  much of it springing from her work in cancer.

Dr. Mikovits and Dr. Schadt should have the opportunity to sit down for extended talks. Together, with the help of others, they might be able to crack a part of this illness. 

By lunchtime, we had had two lectures – the amazing and the surprising. What could be a better start?

The remarkable Hillary Johnson, author of "My Mother Ruth", came to me in the middle of the conference and said that it reminded her of the Invest in ME conference in the UK, both in its ambience and its seriousness.  Hillary was spot on. The Invest in ME conference is patient driven, which almost guarantees intensity and focus. These UK folks, primarily Richard and Pia Simpson, make things happen, without all the attendant crap of an ME/CFS Industry conference. If one wants to run an effective, hard-hitting conference, I would advise following the Invest in ME  model.

Dr. Derek Enlander has done this.  Perhaps it is inadvertent - but this Mt. Sinai conference had the same combination of clarity, variety, limited bullshit and consolidation of different aspects of research and treatment.  Could the conference have been improved? - Yes, it could, but it was an amazing effort as a second conference - and this bodes well for any such future endeavors.

The lectures after lunch were directed towards clinical practice.

Dr. Dan Peterson gave the first presentation. Each time I hear him give this talk, he seems to reach a higher level of eloquence concerning an array of difficulties of this illness. Dr. Peterson appears to me to want to be as clear as possible regarding his treatment of virally reactivating patients. These patients, clearly identifiable, represent 15% of his patients. I believe that he is mindful of his legacy and wants his lifetime of work to be continued by others. Of course this is a noble sentiment. He touched on Ampligen, Vistide, and Valcyte, all heavy-duty anti-virals that sometimes bring near complete recovery to selected patients. Of course the drugs work extra magic in his hands, as he has such a feel for this. I have personally met patients undergoing these treatments who have returned to work. Towards the end, Dr. Peterson confessed that he and his colleagues at large (clinicians) have not given or not been able to give proper care to these very sick and disabled patients. There was a sense of humility in what he said, something that you do not hear expressed very often.

Dr. Derek Enlander himself gave his usual polished, informative presentation, outlining his treatment protocol that has brought so much success to many patients. The room seemed to be full of his patients, in various stages of recovery.  Dr. Enlander presented a brief view of his upcoming research into the limbic system and announced a Spect Scan collaboration with Dr. Byron Hyde. These isotope scans look like they could be a new insight into the limbic system. Do not be surprised to see Dr. Hyde on the next conference program.

The last speaker was Dr. Nancy Klimas. Earlier in the day, she had been at a CFI think tank discussion at Columbia - and thus missed most of the day’s presentations.  She started her talk by promoting the new Neuroimmune Center at Nova University in Florida, which she heads up. Dr. Klimas has recruited various top-notch people from around the country including Gordon Broderick, one of my favorite researchers, and another, Mary Ann Fletcher, who had the guts to speak up in defense of our favorite advocate Eileen Holderman at the last CFSAC meeting.  I have always appreciated Dr. Fletcher’s work, but my opinion of her rose sky-high in these few revelatory seconds.

This is some enterprise that Dr. Klimas has consolidated - and let us hope that she can move things along, particularly in terms of research. She has a knack of getting grants, particularly through piggybacking ME/CFS onto Gulf War illness research.

Further into her talk, Klimas spoke about various immunological aspects of this illness. I have seen variations of this presentation quite a few times now, but for many in the audience this was a new and exciting experience.  Personally, I have never understood her cytokine profile - and the great difference between it and the separate efforts conducted by Dr. Montoya, Dr. Lipkin and Dr. Mikovits. For instance Klimas does not seem to pick up elevated IL-8 in her patient cohort.  To me, elevated IL-8 is almost a signature in itself of this illness. Conversely, she routinely gets elevated IL-5, which is almost non-existent in other ME/CFS cytokine panel cohorts studied. This makes one wonder what she is seeing and in what patient group.

Lost in the shuffle of the last few years is the cytokine profile that came out of the WPI in 2011. In spite of its attachment to the defunct XMRV, this profile functions equally well if the letters XMRV are removed. This study certainly gave impetus to Dr. Jose Montoya in his search for a signature, and I am convinced that Dr. Ian Lipkin’s cytokine work is going to reflect a similar signature, or at least be something built on the WPI work. How could it not be?

Dr. Klimas went on to claim that we have, virtually, a biomarker in this illness right now.  I found this somewhat disingenuous, and I do not think many people actually believe this. Certainly we can look forward to Dr. Jose Montoya’s studies in this regard, which will be presented in time. Dr. Montoya has told me that he continues working on this, is making progress, but that he “wants to get it right”.  Also we can look forward to publication of Lipkin’s work on cytokines that should emerge soon. Most important to me is the work on NK cell and other immunological markers, a potential “fingerprint” of this illness, coming out of the work of Dr. Sonya Marshall-Gradisnik and Dr. Don Staines at Griffith University in Australia. I have written on some of this elsewhere.

Dr. Klimas went on to complain about replication and promoted the idea of “you replicate my work and I will replicate yours”. To me, not having replicating studies in ME/CFS is a big problem. In my opinion the first and foremost trial to try to replicate is Dr. John Chia’s 2007 study on enteroviral involvement. Not having an attempt to replicate Dr. Chia’s findings actually interferes with progress towards a solution of a significant part of this illness. It has great negative consequences for patients.  Dr. Chia is left entirely to conduct this research on his own. Dr. Klimas should try to replicate Dr. Chia’s work - and then we can turn later to replicating something of her lab.

It was great to hear the various clinician attitudes and nuances for treatment – the more the better as far as I am concerned. One longs to hear others - especially Drs. Cheney, Chia, Brewer, Gordon, and Horowitz. And then there are other outside of the box researchers - Richard Boles (mitochondria), Robert Naviaux (metabalome), Patricia Kane (lipid membranes), John McClaren Howard (mitochondria, lipids), Marco Ruggiero (GcMAF) and others. 

There was a short question period at the end of the conference with the various presenters as well as Frank Ruscetti, Ashok Gupta, and Christian Becker. The panel ended with various questions to and statements or answers from the panelists.

Marian Lemle asked a question about her hypothesis that H2S plays a major role in ME/CFS and whether anyone made a connection with this. She must have been pleased that Dr. Enlander mentioned sulfur metabolism. From what I could see, Marian drew a blank from the rest of the panel. Her thesis is a good one and should be pursued. 

Howard Bloom made an eloquent statement about being locked in a darkened room for five years with this illness – and the attendant emotional catastrophe of total isolation.

Dr. Frank Ruscetti, fielding a difficult question about government (NIH) support for this illness, gave a fine, partial answer (by necessity) that concluded with his belief that funding for this illness will have to come from private foundations. I could not have agreed more and what he said was very important - coming in the final minute of the day. So this was a great conference from the first minute - to the last.

It is my opinion that the question period could have been extended for another half hour. There were at least ten people with hands raised when the conference ended - and the interest to engage the panel was growing. Many patients husband their energy and resources to get to this conference, and for them it is a precious moment, a unique contact with individuals that are elevated in their minds.  Patient questions are generally well articulated and diverse, polite and interactive. It is my belief that things –ideas, insights - come back the other way too and in unexpected fashion. I hate to say it, but panel members also need input - and some of these articulate patients might harbor insights that are useful to others, especially to medical practitioners. As far as I am concerned, they can never know enough about this disease and its peculiarities - and where else to get it but from the horse’s mouth. 

Wednesday, November 13, 2013

Yellow Soup

There was another fantastic and interesting article on Dr. Alexander Khoruts today. It appears in City Pages, is entitled The Forgotten Organ (Mysteries of the Microbiome) and was written by Chris Parker. This fellow Dr. Khoruts, based right here in Minnesota, amazingly, is, along with Dr Thomas Borody, the most dynamic individual in this emerging field.

He took a 14th century idea, known as Yellow Soup, and updated it to the 21st century. Many people are standing back, wondering how such a "Progressive idea" could emerge in our own time. (This is a bit of a joke.)

I first read about Alexander Khoruts and his work a good number of years ago.  He is right here in Minnesota at the University of Minnesota. He is a world leader in fecal transplantation and it is exciting to have him working so close by to where I live in Minnesota. Minnesota is not known to be a state that is aware of or gives legitimacy to ME/CFS (an understatement), so the possibility that a treatment for ME/CFS might emerge here is welcome news.

Here is an article on Dr. Alexander Khoruts, from the Guardian. As usual, the comments are interesting and informative.

A more immediate scientific observation regarding short term fatty acids in the gut can be found here.

Thursday, October 31, 2013

Mount Sinai ME/CFS conference - November 20, 2013

Dr. Derek Enlander is chairing an ME/CFS treatment conference at Mount Sinai in New York City on Wednesday, November 20, 2013. This one day conference will include presentations by Dr. Nancy Klimas, Dr. Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Dr. Enlander himself. A panel discussion including the speakers as well as Dr. Frank Ruscetti and Christine Becker will occur at the end of the day. The emphasis will be on communication and interaction.

(The conference takes place in the Academy of Medicine, 1215 Fifth Avenue. Registration fee is $150 for physicians and $50 for patients. The conference runs from 11-4.)

It is my obervation that this conference is an outgrowth of a Simmaron research discussion held prior to the ME/CFS FDA meeting in May. At that time, Dr. Dan Peterson generously organized a pre-meeting open-format treatment discussion involving both Dr. Klimas and Dr. Enlander, along with a number of other clinicians, researchers and patients. The discussion was a lively one, and free-wheeling, just the kind of discussions necessary to push ideas along. Dr. Peterson's early morning meeting was the only item of real interest at this FDA conference and it is my feeling that this Mount Sinai conference is an attempt to build on that Simmaron discussion.

This is the second conference arranged by Dr. Enlander and the ME/CFS Center at Mount Sinai. Dr. Enlander is one of a very few physicians who is attached to a major university hospital doing research on this difficult illness. The last Mount Sinai ME/CFS Center conference was held two years ago and featured several very powerful and important lectures. Foremost was a talk by Dr. Eric Schadt that can be found here. Additonally Rich van Konenynberg gave a fine presentation on his mehtylation blockage/glutathione depletion ideas. Rich, who died a year later, is sorely missed by the patient community and many others who experienced the very rare character of this man. Rich's fully articulated three-hour lecture in Sweden can be found here. Dr. Kenny De Meirleir's often referenced talk on GcMAF can be found here. Dr. Enlander himself gave a fine presentation of his treatment strategy.

It is well known that Mount Sinai received a generous research gift from one of Dr. Enlander's patients, thus fueling the ongoing ME/CFS research at this center. It is less well known that these conferences at Mount Sinai, with all their very great importance, are constructed on a shoe string. It is time for someone else to step forward and help with this conference, especially considering the reality that very few of these kinds of discussions are ongoing in the field of ME/CFS treatment. This conference has very great potential to expand and ignite substantial treatment discussions - but someone is going to have to help Dr. Enlander in order for this conference format to reach its full potential.

For those readers who are not familiar with Dr. Enlander, here is a short radio interview with him.

Thursday, October 17, 2013

ILADS/San Diego

I am heading to San Diego for the ILADS conference on October 18-20. ILADS is a four-day conference on Lyme disease, its diagnosis and treatment. ILADS has their own dogma, attached to the long term use of antibiotics in treating Lyme and its coinfections. This is a long and large conference - and it has the feeling of representing "an Industry". It is always well attended by practitioners or researchers who have a big stake in the Industry (Professionals). In this way it is very similar to the IACFS/ME conference that is held every two years. Both conferences take a very broad approach in attempt to represent various constituencies.  The results are mixed - as this approach to conferences always lacks focus.

Patient-driven conferences like Invest in ME or the Physician’s Roundtable are completely different. There is no Industry to be supported. The Mount Sinai ME/CFS conference in November 2011 also took a more focused approach both in terms of subject and duration. There will be another Mount Sinai ME/CFS conference on November 20 chaired by Dr. Derek Enlander and including Dr. Nancy Klimas, Dr. Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Enlander himself.

At this ILADS conference I will try to ferret out what I can, what is useful to me.

I am very interested to hear Dr. Richard Horowitz lead a section on treating multiple infectious diseases. This will be an extended preview of his book “Why Can’t I get Better? – Solving the mystery of Lyme and Chronic Disease”, which will be available on November 17.

Dr. Horowitz takes a broad view, embracing the complexities of these difficult illnesses with an umbrella framework that includes both viral and bacterial infections. He tries to think outside of the box and has shown a great curiosity over many years now. A recent lecture can be found here sponsored by Xymogen. In spite of the commercial aspect of this presentation, it advances his basic notions.

Dr. Burrascano will give an update on the Advanced Labs culture test. This is an important test and the CDC seems to want it to not exist.

Dr. Joseph Brewer will present a lecture on mycotoxins involvement in ME/CFS and his ongoing ideas of how to treat this. To me this is an important subject and I look forward to hearing Dr. Brewer.

Eva Sapi will provide an update on her Biofilm research.

Dr. Andy Kogelnik of the Open Medicine Institute will give a talk entitled, ”Clinical Research Networks: A Paradigm for Understanding Chronic Illness”. Dr. Kogelnik and the OPI/MERIT initiative have big plans. 

Various researchers will present immunologic side of Lyme disease – testing and treatment.  (I wonder if they know of the research of Dr. Sonya Marshall-Gradisnik?)

There always seems to be such a great disconnect between the Lyme community and the ME/CFS world. For me this is very hard to understand, as they seem to overlap so much. In a remarkable post, Cort Johnson brings us information that Simarron is looking for tick-born illnesses in Dr. Peterson’s samples. I wonder why it has taken so long.  I have never heard Dr. Peterson mention anything of tick born illness. Maybe Lipkin is finding something in this regard?

I have always been surprised at not ever seeing Dr. Horowtiz at a ME/CFS conference. He should be center stage. I did see Dr. Burrascano at a WPI conference in Reno in the summer of 2010, brought there by the phenomenon of XMRV. Since then a few ME/CFS physicians make an appearance at the ILADS conference, fueled by the larger viral and immunological research of Dr. Judy Mikovits. Presenters at ILADS have included Dr. Joseph Brewer, Dr. Jose Montoya, Dr. Neil Nathan and Dr. Kenny De Meirleir. (A De Meirleir lecture on GcMAF, similar to the one presented at ILADS last year, can be found here. GcMAF in Lyme disease has not been seen since Dr. Klinghardt proclaimed it a wonder drug several years ago. )

It has always been a mystery to me that at ME/CFS conferences, no mention is made of Lyme. This even holds true for the Invest in ME conference. Maybe it is time for getting Lyme doctors to ME/CFS conferences. Maybe Dr. Horowitz should make a presentation at the Mount Sinai Conference?

Among the many attendees at ILADS will be Dr. Judy Mikovits, Dr. Chitra Bhakta, Dr. Eric Gordon, and Dr. Karen Vrchota.

Wednesday, September 11, 2013

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. 

Friday, August 16, 2013

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.