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.

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.

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.

Laurel B.'s ME/CFS video

Here is a re-edited version of Laurel B's fine ME/CFS video. Laurel has done a service for us all in making this essential video.


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Moving a Severe ME patient

I was at the recent FDA meeting. Whether it is this meeting or any other government meetings, no mention is ever made of severely ill ME/CFS patients. No depiction of the real severity of the illness is recorded or given. There seems to be a constitutional allergy to depicting "the core of this illness".

This is true of government bureaucrats as well as patients, advocates, physicians, and clinicians – everyone. Many "half-sick", ambulatory patients give eloquent and heartfelt testimonies at government grieving altars. Regardless of the sacrifice on the part of patients, this information does not seem to impress anyone. Nothing happens.  This is a longstanding reality.

It is a structural problem – not embracing the deep seriousness of the illness. No one wants to go there.  

ME is a dangerous, debilitating, life-destroying illness of a frightening dimension. The government’s half-baked response to this illness shows great disregard - and manifests incredible cruelty towards patients with this serious illness.

Until those at the center of this illness - those in darkened rooms - are depicted and embraced and understood, nothing will happen at the government level.

In order to set the tone, videos of severely ill patients should be presented at the beginning of any government or private conference on ME/CFS. Voices from the Shadows, Josh Biggs' and Natalie Boulton's very fine film (or similar videos ), should be mandatory - to set the stage and to get the participants in the right frame of mind.

There is clear evidence that the government has no interest in this. Multiple times they have been given the opportunity to present visual evidence of the severity of the illness, and they have said – no.  The government is content to give a grieving altar to the moderately ill and leave it at that.

The very, very ill have big problems. Everything around them represents a threat to their health. They need to be protected at every level – protected from doctors, from realtors, from neighbors, from movement, from noise and vibration, from friends, from family, from hospitals, from water, air, chemicals, mold – from everything. 

Dr. David Bell & ME/CFS patient from ME/CFS patients on Vimeo.

My daughter recently wrote about her May 2012 move from one apartment to another. She writes her blog posts excruciatingly slowly - mostly from memory, using a voice recorder, and typing on a keyboard without using her eyes.  Among other things, my daughter suffers from photophobia and hyperacusis.

This 2012 apartment move was the first time my daughter had been out of the house since April 2010. She has been out of the house twice in seven years.

In April 2010, in a similar coordinated operation, we took her to a neuro-ophthalmologist.  I was concerned about her eyes. (I still am.) My eldest son flew in from Baltimore and, along with a MN friend, we drove my daughter the 12 minutes to the doctor's office. My daughter lay in the back seat of a Chevy sedan. As I was helping my daughter out of the car she said that she felt “like she had been beat up”.  (I learned something there.) We rolled her into the office on a wheel chair. The office staff was compliant. They lowered the shades and turned off the lights. The neuro-ophthalmologist did the first half of an eye exam and found nothing remarkable.  When the doctor left the very small office for a few minutes, my daughter got out of the examination chair and lay on the floor on a mat that we had brought with us. This seemed to disarm the doctor. A few minutes later we were back in the car, heading home. Once back in her apartment, my daughter recovered slowly - taking nine weeks to reach baseline. Moving an ME/CFS patient is a precarious business.

While this trip was difficult, and costly in terms of recovery, my feeling was that at least we had gained one doctor in MN. This turned out to be a delusion - as this physician proved unwilling to deal with my daughter through an advocate. Pleas to do so from another more compliant physician fell on deaf ears.

Recently I have learned from an ME/CFS friend a little more about moving severe ME patients. Here is my friend’s explanation:

“A car trip with CFIDS can be exhausting and unsafe, yet necessary to get to medical appointments. Lying across the back seat with no seat belts is highly uncomfortable and unsafe and the average backseat is rarely flat and small cars aren’t wide enough for a horizontal adult. Although a front passenger seat can be tilted back, it does not go completely horizontal and often is uncomfortable as well and the seatbelt can actually be dangerous to use with the passenger seat tilted down. 

After many months of research I decided to put an ambulance cot with seat belts in my van. I worked with an ambulance outfitter and we removed one of the back seats in my Honda Odyssey and then bolted the ambulance cot through the floor. This van-with-cot and harness seat-belt innovation has greatly improved my ability to get to medical appointments even if they are far away and even, though rarer, to occasionally make a nonmedical trip. It has made car travel possible in two very different, but equally critical ways:

1) It allows for long trips in both comfort and safety and one can also switch to the front passenger seat to be upright for a while. 

2) It also allows a CFS patient who can drive a few miles to have the ability to rest at any point during the trip as you can pull over and get in back and rest as long as needed before continuing the trip or errand. 

I was able to sell my old car for the same price I bought a 1996 second hand Honda Odyssey and I was lucky to get a free ambulance cot that had been removed in an upgrade. My only cost was the $200 installation. The cot is outfitted with pillows and a lightweight blanket and sleeping bag. A stick-on-protection film on the window reduces the sunlight. The original ambulance mattress was pretty hard so it's helpful to add a medium density latex 2” topper which can be cut to size.”

Circumstances now lead us to contemplate moving my daughter from Minnesota to Philadelphia. This is a much more complicated process and there is very little information to guide us, to help us to make decisions. One has to be extremely careful with a severely ill ME patient. Movement, sounds, smells, sights, vibration, touch can all be destructive for the patient – and not just in an incidental manner. I will write more about this later.

Mindy Kitei at the FDA