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 outvarious 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 this abuse – the jailing of a researcher for pursuing noble and high-minded scientific ideas. 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, a patient of Dr Enlander, 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.