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.
