patient advocate Chris Cairns posted the following:
Mt. Sinai ME/CFS conference - Dr Eric Schadt lecture
Dr. Eric Schadt gave the first lecture at the Mt. Sinai ME/CFS Center
conference on Sunday November 20, 2011. This conference was organized
by Dr. Derek Enlander and his colleagues at Mt. Sinai Hospital in NYC.
Dr. Schadt was recently hired by Mt. Sinai Hospital to head their
Department of Genetics and Multiscale program. Here is an article in
the NY Times about Dr. Schadt at the time of this hire. This article
and others describe Dr. Schadt's visionary ideas. The lecture
delineates how he will approach ME/CFS in his lab. There is a profile
of Dr. Schadt in Esquire here. Dr Schadt will work with his colleagues
Dr. Ila Singh, a virologist, and Dr. Miriam Merad, an immunologist, to
get at this horrible illness of ME/CFS. The Mt. Sinai ME/CFS Center
for research and treatment was initiated by a generous gift from a
patient of Dr. Enlander.
Information will be forthcoming on how the ME/CFS community can
support the work at Mt. Sinai.
Monday, November 21, 2011
Mt. Sinai ME/CFS conference report - Sunday November 20, 2011
by Chris Cairns, The Patient Advocate
It was with an air of anticipation that I walked up 5th Avenue early on a f=
ine
Sunday morning, heading to the ME/CFS conference at Mt. Sinai Hospital. All
my hopes and anticipations were realized - and were exceeded, very much
exceeded. It was a remarkable day and we have Dr. Derek Enlander and his
colleagues at Mt. Sinai to thank for this.
The conference began at 11 in the morning and ran until 4:30. Dr. Enlander
set the agenda and guided the series of lectures in his own respectful
and lowkey fashion. Like Dr. Malcolm Hooper, Dr. Enlander employs
understatement,
refusing to draw disproportionate attention to himself. Yet, Dr. Enlander h=
as a
manner of presentation that allows his steady, confident personality
to be felt.
As usual Dr. Enlander is =93all there, all the time=94, as has been his hab=
it for a
long time. Talk to any of his patients and you will get this same appreciat=
ion
and respect. I was tremendously impressed with how he ran this conference.
All speakers kept to the schedule and the conference ran like clockwork.
This was surprising to me - as the conference had only been organized in th=
e
last three weeks. From the modest beginnings of a =93collaborative meeting=
=94
between Dr. David Bell and Dr. Derek Enlander, this situation quickly and
seemingly naturally morphed into a full day conference, first with the addi=
tion
of Dr. Kenny De Meirleir and later Dr. Eric Schadt and Dr Miriam Merad.
Additional speakers were Rich van Konynenburg, an independent researcher,
and Dr. Strayer from Hemispherix. Dr. David Bell was unable to attend the
conference due to illness, but he is solidly on board with this effort =96 =
and we
will see him at the next conference. Dr. John Chia was invited to the
conference but was unable to attend. Look for him in the future.
This event followed the format of the InvestinME conference in the UK, one
day filled with hard-hitting research and treatment presentations. If anyth=
ing,
this day was even more deeply focused - which is really saying something. I=
am
a great admirer of Richard and Pia Simpson, and what they give us with the
annual InvestinME conference in London.
In the first lecture, Dr. Eric Schadt gave an overview of his systems biolo=
gy
approach to research. This will be applied to ME/CFS in order to get at the
underlying pathology. Dr Schadt, a geneticist, is quite astonishing in his
approach and presentation. Dr. Schadt brings a great deal to the table. He =
is
seen as the very cutting edge of figuring out complex relationships.
Part of Dr. Schadt's work will be to continue and expand the research
of Jonathan
Kerr. Here is an article in Esquire about Dr. Schadt.
http://www.esquire.com/features/eric-schadt-0411
Dr. Merad, an immunologist at Mt. Sinai, spoke of her work in innate
immunity and its relations to ME/CFS. Here is a biography of Dr. Merad.
Both of these researchers are new to the ME/CFS world and are part of the
research team being assembled at Mt. Sinai. Ila Singh, a virologist, has al=
so
recently joined the Mt. Sinai research team. (Dr. Singh will be
working part-time on this project.)
Many of us are familiar with Dr. Singh and her work in XMRV. Dr. Singh
was unable to make a presentation as
she was moving from Utah. She will certainly be present at the next
conference.
The Mt. Sinai research team includes a geneticist, an immunologist and a
virologist, all three working closely together on this project. The
amazing thing
is that here are three researchers at the same research hospital, all
pledged to
work together in a collaborative fashion towards cracking this illness. Thi=
s is
unheard of in the world of ME/CFS. This indicates a seismic shift. While Dr=
.
Schadt and Dr. Merad gave indications that they do not know much about
ME/CFS, they emphasized that its complexity is not that much different from
other situations on which they have worked. Their response to the patients
was indeed sympathetic and the two researchers must have learned a great
deal about the nature of the illness and the difficulties that afflict thes=
e
patients.
During the wrap-up panel discussion, Hillary Johnson asked a few pointed
questions that, as usual for her, were extremely illuminating. Hillary cuts=
to
the quick - and a sense and weight of history attends her every word. Hilla=
ry
stands like a rock for the long abused patients with this illness. She is a
wonder to me. Her question was : Weren't these researchers afraid to go dow=
n
this road of ME/CFS research? - a road fraught with peril and the remains o=
f
many previous researchers? The Mt. Sinai researchers seemed genuinely
unfazed by this. Their answer was no, no they were not hesitant. Instead, t=
hey
were eager.
Hillary also insistently sounded out the depth of their commitment (in term=
s
of hours and staff). This is a very tough question to ask anyone, essential=
ly
asking are you for real or are you a bunch of phonies? In other words, was =
this
a sidelight for them? Both the Mt. Sinai researchers expressed in very clea=
r
terms that this was going to be a serious effort with various researchers i=
n
their labs working steadily on the project. Obviously this is a
reflection of the
money committed to do this work. Dr. Schadt said he had just hired twelve
new people for his lab and that some of them would be working full-time on
ME/CFS. It was amazing to hear this, just amazing.
Mt. Sinai has placed a bet here - and I believe that it is a winning bet.
Dr. De Meirleir flew in from Brussels for the day and gave an excellent
presentation on his compassionate use of GcMAF in ME/CFS. His preliminary
data, reported elsewhere, indicated that 68 of 108 patients showed
improvement in at least two of the seven major categories of ME/CFS. More
data will be forthcoming soon, with larger numbers of patients.
Dr. Strayer of Hemispherix spoke about past and ongoing trials of Ampligen.
Dr Enlander is running an Ampligen trial in NY, joining those in Utah, NV a=
nd
NC.
Rich van Konynenburg gave a fine and compressed version of his glutathione
depletion and methylation blockage concept, as applied to ME/CFS. One can
see an extended version of his lecture in my previous blog post. Rich can t=
alk
in a very convincing way =93until the cows come home=94 and he was there at=
the
end talking to patients and professionals until the lights were turned out.
What a fine addition Rich was to this conference!
Dr. Enlander himself gave the final lecture, presenting information on his
treatment protocol and the various options available at present - and futur=
e
considerations.
The seminar room was at capacity - about eighty people, with the overflow
sitting on the floor. There was a sense of anticipation and excitement amon=
gst
the attendees. This Mt. Sinai conference presented no bullshit, no fluff -j=
ust
straightforward research and treatment possibilities. One can imagine an
expansion with a clinician/researcher brain-storming session the evening
before, combined with a dinner. One can clearly see where this is going now=
.
This conference happened at the right time and involved the right people.
It was a bit surprising that Fred Friedberg, the head of the IACFSME
association took a "pass" on this conference. He lives 45 minutes away and
saw fit to =93not show up=94. Others from the CAA were noticeably missing. =
Lipkin
could have walked over, but decided not to. While they were not particularl=
y
"missed", I think at the next conference, perhaps in six months, we will sa=
ve a
seat for them to watch a video in an adjoining room. For the CAA itself we =
will
reserve a place on the floor in the back. The next conference is going
to have to
be in a larger auditorium - and it will also be packed.
It is important to emphasize that this Mt. Sinai Center has no connection, =
as
yet, to the CFI - directed by Ian Lipkin at Columbia.
This CFI effort on the part of the Hutchins family, involving Harvard,
Princeton, Yale and Duke, holds
out the possibility of further serious and deep research into this illness.=
We
can only hope for CFI success, and that they have the inclination to cooper=
ate
with their colleagues at Mt. Sinai. The two initiatives have a great
deal to share
- and it is time to set aside egos.
The organizers of this Mt. Sinai conference indicated that the doors are op=
en =96
that they are =93open to suggestion=94 in terms of alliances and collaborat=
ions. It
was noticeable that Dr. Maureen Hanson and Dr. Susan Levine were in the
audience, both of whom I imagine would be interested in cooperating in this
Mt. Sinai effort. Who wouldn=92t? This was a very exciting day.
The conference was videotaped and audio recorded by Peter and Nicholas
Cairns. The various lectures will be put online and on DVD - and perhaps in
the future some short preview interviews can be filmed of the major figures=
in
this Mt. Sinai effort. I am a great believer in getting key pieces of
information
out to the larger world, and short =93impact videos=94 are one economical a=
nd
efficient way to do this. This also works well for fund-raising.
I leave to the end of this post a very important acknowledgement. This Mt.
Sinai ME/CFS Center is fueled by a generous gift of Dwight Merriman. None
of this would be happening without this gift. It is a matching gift,
and soon we
will be given instruction how we can contribute to this effort that is goin=
g to
have such a long reach.
At the very end of the conference, there was a profound moment where Dr.
Enlander, in response to a question, extemporaneously spoke for about two
minutes on the extreme severity of this illness and its ruinous effects on
patients. It is clear that this physician has a deep empathy for the subjec=
t.
Video available here:
http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-mecfs-conference-dr=
-eric.html
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