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>>>>> Help ME Circle <<<<
>>>> 22 November 2011 <<<<
Editorship : j.van.roijen@chello.nl
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CFS Patient Advocate
MONDAY, NOVEMBER 21, 2011
Mt. Sinai ME/CFS conference report
Sunday November 20, 2011
It was with an air of anticipation that I walked up 5th
Avenue early on a fine 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
low-key fashion. Like Dr. Malcolm Hooper, Dr.
Enlander employs understatement, refusing to
draw disproportionate attention to himself. Yet, Dr.
Enlander has 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 habit for a long time. Talk to any of
his patients and you will get this same appreciation
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 the 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
addition 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 anything, 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 biology 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.
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
also recently joined the Mt. Sinai research team.
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.
This 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 these 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. Hillary 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 down this road of
ME/CFS research? - a road fraught with peril and
the remains of many previous researchers? The Mt.
Sinai researchers seemed genuinely unfazed by
this. Their answer was no, no they were not
hesitant. Instead, they were eager.
Hillary also insistently sounded out the depth of
their commitment (in terms of hours and staff). This
is a very tough question to ask anyone, essentially
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 clear terms that this was going to be a serious
effort with various researchers in 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
and 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 talk 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
future 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
amongst the attendees. This Mt. Sinai conference
presented no bullshit, no fluff -just 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 particularly
"missed", I think at the next conference, perhaps in
six months, we will save 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 cooperate 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 open =96 that they are
=93open to suggestion=94 in terms of alliances and
collaborations. 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 and 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 going 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 subject.
~~~~
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