Mount Sinai Medical Center ME/CFS Group Meeting 20 nov 2011

[Guest guest]

Monday, November 21, 2011

Mt. Sinai ME/CFS conference report - Sunday November 20, 2011

by Cairns, The Patient Advocate

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. 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 “all there, all the timeâ€,

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 “collaborative

meetingâ€

between Dr. Bell and Dr. 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. Schadt and Dr Miriam

Merad. Additional speakers were Rich van Konynenburg, an independent

researcher, and Dr. Strayer from Hemispherix. Dr. Bell was unable to

attend the

conference due to illness, but he is solidly on board with this effort –

and we will see him at the next conference. Dr. 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 and Pia Simpson, and what they give

us

with the annual InvestinME conference in London.

In the first lecture, Dr. 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

Kerr. _Here_ (http://www.esquire.com/features/eric-schadt-0411) 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_

(http://www.mountsinai.org/profiles/miriam-merad) 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 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 “until the cows come home†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 “not show upâ€. 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 – that they are “open to suggestion†in terms of alliances and

collaborations. It was noticeable that Dr. Maureen Hanson and Dr. Levine

were in the audience, both of whom I imagine would be interested in

cooperating in this Mt. Sinai effort. Who wouldn’t? This was a very exciting

day.

The conference was videotaped and audio recorded by and

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 “impact videos†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.

Posted by consuegra at _11:49 AM_

(http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-mecfs-conference-report\

-sunday.html)

(http://www.blogger.com/post-edit.g?blogID=4895604594896814289 & postID=7877091107\

418682753 & from=pe

ncil)

Labels: _ Enlander_

(http://cfspatientadvocate.blogspot.com/search/label/%20Enlander) , _

Schadt_

(http://cfspatientadvocate.blogspot.com/search/label/%20Schadt) , _Kenny De

Meirleir_

(http://cfspatientadvocate.blogspot.com/search/label/Kenny%20De%20Meirleir) ,

_ME/CFS_

(http://cfspatientadvocate.blogspot.com/search/label/ME/CFS) , _Miriam Merad_

(http://cfspatientadvocate.blogspot.com/search/label/Miriam%20Merad) , _Mt.

Sinai

Hosptial_

(http://cfspatientadvocate.blogspot.com/search/label/Mt.%20Sinai%20Hosptial) ,

_Rich van Konynenburg_

(http://cfspatientadvocate.blogspot.com/search/label/Rich%20van%20Konynenburg)