• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

ME CFS conference in New York 20th November 2013 relating to treatment .

H

Helen

Senior Member
Messages
2,243
acer2000 said:
Can anyone comment more on this conference? I am interested in going if I can make the trip work (or maybe sending a family member). Is it worthwhile for patients? Is there a link to the talks from last year?
Click to expand...

Here is a link to the conference 2011
http://cfspatientadvocate.blogspot.se/2011/11/mt-sinai-mecfs-conference-report-sunday.html
Videos from the talks can also be found in the Blog Archive on the left side . A great job with the videos and the blog!

Presentation of the next conference
http://cfspatientadvocate.blogspot.se/2013/10/mount-sinai-mecfs-conference-november.html
 
Last edited:
A

acer2000

Senior Member
Messages
818
Also, the conference is in 2 days, but this thread might be better suited for "CFS Events" topic.
 
J

JohnnyD

Senior Member
Messages
206
http://finance.yahoo.com/news/hemispherx-biopharma-sponsors-chronic-fatigue-130000425.html

Hemispherx Biopharma Sponsors Chronic Fatigue Syndrome Conference at Mount Sinai Medical Center in New York

Clinical and research experts will present information on current treatment options, including the most promising experimental drugs and the latest research findings, that provide insights into the diagnosis of this disorder. The speakers include Dr. Nancy Klimas, Institute for Neuro Immune Medicine at Nova Southeastern University; Dr. Daniel Peterson, Sierra Internal Medicine; Dr. Judy Mikovits, Dr. Eric Schadt, Institute for Genomics and MultiScale Biology at Mount Sinai Hospital; and Dr. Derek Enlander. The Q&A panel being held during the symposium will include Dr. Francis Ruscetti, National Institute of Health and Dr. Christian Becker, Critical Care Medicine in New York.
.
.
.
 
J

JohnnyD

Senior Member
Messages
206
I don't think so. We'll have to rely on folks attending, like Acer2000 above, and other PR's after the conference is over.

What a great group of experts - should be an excellent conference and I'm sure the expert participants will have ample opportunity for strategic planning.
 
Seven7

Seven7

Seven
Messages
3,444
Location
USA
I wonder if they allow cell recordings??? Maybe one can post later??? I don't mind paying or donating the institution for the right to see it. Just cannot do the trip.
 
shannah

shannah

Senior Member
Messages
1,429
I don't see this posted anywhere. I could have missed it though. If so, feel free to move or delete. Hemispherx is one of the sponsors. No indication it's going to be webcast. Anyone here going?


"Diagnosis, Treatments and New Developments in ME and CFS" ("Myalgic Encephalomyelitis" and "Chronic Fatigue Syndrome"

will be held on November 20th beginning at 11 AM (EST) at the New York Academy of Medicine, 1215 Fifth Avenue/103rd Street, New York, NY. The program is the second symposium by The ME and CFS Center at Mount Sinai Medical Center in New York, which is headed by CFS expert, Dr. Derek Enlander.

Clinical and research experts will present information on current treatment options, including the most promising experimental drugs and the latest research findings, that provide insights into the diagnosis of this disorder. The speakers include Dr. Nancy Klimas, Institute for Neuro Immune Medicine at Nova Southeastern University; Dr. Daniel Peterson, Sierra Internal Medicine; Dr. Judy Mikovits, Dr. Eric Schadt, Institute for Genomics and MultiScale Biology at Mount Sinai Hospital; and Dr. Derek Enlander. The Q&A panel being held during the symposium will include Dr. Francis Ruscetti, National Institute of Health and Dr. Christian Becker, Critical Care Medicine in New York.

Patient advocates attending the symposium will examine the scientific and medical findings in light of the new Food and Drug Administration ("FDA") regulations codified in 2013. These new regulations may provide the FDA with accelerated pathways to advance experimental treatments for patients with chronically debilitating diseases; especially where there are little or no existing treatments.

http://finance.yahoo.com/news/hemispherx-biopharma-sponsors-chronic-fatigue-130000425.html
 
Mark

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Anybody who is attending, and able to take notes, write something up, or possibly make audio recordings (if permission is obtained) please contact myself and/or Firestormm; we'd like to have an article on this. We can help with expenses and potentially pay for the article if that helps.
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I just got home from the conference. It was great (though had never been to one before so I can't really say). Best part was meeting some people I had wanted to meet for a while especially my hero Hillary Johnson, also Jen Brea, Jeannette and Eileen Holderman.

Chris Cairns was there so we should be treated to a good blogpost soon. My head was/is too mushy to write about it.

It seemed like Mt. Sinai and Klimas were doing some great work collecting much bigger data sets on various abnormalities after exercise and mapping out the connections between them which should advance the science.

I had no idea what Dr. Mikovits was saying, but she sounded very convincing!
 
Last edited:
Johannes Starke

Johannes Starke

Messages
11
Location
Davis, California
justinreilly said:
The biggest splash summed up by Jeannette's tweet:
"#MECFS HillaryJohnson question for Ruscetti. Are ppl at NCI still showing interest in connection btw ME and cancer? [ . . . ] [They] have NO interest in this disease!!! Sequestration will make things worse. Unpopular diseases will have an even harder time to get money. Private foundations is where it's at."

http://tl.gd/mvc029

Iirc Ruscetti's words were "The big three, [ . . . ] have made it very clear they want nothing to do with this disease. And with sequestration it's only going to get worse."
Click to expand...

This is very hard to swallow.

At the same time, based on how government government agencies have acted for as long as I can remember, it sounds like the hard truth.
 
Last edited:
Ember

Ember

Senior Member
Messages
2,115
justinreilly said:
Iirc Ruscetti's words were "The big three, Fauci, Collins and Varmus have made it very clear they want nothing to do with this disease. And with sequestration it's only going to get worse."
Click to expand...
Those words don't exactly square with Dr. Lipkin's comment in September:
The challenge, as I’ve said, is that we have no resources to go after identifying what it is that is stimulating these responses. So, again, I think it is critical that you apply pressure on your congressmen and your senators to generate more research funding for Chronic Fatigue Syndrome research, and if you have the means yourself to do something about this, that you become invested in it because we are partners in this thing. We cannot do this work without your support. We do not have the resources to do what is required. I remember in the very early days of HIV/AIDS when I was still a trainee at the CSF in fact, it was very early days. And in those days there was very little support for HIV/AIDS. It really took advocacy to force that.

Now you’ve got a number of people who are very receptive to this. Tom Frieden is receptive to it. Tony Fauci is receptive to it. But their hands are tied right now because of sequestration. So it is important to that you do something to propose additional resources be allocated to the National Institutes of Health, the Centers for Disease Control, so that this work can proceed, and so that we can get the answer that we need.
Click to expand...
 
You must log in or register to reply here.