NIH's "Accelerating Research on ME/CFS" Conference April 4-5, 2019 - livestreaming

Gemini

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Registration is now open for “Accelerating Research on ME/CFS,” a scientific conference to be held at NIH on April 4-5, 2019.

To view the agenda and to register* for the meeting, please visit: https://palladianpartners.cvent.com/CFS2019

Note that this meeting will be videocast.

Regards,
The Trans-NIH ME/CFS Working Group

*Note: Registration is required for the videocast as well as in-person attendance.
 

Gemini

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Day 1 April 4, 2019

9-9:20 AM Welcome/Introductions – NINDS and NIAID Staff

9:20-10:00 AM Setting the stage – ME/CFS 101- Cindy Bateman

Metabolomics/Metabolism of ME/CFS Joe Breen (NIAID) -moderator

10-10:30 AM Robert Naviaux (UCSD)

10:30-11 AM BREAK

11-11:30 AM Oliver Fiehn (UC Davis)

11:30-12 NOON Jonas Bergquist (Uppsala Univ)

12:00-1:00 PM LUNCH

Immunology of ME/CFS Nancy Klimas (NOVA SE) – moderator

1-1:30 PM Jose Montoya (Stanford)

1:30-2 PM Mark Davis (Stanford)

2-2:30 PM Derya Unutmaz (Jackson Labs)

2:30-3PM Maureen Hanson (Cornell University)

3:00-3:30 PM BREAK

Provocation Studies Andrew Breeden (NINDS) - moderator

3:30-4 PM Nancy Klimas (NOVA SE)

4:00-4:30 PM David Systrom (BWH)

4:30-5 PM Betsy Keller (Ithaca)

5-5:30 PM Alain Moreau (Montreal)

5:30-6PM Group Discussion Q&A Terri Wilder (#MEAction)-moderator

6PM – end of day one


Day 2 April 5, 2019

8:30-9:30 AM Clinician Panel Discussion Tony Komaroff- moderator

10 min per presentation; highlighting one area of ME/CFS treatment/practice that would complement others (minimal overlap)

Jose Montoya Peter Rowe Cindy Bateman Dan Peterson- invited Sue Levine David Kaufman - invited

9:30-10AM Q and A session with Clinician Panel – Open mike questions

NINDS Intramural study update Vicky Whittemore – introduction

10-10:30 AM Avi Nath (NINDS)

10:30-11 AM BREAK

Microbiome/Virome Sadie Whitaker (Solve ME/CFS) - moderator

11-11:30 AM Ian Lipkin (Columbia)

11:30-12 NOON Julia Oh (Jackson Labs)

12-12:30 PM Bhupesh Prusty (Wuerzburg)

12:30-1:30 PM LUNCH

Genetics Lubov Nathanson (NOVA SE)- moderator

1:30-2 PM Ron Davis (Stanford Genome Center)

2-2:30 PM TBD

Imaging of the CNS and ME/CFS Fred Friedberg (Stonybrook) - moderator

2:30-3 PM Jarred Younger (UAB)

3-3:30 PM Mike VanElzakker (Harvard)- invited

3:30-4 PM BREAK

4-4:30 PM TBD

Orthostatic/Autonomic Disorders Peter Rowe - moderator

4-4:30 PM TBD

4:30-5 PM Anne Oaklander (MGH)

5-6 PM – Summary and Q/A – Tony Komaroff – Open mike questions
 
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Gemini

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@Gemini The list on the website seems to be incomplete, at least only showing as far as “provocation studies” on an iPad.
http://palladianpartners.cvent.com/.../agenda-2e5f90defaa4406e8fce234835e11fdf.aspx

Also, when link is sent via mobile, it previews a page title with an error. It says “Opioid Accelerating Research on Myslgic...”
Thanks @Silencio, just sent your comments to the NIH contractor listed at csullivan@palladianpartnerscom.

I too had problems viewing the Agenda on my Windows PC as I re-formatted it to post here.
 
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Gemini

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Was the UK team invited and refused? There are speaker slots yet to be filled on Day 2, perhaps they'll appear on the final Agenda? .Anyone here know?
Someone on the s4me forum pointed out that Luis Nacul is going to Australia for the Emerge Conference 12-15th March, a few weeks before this one, so maybe the travel is too much for him. Several other speakers are listed as attending both events e.g. Jonas Berquist from Sweden.

However, it would be nice to see them attend the NIH event to get the message to staffers that well qualified patient samples are ready and waiting for good research studies to be funded. That would also join in with the voices of Ron Davis and Ian Lipkin whose teams also have many samples for research projects that need funding.
 

Gemini

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It is a little bit weird to have such a Top speakers in a conference of the NIH, isn't it?
Or I'm missing something? :thumbdown:
@Pendergast, whoever selected the Top speakers deserves high grades! :thumbsup:

The previous NIH conference 8 years ago-- the "State-of-the-Knowledge Workshop," was held on April 7-8, 2011 with a goal to discuss, deliberate, then summarize current science related to ME/CFS.

Goals for this year's conference are broader and the title "Accelerating Research" adds a welcome sense of urgency:

Present high-quality science studies of ME/CFS to better understand the state of the science and help drive the field forward by identifying gaps and opportunities.Presentations should emphasize newer work or in some cases critical previous work that fits in with current models of ME/CFS.

Has Naviaux's model and 3-step treatment strategy changed, have Mark Davis' T-cell findings revealed a target of clonal expansion... some of the many questions that hopefully will be answered....

And how can the scientific discoveries be translated into things of practical value (diagnostics, treatments) to benefit patients?
 

Gemini

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@Gemini The list on the website seems to be incomplete, at least only showing as far as “provocation studies” on an iPad...Also, when link is sent via mobile, it previews a page title with an error. It says “Opioid Accelerating Research on Myslgic...”
@Silencio, the NIH responded today as follows to the errors you picked up:

The title has been updated and no longer contains the word ‘Opioid’ , however the issues your encountering on the tablet is a product of the version of the platform we are using. Unfortunately on iPad’s the embedded agenda does not show fully in some instances.

The registration website company is creating a new platform that is more compatible with mobile devices that hopefully for the next meeting we will utilize!

Many thanks for catching the errors!
 

Silencio

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Oh thanks for letting me know @Gemini. Was mostly worried that it was also a problem on desktop view as I was sharing with others, so at least most people will see the full thing!
 

junkcrap50

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Who's the audience for this conference? It says its being held at NIH. Is it for the benefit of NIH and government officials to learn more about ME/CFS? (I hope so!) Or is it another CFS conference for CFS researchers?
 
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Who's the audience for this conference? It says its being held at NIH. Is it for the benefit of NIH and government officials to learn more about ME/CFS? (I hope so!) Or is it another CFS conference for CFS researchers?
I believe it's meant for both plus patients (there is a livestream) but it's always hard to tear people away from their desks.

I'm glad OMF are sponsoring lunches and coffee breaks. Most employees at any company find it hard to refuse events with free food
 

Gemini

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Final Agenda posted for the NIH Conference April 4-5.

Changes made on Day 2:

NIH Director Francis Collins added to speak at 10 am.

"Genetics" session replaced by "New Technology for ME/CFS Research," speaker Ron Davis at 1:30 pm

Topics addressed by clinicians identified: Bateman-- Orthostatic Intolerance; Levine-- MCAS; Montoya-- Anti-herpes therapy; Peterson--Precision Medicine and AI; Rowe--Neurodynamic dysfunction at 8:30 am

Wrap-up topic added: "Next Steps for ME/CFS Research" at 5:15 - 6:15 pm

https://custom.cvent.com/536726184E...35e11fdf/8099b1c8f6b64f19a57ef821b1615e06.pdf
 

Gemini

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Update received today from the Conference planner:

Good afternoon remote attendees,

Information on how to view the Accelerating Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Meeting, remotely is now available on the meeting registration website.

The meeting will take place on April 4-5, 2019 on NIH Main Campus in Bethesda, MD.

Please note that the meeting archive will be available on the NIH Videocast website approximately a week following the close of the meeting and then available to view forever.

Please click here to view the Meeting Information & Remote Attendance tab.

Best,
Carly Sullivan
Meeting Planner
 

perrier

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Oh, when will these lovely hard working folks announce that they know what is wrong with ME patients, what the real nature of this disease is, and when will there be treatments. These conferences are really fascinating, lots of experiments, and this is found and that is found, but when oh when will we have a complete picture and a real sense of what this disease is, and how to fix it. It is very hard waiting and watching our children and friends suffer so deeply
 
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Moof

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I'm finding it hard to spot which time zone the meeting is taking place in. Does anyone know, please? (I've probably missed something really obvious – sorry!)

ETA: found it as soon as I posted. D'oh! Sorry again.