• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Join us for a Community Symposium on the Molecular Basis of ME/CFS! Incredible opportunity!

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hi guys,

What an amazing opportunity this is! I won't say too much as you can read details below, but this is absolutely unprecedented and an incredible opportunity if you can make it!


OMF-Logo-No-Circle-High-Res-300x213.jpg

SGTC-Logo-202-300x60.png

CFSRC-Logo-e1496811384657-300x135.jpg

Chronic Fatigue Syndrome Research Center at Stanford University
Community Symposium on the Molecular Basis of ME/CFS
Sponsored by Open Medicine Foundation


Saturday, August 12, 2017
Come hear from our amazing team in person!A unique and unprecedented opportunity to learn from and interact with these world-class scientists.

Science-List-Final-1024x393.jpg


Visit the Community Symposium page on the OMF website for more information about these scientists.​

This exciting symposium will follow a 2-day meeting of our collaborative team of world-renowned scientists.

To date we have been able to develop a potential diagnostic and treatment assay using our new nanofabricated device on a few patients and healthy controls. We have also generated a fairly large amount of molecular data on a few patients, which has pointed to pathways that should help us understand the disease. Our collaborative team meeting will allow for in-depth scientific discussion of ME/CFS research results, and for strategizing on the best way forward for the scientific community.

At the Community Symposium, the scientists will update patients and any interested members of the public on our progress towards understanding the molecular basis of ME/CFS and our plans for the future.

Only together can we solve this incredibly complex and horrific disease.

Please register as soon as possible! Space is limited.
We look forward to seeing you there!

Ron-Signature-001-300x156.png

Ronald W. Davis, PhD

Director, Stanford Genome Technology Center
Director, Chronic Fatigue Syndrome Research Center at Stanford University
Director, Open Medicine Foundation Scientific Advisory Board

linda-signature-001.jpg

Linda Tannenbaum

CEO/President
Open Medicine Foundation

EVENT DETAILS
Where:
PAUL BREST HALL, 555 Salvatierra Walk
Stanford University, Palo Alto, CA

When:
Saturday, August 12, 2017

Schedule:
Registration: 8:00 am

Symposium: 9:00 am – 5:00 pm

Reception to follow

Cost:
$75 per person (includes program, breakfast, lunch and reception)

Register Here.

A DVD of the conference will be available after the conference to order on the OMF website.





Wow! I'm jealous of you US folks :)

Hopefully some of you will be able to attend, or some of your family members. This is an extremely rare event, let alone in the MECFS world!

Thanks,


B

@Janet Dafoe (Rose49)




 
Last edited:

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Theres actually something on my mind I would ultimately like to know about ... with the serum swap thing,
does the impedance curve differ between someone with mild and severe cfs or is there some sort of other factors which can't be controlled for so as to make such a comparative test impractical ?

Secondly at this point are we sure there is no permanent damage to the muscle cells of patients ? ( see this thread for context " What are the actual dangers of exercise besides feeling worse? " ).
There was mention of growing muscle cells, but were these taken from a healthy person or a patient ?

Theres obviously a good general theory ttaking form now but im struggling to see how long term deterioration can be accounted for . Is the difference purely in the immune system ?

These would be good questions for the symposium, if you can make it :) (only Prof Davis and team could answer this).


B
 
Messages
58
Interesting that Neil McGregor will be coming in all the way from Melbourne. I missed getting a chance to meet him years ago when I was interviewing with Tim Roberts and Hugh Dunstan to join their lab in Newcastle, AU.
 
Last edited:

Denise

Senior Member
Messages
1,095
Hi guys,

What an amazing opportunity this is! I won't say too much as you can read details below, but this is absolutely unprecedented and an incredible opportunity if you can make it!


OMF-Logo-No-Circle-High-Res-300x213.jpg

SGTC-Logo-202-300x60.png

CFSRC-Logo-e1496811384657-300x135.jpg

Chronic Fatigue Syndrome Research Center at Stanford University
Community Symposium on the Molecular Basis of ME/CFS
Sponsored by Open Medicine Foundation


Saturday, August 12, 2017
Come hear from our amazing team in person!A unique and unprecedented opportunity to learn from and interact with these world-class scientists.

Science-List-Final-1024x393.jpg


Visit the Community Symposium page on the OMF website for more information about these scientists.​

This exciting symposium will follow a 2-day meeting of our collaborative team of world-renowned scientists.

To date we have been able to develop a potential diagnostic and treatment assay using our new nanofabricated device on a few patients and healthy controls. We have also generated a fairly large amount of molecular data on a few patients, which has pointed to pathways that should help us understand the disease. Our collaborative team meeting will allow for in-depth scientific discussion of ME/CFS research results, and for strategizing on the best way forward for the scientific community.

At the Community Symposium, the scientists will update patients and any interested members of the public on our progress towards understanding the molecular basis of ME/CFS and our plans for the future.

Only together can we solve this incredibly complex and horrific disease.

Please register as soon as possible! Space is limited.
We look forward to seeing you there!

Ron-Signature-001-300x156.png

Ronald W. Davis, PhD

Director, Stanford Genome Technology Center
Director, Chronic Fatigue Syndrome Research Center at Stanford University
Director, Open Medicine Foundation Scientific Advisory Board

linda-signature-001.jpg

Linda Tannenbaum

CEO/President
Open Medicine Foundation

EVENT DETAILS
Where:
PAUL BREST HALL, 555 Salvatierra Walk
Stanford University, Palo Alto, CA

When:
Saturday, August 12, 2017

Schedule:
Registration: 8:00 am

Symposium: 9:00 am – 5:00 pm

Reception to follow

Cost:
$75 per person (includes program, breakfast, lunch and reception)

Register Here.

A DVD of the conference will be available after the conference to order on the OMF website.





Wow! I'm jealous of you US folks :)

Hopefully some of you will be able to attend, or some of your family members. This is an extremely rare event, let alone in the MECFS world!

Thanks,


B

@Janet Dafoe (Rose49)





I am unclear if all of the experts listed are actually attending/presenting. My understanding is that some people are listed who were invited, but are unable to attend.... I hope @Ben Howell, @Janet Dafoe (Rose49), (others?) can clarify.
 
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Janet Dafoe

Board Member
Messages
867
I am unclear if all of the experts listed are actually attending/presenting. My understanding is that some people are listed who were invited, but are unable to attend.... I hope @Ben Howell, @Janet Dafoe (Rose49), (others?) can clarify.
These are people invited but not all confirmed. We expect most of them are coming. People we know can't come are not listed. We will update the list on the OMF website.
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Wow how exciting!! Gosh how doe this this man do so much.... Actually I know - I have a father who was like this, but heck this is awesome!! Its my Dads birthday on the 12th so will definitely be thinking of you all. I wish I could come, hmmmmmm
 

Seven7

Seven
Messages
3,444
Location
USA
These are people invited but not all confirmed. We expect most of them are coming. People we know can't come are not listed. We will update the list on the OMF website.
I don't see Nancy Klimas from NOVA if there is somebody else representing them I might of missed it.
2) Anything we can do to help invite the media? This is such a great opportunity for education and update to the press.
3) Anything we can do to set up a live video or record that day for us that cannot travel?\

So glad to see Dr Rowe in here !!!! I am staying thanking to OI meds, I think OI is a huge part of CFS. GREAT call!!!
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
I can't help feeling very curious as to why this meeting is happening so quickly on the heels of the invest in ME conference of the same layout. Maybe they all realised they had way more to discuss and decided to organise another event, or maybe they have something to say.... Either ways its all good.
I've actually been to Stanford. I came to San Francisco for our National organisation back in about 1998 . I stayed on with Peter Snow of 'Tapanui Flu' fame ( he let me kip on his floor for a few nights and we looked around the city together. He was a thoroughly lovely country GP who used to host american trainee doctors down in small town Tapanui. One such student then went on to work at Stanford and she came and collected us and did an evening tour of the campus and took us out for a meal. It is a super nice campus. I would so love to come over to get out of our awful NZ winter. The only thing is that at that time my folks are going to Rarotonga and I'm in charge of my v old jack russell. I would have someone to stay with in San Fran, so I shall see......
 
Messages
2,087
I can't help feeling very curious as to why this meeting is happening so quickly on the heels of the invest in ME conference of the same layout. Maybe they all realised they had way more to discuss and decided to organise another event, or maybe they have something to say....

I would say something like this has been in planning for a bit of time.

I imagine the OMF have a lot to say about everything they have been doing for the past year or so. We have really only heard tidbits so far.

At other conferences they probably only have limited time to discuss what they have been doing, maybe by organising their own conference they can discuss more of their own work.
The severely Ill big data study results should be available now and maybe this is a way to communicate these directly.
I'm guessing.

Also, by having this in Stanford it's another way of spreading the word and hopefully or potentially attracting a new audience.