CFS Research Center at Stanford Second Annual Community Symposium Sept. 29-2018

From OMF's Facebook page

Symposium update: We are proud to announce Dr. Øystein Fluge will be the keynote speaker at the second annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, on Saturday, September 29, 2018.

Register now for the free Symposium livestream: http://bit.ly/2MN0lq7

Dr. Fluge has been courageous in pursuing his observations on the effects of rituximab on ME/CFS patients when that issue was not the planned focus of his investigation. He has now completed a double-blind, well-controlled, multi-center clinical trial on the effects of Rituxamab, and will discuss those results upon receiving notice of acceptance of his publication. He has continued to follow where the data lead him into cellular and molecular analyses. This kind of excellent, open-minded science is just what we need in our quest for an end to ME/CFS.

Dr. Fluge is the Senior Consultant supervising the ME/CFS research group at the Department of Oncology and Medical Physics at the University of Bergen, Haukeland University Hospital, Bergen, Norway. Drs. Fluge and Mella work together on the Norwegian Rituximab and cyclophosphamide trials with ME/CFS patients.

We're looking forward to an exciting and informative event, and we encourage you to join us via livestream! #MECFS18

Find more event details about the Symposium here: http://bit.ly/2u59Eaq

Learn more about the presenters here: http://bit.ly/2nEBk2u

 

(hope he steers clear of any ladders this time!)

 

Thread merged

OMF: Open Medicine Foundation Delivers Hope to Millions of Patients

https://www.omf.ngo/2018/09/20/omf-sponsors-second-annual-community-symposium-stanford-university/

For Immediate Release

Sept. 20, 2018 (Los Angeles, CA) – Open Medicine Foundation (OMF), the premier nonprofit organization investing in research to cure myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), sponsors the Second Annual Community Symposium on the Molecular Basis of ME/CFS on September 29, 2018, at Stanford University. This event is expected to draw more than 300 scientists, clinicians, patients, and caregivers as well as over 3,000 attendees globally via livestream.

OMF is working to put an end to ME/CFS – estimated to afflict 20 million globally — by funding a global research effort to identify diagnostic biomarkers, effective treatments, and ultimately a cure. As part of its efforts to foster open, collaborative research, the Foundation is funding a three-day scientific working group meeting in which over 50 world-class scientists with diverse expertise will share their latest results and chart a path forward, followed by the Community Symposium, at which highlights of these results will be shared with the public...

 

Great to see so many researchers but the progress is terribly slow :-(

 

Yes but I often think if there was no OMF..we would have very little going on. Fingers crossed it won't take too long to come up with some answers...

 

Where's this hope they speak of? My delivery must have gone missing.

 

What can we expect from the symposium?

 

Agree. Where the heck would we be without the enthusiasts? But no wonder people are getting impatient. We’ve heard for years and years expressions that now it is happening, we will know a whole lot more and offer patients “something” within 10 years, within 5 years and so on. These statements been naive and premature with almost nothing in place. Curiosity and skill all alone is not enough. Optimism is important, but the lack of everything and lack of doing something about it given prevalence and burden, probably been harder than imaginable.

But maybe now is the time to express within 5-10 years? It is hard to say that things are much better now than x years ago, but maybe there’s been a shift last 5 years? Interest is growing, infrastructure better, cooperation better, but funding still very bad. Something very substantial have to happen with funding if we’re to experience answers within our lifetime. Another 10 years may be short in history, a lifetime and maybe to late for many patients. I really appreciate the OMF symposium and such initiatives, but given history and the bad frame conditions, I remain quite conditionality optimistic. But many thanks to OMF and other initiatives that never give up and invest so much of their time and knowledge without acceptable frames.

Won’t do to many comparisons with HIV/AIDS (directly deadly and they had a pathogen to look into), but look where we have come from early 80’s til today? No cure, but so much knowledge and proper treatment. The investments in USA alone been approx 33 billion dollars year after year after year......Funding is essential, funding give results.

 

I'm afraid I have become cynical about the time scales given, as they seem to mostly coincide with the length of time for which the funding is sought/given.

 

Indeed. Perhaps we need to ask them to make a formal wager on such claims!

 

I’ll join the cynics...trouble is just a whiff of brain inflammation and I get overexcited. I’ve learnt to be cautious with the overpromising OMF. Hopefully as mentioned with extra funding they can start formally reporting something....even if it’s negative.

Whatever we are still years off ....so perhaps when I’m in my sixties I can enjoy a more active lifestyle than when in my 40’s and fifties? I feel 80 most of the time so that’s 20 years back?

 

I reckon this starts at 5pm UK time (9am Pacific time) and will finish at 2am (well past my bedtime!).

Has a programme been published (as opposed to a list of speakers)?

 

Are any forum members going to this symposium?

 

I would guess @JaimeS
Probably @dave30th?

 

I’m not able to find a Scedule... Does anyone know what time the different speakers will be on?

 

@Trish thank you. That is the only thing I could find as well...

Hopefully everything will be available on YouTube afterwards, so that we are not depentent on watching it live.

 

Yes I'm here. You can find my tweets on the conference starting around the second day.