Solve ME/CFS Discovery Forum 2017

[Bander]

I received an email today announcing this. The speakers are Ian Lipkin, Vicky Whittemore, Rick Williams, Becky McNell, Zaher Nahle, Maureen Hanson, Ralph Garippa, Ken Blount, Nancy Klimas, Dan Peterson, Elizabeth Unger, Derya Unutmaz, Peter Rowe, Lucinda Bateman, Susan Levine, and Charles Lapp.

The Solve ME/CFS Initiative is pleased to announce the second annual meeting of key opinion leaders in the ME/CFS field. The Discovery Forum is a unique opportunity to evaluate current developments, drive collaborations and collectively address the challenges ahead for ME/CFS. Discovery Forum 2017 will bring together leaders in academia, government agencies, medical facilities, biotech companies, and prominent research institutions.

The Forum will take place on Saturday, October 14 in Washington DC.

Flyer available at https://storage.pardot.com/192652/25989/discovery_forum_final2.jpg.

Video highlights and live twitter coverage will be available. Be sure to follow us on social media to learn more.

 

[Groggy Doggy]

I received an email today announcing this. The speakers are Ian Lipkin, Vicky Whittemore, Rick Williams, Becky McNell, Zaher Nahle, Maureen Hanson, Ralph Garippa, Ken Blount, Nancy Klimas, Dan Peterson, Elizabeth Unger, Derya Unutmaz, Peter Rowe, Lucinda Bateman, Susan Levine, and Charles Lapp.

Excellent mixture of folks to discuss the upcoming challenges.

Edited to add:

Are ME patients included in the speaker list?

 

[Alvin2]

Not being done through OMF?

 

[Bander]

Not being done through OMF?

No, the Solve ME/CFS Initiative is a different organization. It used to be called the CFIDS Association. It sponsors some research, but nothing as extensive as what Ron Davis does at OMF. They are also involved in advocacy and working to get more government support. They've done some great webinars. In the 2016 series they had talks I really enjoyed by Chris Armstrong, Maureen Hanson, Jarred Younger, and others.

 

[wastwater]

It would be great if they could identify what is in the serum,on the symposium it said it could be an antibody

 

[MEPatient345]

SMCI does do an extensive amount of funding for translational research ie. to develop hypotheses that can then be put forward for NIH funding (since nih will only fund working hypotheses). That is their primary mission.

Here’s one newsletter that explains some of their 2016 research grants and other work:
https://issuu.com/solvemecfsinitiative/docs/chronicle_020217_epub?e=17941417/44997562

Lots of other information on their website. http://solvecfs.org/archive

 

[znahle]

Greetings all, has been a while...best wishes to all my friends here.

We are very fortunate to do so many things despite our limited resources. A little about SMCI below Alvin2 and Bander, we fund promising research around the world and also conduct our own research investigations towards filling the knowledge gaps (we refer to those programs as SMCI directed, dashboard below)...lots of things are happening and if you are not aware of what we do then this is on us not on you...we will try to do better communicating our work. Follow us through our e-newsletter (Research 1st) and the Chronicle, our quarterly publication as well as SMCI this week to stay up-to-date.

Looking forward to announcing the Ramsay 17 awards soon (very impressive group as well this year)...but we can never do enough and we want for us and others to do more.

I have attached some brochures (PDFs) about our work as well. Hope you can take a look.

Love to all!
Z

 

[Groggy Doggy]

Thanks @znahle

It's great to get some balance here on PR, regarding directly communication from other non-profits for ME. From what I read, Solve is focused on being both proactive and positive advocates for ME? I am asking this because I have a distaste for orgs that focus attention on blaming the US goverment; for example implications that our US government is conspiring against us in some devious plot. Also, I am not a fan of nasty tweets or petitions sent to Dr Collins. And, my other concern is based on a COI (conflict of interest). Will Solve be supporting, promoting, or profiting from vitamins/supplements/"miracle drugs"? Will Solve sponsor or promote "for profit" ME bloggers with an interest in selling such products for financial gain?

Sorry to be so direct, but these issues are weighing heavily on my mind lately.

Thank you.

 

[znahle]

Thank you Groggy Doggy
you are speaking my language...

- I understand the injustices in this space but I am never an 'injustice collectors'. I am a doer we do things, we change things and we alter the status quo based on a prioritization scheme and a clear strategy...
- I am very sensitive to any form of gains on the back of patients...never on my watch or anyone here at solve. There is no 'miracle drug'. It is a complicated pathophysiology and we are working on multiple fronts to find treatments and cures...I believe in science and allergic to quackery. Anyone can claim anything...the proof is in the pudding like they say!
- I wish I can be here more often but I can't
- yes we are proactive and positive and us at solve like it this way
- znsolve is my twitter handle and never a nasty tweet...doesn't help. Assertive, constructive and not malicious: those are the tweets that help

Best,
Z

 

[BurnA]

I wish I can be here more often but I can't

Thanks for your time here, please drop by whenever you can.

About the discovery forum - can you tell us who you expect to attend in the audience - who will be listening to all the great speakers ?

Thanks

 

[AndyPR]

A few questions answered by @znahle via Facebook video - https://www.facebook.com/SolveMECFSInitiative/videos/10154940527922108/

 

[Cinders66]

I think solve MECFS are doing great stuff. I look forward to seeing some of the videos. Thanks for engaging @znahle

Regarding negativity to NIH, whilst it's great to see a new era emerging in USA MECFS research I personally am puzzled as to why nih isn't pitting in more money immediately e.g. Funding other centres when the excellence is there and they have neglected the field so long, perhaps that will be raised if they are attending the forum.

@Groggy Doggy
Maybe I'm missing humour or it's a serious point for a debate I'm not engaging in but I think PR is a great forum and the people who've run it and moderated it have generally done a great job.

 

[AndyPR]

@Groggy Doggy
Maybe I'm missing humour or it's a serious point for a debate I'm not engaging in but I think PR is a great forum and the people who've run it and moderated it have generally done a great job.

It was a great forum, the board's recent bizarre decisions has lead to us having no moderators at the moment, unless things turn around then PR is likely to go downhill very rapidly.

 

[Jo Best]

Hope this isn't off-topic to post the link to this article by Fane Mensah, which I read today, as an example of the collaboration and support for international research by Solve ME/CFS (thank you @znahle and all at Solve) https://www.antibodygenie.com/2017/08/15/research-project-boosted-scientific-career-phd-student/

I was also invited to write a review in the fatigue feature of the NCCN and received a Ramsay award by Solve ME/CFS Initiative, a charitable organisation from the US dedicated to ME/CFS. This grant is part of a cross-disciplinary project with Melbourne University, combining the field of Immunology (B-cells) and metabolism “Immuno-metabolism” (collaboration).
https://www.antibodygenie.com/2017/08/15/research-project-boosted-scientific-career-phd-student/

 

[Gemini]

About the discovery forum - can you tell us who you expect to attend in the audience - who will be listening to all the great speakers ?

Dr. Nahle's answers--speaker presentations will be videotaped and made available to all

Attendence limited due to size of venue.

His Facebook video referenced by @AndyPR above has more details.

 

[BurnA]

Dr. Nahle's answers--speaker presentations will be videotaped and made available to all

Attendence limited due to size of venue.

His Facebook video referenced by @AndyPR above has more details.

Thanks.
What i was really wondering was, who do they expect to attend, as in what influence these people might have.

 

[Sasha]

I've started a new thread to bring attention to the live coverage (the event has just started):

http://forums.phoenixrising.me/inde...orum-saturday-14-october-live-coverage.55218/