Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

[Janet Dafoe]

Jenny Frankovitch talked about her work on PANS. Pediatric Acute Neuropsychiatric Syndrome, which has many similarities with CFS. Has been thought to be psychiatric, but is post infectious inflammatory (sound familiar?). med.stanford.edu/pans.html #mecfs18

 

[Ben H]

Working Group Meeting on the Molecular Basis of ME/CFS
“So much hope in one room.” - “This is what progress looks like."

Check out photos from the Working Group Meeting on the Molecular Basis of ME/CFS, sponsored by OMF. More than 50 scientists have gathered for three days to give presentations, engage in in-depth discussions, brainstorm new ideas and next steps, and develop targeted strategies to find answers for ME/CFS. Follow the meeting on Facebook, Twitter or Instagram. Share our posts and help build awareness. Please use our hashtag #MECFS18.

View the album now.

If you haven't already, register for the free Livestream to hear the latest research updates at this Saturday’s Community Symposium at Stanford sponsored by OMF. World-renowned scientists will update patients and interested members of the public on the progress towards understanding the molecular basis of ME/CFS and plans for the future.
Only together can we solve this incredibly complex and horrific disease.
With hope for all,

Linda Tannenbaum
Founder & CEO/President




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[Janet Dafoe]

Bob Naviaux talked about the cell danger response, how it applies to MECfs, why suramin should work, and described plan for clinical trial next year. Waiting for suramin source to be ready. #MECFS2018

 

[Janet Dafoe]

Rahim Esfandyarpour updated us in his nanoneedle experiments. He's started testing different drugs, etc. #MECFS18

 

[Janet Dafoe]

Gozde Durmus from Stanford genome center explained her magnetic levitation results and potential for bio marker. #mecfs18

 

[Janet Dafoe]

Mohsen Nemat-Gorgani , who has worked with Ron for 15 years and is a membrane expert, introduced his work on red blood cell deformability and he and his team presented updated results. #mecfs18

 

[Janet Dafoe]

The last two talks were mind blowing. Eric Shaqfeh, Stanford prof of chemical engineering, Juan Santiago, Stanford prof of mechanical engineering. Microfluidic devices using a drop of blood oscillating to measure RBC deformability. These guys are hard core. Joining us! #MECFS18

 

[wingate]

@Janet Dafoe (Rose49) you're making us feel like we're there! Loving the updates.

Just wish I could be a fly on the wall for these discussions.

 

[Janet Dafoe]

These guys are standing here excitedly discussing how to measure YOUR rbc's in a hand held disposable Microfluidic device. They are so awesome. And excited about figuring this out & helping you get better! I'm so moved. At 6 pm. After being here since 8. they're hungry. #MECFS18

 

[Janet Dafoe]

Here's the group: #MECFS18

 

[Ruthie24]

@Janet Dafoe (Rose49)- These pictures of the whole group that you have posted bring tears to my eyes (literally) as I see all the phenomenal intellectual talent that Ron has collected to help all of us. I can never express my gratitude enough. BIG thank you to all of them!! I would send hugs too, but being that a lot of them are engineering types, they wouldn't appreciate them.

 

[Vassie]

This is the moment.

You are changing the course of history.

After so many years of neglect and aversion to this disease, it’s incredibly heart-warming to see that so many outstanding scientists care! I just can’t believe it, it’s like a dream that finally comes to life. You have no idea how happy you make me!

 

[Janet Dafoe]

Good morning! Whitney needed me in the night. Seeing his suffering brought me directly back to the reason we are all here. #mecfs18

 

[Neunistiva]

Good morning! Whitney needed me in the night. Seeing his suffering brought me directly back to the reason we are all here. #mecfs18

Thank you for doing this for all of our children Seeing all these scientists brings hope where there is usually only suffering.

I hope Whitney is alright now, as alright as he can be.

 

[Janet Dafoe]

First up today is Jarred Younger talking about his work on inflammation in the brain. #mecfs18

 

[S-VV]

Here's the group: #MECFS18

This is amazing. It really reminds me of the initial stages of an exponential growth process.

 

[Janet Dafoe]

Great presentation by Cindy Bateman telling the scientists about diagnostic and clinical issues and the results of her recent clinicians summit. Lack of care and understanding. What is needed. Lots of interest, questions, and appreciation. Importance of patient partners #mecfs18

 

[Laurie P]

Thank you, Janet. It's so great to see all the tweets and pictures.

I hope Whitney is doing better today and that you were able to get enough rest last night.

Here is another wonderful speaker

https://twitter.com/i/web/status/1045733262252015617

 

[Janet Dafoe]

Laurel Crosby talked about her work on Heavy metal toxicity, especially Mercury. @mecfs18

 

[Janet Dafoe]

I talked before break. Whitney woke me up last night needing me. When I finished helping him I tried to pantomime about what his dad is doing & the conference. He finally caught on. Then he made motions referring to scientists & doctors coming from all around th world. He wanted me to thank them. Prayer hands and heart sign. I shared this with the group in silence. Moving moment. #mecfs18