• 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.

    To become a member, simply click the Register button at the top right.

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

Janet Dafoe

Board Member
Messages
867
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

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
bYkJQhiwg8gI5dKLEvE6i5N8-Fk_cDZn5pbvVy9-g8VsK05MPAza-k6I9K7JgVTfG__yVwZ3baLDV2DOnMdEYj1w8KAPU0-bQQVElC6Mx7mO2yMy0Imxzc10_136oFGsOKVbhqbAQjtpLbaj_hTJBFpNPTKZoCvUojx4fFt3RDyGEvS6XMotT--sAeaUeWBHe7opvQeSDfAlyl3h2Lc=s0-d-e1-ft

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,
3Z-YaUr9ySCtnO6GqKywNXwq5XiApDoglgpHRoKjhM7RUdCQCw7aR9tl8YBY1pkk2YmNSyeso3e6f-4iKikFHu01f6dulyT7WQXisD8-dkio4ECRy-8IKYCWhIHh=s0-d-e1-ft

Linda Tannenbaum
Founder & CEO/President




B
 

Janet Dafoe

Board Member
Messages
867
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
image.jpeg
 

Ruthie24

Senior Member
Messages
219
Location
New Mexico, USA
@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. :woot:
 
Messages
73
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!
 
Last edited:

Janet Dafoe

Board Member
Messages
867
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
 

Janet Dafoe

Board Member
Messages
867
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