An announcement on social media gives information about PolyBio Research Foundation’s Spring Symposium states:
“Excited to announce the PolyBio Spring Symposium. It will take place online May 17 from 12 -5 pm ET. Join to hear PolyBio-supported investigators give short updates on their projects.”
The announcement lists the following speakers:
Michael Peluso MD
Amy Proal PhD
Michael VanElzakker PhD
Morgane Bomsel PhD
Diane Griffin PhD
Gene Tan PhD
John Wherry PhD
Lael Yonker MD
Michela Locci PhD
Rigel Chan PhD
Sara Cherry PhD
Petter Brodin PhD
Esen Sefik PhD
Timothy Henrich MD
Nadia Roan PhD
Steven Deeks MD
Maayan Levy PhD
Chiara Giannarelli PhD
David Putrino PhD
Christopher Dupont PhD
Victoria Cortesvascos PhD
Resia Pretorius PhD
David Price MD PhD
Link to register: https://us02web.zoom.us/webinar/register/WN_Od4HsQn-Thq87EreSse-6w#/registration
It will be recorded. The recording of last Fall’s symposium can be found HERE.
What is PolyBio doing?
PolyBio’s website offers some information about their projects, but I found this series of posts by Amy Proal from April 13, 2024 enlightening.
This thread was in response to a comment that PolyBio has abandoned ME/CFS research. Thread found HERE.
“That is not correct. We are working very hard on ME/CFS projects in addition to LC, and almost every day we work with teams to determine how more of our LC projects can be pivoted to ME/CFS in the future”
“ME/CFS projects include this collaborative study determining immune activity, microclotting and other infectious parameters in ME/CFS patients with peripheral neuropathy:”
https://polybio.org/projects/immune-activity-and-microclotting-in-long-covid-peripheral-neuropathy/
“This study of neuroinflammation via PET imaging and imaging to document changes in cognitive control (brain fog) in ME/CFS:”
“This collaboration in which ME/CFS tissue samples are being analyzed by a a new metagenomics pipeline:”
https://polybio.org/projects/the-organism-identification-pipeline/
“This study of deep profiling of pathogen antibody reactivities, immune factors and autoantibodies in ME/CFS blood and cerebrospinal fluid:”
https://polybio.org/projects/the-me-cfs-pathogen-protein-antibody-study/
“Patients with ME/CFS are some of the central participants in this study using ultrahigh resolution imaging to look for structural abnormalities, CSF flow issues and related dysfunction:”
“This study is delineating coagulation, innate immune and vascular blood-based biomarkers in patients with ME/CFS:”
“This clinical trial will determine if the supplement Lumbrokinase can improve hypercoagulation and symptoms in ME/CFS:”
https://polybio.org/projects/lumbrokinase-longcovid-me-cfs-clinical-trial/
“Our PolyBio team - in concert with scientists at JCVI and Harvard - submitted a center grant application to NIH for 2 years in a row. In both instances the grants were rejected for reasons beyond our control”
“I spent weeks of my life alone writing those grants, working late nights and weekends. Overall I would personally never abandon ME/CFS nor would PolyBio ever leave it behind. Please have patience with your comments about us.”
Note: ME/CFS has various meanings. See, ME/CFS is an umbrella term, for more information. My observation is that PolyBio recognizes the importance of careful stratification and the value of using patient selection that utilizes the International Consensus Criteria (ME-ICC).
Answers are coming
The fastest way for people with myalgic encephalomyelitis to get proper care is for researchers to look in the right places. For decades it has felt like researchers were trying to find the fire in the basement by looking in the yard… in the dark… with a faulty flashlight.
In my opinion, success in this field requires careful patient selection and recognition of the neurological damage as well as the ongoing viral assault that has been suspected for decades.
Polybio seems to be finding ways to get into the basement and shine more light. I hope they get more funding!
Colleen
P.S.: In case anyone wants to donate to Polybio - link is HERE.
Information provided here or in comments is not to be considered medical advice
Thank you for this. It should also be noted that if anyone has a few spare £££ or $$$ PolyBio has a 'Donate' button. I'm also mindful that Mike VanE has already commented on Twitter (X) that he doesn't expect people with chronic diseases to be donating per se. He's clearly a decent guy. But many of us do like to contribute when we see proper science in action, so I thought it was worth mentioning that option. I have no connection to Polybio other than being a grateful patient!