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Our preprint

“we also developed two blood-based molecular assays targeting BECLIN-1 & pSer258-ATG13 as objective biomarkers of autophagy function, which may facilitate future stratification of responders & guide precision therapeutic approaches in this highly heterogeneous population.”.

In our #rapamycin pilot, we developed 2 biomarkers to measure autophagy function & showed that they correlate to positive response in #MECFS. Our bold goal is to generate a biomarker test to predict likely responders to rapamycin. We’re on our way to a 1st for #ME: test-to-treat!

“Overall, our results show that post-infectious #MECFS patients had significantly better responses to rapamycin than non-viral #MECFS patients based on the BAS score, SSS inventory, MFI, and SF-36 criteria.” #ME #LongCovid #POTS

#MECFS patients with a history of EBV responded better to #rapamycin when compared to patients with non-viral onset, an important finding in our Phase 1 preprint. #ME #LongCovid #POTS

The dose reference is now corrected online in the preprint.

Please note the dose in our study is 6mg/ week, not 6mg/kg. There is a typo in one reference in the preprint which we will correct in the next round. TY to those who pointed it out.

Expect more updates soon! Our partnership with @agelessrx will help lead us to new therapies (and combinations) using FDA-approved agents in placebo controlled trials. #ME #MECFS #LongCovid Sign up for updates:

In Feb 2025 we expanded our original trial and are happy to report that enrollment is soaring, thanks in large part to a partnership with @agelessrx who is providing clinical services, centralizing the drug supply and other critical elements. 8/9

This trial is not placebo controlled & we understand the limitations; however, our goal is to develop a predictive diagnostic to objectively identify potential responders to therapy. This would be helpful in #ME clinical practice & future double blinded placebo controlled trials.

We joined with David Kaufman, MD who was using rapamycin in #MECFS and together with this new hypothesis we initiated our trial back in Nov. 2023. Our clinical trial team has grown to 8 clinical sites: @GrachStephanie @BatemanHorne, Dr. Peterson, Dr. Chheda and more. 6/9

We got NIH funding to further explore the mechanism of mTOR mediated autophagy disruption as it relates to key #MECFS symptoms like #PEM and published this work. 5/9.

Our goal with this observational trial was to see if low dose rapamycin could change blood markers of autophagy function, specifically pATG13 based on our previous publication which found it to be elevated in a subset of #MECFS patients 4/9.

Autophagy can be inhibited when mTOR activity is high. Rapamycin helps induce autophagy function. This is critical for the removal of metabolically inactive proteins and recycling mitochondria. #ME #MECFS #LongCovid 3/9

We found that a significant proportion of patients who finished the 3 month trial period of rapamycin (an mTOR inhibitor) showed improvements in both clinical features of the illness like #PEM & saw improvement in blood based markers of autophagy function

We are excited to share some early results of our low dose rapamycin project in #ME, in its pre-print version here. TY to @ggottschalkPhD, @AvikRoy74969264 & Dr. David Kaufman for leading it, to all our collaborators & to study patients! #MECFS 1/9.

RT @ggottschalkPhD: We @RedefiningMECFS and @AvikRoy74969264 are excited to share some early results of our low dose rapamycin project in i….