Thread by @patientled

Big news!

We are *thrilled* to announce the $4.8 million in research awards for #LongCovid & associated conditions from our Patient-Led Biomedical Fund today!

These were decided by a panel of 15 patient-experts & we're funding 9 exceptional projects!

patientledresearch.com/press-releases/ 1/

1) A project looking at microbial metabolites as disease-modifying factors in #LongCovid.

2) A project to unravel the pathophysiology of post-exertional malaise (PEM) in Long COVID and ME/CFS, including looking at blood and muscle biomarkers.

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3) A grant to characterize non-restorative sleep in post-viral disease.

4) A project to look at the impact of surgery for stenosis on ME/CFS symptoms. #MESpine

5) A project to look at altered T cell responses in #LongCovid and ME/CFS, including T cell exhaustion.

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6) A deep learning/computational modeling project to identify drugs to repurpose for #LongCovid.

7) A project on microclots, analyzing microclot burden in patients over time and looking at the impact of infection & vaccination on microclot levels.

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8) A deep dive into multi-omic profiling of #LongCovid.

9) A clinical trial on Low Dose Naltrexone (LDN).

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This fund and awarded projects are distinctly meaningful for four major reasons:

1st: A panel of 15 patient researchers with #LongCovid, ME/CFS, & dysautonomia decided how the $4.8m in research funding should be allocated

https://twitter.com/patientled/status/1546919538691903493

(the below + @ales_frost)

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including calling for specific areas of research in the RFP.

This is a change from the typical power dynamic of biomedical research, especially in chronic illness, where large organizations decide where funding should go, and patients have no input into what is studied. 7/

2nd: #LongCovid research has fallen short of its promise to improve patient health & has largely disregarded decades of research into infection-associated illnesses. The awarded projects have an emphasis on impact & are well informed by existing research. 8/

3rd: these projects showcase the many investigative paths that #LongCovid & ME/CFS patients would like to see pursued, including microclots, spinal-structural abnormalities, immunologic dysfunction, microbiome changes, sleep dysfunction, drug repurposing, and a clinical trial. 9/

4th: Each project that doesn’t already have patient representatives on the project will receive 1-2 paid patient representatives from PLRC to inform study design. This will ensure that the lived experience of patients are incorporated in all steps of the research process. 10/

We hope the #LongCovid, #pwME, dysautonomia, and #NEISVoid communities are happy with these decisions, and look forward to sharing the research results as they come out! 11/