A massive new nationwide initiative hopes to speed up the timeline to find the cause and cure for long COVID-19.
The National Institutes of Health awarded nearly $470 million to build a national study group called the Researching COVID-19 to Enhance Recovery (RECOVER) initiative.
The study will include adults, children and pregnant women. The parent award went to New York University Langone Health which will make more than 100 sub-awards among 30 institutions.
“Is there somehow a persistent viral infection in some hidden reservoir that we have not yet been able to discover that in people with long COVID? Is it a misfiring of the immune system that fails to re-set?” said Dr. Francis Collins with the NIH about working theories of what causes COVID.
The group will consist of 40,000 patients and will study patient symptoms, physical findings and lab results along with reviewing millions of electronic health records. Researchers will use smart phone apps and wearable devices to give them real-world data in real time.
“The diversity of symptoms and presentation leads us to believe that long COVID may not be just one condition” Collins said.
Case counts in schools, vaccinations, deaths and hospitalizations are the metrics that have gotten most of the attention.
“There comes a point in your recovery where you kind of find acceptance that like this might be the new me and I'm just going to have to like learn how to live with this” says Lisa O’Brien who has suffered from COVID symptoms for 18 months.
O'Brien said this initiative proves long haulers are now one a priority group adding “it's just taken so much time for people to listen to us and take us seriously and it's been, that part has been really frustrating.”
She hopes she's able to volunteer in the study.
So, should this have happened sooner? O’Brien says yes adding “we've been screaming about our condition you know since like April of 2020.”