Patient Advocacy and Citizen Science in Action ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ ͏‌ 

September Headlines

#SurvivorCorps News Flash #18 / September 23, 2021

Survivor Corps’ Facebook Group is 178,000 members strong
Educating, motivating & mobilizing COVID-19 Survivors, familes & friends to support all medical, scientific & academic research, assisting in the national recovery & advocating to develop a better understanding of COVID-19

 

The Struggle to Define Long COVID

Sept. 20, 2021: ‘Survivor Corps now has 178,000 members – making them the largest grassroots COVID movement in the world.

Founder Diana Berrent meets regularly with government officials, leading scientists, Patient-Advocacy groups, and COVID survivors and their families. Not long ago, she gave presentations to the CDC, NIH, and a White House Coronavirus Task Force – all in the same week.

She appears on podcasts and panels, and sits on a number of covid committees at universities and within government, sometimes as the only patient advocate.’ ~ “Survivor Corps is being asked to peer-review medical research papers.”

 

They Shunned Covid Vaccines but Embraced Antibody Treatment

Sept. 18, 2021: ‘Hospitals had previously been ordering these (Monoclonals) themselves. Now, HHS will decide how many doses each state receives (equitable distribution), based on case rates and use of the treatment.

State governments, in turn, will decide on doses for individual sites. Some states fear that shipments will plummet because of low case rates, leaving hospitals with so few doses that they shutter their programs. ~ ”Involving state governments will create inevitable delays: You’re now adding in 50 new layers of bureaucracy.”’

 

Study to Probe the Mysteries of Long Covid

Sept. 15, 2021: ‘Starting in October, the NIH’s Researching COVID to Enhance Recovery (RECOVER) Initiative aims to enroll between 30-40,000 volunteers over 12 months, from diverse populations in all 50 states. 

Diana Berrent contends there’s a major flaw with the RECOVER plan to enroll newly infected people (at a time when many people are already vaccinated): The study may struggle to recruit participants.

“People who are just now getting Long Covid, because they’re NOT vaccinated - are not the same people who are going to enroll in an NIH longitudinal study.”‘

 

Support Survivor Corps!

Share our mission of COVID-19 Education, COVID Live Webinars and Patient Advocacy with your family, friends and neighbors.
Encourage them to Join our Facebook Group. Follow Diana Berrent on Twitter and
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If you are in a position to support us financially, please donate here. Thank you.

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