$1.15 BILLION in research for Long COVID!
Artwork by Delia Rogers
Congress announces $1.15 BILLION in research for Long COVID!
Long COVID patient advocacy is finally paying off. As of January 12, Congress is allocating $1.15 BILLION to the NIH for the study of Long COVID, and MIS-C in children! This incredible win is due in large part to the tireless advocacy of Body Politic, Patient-Led Research, and other COVID patient advocacy groups, as well as Solve M.E., an organization working to accelerate the discovery of safe and effective treatments for ME/CFS, who authored a letter Body Politic co-signed asking Congress for increased funding for research into Long COVID. For more information on exactly how these funds will be allocated, check out the below interview with Research!America and NIH Principal Deputy Director, Dr. Larry Tabak.
We want to give a special shout out to Body Politic board members Alison Sbrana, Angela Meriquez Vázquez, and Fiona Lowenstein, who have been working on Body Politic's advocacy committee, as well as Lauren Nichols, Hannah Davis, and Chimére L. Smith, who shared their stories and findings at an NIAID workshop on Post-Acute Sequelae of COVID-19 in early December, sparking widespread conversations about the need for funded research on Long COVID. This is a win for all Long COVID patients and our allies!
NIH updates eligibility for Long COVID study...
In another very important advocacy win, the NIH has officially changed the protocol eligibility for their intramural Long COVID study to include a cohort of patients who were not able to test positive for COVID via a diagnostic test. This is a change Body Politic has been advocating for since October when the NIH’s study was first announced, as COVID patients without a positive test result have been largely overlooked by clinicians, researchers, and the media. Note that patients are still required to have a clinical diagnosis, and that those without serological proof of COVID (a positive COVID test) will be admitted to an additional cohort, not the major cohort. We believe this is still a step in the right direction.
The NIH’s inclusion of a cohort of patients without positive COVID tests is a hopeful indication that science and medicine may finally be accepting the reality that many COVID patients were unable to test positive due to testing access and reliability issues. This is especially the case for COVID patients who became sick in the early days of the pandemic, but remains a problem today. The American Medical Association has explicitly stated that “serology tests should not be used as the sole basis of diagnosis of COVID-19 infection,” and the Infectious Disease Society of America has warned that “not all patients with SARS-CoV-2 infection develop an antibody response, and so a negative serologic result does not exclude past infection.”
Dispatches from the Support Group
Moderator Spotlight
Body Politic’s COVID-19 support group is managed by a group of volunteer moderators, who also utilize the group as members and Long COVID patients. Meet one of our new moderators, Sandra L. Washington...
Sandra L. Washington
Chicago, Illinois
What do you do for work?
On a full time basis I am currently a Community Support Specialist for Blue Cross and Blue Shield of Illinois. On a part time basis I am a first time author who is scheduled to release her first book in the second half of 2021. I have an extensive background in Healthcare Administration and Community Care.
What made you want to be a moderator for Body Politic?
I have been in Body Politic for a few months. My experience in the healthcare field has taught me that many people fear the unknown, and [COVID-19] is all about the unknown. The most impactful way to remove that fear is to have someone who is an empathetic listener and who can provide insight on various topics, which is why I wanted to moderate.
Where can members find you on Slack?
My Slack handle is “@Sandra L Washington moderator.” My favorite channels are #BIPOC, #Financial-and-Legal and #medical-advocacy.
What is your biggest hope for Long COVID patient advocacy?
My biggest hope for Long COVID is that the topic of healthcare inequities and scientific data become intertwined into one discussion, because then a real move towards a sustainable cure can begin.
A Patient’s Story
Check out Body Politic Support Group member Lauren Chava Rose’s personal essay on self-love and acceptance during Long COVID (now up on Body Type)!
“Clearly, I am not who I once was. My face is thinner now. I have lost most of the muscle in my arms. My lungs have undergone a complete metamorphosis. Yet, amongst all of these physical changes, there is a glow in the center of my eyes that wasn’t there before. It’s the glow of a woman who saved her own life and is telling the world about it. That is painful, and that is beautiful.” – Lauren Chava Rose
Interested in submitting a personal essay to Body Politic’s blog, Body Type? Email info@wearebodypolitic.com for more information.
In case you missed it...
Body Politic is in the news!
“‘I’m still at half-capacity:’ long Covid Sufferers reflect on a brutal year,” The Guardian
““Those with chronic illnesses, and women in particular, need to be listened to by the medical community and offered more support, while research and innovation in the area is urgently needed.”
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Thanks for reading the Body Politic COVID-19 Support Group newsletter. Open to all, this newsletter seeks to provide COVID patient allies, healthcare professionals, journalists, and other interested parties with information on our COVID-19 Support Group. Because the group is currently only open to COVID patients, survivors, and their caregivers — a decision our team made to foster a culture of trust within the online community — many of the amazing insights the group provides have not been shared with the outside world. In this newsletter, we will give you a look inside this robust support group, by summarizing big discussion themes, sharing advocacy updates and links to articles our group found helpful, and including personal anecdotes from group members. Click here to get the newsletter sent directly to your inbox!
For more info on the group, email info@wearebodypolitic.com
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