The Black Long Covid Experience
Empowering Black Americans
Affected with Long Covid.
Get You Some Clarity about Owning Your Blackness in Long Covid and ME/CFS Organizations!
Chimére is advising Black people living with Long Covid to consider if Long Covid and/or ME/CFS organizations are invested in Blackness before they contribute to their donation fundraisers.
If you’re Black, have received donation requests from organizations like these and many others, and are considering hitting the donation button, now is the time to ask yourself:
Do I feel truly represented by this organization on their websites, informationals, etc.?
Are there Black board members, division leaders, and staff that have been given a voice and power to lead campaigns and events — not just one person but at least two or more?
Have I been personally invited to join their organizations by various methods of communication (i.e. emails, social media, etc.)?
Am I able to safely integrate into these organizations with their acknowledgment of Black heritage, history, and culture in relationship to science and medicine
Can I rely on these organizations to accommodate my one-time financial support request to purchase medications or essential items?
Are my skills and talents being utilized in a diversity-conscious and healthy manner? Or am I just serving in an empty role to fill a race and ethnicity requirement
What are the organizations’ responses when I inquire about the inclusion (or exclusion) of Black participants in Long Covid and ME/CFS meetings and events?
Many Long Covid and ME/CFS non-profit organizations are experiencing the same fate. The days are gone when they received large amounts of money (up to the millions) from the National Institute of Health and other large donors to educate and advocate for all of us. And just like us, they need M-O-N-E-Y.
Guess who they’re going to look to fill their war chests? You and I. Us.
The games have already begun. Within seven days, I received emails from both #MEAction and Patient-Led Research Collaborative (PLRC) asking for donations. Before we* (these organizations and I) became pawns of the federal government politicizing Long Covid and other chronic, disabling health conditions, everyday people like us were donating our hard-earned $10s, $20s, and $50s to keep these organizations afloat.
This time around, guess who will not be donating one dime? Me.
Why? Because I don’t consistently see or feel me, my Blackness, or any effort to engage in my race or culture in their efforts to educate people on Long Covid and ME/CFS.
Note: The thoughts and feelings expressed in this The Blackest Side Podcast episode video are my own. Please do what makes you most comfortable and spend your money in places that serve your highest good — and that of others in community with you. Don’t go ‘round tellin’ anybody that “Chimmy said don’t give to them!”
Nope, I’m just telling you what I am going to do.
Black Folks Living with Long Covid (Yourselves, Families, and Communities)…
Get You Some Therapy!
Get You Some Long Covid AI!
Get You Some NYX Pro Fix Sticks!
Get You Some Clarity about Owning Your Blackness in Long Covid and ME/CFS Organizations!
Get You Some Dental Work!
LISTEN UP!
Innovation…Where?!
The Recent Keystone Symposia’s Meeting,
Long COVID and Other Post-Acute Infection Syndromes,
was Not Innovative or Racially Diverse.
“Keystone Symposia is dedicated to supporting all generations of research leaders, including through scholarships, travel awards and career-development opportunities for students and post-doctoral fellows who comprise approximately 40% of meeting attendees. The Program Enrichment portfolio additionally enhances each scientific conference through programming designed to build professional skillsets, showcase innovative scientific viewpoints and perspectives, and support the life-science workforce across all levels.”
in·no·vate (verb) — make changes in something established, especially by introducing new methods, ideas, or products.
The recent Long Covid and Other Post-Acute Infection Syndromes meeting in New Mexico failed to include racial diversity — specifically Black Long Covid experts — at their event in early August and offer amenable and affordable options for the chronic illness and disabled communities. While Hannah Davis, one of the meeting’s Scientific Organizers, relayed that this event was primarily one focused on academia, there was no clear explanation why there were not many Black physicians, patients, or organizers in attendance at an event that deems innovative scientific research an important mission. This also does not clarify why only familiar Long Covid experts who helped introduce the severity and research of the Covid-19 and Long Covid in 2020 were invited to lead, organize, and speak at a meeting during a time when racial diversity and healthcare equity is as dire in science and medicine as ever.
This meeting was not innovative; it was clinically lazy, racially and ethnically tone deaf, and riddled with an exclusive familiarity that is not conducive to new paths of Long Covid treatment. As long as the Long Covid community continues to accept this type of behavior, lives will continue to be devastated and possibly lost.
New Discussion Series Coming in July 2025.
‘What I Wish White People Knew about My Life as a Black Disabled Activist’
Moderator, Long Covid activist, and founder of the Black Long Covid Experience, LLC, Chimére L. Sweeney, will use virtual media to lead two to three live sessions that welcome collaboration and engagement with Black disabled activists and/or people – through thoughtful, witty, honest discussion. From their unique vantage points, these sessions will address white activists, chronic illness organizational leaders, and those who have the privilege and capital to lead advocacy events and other structures, to critically examine the effects of racism, separatism, and other forms of exclusion that potentially hinder the overall goal of disability justice and promote discrimination.
Grief Can Affect Your Bout with Long Covid.
How, BLCE?
It has already been proven that Long Covid can cause severe mental health and psychological issues including depression, anxiety, sleeplessness, fatigue, PTSD, panic attacks and more.
But experiencing the failing health and/or death of a loved one can also exacerbate these and other symptoms.
Read BLCE Founder, Chimére L. Sweeney’s first-hand account of this in her recent Substack post:
What Tamara Said, as she shares the loss of her Auntie Dee.
Acknowledgment of the Passing of
Decarol Smith
Thank you for your outpouring of love and care in the loss of my precious Auntie Dee.
For two years, she bravely fought stage four uterine cancer. I’ve never seen a more dedicated soldier in the cancer fight than her.
Sadly, about eight weeks ago, she began to decline. She slept a lot, lost her fine motor skills, and barely talked.
The last time I saw Auntie Dee, she slept the entire time. I could tell she knew I was there because her body jumped at the sound of my voice. My world feels smaller and emptier without her on the Earth. She was an Aunt’s Aunt: cool as hell, smart, loving, and kind. Every single one os us deserves an Aunt Decarol.
Thank you again. Please continue to screen regularly to detect cancer or any chronic illnesses early. Keep my family in your prayers and loving thoughts.
Love, Chimére
A Great Look: NBC NEWS NOW
Showcased the
Black Long Covid Experience!
Long Covid…
FIVE YEARS LATER.
Watch
Chimére on
NBC News NOW on Hallie Jackson NOW.
Photo Courtesy: miodrag ignjatovic, 2025
A health professional is filling out paperwork for a patient with red nails who is submitting a health insurance card.
Call Your City Council, Congressional, and Senate Leaders to Ask Them to Consider What Will Happen if You are Unable to Access Healthcare and/or Disability Benefits.
Happy Black History Month!
We Celebrate and Honor Black Communities with Long Covid.
The Black Long Covid Community is Black History!
Join BLCE from
Monday, February 10 through Monday, February 24
as we honor and observe
Black History Month, the annual celebration of Black culture, achievement, and community.
There will be 10 days of activities. Please feel free to share these with your social media networks.
Instructions are here.
Impulsive, Uncontrollable Outbursts are REAL!
Long Covid causes brain damage or #neurospicy behavior that may be similar to having a stroke or a traumatic brain injury (TBI). It may change the composition of the brain.
When this happens, we can experience impulsive, uncontrollable emotional and verbal outbursts.
While neurospicy is a trendy name and label, it is so important that Black people with Long Covid seek mental health support from a professional who treats patients with brain damage and psychological issues due to a viral condition, like Long Covid.
Photo Courtesy: Chimére L. Sweeney, 2024
Chimére, Director of The Black Long Covid Experience, shares examples of her neurospicy brain damage from her Covid-19 infection in March 2020 that causes her verbal outbursts
She is a Black woman with a faded short haircut with a dark pink tank top and brown-rimmed glasses.
Introducing Long Covid Posties —
Postcards to Send to Your Long Covid Tribe!
“This is our national truth: America would not be America without the wealth from Black labor, without Black striving, Black ingenuity, Black resistance.”
Photo Courtesy: LaylaBird, 2020
A Black woman with a white sweater and a black and orange head wrap. She is smiling with her hands clasp together to signal joy or happiness in front of a laptop .
It’s About Time!
Welcome to The Black Long Covid Experience (or BLCE): a trusted space offering Long Covid information, resources, and support for you and your loved ones.
We are also a compassionate consulting business dedicated to educating the public on the implications of Black Americans with Long Covid and empowering Black communities to advocate for consistent health outcomes.
Photo Courtesy: Washington Post Live, 2024
Chimére is a Black woman wearing a black face mask, denim light blue dress with a gold necklace and short haircut, sitting in the middle between another Black woman and Latina woman.
Trusted. Consistent. Competent.
As a disabled activist and Director of The Black Long Covid Experience, Chimére L. Sweeney draws from her own journey with Long Covid, advocating for equitable medical care and policy change. As a retired Maryland teacher, she deeply connects with Black urban communities and understands their distinct health needs.
Photo Courtesy of Niphon, 2021
Description: a white Long Covid sign with the
light teal Covid-19 graphic and an iridescent background.
Comprehensive Education that Will Help Define Long Covid for Black Communities.
We believe the first step to receiving comprehensive Long Covid care is collaborating to help you define the condition for yourself —and share that understanding with those you care about. Once you grasp how it affects you, you'll be empowered to advocate for and access the right medical care.
Photo Courtesy, SDI Productions, 2020
A masked Black adult male aids a Black young boy in putting on his mask.
Support for Communities.
Long Covid can be frustrating and lonely. At BLCE, we are committed to planning virtual events that are inclusive, educational, and honor your experiences and time. Our goal is to provide pathways to friendships, income, and comprehensive medical care
We Would Love to Hear from You!
Say hello. Or book us for a service or educational course.
We’re here for you.
Please allow 24-48 hours to receive a response.
