Long COVID Essentials: a new resources series

We are excited to announce Long COVID Essentials, a new collaboration between The Sick Times and Long COVID Justice, a project of Strategies for High Impact.

Over the next several months, we’ll be publishing over 30 resource sheets that provide foundational information about navigating Long COVID. Each sheet can be printed and/or shared as a digital PDF. Whether you’re newly experiencing confusing symptoms, have had this disease for years, or are helping others in your community, Long COVID Essentials will help you support yourself and your community.

This series is designed by and for people with Long COVID and associated diseases. Each resource sheet has been reviewed by people living with Long COVID and/or caregivers, and by medical experts who provide Long COVID care.

Check out the series here

In the absence of public health support and guidance from our government and healthcare systems, we hope these resources will support you in taking care of yourself and your community. We’ve seen the attention of the media and leaders wane, funding disappear, and misinformation spread — even as the overlooked impacts of the COVID-19 pandemic and Long COVID crisis remain widespread. And these impacts are hitting hardest in already marginalized communities.

Our work remains as urgent as ever, and we’ll keep bringing information to the fight for pandemic justice and care for all. The stories and experiences of people with Long COVID must be told, believed, and prioritized!

We encourage you to share Long COVID Essentials with healthcare providers, community leaders and organizations, mutual aid groups, on social media, and more.

To stay informed of when new resources are published (and much more!), join our list.

Long COVID Essentials is part of the health education component of our pilot Needs Assessment and Action Project (NYC).

Project news: BIPOC Fellowship and Long COVID Communicators program

Updates from Long COVID Justice’s BIPOC Fellowship and Long COVID Communicators program

As we approach year 5 of this ongoing pandemic, facing the possibility of many more in our lifetimes, we recognize and highlight that pandemics like these have disproportionately impacted already marginalized communities. 

These disproportionate impacts are driven by the ongoing structural marginalization of Black, Indigenous, and people of color and others already politically and structurally marginalized. Our BIPOC Fellowship and Long COVID Communicators program aims to interrupt the marginalization of BIPOC voices in the Long COVID conversation, and to support people living with Long COVID and Associated Conditions (LCAC) to tell their own stories, shift narratives, and participate in advocacy around the issues that impact their lives and communities.
 

This project is currently in its second year, and provides material and capacity-building support to Black, Indigenous, and people of color disability justice activists, artists, and researchers doing work, organizing, and/or who are living with Long COVID and associated conditions. BIPOC Fellows build community and relationships, participate in a fully-funded communications training series, get 1:1 support for publishing op-eds and other writing, and deepen communication and narrative skills, increasing the visibility and power of BIPOC voices in the Long COVID landscape, so that the conversation more accurately reflects those most impacted by LCAC.

Highlights include:

  • Presenting at a webinar with the American Association on Health and Disability

  • Helping to plan and implement advocacy strategies for a meeting with the U.S. Centers for Disease Control (CDC)

  • Sharing patient perspectives with WebMD

  • Presenting about patient experience and disability in various public health and activist webinars and in university classrooms.

  • Receiving a mini-grant for a project titled “Breathing for Justice: Exploring the Intersections between Long COVID and Racial Justice”

  • Publishing essays as part of The Color of Long COVID series by DIsability Visibility and The Sick Times

  • Working with the Narrative Initiative’s WordForce Program to advise on and help draft a Long COVID style guide

  • Training with History Moves at the University of Illinois-Chicago as Narrative Architects for our Listening for the Long Haul oral history project, which has produced 300 hours of oral histories from people living with Long COVID and Associated Conditions (LCAC)

  • Acting as patient reviewers for the Long COVID Essentials, a resource series produced by Long COVID Justice in partnership with The Sick Times

  • Being interviewed for a video series on Long COVID with the World Health Network

  • Interviews and media appearances for: National Geographic and The Wall Street Journal – and much more!

S4HI endorses the Long COVID Research Moonshot Act

Strategies for High Impact (S4HI) has joined over 55 other groups to endorse the Long Covid Research Moonshot Act, which provides $10 billion over 10 years for the U.S. National Institutes of Health (NIH), plus additional funding for related programs.

This bill will invest in much-needed research, treatment, care, and health education for LC and associated diseases. And we know that we’ll need to keep the pressure on and continue advocating for pandemic justice & health equity.

We’re calling for:

➡ significant patient and community involvement in all areas of the bill’s implementation including the Advisory Board - prioritizing voices from groups disproportionately affected by LC like Black, Latiné, trans, queer, and disabled people

➡ support for trials of therapeutics prioritized by post-viral experts and patient groups in the Long COVID, ME/CFS, and dysautonomia communities (don’t repeat the mistakes of the RECOVER trials!)

Learn more and take action:

Tell the CDC: New CDC COVID-19 isolation guidance weakens labor protections, discriminates against high-risk people, and does not match the science

Strategies for High Impact and our Long COVID Justice project have signed on to Pan End It’s new letter to CDC Director Mandy Cohen, which demands that the CDC take a strong stand for public health and resist political and corporate pressure to downplay the dangers of the ongoing COVID-19 pandemic.

The CDC’s recently revised COVID isolation guidance weakens labor protections, discriminates against high-risk people, and does not match the science. In response, this letter calls for the CDC to make changes including revising their shortened COVID isolation guidelines, working with other agencies in support of universal paid sick leave, emphasizing masking and testing as core prevention strategies, and publishing more specific information on high-risk conditions.

Use this template to add your name and send your own personalized letter to the CDC.

Long COVID Justice Co-Founder Interviewed in Washington Post

Our co-founder Gabriel San Emeterio was interviewed for the article, “In communities of color, long-covid patients are tired of being sick and neglected” by Akilah Johnson in The Washington Post.

Chimére Sweeney of our Listening for the Long Haul project and Angela Meriquez Vázquez, a BIPOC Fellow with our Long COVID Communicators project were also featured in this powerful article.

We encourage you to read the full article here.

It's time to restore and expand the #Test2Treat program

The U.S. National Institute of Health (NIH)’s #Test2Treat pilot program for COVlD and flu saves lives. Strategies for High Impact and Long COVID Justice are strong supporters of this pilot program - join us in advocating for #Test2Treat!
 
#Test2Treat was designed to reduce disparities for the most at-risk populations, by offering FREE at-home tests, telehealth and treatment for both COVlD and flu. This program was recently ended even though 100 million people are eligible. Tests and treatment help our communities manage current sickness while helping prevent against #LongCOVID and #LongFlu.
 
Join us to ask the White House and government officials to restore, expand and widely promote #Test2Treat as a critical layer of protection for ALL:
Send a letter today via MaskTogetherAmerica.

We can’t talk about Long COVID without talking about ME/CFS

We can’t talk about Long COVID without talking about ME/CFS.

ME/CFS is Myalgic Encephalomyelitis (misnamed as Chronic Fatigue Syndrome) – and studies show it may affect 50% of people with Long COVID. For ME Awareness Month, we’ve been gathering resources on care strategies, treatment, and advocacy.

Many people with Long COVID and associated diseases like ME/CFS are newly disabled, while others have been living with disability or complex chronic illness for a long time. And as in all our movements, these struggles are connected. As we’re fighting for pandemic justice, care and safety, we are also fighting for disability justice, health equity, body autonomy, racial and gender justice, healthcare not warfare, an end to genocides, and so much more.

NEW! Check out our ME resource list on our new webpage: longcovidjustice.org/me, or share our social post on Instagram or Facebook.