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.

HIV Complexities Survey: Share Your Priorities for HIV Training & Advocacy

Strategies for High Impact is conducting a preliminary survey to collect community input for our HIV Complexities Project.

The HIV Complexities Project provides information, training, advocacy and analysis on crucial issues affecting people living with HIV and their communities in the United States. If you're living with HIV, engaging in HIV prevention, or working in HIV communities, let us know what programming most interests you.

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Long COVID advocates testify at first-ever Senate hearing

Strategies for High Impact (S4HI) and its Long COVID Justice project are joining with other advocates to tell Congress that it is beyond time to take action on Long COVID and associated diseases (LCAD).

Long COVID Justice started the new year by meeting with staff from the U.S. Senate HELP Committee as they prepared to host a hearing on Long COVID. At the January 19th hearing, patients, other experts, and a parent of a child with Long COVID shared their experiences and demands, including the need to recognize health disparities for BIPOC and LGBTQ+ communities who face disproportionately high levels of LCAD. The hearing and overflow rooms were full of advocates – including Long COVID Justice co-founder Gabriel San Emeterio – all wearing K/N95 masks.

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New project launch: NYC Needs Assessment and Action Plan

The NYC Long COVID Needs Assessment and Action Plan (NAAP) is a major research and advocacy project designed in partnership with S4HI’s Long COVID Justice NYC chapter. The NAAP will focus on people with Long COVID from highly affected communities whose needs have largely been overlooked, including monolingual Spanish speakers, people living with HIV, trans and non-binary people, and children/youth.

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New project launch: Listening for the Long Haul

Listening for the Long Haul is an oral history project created by Strategies for High Impact in partnership with History Moves at University of Illinois-Chicago, which received a grant from the Andrew W. Mellon Foundation. Together, we are training and supporting COVID-19 longhaulers to interview and narrate their own experiences. We will then create digital humanities resources for distributing those stories and bringing about narrative change.

“Listening for the Long Haul is a truly collaborative project, in which chronically ill and disabled people work together to tell our stories, with full control over our narratives and how they’re presented. It’s in the truest spirit of disability justice: ‘Nothing about us without us!’ ”

— S4HI co-founder Gabriel San Emeterio

Public programming and a new website for the project will be launched in 2024.

NOW UP: Navigating COVID and Long COVID as Long-Term HIV Survivors - webinar recording

Strategies for High Impact and our Long COVID Justice project have released a video recording for our webinar collaboration with the Reunion Project: TRUST YOURSELF & TAKE CARE OF EACH OTHER: Navigating COVID and Long COVID as Long-Term HIV Survivors.

About the webinar: The ongoing COVID-19 crisis has brought significant loss and challenges for people living with #HIV—including higher rates of #LongCOVID, which can be a wide range of new, returning, or ongoing health problems triggered by COVID infection. How do we care for ourselves and one another as we continue to face risks and realities of COVID-19 and Long COVID?

The webinar featured panel testimonials and real-life accounts from people living with HIV including Gabriel San Emeterio, S4HI cofounder, as well as keynote speaker Dr. Michael Peluso (UCSF), along with a robust community discussion.

Gabriel San Emeterio, S4HI cofounder, is featured speaker at Millions Missing protest in DC

S4HI cofounder Gabriel San Emeterio recently traveled to Washington, DC to speak at the Millions Missing 2023 protest. Millions Missing is an annual protest that raises awareness and demands support for chronic illnesses like myalgic encephalomyelitis/chronic fatigue syndrome (MECFS) and Long COVID, and is organized by chronically ill activists from ME Action and other groups.

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