I live at the intersection of pandemics: HIV, ME/CFS & Long COVID

My name is Gabriel San Emeterio and I’m the cofounder of Strategies for High Impact and its Network for Long COVID Justice

I’m grateful to be here with the communities that I’m a part of and that I hold dearly which are: people living with HIV, and people living with illnesses that have a viral trigger such as Myalgic Encephalomyelitis or ME/CFS and Long COVID. 

Today, many decades after AIDS started killing us, we are in the crosshairs of colliding pandemics.

Today is the 34th year that we commemorate World Aids Day, but the HIV/AIDS pandemic started long before mainstream society and the government considered it a problem that our siblings were dying. In fact, it took literal blood sweat and tears from so many activists who put their bodies on the line and who gave their ashes after their untimely deaths to have resources dedicated to research and systems of care. Tragically, despite having effective medical treatments and prevention methods, people still die of AIDS here in the United States and across the world. These deaths are distributed unevenly across socioeconomic, racial, and  gendered lines which means that the most affected are black and brown people who have low incomes or live in abject poverty and are minoritized and marginalized due to their sexuality and or gender identity.

Today, many decades after AIDS started killing us, we are in the crosshairs of colliding pandemics. And though they’re very different, as there’s no comparing AIDS and COVID, both viruses have killed millions and continue to kill children, teenagers, adults, and elders here in the US and across the world. Regardless of what demographic you fall under, post viral illness can happen to anyone. HIV positive people are 4 times more likely to develop Long COVID

I embody many of the intersecting identities that produce negative health outcomes and disability. I live at the intersection of pandemics.

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Long COVID is an umbrella term that includes hundreds of symptoms, often disabling and sometimes deadly, that appear after a COVID-19 infection, regardless of severity. Even mild or asymptomatic COVID infections can result in Long COVID.

More than half the people who develop long COVID meet the diagnostic criteria for Myalgic Encephalomyelitis or ME/CFS. 

As a genderqueer Mexican immigrant, I embody many of the intersecting identities that produce negative health outcomes and disability. I live at the intersection of pandemics.

My ME was likely triggered by the impact of contracting HIV, but it’s hard to know because ME has been neglected, stigmatized, underfunded, and under researched for decades. My HIV diagnosis happened quickly and it gave me access to what should be basic human rights such as access to treatment, healthcare, housing, and other services. On the other hand, it took 9 years to get an ME diagnosis, and while my HIV was well managed, ME took away my ability to work and radically changed my life. By the way, there are no FDA approved treatments for ME and there are only a handful of medical professionals who specialize in it, many of them are rapidly approaching retirement age.

Sadly, my story is not unique, millions of people have been living with ME …and now millions more are living with or developing long COVID.

After getting COVID just once, despite vaccinations and treatment with Paxlovid, my ME got worse. Rates of ME/CFS are skyrocketing due to Long COVID. Sadly, my story is not unique, millions of people have been living with ME, many of whom are severely disabled, whether they have a diagnosis or not, and now millions more are living with or developing long COVID.

Both pandemics are far from over and their disabling effects linger in our bodies. 

As one of the most prosperous nations in the history of the world, we need the president and congress to fund research, treatment, and strategies globally to address existing pandemics now, and to prevent future ones! International solidarity is non negotiable. We are all interconnected, the health of the people on the other side of the world affects us too!

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ME and Long COVID Activists at the World AIDS Day White House Protest

The 2022 World AIDS Day action outside the White House united people with HIV with chronically ill and disabled people with Long COVID and ME/CFS and others.

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