International
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Even stones break in this heat: Experiencing Long COVID in Indonesia
Now it’s been four years. And this thing — this invisible thing — is still here. Every morning is a gamble. Will I wake up with energy? Or will my legs feel like stone? Will I be able to focus? Or will my thoughts float around like lint in the air, impossible to catch?
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An international emergency task force is urgently needed for Severe Long COVID and ME crisis cases
Without one, Severe advocates are putting themselves at risk. It’s time for advocacy organizations to step up. Writer’s note: In this essay, I deliberately capitalize different categories of ME in order to give each the weight and dignity they deserve. I also choose to distinguish between the Sick and the Well to highlight our status…
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Live blog: International demonstrations ignite for Long COVID Awareness Day
Demonstrations for International Long COVID Awareness Day have sparked around the globe. Whether raising awareness about the disease in public or from their homes, people with Long COVID and their allies have raised their voices to demand recognition, research, treatments, support, and prevention of COVID-19 during the ongoing pandemic, as many in the community observe…
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“There is no money to survive”: Long COVID pushes India’s marginalized workers deeper into poverty
While research on Long COVID in India is scarce, studies and people’s experiences suggest that the pandemic has deepened socioeconomic inequalities in the country. Among the hardest hit are marginalized workers, including daily wage laborers and cleaners, whose livelihoods depend on intense physical labor. For them, Long COVID is not just a health and disability…
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False hope: In Sub-Saharan Africa, wars damage Long COVID research and surveillance
In summer 2023, clinical nurse Rino Da Costa was well into recruiting participants for a study to monitor Long COVID cases in Naquitengue, a village in Cabo Delgado, northern Mozambique. It was a promising research endeavor until a flaring of gunfighting sunk her efforts.
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Without clear clinical guidelines in México, people with Long COVID face gaslighting and erasure
The only explanation Jacqueline Ventura can think of is Long COVID, also called COVID persistente in México. But though Ventura accrued a hodgepodge of symptoms for two years after getting reinfected with SARS-CoV-2, doctors never diagnosed her with the disease. Every symptom had an alternate explanation. Like many around the world with Long COVID, the…
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With no approved treatments and little support, people with Long COVID turn to online drug markets
With no approved treatments, lack of support, and stigma against the disease, many people with Long COVID are using overseas pharmacies to source medications. Some of these treatments are widely used for other conditions, such as HIV and hepatitis C, but are not approved for use in Long COVID.
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The trouble with recovery stories
Recovery stories have been popular in the media lately. Two recent stories have evoked a wide range of reactions among those with ME, with some gaining hope from them and supporting the right for everyone to share their experiences as they choose; and others feeling let down by narratives that arguably perpetuate negative stereotypes about…
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We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride
How can people with energy-limiting conditions march for our rights if we have negligible physical capability and exertion worsens our symptoms? My colleague Mlindeni Gabela and I are pioneering a new kind of protest in South Africa: SICK Pride. SICK stands for the Society for the Inclusion of Chronic Knowledge, which we feel is a…
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Clinical trials explore how Low-Dose Naltrexone could help people with Long COVID
Observational studies suggest Low-Dose Naltrexone may benefit some people with Long COVID and ME. People with these diseases have shared their experiences with LDN in online communities, reflecting the value of patient knowledge. Now, LDN is attracting growing interest from researchers. Current clinical trials include a Long COVID study in Australia, a Spanish study focused…
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