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‘Left to rot’: The lonely plight of long Covid sufferers

Governments around the world quickly mobilized to slow down early Covid-19 infections, but patients stuck with long-lasting, debilitating symptoms from the virus — sometimes unable to work or perform basic daily tasks — feel national and international responses have ignored one of the pandemic’s key effects, nearly a dozen activists in 10 countries told POLITICO.

“We’re just rotting,” said Chantal Britt, founder and president of Long Covid Switzerland. “That’s why all those organizations are showing up: there is no official help.”

The Swiss government declined to comment on the record.

Some research suggests that long Covid could affect up to 30 percent of people infected – a fact not often discussed publicly when governments talk about what preventive measures are appropriate at this stage of the pandemic. The long-term effects of the virus could disable enough people to even have global economic consequences, researchers fear.

And while the US has invested more than $1 billion to better understand the disease, patients in America and beyond — where most countries invest less — are feeling confused and ignored as their numbers grow.

Many proponents, who spend their days lobbying governments, are also patients who suffer from a range of symptoms, including extreme fatigue, shortness of breath, diarrhea and palpitations.

Some use Facebook and other social media sites to create support groups, exchange ideas, and feel compassion.

“As for the government… I don’t even think it’s even talked about,” said Wachuka Gichohi, a long-time Covid lawyer in Kenya who started the Long Covid Kenya Support Group on Facebook.

Her group, like many that have formed online, is a place where patients share information and advice about the disease — especially helpful for those who can’t afford a doctor.

But social media support groups and patient initiatives are barely enough, advocates say. They want governments to take the risks of long-term Covid seriously – through increased research funding, clearer protocols to treat the syndrome, guaranteeing disability benefits for patients unable to work and wider recognition of the public risk.

“More and more, the government just wants to move on. It’s all about ‘We have to live with Covid now,'” said Jo House, a lawyer in the UK. “There’s not the same sense of urgency, which I think is tragic given the sheer number of people sickened by this. ”

Governments have pointed to the conditions that make action difficult: little comprehensive evidence about the cause of the disease and few proven cures. And many countries lack the resources to try and tackle the long-term Covid virus, while also tackling new infections and making up for lost time fighting diseases, such as tuberculosis, HIV and malaria.

Even countries with resilient health systems face other crises, such as economic challenges, regional wars, record heat or devastating famines.

But that doesn’t mean the issue is being ignored, Stella Kyriakides, European Commissioner for Health and Food Safety, said in a statement to POLITICO.

“Effective therapies can also address the negative health effects that can persist after infections resolve, and we need to prioritize their development and rollout,” she said. “We are working on this with our agencies and Member States, and we will continue to prioritize communication on the benefits [of] vaccination and immunity boosting.”

‘Nobody helps us’

The politicization of the pandemic — not just a problem in the United States — has made it harder to act, lawyers have said. Suggestions that Covid-19 still poses a significant risk due to prolonged symptoms is unpopular, especially for governments trying to navigate a faltering global economy or cater to an electorate fed up with more than two years of warnings about the virus. .

“It appears that the pandemic is bringing a political price, one that most governments are unwilling to bear.” Cesar Medina, a leader of one of Mexico’s long Covid advocacy groups, said in a WhatsApp message.

As more people have developed symptoms, long-term Covid advocacy organizations have grown in size and scope, particularly in Europe, where several national-level organizations have created Long Covid Europe and are working to become a World Health Organization-approved non-governmental organization.

The groups have said that their broad goals are recognition, research and rehabilitation – language adopted in WHO guidance.

And while some groups like the WHO have acknowledged the push for more work on long-term Covid, patients say their governments are acting as if the threat were not real.

“There are so many things we need to learn, and no one is helping us,” said Eleni Iasonidou, a pediatrician who leads Long Covid Greece. “In 10 years we will have answers and for a long time Covid will take its place as a disease. But in the meantime we are all here and we have to live with that in those 10 years, and we have already been living with symptoms for two years.”

The care is not only for people who have had Covid for a long time. Proponents have said it would be irresponsible not to talk about the threat the little-understood syndrome poses to the population – especially as the number of cumulative infections rise, fueled by increasingly contagious variants.

“The government should inform its citizens about this risk so that you can make informed choices,” said Emma Moderato, a longtime Covid lawyer in Sweden. “We are often not seen as part of the pandemic.”

‘Progress is minimal’

Some governments, especially in Europe, are putting millions into research, collecting data, setting up interdisciplinary specialist clinics and disseminating information about the lasting effects of Covid-19. Several are working on drafting protocols – from health ministries to disability insurance, according to government announcements and statements to POLITICO.

A spokesperson for the National Health Service in the UK told POLITICO that a new plan for tall Covid patients would be released in a few weeks. And a spokesman for Germany’s health ministry explained the country’s long-standing, ongoing plan to tackle long-term Covid, including specialist clinics, insurance policies and patient retirement benefits, and research funding paths.

“Ensuring that lung COVID patients receive appropriate care is a key political priority,” the statement said.

But in much of the world, there’s little help for people with persistent symptoms, lawyers said.

In one of Mexico’s long Covid advocacy groups, Colectivo Covid Persistente México, patients consider what legal action could force change — while also seeking recognition, new public policies and protocols for care.

“The progress is minimal, some institutions have half listened, others reluctantly affirm that they will do everything possible to help, but from above there is still not the slightest recognition,” Medina said in a text.

Although a Mexican senator, Ruth Alejandra López Hernández, sent a letter by asking the health ministry to do more, she is the exception to the general response, Medina said.

Politicians, like the general public, are tired of pandemic calculations.

“Everyone is so fed up and tired of Covid,” said Ann Li, who leads Belgium’s long-term Covid group Post-COVID Community. “There is so much work to be done. But there is no time and I cannot find any volunteers to help me.”

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