“Left to rot”: The lonely misery of long Covid sufferers


Governments worldwide have quickly mobilized to slow early Covid-19 infections, but patients stuck with long-term, debilitating symptoms of the virus – who are sometimes unable to work or carry out basic daily tasks – feel national and international responses are one have ignored the most significant impacts of the pandemic, nearly a dozen activists in 10 countries told POLITICO.

“We’re just being left to rot,” said Chantal Britt, founder and president of Long Covid Switzerland. “That’s why all these organizations are showing up: there’s no official help.”

The Swiss government declined to comment on the records.

Some studies suggest that Covid could long affect up to 30 per cent of those infected – a fact not often discussed publicly when governments discuss 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 a global economic impact, 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 are investing less — are feeling confused and ignored as their numbers grow.

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

Some use Facebook and other social media to create support groups, share ideas, and show compassion, either because they have little access to primary health care or because they receive little response from their government or doctors.

“In terms of government… I don’t even think it’s being discussed,” said Wachuka Gichohi, a longtime Covid advocate in Kenya who founded the Long Covid Kenya Support Group on Facebook.

Her group, like many others that have formed online, is a place where patients share information and advice about the disease – particularly useful for those who cannot afford a doctor.

But social media support groups and patient groups are hardly enough, proponents say. They want governments to take the risks of a long Covid seriously – through more research funding, clearer protocols for treating the syndrome, guaranteeing disability benefits for patients who are unable to work and broader recognition of the public risk.

“Increasingly, the government just wants to keep going. It’s all about ‘we have to live with Covid now,'” said Jo House, a solicitor in the UK. “There isn’t that same sense of urgency, which I think is tragic given the large number of people who have contracted it. ”

Governments have highlighted the circumstances that have made action difficult: little comprehensive evidence on the cause of the disease and few proven cures. And many countries do not have the resources to try to tackle the long Covid while also dealing with new infections and making up for lost time fighting diseases like tuberculosis, HIV and malaria.

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

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

“Effective therapeutics can also address the negative health effects that may linger after infections are cleared, and we need to prioritize their development and deployment,” she said. “We are working on this with our agencies and Member States and we will continue to prioritize communication about the benefits [of] Vaccination and boosting immunity.”

“No one helps us”

The politicization of the pandemic — not just a problem in the United States — has made it harder to act, advocates said. The suggestion that Covid-19 still poses a significant risk due to long-term symptoms is not popular, particularly among governments trying to navigate through a faltering global economy or to cater to an electorate weary of for more than two years to warn against the virus.

“It appears that the pandemic has a political price, a price that most governments do not want to bear,” Cesar Medina, a leader of one of Mexico’s longtime Covid advocacy groups, said in a WhatsApp message.

As more people have developed symptoms, Long Covid advocacy organizations have increased in size and scope, particularly in Europe, where several national level organizations have formed Long Covid Europe and are working towards becoming a non-governmental organization accredited by the World Health Organization.

The groups have said that recognition, research and rehabilitation are their common goals – language that has been adopted WHO guidance.

And while some groups like the WHO have acknowledged the urge for more work on Long Covid, patients say their governments are acting as if the threat isn’t real.

“There are so many things we need to learn and nobody is helping us,” said Eleni Iasonidou, a pediatrician who runs 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 it for these 10 years and we are already living with two years of symptoms.

The concern is not just for people who have been ill with Covid for a long time. Proponents have said it is irresponsible not to discuss the threat the little-understood syndrome poses to the population — especially given the rising number of cumulative infections fueled by increasingly contagious variants.

“The government needs to educate its citizens about this risk so they can make informed decisions,” said Emma Moderato, a longtime Covid advocate in Sweden. “We are often not seen as part of the pandemic.”

“Progress was minimal”

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

A spokesman for the UK’s National Health Service told POLITICO that a new plan for long Covid patients would be released in a matter of weeks. And a spokesman for Germany’s health ministry detailed the country’s lengthy, ongoing plan to combat Long Covid, which includes specialized clinics, insurance policies and pension benefits for patients, and avenues for research funding.

“Ensuring that long-COVID patients receive appropriate care is a key policy priority,” the statement said.

But in much of the world there is little help for people suffering from persistent symptoms, advocates said.

In one of Mexico’s longstanding advocacy groups for Covid, Colectivo Covid Persistente México, patients are considering what legal action could force changes — while seeking recognition, new public policies and protocols for care.

“Progress has been minimal, with some institutions only half listening, others reluctantly confirming that they will do whatever they can to help, but there is still not the slightest acknowledgment from the top,” Medina said in a text.

Although a Mexican senator, Ruth Alejandra López Hernández, sent a letter It urged the health ministry to do more and represents the exception to the general response, Medina said.

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

“Everyone is so sick and fed up with Covid,” Ann Li, who heads the Belgian long-Covid group Post-COVID Gemeenschap, said. “There is so much to do. But I don’t have the time and I can’t find any volunteers who could help me.”


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