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

Thousands of long Covid patients across the globe are urging their governments to provide more help for the growing number of people facing lingering symptoms after infection.   

At least 90 long Covid groups exist around the world in 34 countries. Most are pushing for more research, improved clinical treatments and increased access to disability benefits, while others offer support and advice.

The growing effort comes as new research suggests there are hundreds of millions of people likely suffering from long Covid and as some experts warn of potentially severe long-term economic and public health impacts of a condition that is still poorly understood.

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

“We are just left to rot,” said Chantal Britt, founder and president of Long Covid Switzerland. “That's why all those organizations are popping up: There is no official help.”

The Swiss government declined to comment on the record.

Some studies suggest long Covid could affect as much as 30 percent of people who are infected — a fact that is not often publicly discussed when governments talk about which 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 impacts researchers worry.

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

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

Some, either because they have little access to basic health care or because they are getting little response from their government or doctors, are using Facebook and other social media sites to create support groups, share ideas and commiserate.

“In terms of government … I don't even think it's even being discussed,” said Wachuka Gichohi, a long Covid advocate 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 on the disease — especially useful to those who can’t afford a doctor.

But social media support groups and patient initiatives are hardly enough, advocates say. They want governments to take seriously the risks of long Covid — through more research funding, clearer protocols to treat the syndrome, guaranteeing disability benefits for patients who cannot work and more broadly recognizing the public risk.

“Increasingly, the government just wants to move on. Everything’s about, ‘We must live with Covid now,’” said Jo House, an advocate in the U.K. “There isn't that same sense of urgency, which I think is tragic given the vast number of people who are ill with this.”

Governments have pointed to the circumstances that have made action difficult: little comprehensive evidence about the cause of the disease and few proven cures. And many countries don’t have the resources to try to address long Covid, while also dealing with 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-breaking heat or devastating famines.

But that does not mean the issue is being ignored, Stella Kyriakides, European commissioner for Health and Food Safety, said in a statement to POLITICO.

“Effective therapeutics can also address the negative health effects that can persist after infections have been resolved, and we need to prioritize their development and roll out,” she said. “We are working on this with our Agencies and Member States, and we will continue prioritizing communication on the benefits [of] vaccination and immunity boosting.”

‘No one is helping us’

The politicization of the pandemic — not just a problem in the United States — has made it harder to act, advocates have said. The suggestions that Covid-19 still poses a significant risk because of long-term symptoms is not popular, especially for governments trying to steer through a faltering global economy or cater to an electorate that is weary of more than two years of warnings about the virus.

“It seems that there is a political cost of the pandemic, a cost 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 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 toward becoming a World Health Organization-approved Non-governmental Organization.

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

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

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

The concern isn’t just for people who have long Covid. Advocates have said it’s irresponsible to not discuss the threat the little-understood syndrome poses to the population — especially as the number of cumulative infections grows, fueled by increasingly contagious variants.

“The government must inform its citizens about this risk so you can make informed choices,” said Emma Moderato, a long Covid advocate in Sweden. “We’re often not seen as part of the pandemic.”

‘Progress has been minimal’

Some governments, particularly in Europe, are pouring millions into research, collecting data, standing up interdisciplinary, specialized clinics and disseminating information about the lasting impacts of Covid-19. Several are working to set protocols — from ministries of health to disability insurance, according to government announcements and statements to POLITICO.

A National Health Service spokesperson in the U.K. told POLITICO that a new plan for long Covid patients would be released in a few weeks. And a spokesperson for the German Ministry of Health laid out the country’s lengthy, ongoing plan to tackle long Covid, which includes specialized clinics, policies for insurance and pension benefits for patients, and paths for research funding.

“Ensuring that Long-COVID patients receive appropriate care is a major political priority,” the statement said.

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

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

“Progress has been minimal, some institutions have half-listened, others reluctantly confirm that they are going to do everything possible to help but from above there is still not the slightest recognition,” Medina said in a text.

Though one Mexican senator, Ruth Alejandra López Hernández, sent a letter asking the Ministry of Health to do more, she represents the exception to the general response, Medina said.

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

“Everybody is so sick and tired of Covid,” Ann Li, who leads Belgian long Covid group Post-COVID Gemeenschap, said. “There is so much work to be done. But there’s no time, and I can’t find any volunteers who can help me.”