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

8/14/2022 8:00:00 PM

Some studies suggest long Covid could affect as much as 30 percent of people who are infected.

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

Some studies suggest long Covid could affect as much as 30 percent of people who are infected.

New research suggests there are hundreds of millions of people likely suffering from long Covid.CDC., the Centers for Disease Control and Prevention released revisions to pandemic guidance that clearly indicate a shift from the state-of-emergency approach that has been in place, at least on a federal level, since 2020.warning that at-home rapid antigen tests can deliver false negative results and people who need tests should should plan to do so more than once to make sure they are not “unknowingly spreading the SARS-CoV-2 virus to others.

| Getty Images By 08/14/2022 07:00 AM EDT Link Copied 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."We also have a better understanding of how to protect people from being exposed to the virus, like wearing high-quality masks, testing, and improved ventilation.Most are pushing for more research, improved clinical treatments and increased access to disability benefits, while others offer support and advice.“This guidance acknowledges that the pandemic is not over, but also helps us move to a point where COVID-19 no longer severely disrupts our daily lives,” Massetti said in a statement that accompanied the new guidance, which was cheered by some and denounced by others.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." If You're Exposed to COVID-19 Notably, the CDC has changed its recommendations on what to do if you're exposed to COVID; the recommendations are now the same for people regardless of whether they're vaccinated or not.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.The study is said to have included more than 7,000 participants.

“We are just left to rot,” said Chantal Britt, founder and president of Long Covid Switzerland.This is a change from prior recommendations , which instructed people to automatically enter quarantine for five days if they weren't up to date on their vaccines.The new approach emphasizes finding and treating cases of serious illness, not stamping out every infection.“That’s why all those organizations are popping up: There is no official help.” The Swiss government declined to comment on the record.If You Test Positive For COVID-19 If you do test positive for the virus, the CDC recommends staying home for at least five days, wearing a mask at home and in public, and isolating yourself from others.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.(Michael Loccisano/Getty Images) The new rules still recommend that people who are sick with COVID-19 should isolate at home, but people — including students in schools — do not have to quarantine if they have been exposed to someone who had tested positive but are not feeling sick themselves.The long-term effects of the virus could disable enough people to even have global economic impacts researchers worry.You should also remain cautious around immunocompromised people or anyone more likely to get sick until at least day 11.“If you get a negative result on the second test and you are concerned that you could have COVID-19, you may choose to test again 48 hours after the second test, consider getting a laboratory molecular-based test, or call your health care provider,” the FDA said.

And while the U.S.New Social-Distancing Guidelines this update , the CDC also dropped its specific advice around social distancing (staying at least six feet away from other people), which had been a hallmark of earlier recommendations.” Story continues The CDC continues to advise the wearing of high-quality masks, including for people emerging from isolation and those who may have been exposed and, under previous rules, would have been required to quarantine.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.It is important to consider the risk in a particular setting, including local COVID-19 Community Levels and the important role of ventilation, when assessing the need to maintain physical distance.“In terms of government … I don’t even think it’s even being discussed.People board an"F" train subway car at the 42nd Street station on July 15, 2022 in New York City.

” Wachuka Gichohi, long Covid advocate in Kenya 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.A report by the Annenberg Public Policy Center found that while over half of Americans personally know at least one person who died from COVID, 41 percent report they have already returned to their"normal pre-COVID" life.“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 some experts are critical of the move.At the same time, so many people have been infected with the coronavirus that natural immunity appears to have provided a bulwark of its own.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.The new CDC guidance seems to acknowledge that reality, leaving individuals to make their own decisions about how many protections to take.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.“For kids in particular, it’s time to more appropriately balance the harms of COVID with the harms of mitigation measures.” 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.” Students wait in line before heading to their classrooms on the first day back to school at Sunkist Elementary School in Anaheim, Calif.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.(Jae C.

” ‘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.He and others have noted that hundreds continue to die daily from COVID-19, and that poor people and people of color have borne the brunt of the pandemic from the start.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.” Los Angeles County came close to reimposing a mask mandate late last month , only to decide at the last minute against doing so.“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.That hope now seems woefully naive.” 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.Ashish Jha, the White House pandemic response team coordinator, said at a briefing last month.“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.“The goal has to be to minimize disruption to school, work, and other aspects of life,” former Baltimore public health commissioner Dr.

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.” Read more.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, 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.”.

Read more:
POLITICO »
Loading news...
Failed to load news.

LongDeutschland there were always untrained and unmotivated people, long before covid. first called fatique syndroms, thanks to covid infections they jumped on that train… lucky to get covid? We have a drug it is safe, it won’t cure long Covid but it helps regain some energy. It’s called Ampligen and has already been through phase 3 trials and then some. It should be made legal tomorrow

Yeah I bet…as they should…but gov'ts are notoriously bad…at long time care and support of folks…so fingers crossed... Lies. Just a government scam to hook people on assistance by making them think all their problems come from Covid. scamdemic Wrong. Wrong. Wrong. Let Mother Nature take care of us. If we did nothing when COVID broke out, nature would have protected us and the virus would be in submission. Like ALL other viruses. It is a wonder mankind has made it this far. Mother Nature Rules

CDC Releases New, More Relaxed COVID Guidelines: 'We're in a Stronger Place'The CDC announced new COVID guidelines, including less emphasis on social distancing and updates to isolation time and testing if you've been exposed.

CDC moves beyond COVID emergency with new guidanceThe day after a newly coronavirus-free President Biden embarked on a post-infection vacation to South Carolina, the Centers for Disease Control released revisions to pandemic guidance that clearly indicate a shift from the state-of-emergency approached that has been in place, at least on a federal level, since 2020.

The FDA recommends repeated at-home COVID tests to avoid false negativesOn the same day that the Centers for Disease Control and Prevention eased COVID-19 guidelines, the Food and Drug Administration issued a statement warning that at-home rapid antigen tests can deliver false negative results and people who need tests should should plan to do so more than once to make sure they are not 'unknowingly spreading the SARS-CoV-2 virus to others.' jeannetix_ Another day at the circus

How many people with Covid don't have any symptoms?Repeat testing can help prevent those exposed to Covid from unknowingly spreading the virus. How often do people get Covid without symptoms?

6 things to know about the CDC’s new COVID-19 recommendationsThe Centers for Disease Control and Prevention loosened its COVID-19 guidelines Thursday, bringing a halt to years of social distancing and quarantine... 98% of the population doesn’t care about Covid anymore.

What to Know About Long COVID in KidsIt can affect children as well as adults LongCovid