In the 1890s one of the biggest pandemics in history, known at the time as “Russian flu”, swept the world. It left 1m people dead. Russian flu is now thought to have been misnamed. It was probably not influenza, but rather a coronavirus ancestral to one that now just causes symptoms described by sufferers as “a cold”. When it was new, however, few people had immunity to it, so it was often lethal. And not only that. For, as the pandemic receded, it left in its wake a wave of nervous disorders...
Something similar is happening now, with the covid-19 pandemic. A wave of what has become known as “long covid” is emerging in countries where acute cases have been falling.
The pandemic took young people’s present. What will it do to their future?
COVID Bootcamp was designed specifically for COVID-19 survivors and long haulers by cardiopulmonary rehabilitation experts with 365+ years of combined experience (not a typo)!
Join millions of individuals sharing how they feel to combat the continued spread of the virus in communities across the country. Together we can beat the disease and get through this crisis.
In March 2020, Body Politic started the COVID-19 Support Group after Founder and EIC Fiona Lowenstein, and Creative Director Sabrina Bleich became sick with coronavirus. After falling ill, we quickly realized that there was not enough online content or resources dedicated to people struggling with coronavirus.
We believe all children should be able to thrive and look forward to a positive future.
That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
The Long Covid Research Initiative is a collaboration of scientists, clinicians, and patients to rapidly and comprehensively study and treat Long Covid.
This is a private group for people with Long Covid (sometime called long haul Covid, post-Covid syndrome) or people who are caring for someone with Long Covid. You may have Long Covid if you haven't recovered from Covid after 3 weeks.
React19 is a science-based non-profit offering financial, physical, and emotional support for those suffering from long-term COVID-19 vaccine adverse events globally. Our mission is to bring healing to the moms, dads, friends, and loved ones who are facing life-altering side effects from their COVID-19 vaccine. We build bridges between patients and research institutions in order to develop a better understanding of our vaccine complications.
Survivor Corps is one of the largest and fastest growing grassroots movements connecting, supporting, educating, motivating and mobilizing COVID-19 Survivors
to support all medical, scientific and academic research,
help stem the tide of this pandemic and assist in the national recovery.
I am one of two million sufferers in the UK. When I read new studies, I am also trying to understand what’s going on in my legs
Notably, majority of participants with PASC in this study reported mild acute COVID-19 infection and the lag in the onset of autonomic symptoms by at least two weeks from acute infection lends further support to COVID-19 as a trigger for dysautonomia.
It’s increasingly clear that the SARS-CoV-2 virus is not going away any time soon. And for some patients, their symptoms haven’t gone away either.
Many are still reporting minimization of their long Covid symptoms – and it’s partially attributable to the fact that female patients are routinely dismissed.
We initially thought of long COVID as a single disorder. We now know it’s a complex condition, caused by a number of different factors.
I’d like to offer a civilian’s guide to navigating the sensitivities of those furious, frustrated, irritable millions—and to better understanding them.
An estimated 10 percent of all novel coronavirus patients are predicted to be, or become, long-haulers. This statistic is a contradiction to the early understanding of the disease, when it was thought to cause either a two-week flu-like run or an extended stay in an intensive care unit.
The groups have thousands of members and are branching into research as well as patient advocacy.
Researchers have found abnormalities even in people who didn’t show symptoms, raising questions about possible risks later in life.
People buying their own health insurance have even more to think about this year, particularly those post-COVID-19 patients with lingering health concerns — the "long-haulers," who join the club of Americans with preexisting conditions.
What type of plan is best for someone with an unpredictable, ongoing medical concern? That question is popping up on online chat sites dedicated to long-haulers and among people reaching out for assistance in selecting insurance coverage.
LONG COVID mystified medics, who had never dealt with the virus SARS-CoV-2 before, let alone the long-term effects. Nearly a year since the world's first encounter with the deadly disease, official guidance on post-COVID syndrome has been shared.
Without understanding the lingering illness that some patients experience, we can’t understand the pandemic.
Online support groups are filling Covid-19 information gaps and helping patients arm themselves against discrimination.
Experts also studying similarities with lasting effects of Chikungunya virus in hope of finding new treatments.
Tens of thousands of people in the United States have such a lingering illness following COVID-19. In the US, we call them post-COVID “long haulers.” In the United Kingdom, they are said to be suffering from “long COVID.”
Among these “long-haulers,” as they have become known, a significant number face a very specific challenge: convincing others they had Covid-19 in the first place.
The longer the pandemic drags on, the more obvious it becomes that for some patients, COVID-19 is like the unwelcome houseguest who won’t pack up and leave.
Although most young people recover quickly, doctors are seeing some children and teens with lingering fatigue and other chronic problems.
“This is a phenomenon that is really quite real and quite extensive,” Dr. Anthony S. Fauci, the nation’s top infectious diseases expert, said at the conference on Thursday.
While the number of people affected is still unknown, he said, if long-term symptoms afflict even a small proportion of the millions of people infected with the coronavirus, it is “going to represent a significant public health issue.”
Two new studies from Germany paint a sobering picture of the toll that Covid-19 takes on the heart, raising the specter of long-term damage after people recover, even if their illness was not severe enough to require hospitalization.
It is pivotally important to learn about hidden disabilities now as individuals affected by post-Covid-19 syndrome who need support and advice are having difficulty convincing physicians of their experiences, are facing significant depression and anxiety from the mental toll of this doubt, and are experiencing medical gaslighting.
A Slack group has become a lifeline for patients whose symptoms have been lingering for months.
Severe fatigue, memory lapses, heart problems affect patients who weren’t that badly hit initially; ‘It’s been so long’
A disorder called POTS offers some treatment paths, but they are often arduous.
Many patients who are hospitalized for COVID-19 are discharged with symptoms such as those associated with a brain injury. But COVID-19 also appears to produce many other brain-related symptoms ranging from seizures to psychosis, a team reports in the Jan. 5 issue of the journal Alzheimer's & Dementia. The team, which included de Erausquin, says severe COVID-19 may even increase a person's risk of developing Alzheimer's disease.
I’m what’s known as a long-hauler – part of a growing group of people who have COVID-19 and have never fully recovered. Fatigue is one of the most common persistent symptoms, but there are many others, including the cognitive effects people often describe as brain fog. As more patients face these persistent symptoms, employers will have to find ways to work with them. It’s too soon to say we’re disabled, but it’s also too soon to know how long the damage will last.
People suffering from debilitating symptoms for months after getting sick with Covid are searching for relief.
A Times reporter caught the coronavirus during the New York City outbreak last April. But the acute phase of the illness was just the beginning.
Thousands of people known as long-haulers have been suffering from COVID-19 symptoms months after they contracted the virus. Although they no longer test positive for the virus, many still experience chronic fatigue, brain fog, hair loss and other symptoms. There may be an answer as to why this is happening. For some. It's a condition called POTS, which we will have explained. It affects about 1% of the population. But there are treatment options.
“It is a true roller coaster of symptoms and severities, with each new day offering many unknowns.”
While early research on Covid-19 focused on its respiratory symptoms, we now know its impacts — both direct and indirect — can be much more extensive and relentless.
Long-haulers have been suffering from a variety of ailments, some of which may not sound like typical coronavirus issues.
Doctors are studying coronavirus patients who are still experiencing symptoms or aftereffects of the disease, months after infection.
Online support groups on Facebook and independent sites have thousands of members, each of whom is navigating lingering symptoms their doctors can’t explain. Some are still easily winded, losing their breath after taking a flight of stairs...
Even though the immune system is supposed to keep the body safe from pathogens, it doesn’t always work that way. Sometimes, if the body generates a particularly intense immune response, it’ll end up doing more harm than good. And that’s more likely to happen the older we get.
That's what they call themselves: long-haulers. They've been sick for months. Many have never had a positive test. Doctors cannot explain their illness any other way, and can only guess at why the virus appears to be with them for so long.
The terrible uncertainty of symptoms that persist for months and months.
Data is scarce, but here’s what we know.
Many patients who are hospitalized for COVID-19 are discharged with symptoms such as those associated with a brain injury. These include "forgetfulness that impairs their ability to function," de Erausquin says. "They complain about trouble with organizing their tasks, and that entails things such as being able to prepare a meal."
Covid-19 vaccines tend to alleviate the symptoms of long Covid, according to a large survey of more than 800 people that suggests mRNA vaccines, in particular, are beneficial.
New research shows that long Covid health problems are somewhat less common among vaccinated people who experience breakthrough infections than among unvaccinated people who become infected.
New Test Can Show If You’ve Had COVID-19, Even If Antibodies Fade
This test could show how many people have really had COVID-19, as well as information on how long immunity lasts and how well vaccines are working. A T cell test for COVID may help provide a retroactive diagnosis for people who may be suffering the long-term effects of SARS-CoV-2 — and with it, a sense of clarity and closure.
It is too soon to tell whether the shots have a broad beneficial effect on patients with continuing issues, but scientists are intrigued and beginning to study the phenomenon.
Scientists are putting new effort into understanding the troubling symptoms of long Covid. These patients are waiting for answers.
It is time for medical researchers to investigate these long-contested illnesses with the full force of science’s power and for medical educators to train doctors in how to effectively care for chronically ill patients. If they do not, they will be failing not only this generation of patients but many millions more to come.
The nagging symptoms long-haulers experience reveal a frustrating blind spot in medicine.
Recent studies suggest vaccination helps reduce the likelihood of developing longer-term symptoms after a Covid-19 infection, and may help some people with symptoms feel better
Should vaccinated people worry about long Covid?
Many people with Long COVID symptoms are unable to work or must do their jobs through extreme discomfort. Other long-haulers, as people with Long COVID are sometimes known, have been unable to secure disability benefits, in many cases because their symptoms defy easy explanation or documentation, making it difficult to prove they meet the standard for disability.
Unfortunately, the only sure way to avoid long COVID is not to catch the virus in the first place.
But there is now a growing body of research that's offering at least some reassurance for those who do end up getting infected — being fully vaccinated seems to substantially cut the risk of later developing the persistent symptoms that characterize long COVID.
But there’s a possible third outcome. It’s long been known that a number of disease causing pathogens—some viral and some bacterial—are associated with ongoing post-infection symptoms in a significant minority of patients.
As a physician, I never thought that I would someday be lumped into the category of patients known as “not otherwise specified,” or NOS for short. This category is dominated by women suffering nonspecific symptoms that are inconsistently appreciated by clinicians who eventually conclude that the problem is entirely in the mind.
Only a couple dozen doctors specialize in chronic fatigue syndrome (ME/CFS). Now their knowledge could be crucial to treating millions more patients.
How long do long COVID symptoms linger?
It’s the question on the mind of millions of sufferers. Less than three years into the pandemic, answers are limited.
Muscle pain, "brain fog" and anxiety were much more widely reported when the alpha variant was dominant.
Just as it was in the race to better understand the causes of acute disease earlier in the pandemic, we researchers are now working to get a more complete understanding of the cells and antibodies directing this self-attack for months and years following the resolution of infection.
A flurry of recent studies, some of which have been peer-reviewed and published, and others that are currently going through that process, seek to explain why millions of people suffer from Long COVID. Each one contributes a small piece to the larger research puzzle, helping to build scientific understanding of the disease, little by little.
COVID long haulers have been breathlessly covered, but there’s nothing surprising about medically unexplained symptoms—or the reaction to them.
Scientists are investigating why some people suffer with the virus for many months.
Though National Institutes of Health research funding has in part resulted in hospitals building clinics for those with long Covid, there haven’t been the same incentives to care for patients with post-intensive care syndrome.
Something similar is happening now, with the covid-19 pandemic. A wave of what has become known as “long covid” is emerging in countries where acute cases have been falling. Formally, the condition is called “post-covid syndrome” (pcs). But even the official definition of its symptoms is fluid, because knowledge of its details is still evolving.
Although scientists have yet to determine what causes long Covid symptoms, researchers have some clues. Prior research on post-infectious chronic conditions — like myalgic encephalomyelitis (otherwise known as chronic fatigue syndrome) and post-Ebola syndrome — has helped identify several good leads.