Issue 21.1: Welcome
If you are reading this newsletter, you or someone you know likely has what experts are calling “Long Covid.”
Many people, perhaps millions, caught COVID-19 and recovered … but not completely. Symptoms can stick around and be anywhere from just a bit annoying to downright physically paralyzing or emotionally draining.
In this weekly newsletter, our aim is to bring you the latest news and research about Long Covid (also known as long-haul Covid) quickly and in easy-to-understand terms. From items in the mainstream media to studies in the scientific literature, we’ll help you make sense of the ever-changing landscape of this frustrating disease.
A Bit About Us
We are two medical journalists who together have been interpreting research findings for some 60 years, often for physicians and other clinicians. Currently, Adam is the editorial director of Gastroenterology & Endoscopy News, a monthly magazine for gastroenterologists, and the co-founder of Retraction Watch, a website that monitors problems with the integrity of scientific research and related issues. James is the editorial director of Anesthesiology News and group editorial director of McMahon Group, one of the country’s leading independent medical publishers.
Amid all the grim news about rising caseloads and death tolls, and the excitement over the arrivals of vaccines against the novel coronavirus that causes COVID-19, we realized that people with Long Covid may feel like they’re falling through the cracks. They need a place they can turn to for reliable, up-to-date reporting about their condition, and about any developments that might improve their lives.
Long-haul sufferers need this info now, not weeks down the road.
We also would like to hear from patients, physicians and other health professionals to find out what they are thinking. Have a question for us that we might ask an expert? Email us at longcovid@mcmahonmed.com.
What are the Symptoms of Long Covid?
We are coming up to a full year of experience with COVID-19, and sadly, there are a few people out there now who have nearly a full year of experience with Long Covid.
So what are the symptoms of this lingering syndrome? The list is extensive and will become even longer as scientists learn more about the condition. Some of these symptoms have been noted often, but some are quite rare. We will keep track of it and update the list periodically. We would be interested to hear about your personal experiences and let us know if you have any different symptoms than the ones listed here. This list focuses on more frequent Long Covid symptoms.
Chest pain (common)
Cough (common)
Dementia
Depression
Fast-beating heart (“heart palpitations”)
Fatigue (common)
Guillain-Barre syndrome (rare; immune system disorder that can lead to tingling sensations and even paralysis)
Headache
Intermittent fever
Joint pain (common)
Loss of smell and/or taste
Muscle pain
Poor concentration and scattered thinking (“brain fog”)
Psychosis
Shortness of breath (common)
… and many other very rare symptoms (for example, tinnitus or hair loss)
Now, here’s some information you should definitely hold onto: a list of clinics that have opened up specializing in treating people suffering from long-haul Covid.
Most of these specialty clinics are on the coasts or in the Chicago-Cleveland area, with a very familiar ‘care desert’ throughout the central portions of the United States. You’d probably have more luck finding some water in the Sahara than a Long Covid clinic in Midwest America. This phenomenon often is the case with specialty care—for example, rheumatology—and it is more evidence of the need for a national approach to providing specific types of care in a demographically more just manner. We will update this list periodically, but the good news is we believe it will grow significantly. The clinics on this list have stated they are dedicated to Long Covid care. There are many rehabilitation or physiatry clinics in the United States that would be able to treat people with Long Covid , but these clinics are not specifically dedicated to this disorder.
List of Clinics Specializing in Long Covid Care (by state and town)
CA; South Los Angeles; St. John's Well Child and Family Center
CA; Sacramento; UC Davis Post-COVID-19 Clinic
CA; San Francisco; UCSF Health OPTIMAL Clinic
CO: Aurora; University of Colorado Post-Covid-19 Clinic
CT; New Haven; Yale Medicine Post-Covid Recovery Program
DC; Washington, DC; George Washington University Covid-19 Recovery Clinic
IA; Iowa City; University of Iowa Respiratory Illness Follow-Up Clinic
IL; Chicago; UChicago Medicine Post-Covid Recovery Clinic
IL; Chicago; Northwestern Memorial Hospital Neuro Covid-19 Clinic
MA; Boston; Spaulding Rehabilitation Hospital Covid Clinic
MI; Ann Arbor; University of Michigan Post-ICU Longitudinal Survivor Experience Clinic
MN; Rochester; Mayo Clinic Covid-19 Program
NY; Jamaica, Queens; Jamaica Hospital Medical Center COVID Clinic
NY; New York City; Mount Sinai Center for Post-Covid Care
NY; New York City; Montefiore Medical COVID-19 Recovery Clinic
OH; Cleveland; Cleveland Clinic Long Covid Clinic
PA; Philadelphia; Penn Medicine Post-Covid Recovery Clinic
TX; Clear Lake; University of Texas Medical Branch Post-COVID Clinic
WA; Seattle; Harborview Medical Center Post-COVID Rehabilitation and Recovery Clinic
Facebook users with Long Covid should check out Survivor Corps, a group for people who continue to suffer symptoms of COVID-19. The group has more than 150,000 followers. You can also learn more about Survivor Corps on its website.
Our Take on This Week’s News:
The onslaught of information about Long Covid is one of the most challenging, impressive and exciting things we’ve seen in our time as medical writers. After all, barely a year ago the world hadn’t heard of SARS-CoV-2 or COVID-19, let alone been aware that the new infection could lead to chronic illness. Now, Long Covid is a field of study in its own right.
The bottom line: A boatload of data is on the way, and that can only be a good thing for Long Covid sufferers. But beware: Not every study, or news story, pans out. Don’t be surprised if that shiny something you read today looks a bit tarnished tomorrow. And when that happens, don’t get angry. Scientists—and science journalists—do their best, but with a condition as new as COVID-19, everyone is scrambling to describe an elephant while wearing a blindfold.
WHO Cares:
The World Health Organization has set its sights on cracking the case of Long Covid. This month, the WHO is planning a series of “consultations” with experts to come up with a consensus for how to define Long Covid — its symptoms, subtypes and other distinguishing features. The agency will be seeking input from specialists and patients.
In the meantime, the WHO is recommending follow-up care for people with Long Covid, which the agency also calls “post-Covid condition” or “post-acute Covid syndrome”. For more, check out this story on AllAfrica.com.
(By the way, former president Trump had announced he was going to pull out of the WHO, but now-president Biden has reversed that decision.)
Studies of the Week:
“Six-month neurological and psychiatric outcomes in 236,379 survivors of COVID-19.” Researchers at the University of Oxford, in England, found that about 1 in 8 patients who have recovered from Covid-19 develop a mental health or nerve problem within just six months of testing positive for the virus.
When the research team, led by Maxime Taquet, PhD, looked just at patients who had been diagnosed with a psychiatric or neurologic condition before contracting the infection—in other words, they had a history of these conditions—the ratio was 1 in 3 patients.
The new study has yet to undergo peer review – an important process by which other experts evaluate the strength of a piece of research before it’s published. The findings are startling, however, and support similar, earlier results from Taquet’s group, which found that 18% of patients who had COVID-19 would be diagnosed with a psychiatric disorder--anxiety, depression or insomnia—within three months.
Another report comes from Wuhan, China, ground zero of the COVID-19 outbreak. The study, published in The Lancet – one of the world’s oldest and most prestigious medical journals -- looked at how people who’d survived COVID-19 fared 6 months after diagnosis with acute infection. Roughly three-fourths of them said they experienced at least one symptom of Long Covid, problems like weakness, fatigue, trouble sleeping, anxiety and depression.
A similar, as-yet-un-peer-reviewed international study from medRxiv looked at Long COVID sufferers from 56 countries, and found about half were unable to maintain full-time jobs 6 months after initial infection. Many had multiple symptoms, the most frequent of which were fatigue (78% of patients), discomfort or feeling ill after mild exertion (72%) and difficulty thinking — sometimes called “brain fog” (55%).
Although some physicians think that lingering symptoms following a serious illness might be “all in your head,” these studies and others make it clear that Long Covid is a real phenomenon. It is not in your head!
Quotation of the Week:
Anthony Fauci, MD, the director of the National Institute of Allergy and Infectious Diseases (NIAID), on the Rachel Maddow Show (MSNBC):
"They [those with Long Covid] are virologically okay. The virus is no longer identified in them, but they have persistence of symptoms that can be debilitating. … It can be really quite disturbing."
News of the Week:
A variant of the novel coronavirus, first detected in Brazil and named P.1, made its first known appearance in the United States, in a patient in Minnesota. Based on how this variant behaved back in Brazil, experts are concerned that it may be more easily transmissible. It is not known what effect this variant will have on the numbers of people suffering from Long Covid.
Datapoint of the Week:
10% of nearly 1,000 patients with severe COVID-19 were found to have antibodies attacking type 1 interferon molecules.
Why this matters:
Interferon usually boosts the immune response to viruses, bacteria and other so-called “pathogens” that invade the body and cause disease. The fact that such a relatively large percentage of patients have ‘autoantibodies’ against interferon might explain some of the effects of Long Covid and account for patients who experience unusually severe bouts of COVID-19.
Clinician of the Week:
For our first newsletter, we tip our hats to Anthony Fauci, MD, the public face of the nation’s battle against Covid-19. Fauci has led NIAID since 1984 and is now the chief medical advisor to President Biden. A pioneering HIV/AIDS researcher, Fauci has received many awards, including the Presidential Medal of Freedom.
Tweet of the Week:
Homework:
The National Institute for Health and Care Excellence is based in the United Kingdom, but about a month ago they developed and published guidelines for clinicians in the UK on how to care for patients with Long Covid. The guideline offers the institute’s best advice at the time, based on available evidence. You might consider sending it to your own caregiver to make sure they’re aware of the recommendations.