Covid Long Haulers – Affects All Ages

Persons of all ages become sick for a long time, months, and possibly years, which often starts after mild initial symptoms.

As with many other aspects of Covid, seeing is better than reading. Watch These Videos. You will not forget them.

UPDATED 1-13-21 Watch the video below to hear the stories of people in their 20s with long Covid. PBS Newshour 13 minutes

The medical community scrambles to understand COVID-19 ‘long haulers’ This video is about people in their 20s and their struggle to get help and their persistent symptoms.  

Link to more information, audio, and complete transcript.

11-24-21 Post-Acute Covid-19 Syndrome: covid “long haulers” 13 minutes

Persons with Long Covid interviewed included a personal trainer, a competitive marathon runner, and a physician treating long haulers. The video below is about people in their 40s and a New York clinic that is helping them.

What is a Covid Long Hauler and what are the symptoms?

Any person, of any age, who gets Covid can become a long hauler. Often long haulers don’t go to the hospital as they don’t feel very sick. The symptoms start later.

Long haulers test negative for SARS-CoV-2. The damage has been done, and there is nowhere for the virus to infect, and it is gone from our bodies.

Covid travels through our bodies in our blood vessels and can significantly affect many parts of the body, including the brain, heart, liver, etc., and can cause death.

Click continue reading for lots more information on symptoms, long term effects on society from disabled persons, why medical professionals took so long to recognize it as physical and not “just in your head”, etc..

While most persons with COVID-19 recover and return to normal health, some patients can have symptoms that can last for weeks or even months after recovery from acute illness. Even people who are not hospitalized and who have a mild illness can experience persistent or late symptoms.

Dr. Mary Fowkes, a pathologist who first discovered that Covid can affect many parts of the body – a short segment in the video above

She dissected hearts, brains, and other organs and found physical damage. I had been following her research since April or May. Unfortunately, she died of a heart attack on November 15.

Dr. Fowkes helped physicians and others understand that Covid-19 is not just a respiratory disease but can affect many other organs in your body.

The most commonly reported long-term symptoms include Fatigue, Shortness of breath, Cough, Joint pain, Chest pain.

Other reported long-term symptoms include Difficulty with thinking and concentration (sometimes referred to as “brain fog”), Depression, Muscle pain, Headache, Intermittent fever, Fast-beating or pounding heart (also known as heart palpitations).

What percent of Covid-19 patients become long haulers?

Researchers estimate about 10% of COVID-19 patients become long haulers, according to a recent article from The Journal of the American Medical Association and a study done by British scientists. Link to article with references.

Covid-19 incidence is highest in young adults. Assuming 10% of persons are affected, this is a lot of young people getting Long Covid.

National Estimate of Covid-19 incidence per 100,000 population by Age Group – Data through December 16, 2020

Source of table data: CDC Phased Allocations of Covid-19 Vaccines

Age Range Number per 100,000 who get Covid

85+5,064
75-843,147
65-742,977
50-643,993
40-494,543
30-344,671
18-295,489
5-171,944
0-41,135

Post-polio syndrome – many years after recovering from polio

A friend of mine got polio in the 1950s before the vaccine was available. He recovered, but his post-polio symptoms started in his 20s.

Poliomyelitis is caused by the polio virus. The wild polio virus has been almost eradicated but still found in Afghanistan, Nigeria, and Pakistan.

The post-polio syndrome affects people who have had acute episodes of poliomyelitis. It occurs 10 years or more after the original illness and can occur 40 years afterward. According to one estimate, 25% to 50% of the 300,000 polio survivors in the United States may develop the syndrome.

This can happen with other viruses. For example, someone who’s had chickenpox may develop shingles much later in life. SARS-1 and Ebola survivors had similar problems.  

Where did the term “long hauler” come from?

I remember when I first read the term “long hauler” but never got a good explanation for why that term was used. The only other long haulers I know if are truck drivers. Some people, particularly those that have it, say the name “trivializes” it.

A January 1, 2020, Wall Street Journal article, ‘Long-Hauler’ When Covid-19s Symptoms Last and Last’ finally explained it. The author, Ben Zimmer, is a linguist and lexicographer. The article is behind a paywall, but I read it on Apple News, free on Apple devices. Apple News is my favorite place for Covid news and information. I select which news sources I want to read.

In April, Amy Watson, a preschool teacher, got a positive test result. She wore a trucker hat with a picture of a squirrel on top”. She started a Facebook Group, Long Haul Covid Fighters. She said, “I was sitting in my living room, and that hat I wore in the picture was on the coffee table.” The trucker hat got her thinking of long-haul trucking, inspiring her to name Long Haul Covid Fighters’ Facebook group. The easiest way to find the private group is to google the name in quotes. “Long Haul Covid Fighters – Round 1”

In June, I read an excellent article in Atlantic Magazine by Ed Yong, one of my favorite Covid writers, Covid-19 Can Last For Several Months. I had been listening to podcasts and reading since April that interviewed long Covid survivors. Yong’s article used the name “Long-Haulers,” which was picked up by the mainstream media.

Ed Yong’s article let many others know about this. He interviewed long-haulers plus medical experts. Underneath the headline was “The disease’s “long-haulers” have endured relentless waves of debilitation symptoms – and disbelief from doctors and friends.


Terminology – many terms are used which is confusing

Today I see Long Haulers, Long Covid, Long Haul Covid, Long Term Covid, post-acute Covid syndrome, and Post-Acute Sequelae of COVID-19

Dr. Fauci prefers Long Term Covid.

Long-Haulers was used at first to refer to the people affected. There was no other term used as the disease had no name. Now it is recognized by the medical community but has many names. Hopefully, one name will be used soon.

Recently, I have seen “Post-Acute Sequelae of COVID-19” used but is too hard to understand by most people because of the word Sequelae.

Sequela: A pathological condition resulting from a prior disease, injury, or attack. For example, a sequela of polio. Verbatim from the Latin “sequela” (meaning sequel). Plural: sequelae.

Experts Say COVID-19 ‘Long-Haulers’ Need a New Name 11-8-20

Diana Berrent, the founder of Survivor Corps, speaks with Dr. Fauci in a one-on-one conversation about Long Term Covid. Recorded 10-30-20

Topics: Long Term COVID, Post-Covid Care, and the future of treatments for Survivors who have not recovered.

Facebook group with 137,780 members: Survivor Corps HQ (for those with Long Term Covid). If you, or someone you know, has long term Covid, tell them about this group. Be sure to search for the full name on Facebook: Survivor Corps HQ. Direct link to the Facebook group.

Link to Survivor Corps Webinar series, with understandable medical experts focusing on Long Covid

What could be the long term effects on society?

Speaking at a December 3-4, 2020 NIH workshop, “Post-Acute Sequelae of COVID-19,” Dr. Fauci said, “This is a phenomenon that is really quite real and quite extensive,” Note: This workshop is technical but goes over many medical aspects in detail for anyone having symptoms after recovering from Covid. It focuses on those who were hospitalized but also applies to Long Haulers. See above the video for understandable medical interviews.

“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.”

Younger affected people may have to be cared for for the rest of their lives, a significant issue.

Dr. John Brooks, the chief medical officer of the C.D.C.’s Covid response… said he expected long-term post-Covid symptoms would affect “on the order of tens of thousands in the United States and possibly hundreds of thousands.”

Why did it take so long for long haulers to be recognized as having a medical problem?

“We Don’t Know” is the most commonly repeated phrase for Covid-19. This definitely applies to long haulers. This has only been recognized as a significant health problem recently.

For many months, those affected were told they had mental health problems. When they went to the emergency room, the standard tests did not show anything. They did not test positive for Covid-19.

Finally, the medical community has recognized this significant problem. Medical professionals listen to them and try to help. There are online support groups, which can really help. 

As with many aspects of the novel SARS-CoV-2 virus that causes Covid-19, not much is known. Every day we are learning more. The virus affects humans very differently than SARS-1 and other types of coronavirus.

Why some previously healthy, often young, adults still haven’t recovered from the disease has stymied physicians.

Dr. John Brooks from the CDC said “If you were to ask me what do we know about this post-acute phase, I really am hard pressed to tell you that we know much. This is what we’re really working on epidemiologically to understand what is it, how many people get it, how long does it last, what causes it, who does it affect, and then of course, what can we do to prevent it from happening.”


What causes long-haul Covid?

Of course, no one knows much, but there is some speculation.

Continued inflammation and over-reactive immune responses to the virus are among the possible.

COVID-19 may also interfere with the autonomic nervous system’s function, which controls involuntary processes such as respiration, heart rate, blood pressure, and digestion, at least in some patients.

Are there any treatments?

Not much can be done. When possible, physicians can offer treatment to relieve patients’ symptoms. There is no standard treatment protocol for people because symptoms vary. We know very little about this condition.

Vaccination is best way to not get long haul Covid.

Earlier this year, no one knew what was happening to long haulers

Medical professionals often assumed it was psychological and referred people to mental health professionals. They did standard medical tests.  which was very stressful and discouraging for those affected.

They were looking for lung damage causing breathing problems. Few knew that it was traveling through blood vessels to other organs, such as the brain and heart. Covid may have been was gone, but the damage was done.

What we are learning now

Now we know, for example, small blood clots caused brain damage. “Brain fog” and other thinking problems are a common problem, with the inability to focus, memory problems, etc., reported by many patients.

The lingering symptoms in younger people and those who were not hospitalized for the coronavirus “urgently needs to be better understood and investigated.”

What the CDC says about symptoms (updated November 13, 2020)

As the pandemic unfolds, we learn that many organs besides the lungs are affected by COVID-19, and there are many ways the infection can affect someone’s health.

While most persons with COVID-19 recover and return to normal health, some patients can have symptoms that can last for weeks or even months after recovery from acute illness. Even people who are not hospitalized and who have a mild illness can experience persistent or late symptoms.

Multi-year studies are underway to further investigate.

More serious long-term complications appear to be less common but have been reported. These have been noted to affect different organ systems in the body. These include:

Cardiovascular: inflammation of the heart muscle, Respiratory: lung function abnormalities, Renal: acute kidney injury, Dermatologic: rash, hair loss, Neurological: smell and taste problems, sleep issues, difficulty with concentration, memory problems, Psychiatric: depression, anxiety, changes in mood

The long-term significance of these effects is not yet known. CDC will continue the active investigation and provide updates as new data emerge, informing COVID-19 clinical care and the public health response to COVID-19.  

CDC: Long-Term Effects of COVID-19 Updated 11-13-20

My comments

I have been hearing about long haulers since April and wrote about them first in my August 1 newsletter. I have listened to many podcasts interviewing them. I was waiting to hear that the medical community was recognizing it before I wrote more about it. The video above inspired me to write this article.

I worry a lot about becoming a long hauler. My brain has to function, or I cannot work. I don’t want years of being fatigued—etc.

Resources

Articles

Understanding Long-Haul COVID-19 Well written and understandable. Good references. 12-14-20.

Discussion of many aspects with good links for more information 12-29-20. Explanations for ‘long Covid’ remain elusive. For now, believing patients and treating symptoms is the best doctors can do.

The Problem of ‘Long Haul’ COVID. 12-29-20 Good analysis of the issues with links. From Scientific American

From the CDC Late Sequelae of COVID-19 – Slides with many graphs that show the details of what is happening to persons. 12-20-20 First 15 slides. Very detailed but the many graphs and tables help understanding the effects of Long Covid.

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