Meet the Long Haulers

People suffering from long-term COVID-19 symptoms need recognition and research.

As schools and businesses consider opening up, there is a group of people everyone needs to meet called the “long haulers.” Long haulers are people with mild to moderate cases of COVID-19 who suffer from long-term symptoms of the virus. Most were never admitted to a hospital for treatment and yet week after week they suffer from unexpected, life-altering symptoms like difficulty concentrating, severe joint pain, memory problems, dizziness, heart palpitations, nerve pain, blurry vision, and even hair loss.

People infected with COVID-19 have known that the virus can be much more than a flu for months now. Members of a Facebook group for COVID-19 survivors called Survivor Corps1 have long posted that they still felt terrible 2, 8, even 16 weeks out from their diagnosis. Group members’ symptoms are often measured by how many weeks, not days, they lasted. I saw pictures of the many strange COVID-19 symptoms like Covid toes well over a month before seeing them reported on the news. While state governments are tracking COVID-19 hospitalization rates and positive test rates, people not sick enough to be hospitalized often end up at home with little medical supervision. This data gap made it clear to me that long haulers are the world’s current experts in mild to moderate COVID-19 symptoms and so I partnered with Survivor Corps to start analyzing their astounding dataset of almost 1 million posts about people’s experiences fighting the disease.

We started with a simple poll asking long haulers to report all of their long-term COVID-19 symptoms.2 To anyone who thinks of COVID-19 as a flu, the results will be shocking. The over 1,500 long haulers who took our survey reported 98 unique symptoms that last for weeks or months after a positive Covid test. To put that into perspective, the CDC’s main COVID-19 symptom page lists 11 symptoms, most of them flu-like.3 I’ve seen pictures members posted of large clumps of hair that fell out weeks into COVID-19, as well as questions asked over and over about how to deal with fatigue so extreme you can’t get out of bed. I saw desperate queries asking if anyone had recovered from severe nerve pain in their feet and hands, and which heart scan to ask your doctor for if you have a racing heart AND an irregular heartbeat.

There is another side effect the long haulers are trying very hard to overcome and that is many family members’ and employers’ disbelief that they are “still sick.” This is at the heart of a lot of my research; the strange approach Americans have to health in which you are “healthy until proven ill.” Long haulers are told that they must return to work or lose their jobs. They face frustration from family members that they aren’t able to do chores around the house a month after their cough and fever went away. Many long haulers report that their doctors have ignored their requests for scans and long-term recovery help, getting diagnoses of anxiety instead of heart scans. New research has found that COVID-19 can indeed damage the heart.4 Further research will likely validate more unrecognized COVID-19 symptoms.

The CDC recently reported that as many as 1 in 3 adults and 1 in 5 18- to 35-year-olds who were previously healthy still suffer from COVID-19 symptoms 2-3 weeks after having a positive test.5 Considering that many of us are soon to be members of the long haulers’ club, it’s essential that everyone support their friends, family members, and co-workers who say they are still sick months after coming down with COVID-19. Additionally, we need more researchers and funding focused on understanding the whole scope of health problems people face while recovering from COVID-19 just as much as we need researchers developing vaccines and plasma therapies.

I’m confident that together we will win the fight against this virus, and all the smartest people I know are working hard to make that happen. The 90,000 bravest people I’ve ever met are helping us beat COVID-19 by sharing their stories and supporting each other in Survivor Corps. But until we have more answers, please – do what you can to avoid joining the club.

This blog is the intellectual property of Dr. Natalie J. Lambert. Any use by the press or any other entity for re-print must acknowledge Dr. Lambert and link to the original blog post.

Artwork by: J.A. Eise: @jaeise_art

References

  1. https://www.facebook.com/groups/COVID19survivorcorps
  2. https://nataliejlambert.files.wordpress.com/2020/08/119c9-2020survivorcorpscovid-1927longhauler27symptomssurveyreport28revisedjuly25.429.pdf
  3. https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms.html
  4. https://jamanetwork.com/journals/jamacardiology/fullarticle/2768915
  5. https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm?s_cid=mm6930e1_w

Published by Dr. Natalie J. Lambert

Associate Professor of Medicine

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: