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August 21, 2020

By now you may have seen accounts by people who feel ill for months after having COVID-19, often referred to as “long haulers.” This week the recognition of COVID’s long-term effects has gone mainstream, with articles in the August 21 edition of the MMWR (CDC’s Morbidity and Mortality Weekly Report), the August 20 Wall Street Journal, and the August 21 Johns Hopkins Newsletter. Ironically, one of the problems long haulers have is getting medical authorities to believe them.

When you don’t even trust yourself

Medical gaslighting they call it. (1) The undermining of your reality. Because many of the symptoms that persist–brain fog, fatigue, headaches, pain–are invisible and hard to demonstrate. Yet in a recent survey of outpatients diagnosed with COVID the CDC found that about 35% did not feel normal after 2-3 weeks. In the 18-34-year-old range, 20% had not fully recovered. “In contrast,” the CDC report said, “over 90% of outpatients with influenza recover within approximately 2 weeks of having a positive test result.” (2)

But there are reports of people having symptoms for months, many of them younger people, diagnosed with COVID and never hospitalized. The most recent Johns Hopkins Newsletter calls attention to two articles by science journalist Ed Yong in the Atlantic, one on June 4, 2020, and a follow-up on August 19. In the June article, Yong interviewed 9 long haulers. One of them calls her situation “the middle ground, where it knocks you off your feet for weeks, and you neither die nor have a mild case.” The article mentions two support groups on Slack and Facebook (3).

The Atlantic’s August article adds results of several international studies, an interview with someone on day 150 of their COVID symptoms, more support group information, and a study by David Putrino, a neuroscientist at Mount Sinai Hospital in New York. Most of the long-haulers he surveyed are women, average age 44, and previously healthy. Some recover. Some have lung damage. (4)

The good news is that help is available in the form of support groups and clinics. Try #longcovid on Twitter. Or check out one of these support groups:

  1. Support Group on Slack. https://www.wearebodypolitic.com/covid19 . Started March 26, 2020, and has 14,000 members.
  2. Facebook: https://www.facebook.com/groups/COVID19survivorcorps/ with 95.5 K members.
  3. C19 Recovery Awareness (from the August Atlantic article) lists an impressive number of resources and recovery programs, including 11 Facebook groups in 6 languages. https://www.c19recoveryawareness.com/support

Long-term clinics are now available as well. For example:

  1. Center for Post-COVID Care, Mount Sinai Hospital, New York. https://www.mountsinai.org/about/covid19/center-post-covid-care
  2. Research and innovation for post-Covid-19 Rehabilitation (RICOVR) , Sheffield Hallam University. https://www.shu.ac.uk/research/specialisms/advanced-wellbeing-research-centre/ricovr
  3. Neuroinfectious Diseases Program at Northwestern Memorial Hospital in Chicago. https://www.nm.org/conditions-and-care-areas/neurosciences/neuroinfectious-diseases-program treats the following neurological effects of COVID-19: headache, dizziness, trouble concentrating, weakness, muscle pain, and decreased sense of smell or taste.

And, finally, check out the Mayo clinic website has an article dated August 18, 2020, about the long-term effects of COVID-19 on multiple organ systems, including the brain, heart, and lungs. (5) And this is only what we’ve learned in 6 months. We don’t know what “long term” even means for this coronavirus.

It looks like the gaslighting days are over.

Related Headlines:

“As Covid-19 Symptoms Linger, Demand for Specialized Clinics Surges,” Wall Street Journal, August 20, 2020. https://www.wsj.com/articles/as-covid-19-symptoms-linger-demand-for-specialized-clinics-surges-11597925200

“Long-term symptoms, complications of COVID-19,” Mayo Clinic, August 3, 2020. https://newsnetwork.mayoclinic.org/discussion/long-term-symptoms-complications-of-covid-19/

“A negative COVID-19 test does not mean recovery,” Nature, August 11, 2020. https://www.nature.com/articles/d41586-020-02335-z

“Fauci Warns About ‘Post-Viral’ Syndrome After COVID-19,” Healthline, July 16, 2020. https://www.healthline.com/health-news/fauci-warns-about-post-viral-syndrome-after-covid-19

Additional Sources:

(1) “COVID-19 Can Last for Several Months,” Ed Yong, The Atlantic. June 4, 2020. https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/

(2) “Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network,” United States, March–June 2020. MMWR, July 31, https://www.cdc.gov/mmwr/volumes/69/wr/mm6930e1.htm#T1_down

(3) Johns Hopkins Newsletter, Aug. 21, 2020 (last section): https://myemail.constantcontact.com/COVID-19-Updates—August-21–2020.html?soid=1107826135286&aid=npjdTWmrySE

(4) “Long-Haulers Are Redefining COVID-19.” Ed Yong, The Atlantic, August 19, 2020. https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/

(5) COVID-19 (coronavirus): Long-term effects, Mayo Clinic, August 18, 2020.

Why am I doing this?

The coronavirus pandemic will be indelibly written on our memories just as the Great Depression or the Battle of Britain left their mark on past generations. It is my intention to journal the events of these days from three perspectives: as a retired medical technologist, a historian (Ph.D., 2014), and an ordinary person living through an extraordinary crisis.

You are on History’s Edge.

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