Long-Haulers Syndrome, The Post-COVID Infection Journey

Posted on April 14, 2021   |   
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This blog post was written by Katie Keating, RN, MS, patient advocate.

Long-haulers syndrome can affect anyone who has been affected by a serious illness — young, old, those who were healthy, those who have had a chronic condition, those who have been hospitalized and those who have not.

What is Long-haulers Syndrome?

Long-haulers syndrome related to COVID-19 is characterized by long-lasting symptoms which often include coughing, tightness in the chest, shortness of breath, headaches, muscle aches, and diarrhea. The most significant symptom that is being seen in coronavirus long-haulers syndrome is fatigue; this group feels very run down and tired. Patients with this syndrome may not be able to exert themselves or exercise, and simple tasks could leave them feeling exhausted with debilitating and frustrating chronic fatigue-like symptoms. Many long-haulers also report brain fog, difficultly concentrating, or feel as if they aren’t “as sharp as they used to be.”1

Who is experiencing Long-haulers Syndrome?

Tens of thousands of people in the United States are experiencing lingering illness following COVID-19. There is not enough research to predict who develops long-haulers syndrome but having a preexisting condition that classifies you as “high-risk” may give you a high likelihood.1 We also know that COVID-19 causes and inflammatory response in the body which can affect multiple organ systems for an extended period of time. More research needs to be done in order evaluate a COVID-19 patient’s risk in getting long-haulers syndrome.

Are COVID-19 Long-haulers contagious?

The short answer is no. According to the Harvard Medical School, published studies and surveys conducted by patient groups indicate that 50% to 80% of patients continue to have bothersome symptoms three months after the onset of COVID-19. These symptoms are reported after tests no longer detect the virus in the body. Some patients report that they have not been able to return to a pre-COVID-19 level of health and function after six months. Having these symptoms suggests that the patient may be experiencing “long COVID”, even though the patient may show no evidence of permanent damage to the lungs, heart, or kidneys that could cause those symptoms.2

What can Long-haulers do to recover?

Patients that are experiencing symptoms of COVID-19 lasting more than 28 days should notify their doctor3. It may be important to do an extensive health assessment to evaluate their pulmonary, cardiovascular, behavioral, and neurological health.1 There are rehab programs being developed to assist patients who are being diagnosed with long-haulers syndrome. These programs will aide long-hauler patients in increasing strength and endurance, while managing the lasting symptoms from their COVID-19 infection.

Is there research being conducted about Long-hauler’s syndrome?

One NIH study will focus solely on the neurologic impacts of COVID-19, including stroke, loss of taste and smell, and brain fog. Another study will bring patients who have had COVID-19 symptoms for at least six months to the NIH Clinical Center for an inpatient stay during which they will undergo detailed physiologic tests.4

In general, COVID-19 is still very new to everyone. Although research is currently being conducted on COVID-19 and related long-haulers syndrome, it is important that you maintain in contact with your healthcare providers and notify them of any concerning symptoms you may be experiencing.

Blogger’s Note:

The quarantine, and now people with enduring symptoms like the long-haulers, opened the eyes of many as to what it is like to live with chronic disorders. We can hope that new NIH research will benefit long-haulers by offering other diagnostic tools and treatments to help improve quality of life post COVID.

Spring is a new beginning for all. Enjoy the newly found freedom once fully vaccinated, enjoy simple luxuries, life’s precious moments.

The COPD Foundation advises that before you make any changes to your medication or therapies that you first consult with your doctor.

1. https://health.clevelandclinic.org/what-it-means-to-be-a-coronavirus-long-hauler/
2. https://www.health.harvard.edu/blog/the-tragedy-of-the-post-covid-long-haulers-2020101521173
3. https://www.cdc.gov/me-cfs/about/index.html
4. Long-COVID Cases Rise as Stigma of Chronic Fatigue Taunts – Medscape, Jan 14, 2021,Carrie Arnold https://www.medscape.com/viewarticle/943886#vp_