Testing positive for COVID-19 can be a scary experience for any patient, regardless of whether or not they have symptoms. If they do have COVID-19 symptoms and those symptoms don’t go away within the expected timeframe, the cause for concern may only grow stronger.

This is largely because the Coronavirus was manufactured to attack our large organs (i.e; pulmonary, cardiac, kidney, digestive). What we do not hear much about is the effect of this norovirus on the central nervous system. The COVID-19 virus load can store and stay in pockets of your neural-network, creating “toxic-pockets” that rear-up to cause havoc with your neuroreceptors, leaving chronic problems with smell, touch, taste, mood, skin, breathing, and exhaustion.

There are still so many unknowns and questions left unanswered. In this blog post, we’re going to discuss what we do know about the long-term effects of COVID-19, and how you can best support patients who may be experiencing them.

First, let’s cover some of the basics…

Who qualifies as a COVID “long hauler”?

While everyone experiences the effects of COVID-19 differently and for varying periods of time, someone who has COVID-19 symptoms for several weeks or months would be considered a “long hauler”. They have tested negative for COVID-19 but are still feeling sick, or not like themselves.

COVID-19 long haulers can be both old and young, with or without pre-existing health conditions.

What are some of the common long-term effects of COVID-19?

According to the Centers for Disease Control and Prevention (CDC), the most commonly reported long-term symptoms include: fatigue, shortness of breath, cough, joint pain, and chest pain.

Other reported long-term symptoms include: brain fog, depression, muscle pain, headache, intermittent fever, and heart palpitations.

More serious long-term complications appear to be less common but have been reported, the CDC says. These complications 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

Why do long haulers continue to feel the effects of COVID-19, while others have recovered?

This is a major unknown. As the virus is still new and only recently have long haulers begun to receive attention, large systematic studies of long-term effects need to be conducted in order to understand who experiences them and why.

What we do know is that COVID-19 causes an inflammatory experience in the body, which can trigger a number of different events with various symptoms.

It’s possible that long haulers still have a very small amount of the COVID-19 infection in their bodies, though this has not been proven. Other theories suggest that even though the infection has passed, their autonomic immune systems continue to overreact, like “reflex-memory”. More research is needed to determine why some experience prolonged symptoms and others do not.

Are long-haulers still contagious?

Most likely not. Those who have had an active infection like COVID-19 will typically stop being contagious after about one week, or once they’ve started to recover. Since long haulers test negative for COVID-19, they should not be able to pass the infection to others.

Should long-haulers get the COVID-19 vaccine?

The CDC recommends that long haulers get the vaccine six months after having had COVID. To be safe, infectious disease experts suggest consulting a physician before getting the vaccine.

How to Support Long-Haulers

The COVID-19 pandemic has been an isolating experience for everyone, including those who haven’t had the virus. It’s understandable, then, how long haulers could feel especially alone in their struggle. Fortunately, there are numerous things you can do as an agency to help long haulers feel supported and cared for in their journey to recovery.

Validate their feelings. While approximately 25% to 35% of people experience lingering symptoms and other side effects of COVID-19, only recently have long-haulers gotten serious attention in the media. Because of this and the lack of research that exists, these patients may grow increasingly scared and frustrated. They may also feel guilty or confused, as if their symptoms are only in their head. It’s important to take the time to let these patients express their concerns to you, hear them out, and confirm that what they are feeling is real. Be sure to let them know that they are not alone in their struggle.

Expand their network. We all know the power of a supportive network when it comes to healing. Consider starting a virtual support group for those experiencing long-term COVID-19 symptoms. Talking to others going through a similar situation can help patients feel much less isolated and may even boost their spirits. They can also check out online groups like Survivor Corps, which was formed by a long hauler to connect, support, educate, motivate, and mobilize COVID-19 survivors.

Encourage a healthy diet and lifestyle. The best way to flush the COVID-19 viral cells out of the body is with the 3-F’s; Fluids, Fiber, and Fight! While fruits and vegetables may not heal COVID symptoms, their fiber acts as little brushes, “roto-rootering” to detoxify your lymphatic, blood, intestinal, and urinary tract systems. Encourage the consumption of healthy, immune-boosting foods, like citrus, berries, and leafy greens.

Additionally, COVID-19 is a sticky virus. It likes a dormant body that won’t shake it out of its hiding pocket. Fighting back with increasing amounts of exercise in the form of standing up, vibration plates, slowly walking from one end of the room to the other, and incorporating a few easy stretches into their days, can help them regain some of the strength, flexibility, and balance they may have lost to COVID. Finally, lemon water and sleep are essential and arguably the most important components to every kind of recovery.

Help them find the right recovery program. Chronic disorders are exhausting for patients. Help your patients to pinpoint which long-term COVID-19 symptom is affecting them most. Combat the issue symptomatically, consistently and directly. For example, you can support those suffering from psychiatric difficulties such as depression or anxiety by arranging a virtual appointment with a mental health specialist. For neurological problems such as poor sleep, memory, or concentration, consulting a dietitian, neurologist, psychologist, or chronic fatigue specialist may be the solution.

Know the signs that require emergency intervention. Last but not least, be sure you’re doing your part to stay on top of the latest COVID-19 research, and take the time to educate your caregivers on symptoms and warning signs. Include tracking and reporting COVID-19 symptoms by programming the Task Buttons within your HHAeXchange clock in/clock out system or other tools. Monitor your long haulers as you would your COVID-19 patients, and if you notice any worsening symptoms, contact a physician.

For more tips and resources on conquering COVID-19’s various challenges, check out HHAeXchange’s COVID-19 Agency Toolkit.

Louise Weadock, RN, MPH is the Founder and Chief Nursing Officer of ACCESS Nursing, a Joint Commission-certified health care services agency operating in private and hospital-based offices in New York City, Westchester County, and New Jersey.