It’s no secret that COVID-19 can cause lingering symptoms, some of which persist for months. In fact, there is a name for those who deal with the lasting symptoms of the respiratory virus: long haulers. These people are now being diagnosed with historically underdiagnosed diseases, giving a name to the persistent effects they’ve been facing. Conditions like postural orthostatic tachycardia syndrome (POTS) and chronic fatigue syndrome (CFS) are now being diagnosed in a large number of long haulers.
Postural orthostatic tachycardia syndrome (POTS) is a form of dysautonomia. It causes symptoms like a rapid increase in heart rate, orthostatic intolerance, blurred vision, dizziness, headache, fatigue, gastrointestinal symptoms, and anxiety, among others. Doctors are unsure what the exact cause is; however, episodes are often triggered by pregnancy, trauma, major surgery, or a viral illness. There are a number of medications that doctors use to treat POTS, all of which intend to relieve low blood volume and regulate circulatory problems. Examples include midodrine, clonidine, and benzodiazepines.
CFS, also referred to as myalgic encephalomyelitis, is a chronic disorder that is characterized by severe, unexplainable fatigue. This exhaustion greatly impacts patients’ lives, as it makes it difficult to accomplish daily tasks and does not lessen with rest. Females are more commonly affected than males, and it is most often seen in those between the ages of 30 and 50. Medical professionals do not know what causes CFS, but they suspect a number of different triggers like viral infections, genetics, issues with the immune system, and hormone imbalances. Most recently, it has been linked to COVID-19. Regardless of the cause, possible symptoms of CFS include:
- Issues with concentration (brain fog)
- Intense fatigue
- Low stamina
- Blurred vision
- Sleep problems
- Pain in muscles and/or joints
- Sore throat
- Swollen lymph nodes in the neck and/or armpits
- Bowel dysfunction
These symptoms often worsen upon sitting up or standing, and they can restrict affected individuals from performing daily tasks, maintaining a steady job, and having a high quality of life. In addition, this condition is most likely underdiagnosed due to the lack of awareness. If it is diagnosed correctly, treatment is aimed at lessening symptoms. Treatment options include avoiding overexertion, establishing good sleep habits, pain management, physical and cognitive therapy, antidepressants, and diet changes.
Diseases After Fighting COVID-19
Fighting COVID-19 is scary enough on its own; the respiratory virus has swept through the world, resulting in 174 million cases and 3.74 million deaths. Now, many patients are finding that their symptoms do not disappear after the virus has run its course, even if they test negative. For many of these patients, the effects have changed their lives. They are unable to complete their daily routines, perform simple tasks, or return to their life as it was before the pandemic.
An expert on CFS and POTS, Dr. Peter S. Rowe of Johns Hopkins University, has stated how he and other medical professionals have seen many patients with these diseases after a COVID-19 infection. Through all of his work, Dr. Rowe has been able to publish a paper on the connection between COVID-19 and CFS. Unfortunately, CFS and POTS have been ignored and dismissed prior to the pandemic, leaving a lack of information, awareness, and treatments.
A separate survey aimed to understand the prevalence of POTS within long haulers, in which 3,762 patients were screened. The results led researchers to declare that any patient who battled COVID-19 who is now presenting with brain fog, rapid heartbeat, fatigue, or dizziness should be screened for POTS. Hopefully, there will be improvements within the diagnostic process for this condition, especially as there has been a sharp increase in patients.
Will Awareness Increase?
One of the major issues facing POTS and CFS patients before the pandemic was a lack of awareness and resources. Patients are often misdiagnosed or go for years without a diagnosis, as medical professionals are often unaware or under-informed on these conditions. Lauren Stiles, the founder of Dysautonomia International, hopes that the increase in cases and attention brought on by the pandemic will be helpful. Now that more news is being created on these conditions, doctors may be able to diagnose patients faster.
In addition, resources are now being allocated to the study of conditions that arise after a COVID-19 infection. Congress has granted $1.5 billion to the NIH for this research. Now is the perfect time for research into the connection between rare and underserved diseases and the novel coronavirus, as there are large groups of people who have had the virus, creating a large sample group.
Awareness may also rise due to the sheer number of people who are now experiencing lasting symptoms of COVID-19. A study conducted by the University of Washington found that 27% of young COVID-19 survivors, aged 18-39, experienced symptoms lasting three to nine months after testing negative. For middle-aged patients, this number rose only slightly. For those over the age of 65, the percentage shot up to 43%. Many of these people are experiencing symptoms like brain fog, fatigue, acute kidney problems, and lung function abnormalities, among others.
Despite all of these reasons for increased awareness and more research, some physicians still dismiss CFS and POTS. With no biomarkers, a number of doctors dismiss these conditions as psychological.
Diagnosed with POTS and CFS: A Patient Story
Dr. Elizabeth Dawson tested negative for COVID-19 four months after she was initially infected. Despite this milestone, she was still experiencing severe symptoms. Dr. Dawson is constantly nauseous, all while handling other effects like brain fog, severe fatigue, and severe headaches. She describes her condition,
It’s as if all the energy has been sucked from my soul and my bones.
She decided to investigate the cause of her symptoms, and soon recognized that she was displaying the common effects of POTS. Even with this accomplishment under her belt, she soon met another obstacle: there were no specialists in autonomic disorders anywhere nearby. Unfortunately, there are only 75 board-certified specialists in the United States. (This doesn’t mean other doctors can’t diagnose POTS. Visit this list from Dysautonomia International to find more doctors who’ve been recommended by patients.)
Dr. Dawson was able to schedule an appointment with a neurologist, who officially diagnosed her with CFS and POTS. Now, she is able to better understand and manage these conditions.
Unfortunately, not every story is like hers. Many patients do not have the access that she does, leaving them without resources and the necessary treatment. There must be more awareness of these conditions, especially as they become more prominent due to the pandemic.
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