What happens when you finally test negative for COVID-19 after a long battle to recovery, only to have lingering effects? This is the struggle that many coronavirus patients are facing today. These patients are now known as the COVID-19 long haulers and their symptoms appear to be long, inconsistent, and wide.
Who Classifies As A Long Hauler?
Christina Stanton is a licensed NYC tour guide, and part of a group of recovering COVID-19 patients currently referred to as the COVID-19 long haulers. This group of individuals hasn’t fully recovered from the coronavirus, weeks or months after their symptoms first appeared. Most of these patients have post-viral symptoms like fatigue, breathing problems, and loss of senses that incapacitate them for weeks on end.
The biggest challenge: My energy level and lung capacity are (as of October 2020 – seven months later) less than half of what they used to be. I’m stationary and strategize about things I need to do with as little energy as possible when I get up. I still have no sense of taste or smell. About three-quarters of my hair has fallen out, necessitating a wig. I wake up several times per night and sleep restlessly. I feel and look like I’ve aged 20 years and am ashamed of my appearance. Recently, I had bloodwork done, and it revealed several levels were out of range, such as ferritin, autoimmune, LDH, and BUN. My lymph nodes are bulging at the base of my neck, and I’m still seeing doctors to sort through the implication of these issues. I have tingling and twitching constantly in strange places all over my body, such as a finger or my calf and right thigh.
You can find a full account of Christina’s experience in Faith in the Face of COVID-19: A Survivor’s Tale.
A letter from JAMA identified that Italian patients ranging from 19 to 84 years of age experienced post-COVID-19 symptoms within an average of two months from when their symptoms first appeared. All these patients were hospitalized, with their stay averaging two weeks.
Biased Health Support
Another Paris hospital reports that, on average, they receive 30 long-haul patients every week. On average, these patients are 40 years old, with the ratio of men to women being 1:4. It’s a growing concern that three-quarters of the long haulers are female.
As it stands, the diversity of these post-COVID-19 effects and their unpredictable nature has baffled medical practitioners and onlookers in the same measure. Sadly, female long haulers also report greater bias and gaslighting from medical practitioners and hospitals. But health care workers are also at greater risk since they are significantly exposed to the virus; especially since women make up 3/4 of full-time, year-round health care workers today.
But what is being done about the long haulers, especially since there’s little evidence to guide governments and healthcare facilities?
Long-Haul Effects And Challenges
As a physician, I was diagnosed with COVID-19 at the end of March. It’s very frustrating because, as a three-time marathoner, I can barely run one to two miles without stopping. Still unable to fully catch my breath when I run, my pulmonologist just prescribed a steroid inhaler and a rescue inhaler. I know so many patients that have neurological issues, hearing loss, intermittent loss of vision, and still loss of smell.”
An estimated ten percent of COVID-19 survivors experience prolonged symptoms. According to a survey done by the Survivor Corps support group, one of the common long-term effects of the coronavirus pandemic has been body exhaustion. Additional common symptoms include joint pain, cough, shortness of breath, chills and sweats, headaches, body aches, gastrointestinal issues, loss of smell and taste, and chest pain.
Mental Health Effects Of COVID-19
Another typical effect that is evident in many COVID-19 long haulers is a loss of focus and memory loss. It’s becoming clear that COVID-19 can damage the brain, leaving many patients with chronic brain fog. Scientists also believe that the virus causes a long-term change in the immune system. What’s clear is that the virus seems to affect every part of the patient’s body.
These effects are reducing the quality of life for long haulers. Most of the patients are finding active activities like walking and running difficult to do. Working has also become a challenge for some of these patients. Many of them need to sleep on and off during the day to rest.
It’s especially devastating when patients recover, only to relapse after a few days or weeks with new or old symptoms. Morbidity and Mortality Weekly Report published test results for research on some COVID-19 patients with mild symptoms. In the report, a third of the patients have yet to return to their normal healthy state two to three weeks after testing positive. The older the patients, the greater the risk of lingering effects.
What The Doctors Say About The Long-Haul Effects
Different scientists and researchers seem to have differing ideas as to why the long-haul effects linger after recovery.
Dr. Don L. Goldenberg is the author of How the COVID-19 Pandemic Is Affecting You and Your Healthcare. He is also the Emeritus Professor of Medicine, Tufts University School of Medicine, and a Medical expert on the impact of coronavirus on healthcare. Dr. Goldenberg believes that persistent health problems following COVID-19 infection fall into three categories:
- Patients have debilitating exhaustion and weakness, and it takes weeks or months even to walk and begin to regain strength. This is primarily in patients who’ve been hospitalized with severe pulmonary complications, typically in the ICU and often on a ventilator, and is similar to any prolonged-post ICU condition.
- COVID-19 infection may damage a variety of non-pulmonary organs, especially involving the brain or heart. These are likely inflammatory/immune-mediated rather than a direct result of the virus in the organ. These have included strokes or myocarditis in younger individuals with no previous cardiovascular disease. Most of these severe organ manifestations seem to be self-limited, such as the loss of taste or smell, which typically disappears after two to four weeks post-infection. However, symptoms can last for months, and the outcome in these patients is still unclear.
- Some patients with COVID-19 infection suffer from post-viral fatigue syndrome, similar to what in the UK was termed benign myalgic encephalomyelitis (BME) and in the US as chronic fatigue syndrome (CFS). There is no evidence of organ damage/dysfunction in these patients, and, in the case of BME and CFS, there has been more confusion, controversy and gender bias, and more attention in the media.
Watch this video to get an in-depth analysis of the long hauler treatment and care provided today.
The Influence Of Biochemistry On The Long Haul Effects
Sheldon Zablow, MD, believes that the long haul effects come down to the biochemistry of long-term viral infections.
When people get any major infection, the body uses up the B vitamins of folate and B12 to regulate the inflammatory process. Low B vitamins can occur before admission and occur in association with diabetes, obesity, ethnicity, gender, metformin treatment for diabetes, and PPIs used to treat GERD. Low B vitamins cause high homocysteine, which causes increased blood viscosity, which causes all the micro-clots responsible for lung damage, COVID-19- toes, strokes in the young, and pulmonary emboli. It’s this high homocysteine and low B vitamins levels that prolong symptoms and recovery. As one of the references state, homocysteine levels correlate to the severity of the illness and recovery.
He explains this dynamic in his book, Your Vitamins Are Obsolete.
Bias And Possible Medical Gaslighting Towards COVID-19 Longhaulers
Abigail Hardin is a licensed clinical psychologist and Assistant Professor of Psychiatry and Behavioral Sciences in Chicago, IL. She’s been treating patients with COVID-19 since the beginning of the pandemic. She says this in response to bias and gaslighting claims:
It was already well-known that there is bias in medicine, especially against women, people of color, and those presenting with chronic disease and pain symptoms. Now once again, with COVID-19, the healthcare system is failing those who’re in the greatest need and gaslighting them by not believing them about symptoms.
In Hardin’s book about COVID-19 recovery and rehabilitation, featuring stories and quotes from real survivors, many long haulers expose the fact that Hardin was the first healthcare professional to believe their story. Other medical practitioners dismissed them by saying their symptoms were all in their heads.
From the Body Politic survey, only a quarter of the long haulers previously tested positive for the virus. The rest merely had symptoms but no laboratory confirmation. This might be the reason why many of these healthcare professionals show skepticism when long haulers visited the hospital for treatment.
Real Symptoms, For Real People
But are their actions justified when most of the bias is directed towards women? Of course not. Experiencing dismissal and lack of continuous treatment only intensifies the lingering coronavirus symptoms and illnesses, not to mention added suffering. These symptoms aren’t phantoms in the long haulers’ heads, they’re real.
Take the experience of Tina Forte, American Athlete, Spartan Runner and current Congressional candidate. She couldn’t get her doctor’s prescription for the hydroxyl and Zpack filled (the treatment medication for COVID-19) because of New York State Governor Andrew Cuomo’s executive order. As a result, she ended up in the hospital within three days because of severe pneumonia in her lungs with blood clotting.
“I have permanent damage…I have a copy of my prescriptions dated in March of 2020 with the executive order highlighted,” said Tina of her experience. Although this is evidence of lingering effects of an era where female troubles are considered hysteria, change needs to occur.
The Birth Of Support Groups
With so much stacked against the long haulers, like a bias towards treatment, lack of proper research regarding their symptoms, and lack of adequate treatment options, long haulers sought to create support groups to help them cope with their discomfort.
These support groups acted to seek restitution and solace while collecting data to help better understand the lingering symptoms. In these support groups, the long haulers found alliance among people that shared the same suffering. Some of the support groups and what they accomplished include:
- Longhaul COVID-19 fighter support group with more than 8,000 members on Facebook that convene to share their experiences and encourage one another
- Body Politic COVID-19 Support Group has conducted research online to determine the magnitude of the long haul effects. It started as a group chat, and now it has 14,000 members.
- Survivor Corps is also carrying out online surveys to determine the significance of the long-haul effects.
- COVID-19 Watch is another group that texts coronavirus patients recovering at home twice every day until they get better.
- LongCovidSOS started a campaign aimed at pushing the British government to recognize, support, and research long haulers.
With the lack of government and medical support, what birthed the spread of the plight the long haulers were facing? Journalist involvement. “It’s absolutely true that journalists and long haulers themselves have done most of the labor in terms of bringing attention to long-haul symptoms,” says Abigail S. Hardin, Ph.D.
Because of the support groups initiated by the long haulers, many journalists started to write stories about them. As a result, doctors began to take the patients seriously. Finally leading researchers to begin developing rehabilitation and treatment programs for the long haulers.
Research, Treatment, And Rehabilitation Programs
The case of the long haulers is different: most of these patients initially didn’t have severe evidence of COVID-19 effects. They indeed visited the hospital for treatment but didn’t require any hospitalization. Moreover, the long haulers feature previously young and seemingly healthy patients.
Besides, studies are still researching a definite reason why the prolonged effects of the virus are present. Dr. Michele C. Reed further notes that “We’re still not fully revealing to the public these serious complications from COVID-19. The focus is on testing but also need to focus on treating these complications.”
So, what is being done about the COVID-19 long haulers? A one-year online survey is currently ongoing every three months to gather more information about the autonomic symptoms. The survey is being shared among social media groups. Another study on COVID-19 patients with persistent ME/CFS-type symptoms will be done to hopefully shed light on why the effects occur in the first place.
Care On The Rise
Currently, post COVID-19 outpatient and rehabilitation care is happening in different countries. The WHO is collecting data and sharing it with these rehabilitation centers, along with advice on how to help the long haulers. Nevertheless, patients still look to patient-centered, digital, and activist forums for validation and support.
These platforms lack certainty. However, they’re a form of reference that allows the long haulers to emerge from speculation and panic caused by the pandemic. Hardin advises that healthcare professionals should brush up on the latest research about COVID-19 long-haul symptoms during this second wave of the pandemic.
This includes the very real and very common physical, cognitive, and emotional ramifications of the disease and critical illness/hospitalization. Recovery from COVID-19 will require a multidisciplinary team of healthcare providers, including mental health providers. And to the long haulers, advocate for yourself vehemently.
Elton was first a general writer. But after battling a weight management problem, he became passionate about living a healthy lifestyle. Now he works out 5 times a week, lives off keto, and writes about health.
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