COVID-19 support group brings attention to patients struggling relapses and months-long symptoms

BERKELEY, Calif. - With so much still being learned about the novel coronavirus, a group of survivors-- some 6,000 strong-- have found a common place where they can find support, share information, and feel less of the isolation brought on by the disease.

The Body Politic COVID-19 Support Group was first launched back in March, as a small group chat on Instagram. It came about after Fiona Lowenstein and Sabrina Bleich both fell ill with the coronavirus.

Lowenstein founded NewYork City based-Body Politic, a queer feminist wellness collective and media company. Bleich is its creative director.

Both women quickly learned that there was a great need for online resources for those struggling with the disease. It wasn’t long before the support group multiplied to thousands of members and was migrated to Slack, a larger chat platform to accommodate the growing membership.

In fact, the group’s reach has extended to coronavirus patients not just across the U.S., but around the globe, including the U.K., India, Singapore, New Zealand, South Africa, Peru, and Brazil.

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Those who have contracted COVID-19 will attest to the isolating nature of the illness. With a positive diagnosis of the disease, patients have been told to self-quarantine and keep closed off from others, even in the same household, to prevent spreading the illness. The heartbreaking stories have been widely circulated of gravely ill patients in hospitals who have been alone, many not able to say goodbye to their loved ones in person in their final days. 

"The feelings of isolation are extremely widespread,” Lowenstein told KTVU. "COVID-19 is physically isolating - I, myself, was confined to a small bedroom for about 2 weeks - but it can also be extremely socially isolating.”

So for the thousands who have turned to the Body Politic COVID-19 Support Group, they have found camaraderie and connections in the common struggles they’ve endured not just physically, but emotionally.

Lauren Nichols came across the group about a month into her fight with the coronavirus.

The 32-year-old Boston resident, who's now an admin with the group, first joined as a member in April. "[I] Was utterly alone and scared in my fight until I found this group,” Nichols told KTVU.

She said she got sick in early March, as the cases were first emerging in the U.S. Feeling ill, she went to her doctor and requested a COVID-19 test, but the doctor said a test was not needed, telling her that because she was 32, with no underlying health issues, she would be fine. "I felt guilty for even asking thereafter, and felt gaslit because he said my symptoms were just acid reflux," Nichols explained.

But within days her symptoms continued to escalate to the point it was obvious something was seriously wrong. “My breathing was heavily impacted and I could barely walk or function,” Nichols said. It wasn’t until March 20 she was finally tested and received a positive diagnosis.

“I was really one of the first people to get one of the tests in Massachusetts,” Nichols said, adding that she felt lucky to be alive. 

Nichols ended up with pneumonia as a secondary complication and remained in isolation for more than four weeks, as she struggled with prolonged symptoms including an elevated temperature and a cough. 

And now four months after her diagnosis, she’s continued to deal with flare-ups and lingering symptoms. 

"Although I began feeling more myself around mid-June, with many symptoms becoming much more mild. I still to-this-day battle relapses as a result of physical exertion and talking too much (experiencing 5 major relapses throughout the past 4 months),” Nichols said, noting symptoms she still struggled with include nausea, brain fog, short-term memory loss, burning in her lower esophagus, diarrhea, gynecological issues, insomnia, chronic fatigue, excessive and unwarranted bruising, and rashes. 

What Nichols would learn was that she was not alone in what’s being described as “long-haul” symptoms. Other patients began reporting a wide and varying range of complications lasting weeks, if not months-- life-altering symptoms and flare-ups that required continued medical attention.

"I had over 15 medical appointments (and some ER visits) as a result of my severe and constant symptoms,” Nichols said. "These got expensive but they were important since I had no idea why I was having such severe and painful issues for so long.”

Beyond offering members support, something else was becoming abundantly clear through the group: A growing number of patients were also experiencing residual effects post “recovery” and debilitating episodes of relapse.

"I think fever months after initial symptom onset is one of the lesser-known experiences of COVID-19,” noted, Lowenstein. "Another huge issue seems to be neurological effects. People are experiencing stroke-like symptoms, tingling and buzzing in their limbs, and having cognitive issues like memory lapse. Another big issue is dermatological symptoms. I experienced hives and rashes in my last month of noticeable symptoms, and many people in the group have shared this as well,” the group’s founder said. And the list goes on: chronic fatigue, blood clots, and some women reported experiencing worsening symptoms during their menstrual cycles. 

Doctors acknowledged that experts were still learning about the long-term complications related to COVID-19, but there has been ample evidence to show many patients do experience long-haul symptoms.

"Studies suggest that there are persistent symptoms in a fair number of patients,” according to David Witt, MD, National Infectious Disease Leader with Kaiser Permanente.  "The most common symptom is fatigue affecting about 40% of the people diagnosed with COVID-19. About one-third of patients also suffer from persistent respiratory issues including shortness of breath for a period of time after the infection occurs,” said Dr. Witt. In addition, the loss of taste or smell can be permanent, according to the doctor who explained that's not uncommon when dealing with other viral infections.

He also noted patients faced potential risk for cognitive problems, though it’s unclear if that’s directly related to the virus, as long-term ventilator use and prolonged hospitalizations in the intensive care unit have also shown to affect cognitive function.

The nascent aspect of the disease called for further research on what patients might expect as part of their recovery. "Given that we only have been able to follow this disease for four months, we need to further studies to really understand the long-term effects," said Dr. Witt. 

So for patients who were seeking answers, the Body Politic COVID-19 Support Group became an invaluable resource. As more people began sharing their experiences, the group offered many of its members validation amid an uncertain and frightening time. 

"I saw a message from someone who described family members questioning her lingering symptoms,” Lowenstein said. "The message got a lot of replies and affirmation from people who said they'd experienced the same thing and felt they couldn't turn to anyone outside of the group.”

There have been other notable unintended outcomes from the Body Politic COVID-19 Support Group. With many feeling like they cannot get the answers they need from their own health care community, the support they’ve received has helped inspire what Lowenstein described as a grassroots health and patient advocacy movement.

“They're advocating for themselves in amazing and tangible ways,” she said. "One member wrote a guide to navigating medical bias a few months ago. Another group of members are trying to raise funds to make a documentary about long-haul patients.”

The group's founder also described how members in the U.K. have sent a collective letter to the country’s National Health Service (NHS) and their local leaders with a call for improved care from the government and its health system.

And there's more. Out of the grassroots effort has emerged what may likely be the first COVID-19 patient-led research team, which described itself as “a self-organized group of COVID-19 long-haul patients working on patient-led research around the COVID experience and prolonged recoveries.”

Made up of several physicians, as well as researchers with a background in neuroscience, public policy, health activism, and other relevant fields, the team has been gathering data from one another as well as other coronavirus patients. 

"Our goal is to collect and distribute data on those with COVID-19 prolonged recoveries – a group that has so far been understudied – to both the general public and to medical professionals,” the team’s researchers said.

Berkeley resident, 27-year-old Lisa McCorkell, has been a core member of the research team. She just received her master’s degree from UC Berkeley’s Goldman School of Public Policy and has also been dealing with long-term symptoms from the coronavirus. She first got sick in mid-March, with symptoms including body aches, shortness of breath, tightness in chest, cough, and nausea. 

"Over the course of the first month, I continued to have varying levels of shortness of breath, tightness in chest, brain fog, fatigue, elevated heart rate, and dizziness” McCorkell recounted. "About a month in, I started feeling a stinging/painful feeling in my toes, and they became red and swollen. There had just been evidence of ‘covid toes' as a symptom coming out of Italy, so my doctor was able to get me a COVID test,” she explained.

Because it had been a month since the onset of her illness, she said, not surprisingly, her test showed up negative. But McCorkell’s doctors clinically diagnosed her with COVID-19 based on all of her symptoms. 

The following months she struggled with were more fatigue, brain fog, difficulty sleeping, as well as intermittent shortness of breath and elevated heart rate. 

"There was a time when I could not walk a block without having extreme shortness of breath and being fatigued the rest of that day and the next. I slowly built up my ability to walk over time,” she explained, noting that stress also seemed to exacerbate her condition. "I had a major setback two months in when I needed to make a deadline for my master's thesis - I pushed my body too hard, and the physical and mental stress of it caused me to relapse.” 

McCorkell said slowly, she was able to make strides in her recovery and even managed a 1-mile run on July 2, a feat she marked as a turning point.

"It was difficult and scary, but the shortness of breath ended after 30 minutes after the run and I was not fatigued the rest of the day. For now, I'm marking that as my recovery day - 111 days into the illness,” McCorkell said.

The findings she and the research team came up with was released in a report in May. 640 patients were included in the analysis. The report noted that patients have little guidance on what to expect in the months after diagnosis and that a growing number of cases showed patients experienced mild to moderate symptoms for a prolonged period of time. 

Among the key findings:

● Symptoms are not limited to cough, fever, and shortness of breath. Other widely reported symptoms include neurological, gastrointestinal, cardiovascular, and other systems and include fatigue chills/sweats, body aches, headache, brain fog and concentration issues, gastrointestinal issues, trouble sleeping, and dizziness. 

● Recovery is volatile, includes relapses, and can take six or more weeks. At the time respondents took the survey, 90.6% reported not being recovered and were, on average, on day 40 of experiencing symptoms. 

● Early testing is crucial, and questions remain around test accuracy. Despite all respondents showing COVID-19 symptoms, 47.8% were either denied testing or not tested for another reason. 

● Stigma and lack of understanding compromise access to healthcare and quality of support. 50% of respondents felt only somewhat supported by medical staff, and many respondents reported receiving conflicting advice from different healthcare professionals on testing eligibility, symptom severity, and when to cease self-isolation. 

The full report can be found here. The team is currently developing its next report from a second survey.

For McCorkell, Nichols and other members of the support group, it was among those who were previously strangers that they received valuable resources, encouragement, and a collective feeling of being a part of something widely unknown to the outside world. 

“So many of us dealt with friends and family members who downplayed our symptoms or just straight up didn't believe us,” McCorkell said. "We are frustrated that we can't do things we used to be able to do. We are scared about what this means for us now and in the future. Those shared emotions were so important to me in feeling like I wasn't alone in this,” she said. The ‘victories' people post, some small - like they were able to walk 2 blocks today - and some big - like they consider themselves recovered - were encouraging,” she said.  

Members have not just benefitted from being on the receiving end but say they've felt empowered knowing they were also providing a service to others who were going through a scary and painful time. 

"I desperately wanted to help others who were in a similar position as me: struggling with a novel, terrifying virus, without any true support from medical practitioners, the government, friends, or the world in general,” Nichols said, noting that she and other members in many ways have served as pioneers in the face of this disease. 

"On a really basic level, it never ceases to amaze me how active the members of our group are in supporting one another,” said Lowenstein. "Whenever someone posts about feeling lost, sad, depressed, or anxious, dozens of other members almost always immediately jump in and offer support, and you can see the healing happen in real time, which is truly awesome.”

The founding member credited the group for helping her heal, both emotionally and physically. "I cannot imagine who or where I would be without the support group,” she said. "In my darkest moments it allowed me to step outside of my own personal experience and suffering to see that I was part of a larger community, and that I had the capacity to help others.”

 

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