covid longhauler advocacy project

Where should you go to get treated for Covid-19? Or to get advice? Well, it all depends. 

Some patients, of course, will go to their regular doctor, or to a specialist, or to the emergency room. But increasingly, patients who have long term courses of the illness — they call themselves “long-haulers” — are finding that not every doctor is a good choice to treat their illness. 

One Covid long-haul patient in Brooklyn visited the emergency room four times in three months after she initially became ill on March 13. She said she spent a lot of time with “docs who were telling me I was crazy.”

“I would go to the ER and they would prescribe me Valium,” she said in a phone interview.

This patient, who asked to be identified by her first name, Emily, is one of thousands of patients who have taken to online forums like Facebook and Slack to discuss their symptoms, the course of their illness and the fact that it’s hard for them to find doctors to treat them. 

On these and other online support groups, patients swap stories and advice about symptoms and treatments. Of course, doctors say that getting medical advice online is not a good practice. The online forums say specifically that they are not offering medical advice, but rather making it possible for patients to trade information that might help others.

Many varied symptoms, lasting for months

Despite all the dialogue about Covid-19 it’s not so widely known that people can experience many varied symptoms for months — perhaps because in the early going, people were told that they need to quarantine for 14 days, suggesting that the regular course of the illness is only a few weeks. Patients on these online discussion groups complain bitterly that doctors will tell them that their problems are caused by anxiety, or are “all in your head.”

Covid causes damage to many of the body’s systems, not just the respiratory system, as was thought in the very early stages of the pandemic. The Washington Post reported recently: “Clinicians around the world are seeing evidence that suggests the virus also may be causing heart inflammation, acute kidney disease, neurological malfunction, blood clots, intestinal damage and liver problems. That development has complicated the treatment of the most severe cases of Covid-19, the illness caused by the virus, and makes the course of recovery less certain, they said.” Other commonly reported symptoms of long-haulers and other patients include intense fatigue, brain fog, hair loss, conjunctivitis, muscle aches and pains, tingling in various parts of the body, high blood pressure and nearly 100 other symptoms.

In some ways it resembles the discussion over Lyme disease. Long-term Lyme disease sufferers, too, are often very vocal about which doctors they trust and which they don’t. They will also say that they are not infrequently accused of having psychological underpinnings for their physical symptoms — and are sent to therapy. So Lyme sufferers share the names of treatments that they think are better than the mainstream ones, or doctors who are more educated about long-term Lyme disease.

On one Facebook group, Jenifer Green, of Pottstown, Pa., wrote about going to a cardiology clinic where she saw a doctor who brought in a list of her symptoms. The doctor said that her symptoms were a sign of depression, and offered to prescribe her medication. Green, certain that her symptoms were from Covid, asked to see another cardiologist in the office. The doctor agreed, but not before telling her that she has to “understand how life and health works,” and that “not all symptoms are Covid,” according to a post from Green in the Facebook group. Green gave ClearHealthCosts permission to use her story. 

Soon, a new doctor saw her. After Green told him her symptoms and the doctor looked at her charts, he said that he had family in Europe who had similar symptoms from Covid. He said, “This is real. We don’t know a lot, but we need to work together. Any other symptoms?” according to Green’s post.

‘Find a doctor you trust and get referrals’

Cindy Somma, from Garden City, Long Island, got sick the third week in March.  Like many others, she was unable to get tested at that time because the tests were reserved only for frontline healthcare workers and hospitalized patients. Her symptoms have included fatigue, sore throat, cough, low oxygen levels, headaches, brain fog and other classic Covid-19 symptoms. She was one of the few people on the Facebook group who is pleased with her doctors. She said her neurologist and pulmonologist are excellent. Her doctors have not been skeptical of her symptoms, she said, adding: “I have been so blessed. I have no energy to see someone who doesn’t take it seriously.”

When asked if she has suggestions for people looking to find a good doctor, she said, “Find one doctor you trust and get referrals. Also, be your own best advocate.”

As a professional expert in medical billing, she said, she knows her way around the healthcare system better than others. She was still experiencing symptoms in August, and she said, “I wish there was more coverage and that people would talk about the symptoms after — they are far worse than what I had when I had Covid-19.”

For Emily, the search for treatment continues to be frustrating. The last time she went to the emergency room, she said, “they gave me tons of medications to stop me from vomiting and told me it was all in my head.”

She said she had tried to join multiple academic studies.  But like many other Covid patients, because she never tested positive for Covid, she’s not able to enter those programs. When she got sick on March 13, tests in the New York area were practically impossible to get. She did get tested subsequently for antibodies, but those tests were negative. She did note that many of the antibody tests have been found to be not particularly reliable. 

Emily is a member of a support group founded by the Body Politic online publication on the Slack platform. 

What does she think is a possible solution? She believes that there should be more post-Covid treatment centers and doctors who are familiar with the long-term consequences of the illness. Also, she said, places like the existing post-Covid-19 treatment centers “need to take people even if they don’t have a positive test.” She added that her health insurance paid $191,000 so far this year for her care. 

She said, “It’s insane that there are so many people experiencing the same symptoms. We are all in this Slack group, trying to help each other, because doctors can’t help.”


The Body Politic Covid slack support groupBody Politic started the COVID-19 support group after Founder and EIC Fiona Lowenstein, and Creative Director Sabrina Bleich became sick with coronavirus in early March. After falling ill, we quickly realized that there was not enough online content or resources dedicated to people struggling with coronavirus. As we scrolled through Instagram feeds filled with tips on navigating boredom during quarantine, or how not to catch the virus, we felt increasingly isolated, misunderstood, and ignored. With news of infection rates rising, we knew a community of people like ourselves existed, and was growing – we just needed a way to reach each other.”

The Covid Long-Haulers discussion group on Facebook is very active.

The Covid Long-Hauler advocacy project on Facebook, founded by Karyn Bishof, a firefighter paramedic in Florida. 

Survivor Corps, founded by Diana Berrent, one of the first people in her area to test positive for Covid, works to connect survivors with medical research.  

On the Body Politic Slack group, patients have begun a crowdsourced list of doctors that they recommend. Many are in the New York area, and there are others elsewhere in the United States and overseas. At the top of the document, it says: “This list is maintained by the Body Politic Covid-19 support group — recommendations are from fellow patients in the group. Body Politic does not endorse any providers. Please keep in mind that each patient can have different experiences. This is a living document so we encourage group members to submit new recommendations or updates for providers who are knowledgeable and helpful in managing symptoms after Covid-19. If you see an issue listed on the spreadsheet, please contact an admin in slack.”  Here’s the list. 

Among the resources shared by patients on Facebook groups and elsewhere are a series of post-Covid-19 care programs set up at various hospitals. One that is frequently discussed is the Mount Sinai Center for post Covid-19 in Manhattan. Here’s the website.

SUNY Downstate Health Sciences University announced  that its University Hospital of Brooklyn set up an outpatient clinic for care of discharged patients following inpatient and outpatient treatment at SUNY Downstate for Covid. Mafuzur Rahman, M.D., Vice-Chair of Medicine at SUNY Downstate is the leader of the post-discharge Covid-19 clinic. Here’s the press release.

Hackensack Meridian Health in New Jersey opened a dedicated post Covid-19 unit. Here’s the press release.

Richmond University Medical Center, in Staten Island, an affiliate of Mount Sinai, opened a dedicated post Covid-19 unit. Here’s the page.

Northwestern University in Evanston, Ill., has a post-Covid clinic. Here’s a description.

New York City Health + Hospitals, the city’s public health organization, plans to build three Covid centers of excellence. They are expected to open soon. Here’s a story about that, and a press release from earlier this summer. 

Spaulding Rehab in Boston, a part of Partners Health Care, Mass General and Harvard Medical School, has launched a post-Covid rehab program. 

Some of the patients and some medical professionals described downstream consequences of covid as dysautonomia, the failure or overactivity of the autonomic nervous system.. New York University has a dysautonomia study center in Manhattan; the number is (212) 263-7225.


Jeanne Pinder

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...