10 Tips on How to Advocate for a Long COVID Diagnosis (and Treatment)

Despite how common it is, long COVID continues to baffle many doctors. Some patients see 10 to 20 practitioners before they finally get a diagnosis and meaningful treatment, says Alba Azola, MD, the co-director of the Johns Hopkins Post-Acute COVID-19 Team and an assistant professor of physical medicine and rehabilitation.

Davido Putrino, PhD, director of rehabilitation innovation for Mount Sinai and a long COVID researcher, estimates his center has cared for more than 3,000 long COVID patients and says he “can count on one hand the number of people who have not been incredibly gaslit by medical professionals." Many "go from doctor to doctor because they were just told that it was anxiety or they were depressed, or that long COVID wasn't real," he adds.

This delay to diagnosis may happen because health care practitioners “have not heard of” long COVID, or they “don't feel comfortable diagnosing it,” explains Jennifer Curtin, MD, the co-founder and chief medical officer at RTHM, a medical organization that connects patients with a digital care team specializing in long COVID. Some might not have long COVID on their checklist of conditions to consider. Others may hesitate to diagnose long COVID because generalized symptoms—like brain fog and fatigue—can have so many other potential causes, such as vitamin deficiencies and sleep disorders, she explains. Without a diagnosis, patients often (unsurprisingly) “become depressed, anxious, angry, and hopeless,” says David Kaufman, MD, the founder of the Center for Complex Diseases, a clinic that specializes in long COVID and other infection-associated chronic conditions.

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Even when doctors do suspect long COVID, they may not know what treatments can help with symptoms. “None of the more significant and treatable aspects are being dealt with, and patients don't get better for a longer period of time,” says Dr. Kaufman, adding that about three-quarters of his new patients arrive having made no significant progress toward diagnosis or treatment.

Yet fighting for a diagnosis is still worth the effort. “I have had patients cry because they feel vindicated and finally see there are answers other than psychiatry and physical therapy,” Dr. Kaufman says. A diagnosis may give you the confidence to join support groups and talk about your condition with friends, family, and coworkers, says Dr. Curtin, and it might qualify you to participate in clinical trials. Plus, official diagnoses give researchers a better grasp of how common long COVID really is—boosting awareness and making the case for more research. “We desperately need more clinical trials and testing of various interventions,” Dr. Kaufman says.

Although there aren’t any FDA-approved long COVID treatments, many off-label options “can help decrease or manage symptoms and improve function and quality of life,” says Dr. Azola. Plus, if you see a health care provider who is experienced in long COVID, they’ll look for common conditions that are thought to be triggered by SARS-CoV-2, says Dr. Curtin (like blood clots and some autoimmune diseases²), which do have well-established treatments.

Ready to advocate for yourself? Here’s how.

Tip #1: Know long COVID symptoms

Long COVID can involve more than 200³ symptoms that may develop even after mild or asymptomatic infections, says Dr. Curtin. As a general rule, she suggests seeing your doctor if you have unexplained symptoms that started within three months of a COVID infection and last for at least four weeks.

Common long COVID symptoms include:

• Orthostatic intolerance (feeling lightheaded when standing)
• Shortness of breath
• Heart palpitations
• Chest pain
• Persistent cold-like symptoms, such as swollen lymph nodes or a sore throat
• Brain fog or impaired memory
• Body aches, numbness, and tingling
• Extreme fatigue, especially if it gets worse after you exert yourself physically or mentally (called post-exertional malaise)
• Severe headaches, or migraines that were controlled prior to COVID and now aren’t responding to treatment
• Sleep issues that you didn’t have prior to your COVID infection
• New gastrointestinal issues, such as diarrhea

Tip #2: Do at-home testing

Dr. Kaufman estimates that at least 80 percent of people with long COVID have orthostatic intolerance, which is when reduced blood flow to the head causes lightheadedness, fainting, and even brain fog when you’re upright. It’s usually caused by a group of disorders known as postural orthostatic tachycardia syndrome (POTS).

You may actually have POTS and not even know it. "Very often, the patient will say, ‘I'm fine when I stand up.’ And then we look at the numbers, and they're not fine," he says.

That’s why he suggests all patients do the “NASA lean test” before visiting their doctor. Buy a blood pressure cuff, and ask a loved one to take your blood pressure twice: once when you’re lying down, and again after you’ve been standing up for 10 minutes.

“If you take those numbers and put them in front of the doctor and they're abnormal…it's a little harder for that doctor to ignore this and say, oh, you're just depressed because you got sick," he says.

Tip #3: Jot down a summary

It's impossible to share your entire medical history in a 15-minute appointment. To streamline the process, write down a simple but descriptive summary of your long COVID experience for your doctor to scan, including the dates of your infection, your symptoms and how they’ve changed over time, and any treatments you’ve tried. For example: "If I'm upright for more than 15 minutes, I want to vomit and I have to lie down," suggests Dr. Kaufman. If you experience more visible symptoms—such as rashes or hives—take a picture. “It makes it a little harder to ignore," Dr. Kaufman says.

Tip #4: Find the right clinic

Before you book an appointment, call the clinic you're considering and ask if they diagnose long COVID, or if they usually refer patients elsewhere. If they refer out, ask them where, then check if it’s covered by your insurance. “It could save you some time,” Dr. Curtin says.

Long COVID clinics are usually the most knowledgeable; you can find maps and guides to these centers on Solve ME/CFS.

You’ll note that many clinics also treat myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—an infection-associated chronic illness that causes symptoms like exhaustion and difficulty concentrating. That makes sense, because roughly ⁴half⁵ of people with long COVID qualify for an ME/CFS diagnosis. It’s a win-win: The specialists at these clinics usually look for (and know how to treat) ME/CFS and other conditions that research suggests may crop up after COVID, such as POTS, mast cell activation disorder (MCAS)⁶, connective tissue disorders², and autoimmune disease⁸.

If you live in a rural area, many COVID clinics offer virtual appointments to people in a certain geographic area, says Benjamin Abramoff, MD, an assistant professor of clinical physical medicine and rehabilitation and the director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine.

Just know that wait times at any of these clinics can be long—often between six to 12 months. “It’s very hard to get an appointment because over 20 million Americans have experienced long COVID symptoms, and there's just not enough physicians familiar with evaluation and treatment,” says Dr. Azola.

In the meantime, you’ll likely need to find a general practitioner and/or a specialist who takes you seriously and wants to take steps to address your specific symptoms. For example, you might see a cardiologist if you’re having heart palpitations; a pulmonologist for shortness of breath; a rheumatologist for numbness and musculoskeletal pain; or a neurologist for brain fog and memory problems.

Tip #5: Be prepared to educate your doctor

Many providers may be invested in helping patients but under-informed. “There's definitely not enough education for medical providers about long COVID,” says Dr. Azola. But: “By and large, doctors are pretty receptive.”

Share information from trusted sources, pointing out how your symptoms are similar, and note the various off-label treatments. Start with the following:

• The CDC’s long COVID website

• Project ECHO

• The American Academy of Physical Medicine and Rehabilitation, which offers a helpful resource center with links to guidance statements for various long COVID symptoms

Tip #6: Ask lots of questions

Your doctor’s job is to not only diagnose you, but to partner with you to help you manage your symptoms. Asking a few questions may help you to advocate for treatment:

• Are there any ways I can make X symptom more manageable?
• Could any lifestyle changes or accommodations at work help me to better manage fatigue?
• Could any of my medications or supplements be contributing to my symptoms?
• I'm concerned I have X condition. Could you refer me to X specialist (for example, a cardiologist for heart issues)?

Tip #7: Trust that you know your body best

There is no official test to diagnose long COVID—and the screenings doctors use are largely not very insightful. Most blood tests, for example, come back normal, says Dr. Kaufman, resulting in shoulder-shrugging or even cynicism from health care providers. “It's really frustrating for patients,” says Dr. Azola. “It’s medical trauma when their very real symptoms are dismissed based on unrevealing testing.”

Doctors also often haven’t learned much about common long COVID comorbidities like POTS in medical training, Dr. Curtin explains. So they may not realize POTS symptoms can resemble anxiety and panic attacks (like a racing heartbeat and difficulty sleeping) and thus refer patients to a mental health care provider instead of screening for POTS.

So if you don’t feel right, trust your instincts. “It’s not that nothing is wrong. It's just the things that you're experiencing are not caused by something that we know how to test,” says Dr. Azola.

Tip #8: Get a second opinion if necessary

If you feel like you aren’t getting anywhere with your current doctor, or if you don't feel your doctor is receptive or curious, it’s probably time to get another opinion, says Dr. Azola.

"I know that's not as easy as it sounds, but it’s better than spending another four months being shifted around to physical therapy and psychiatry and psychologists," says Dr. Kaufman.

Tip #9: Leverage the COVID community

It can be hard to remain optimistic in the face of skepticism. Online long COVID communities can offer real support and advice. Dr. Abramoff warns that these groups sometimes spread misinformation or misinterpret research findings—but adds that they’re overall more helpful than harmful.

“Patients often get new information…that they provide to their clinician, and then we learn things,” he says. “Sometimes it's a very supportive environment, just to kind of help patients get through symptoms.”

Check out Solve ME/CFS, the Massachusetts ME/CFS Association, the Long Hauler Advocacy Project, and Long COVID Physio. Or Google “your state + COVID” for local groups.

Tip #10: Know that there are treatments—and hope

“There has been important research to deeply understand the mechanisms of long COVID,” says Beth Pollack, a research scientist at the Massachusetts Institute of Technology (MIT) who researches the shared features of complex chronic illnesses, including long COVID and ME/CFS. The next phase of long COVID research will involve finding treatments that address specific symptoms and causes. “It's not a one-size-fits-all solution,” she says.

Current treatments are “individualized” based on your symptoms, says Dr. Azola. If you can’t stand for long periods of time due to POTS, for example, your doc may suggest drinking plenty of liquids, increasing your sodium intake, and wearing compression garments on your legs and abdomen. For fatigue with post-exertional malaise, your doctor will rule out treatable causes (like vitamin deficiencies or sleep disorders) and suggest techniques for pacing, or “learning to avoid exerting beyond their energy envelope and entering a crash cycle that overwhelmingly results in functional decline,” she explains.

Long COVID treatments under investigation (and prescribed off-label by some specialists) involve everything from the antiviral drug Paxlovid, to the opioid addiction drug naltrexone, to the blood thinner rivaroxaban.

There’s a good chance you’ll need to "cycle through a few different treatments or doses in a methodical way" to find what works for you, Dr. Curtin says.

Pollack remains optimistic that we can improve care for long COVID patients—if we put our collective energy into it. “I don't think people are sitting around saying how could we possibly treat this? Many potential therapeutics have been identified. It's a matter of researching them.”

—reviewed by Jennifer Gilbert, MD, MPH