What Experts Want You To Know About Long COVID
Producing our recent podcast episode “Who Am I With Long COVID” has us wondering what else we don’t know about Long COVID.
My Body Odyssey reached out to experts to find out what medical advocates, therapists, and providers want people to know about Long COVID—including patients, caregivers, and people whose lives aren’t touched by Long COVID.
We asked these experts three questions about Long COVID. Responses have been edited for length and clarity.
Q: What Would you tell someone newly diagnosed?
“You are not alone. There are many resources available to learn about Long COVID and to establish a network of support. While progress has been slow, a massive amount of funding has been invested in studying those who don’t fully recover from COVID infections, and these subjects will be followed carefully. Major efforts to train medical providers are also underway. Buckle your seatbelt. Educate yourself. Teach others around you. Be as healthy as possible. Don’t give up hope.”
• Lucinda Bateman, Bateman Horne Center
“Many patients who receive a new diagnosis of Long COVID often feel devastated. I remind them that though there is no cure, their symptoms can be managed to improve their quality of life and that the majority of patients improve within the first year of their diagnosis… A new diagnosis of Long COVID also requires regular follow-up visits with primary care and/or a team of specialists as the knowledge and management around this condition is evolving.”
• Dr. Sritha Rajupet, Director of the Stony Brook Medicine Post-COVID Clinic
“The recommendations I make to patients now are so different from the recommendations I was making six months ago…”
Dr. David Putrino
“The only thing I would say, which I hope is encouraging is, to all the people with Long COVID, and other infection associated chronic illnesses: We are working as fast as we can. We are learning new things every day… The recommendations I make to patients now are so different from the recommendations I was making six months ago, in terms of helpful supplements, in terms of medications, in terms of all of the management approaches. So I know that it feels incredibly slow in terms of the progress that we’re making, but we are learning quickly… So bear with us, and I promise that we’ve got more information coming soon.”
• Dr. David Putrino, Director of Rehabilitation Innovation for the Mount Sinai Health System
“As of June 2023, there is no specific treatment for Long COVID. The lay press is full of reports that suggest the effectiveness of one treatment or another, but none has been proven to be effective in properly conducted studies. Treatment of specific symptoms— such as anxiety, depression, insomnia, fatigue and ‘brain fog’—are effective, however, so a person’s quality of life and sense of well-being can improve over time upon treatment by a knowledgeable provider.”
• Jeffrey Parsonnet, MD, head of Dartmouth Health’s Post-Acute COVID Syndrome Clinic
“I know that you must have mixed feelings. It might feel strange to feel vindicated or feel a sense of relief to have received a diagnosis. But this is a natural feeling. Why? Because you may have gone through the grueling task of proving to others that you are not just making this up in your head or that you are not a ‘doctor hopper.’ You may have felt like giving up or that no one was ever going to listen. So the fact that you have been diagnosed means that you are a fighter, an overcomer and a thriver! However, along with that comes feelings of grief and loss. You have been through a lot. It’s hard to sit with these emotions. However, give yourself permission to acknowledge this experience.”
• Dr. N. Karen Thames, PsyD, Founder and Executive Director of The EPIC Foundation
“Most major medical organizations have accepted that behavioral therapy is NOT a treatment for fatiguing illnesses, although it can help with adjusting to being chronically ill or with coexisting mental health issues. Instead, you probably do have to budget your energy and take your limitations into account. Exercise is not a treatment and can be potentially harmful. At this point, current research is showing the best path to potential remission and to minimizing symptoms is by not pushing your envelope. Resting is healing. Learn to pace yourself, there are many guides. Improving your diet, being aware of how your environment impacts you and reducing factors that make you worse, and generally doing things that correlate with better health for you is good but this is not a no pain no gain situation. You want to focus on recovery.”
• ME/CFS San Diego
Q: How does Long COVID change how people see themselves?
“Patients are overwhelmed and frustrated and are struggling with their self-confidence. Changes in their physical and mental health have led to either a loss of or decreased capacity to work and care for themselves. Close attention to their mental and physical needs such as counseling, help at home, or accommodations at work as appropriate are critical to their healing and recovery.”
• Dr. Sritha Rajupet, Director of the Stony Brook Medicine Post-COVID Clinic
“As with any time someone is struck by unexpected severe illness, the debilitation may lead to feelings of weakness, guilt or powerlessness. Those affected are likely to go through a normal but difficult grief process. This typically involves shock, denial, anger, bargaining, depression and finally acceptance and hope. This process can be derailed when one is sick with a poorly understood and invisible illness like Long COVID. Too often, those they have turned to for help, even medical providers, lack the medical knowledge and experience to provide informed care, support and information about prognosis. This may result in the sick person getting stuck in the early stages of grief (especially depression or hopelessness), and even doubting their own sanity.”
• Lucinda Bateman, Bateman Horne Center
“Most Long COVID sufferers are people who have worked hard all their lives but are now unable to work, and this is a big blow to their ego and sense of purpose in life…”
Jeffrey Parsonnet, MD
“Many patients express sentiments like, ‘I do not feel like myself,’ ‘I feel like I have suddenly become stupid,’ ‘I feel like I’ve aged 10 years overnight,’ or ‘I just want my life back.’ People with Long COVID know that something is wrong with them but worry that others may see them as being lazy or hypochondriacal, and this is especially painful. Most Long COVID sufferers are people who have worked hard all their lives but are now unable to work, and this is a big blow to their ego and sense of purpose in life.”
• Jeffrey Parsonnet, MD, head of Dartmouth Health’s Post-Acute COVID Syndrome Clinic
“Long COVID can create a sense of depersonalization. This can feel like an out of body experience that feels surreal, like you are outside of your body looking at yourself live this life that doesn’t feel real. This comes along with the grieving the self that you once knew. The residual impact of COVID feels like it’s forever and that is so hard to grapple with. Not only does it cause physical changes but it impacts you mentally and psychologically. It is ok to allow yourself to grieve as you adjust to a new life.”
• Dr. N. Karen Thames, PsyD, Founder and Executive Director of The EPIC Foundation
“All of a sudden we are not who we were. And we are also impacted by the people around us who see us differently too. Many of them will see us as lazy even though we are desperately working to get our lives back. Many will see us as faking, as though anyone would want to painfully lose everything to live with a chronic, invisible illness. Many don’t know how to relate or connect to disabled patients. Many feel a loss too. You have to understand that is for them to deal with – not for you to internalize – although, if you are able to educate or advocate without getting sicker, it might help you in the long run.”
• ME/CFS San Diego
Q: What do you want Unaffected people to know?
“That approximately 1 in 5 people who have had COVID-19 will go on to develop Long COVID. My advice to them would be to ask their doctor about any new or persistent symptoms they may be experiencing after a COVID-19 infection as it may be Long COVID…My advice to those who are not affected by Long COVID is to be kind and understanding to those to those who suffer from Long COVID as they find a new normal for themselves.”
• Dr. Sritha Rajupet, Director of the Stony Brook Medicine Post-COVID Clinic
“Look around you. Someone you know has Long COVID, even if they hide it or do not understand it. Offer compassion to those who are not as fortunate as you. Do not assume you are more virtuous or deserving of good health. Stay healthy so you can help others who have had the misfortune of developing Long COVID. Become informed with trusted information.”
• Lucinda Bateman, Bateman Horne Center
“Approximately 1 in 5 people who have had COVID-19 will go on to develop Long COVID.”
Dr. Sritha Rajupet
“Long COVID is an ‘organic disease’, a set of symptoms that is based on biological changes in the brain and other organs. It is as ‘real’ as diabetes or high blood pressure or a broken bone. One of the most difficult things about having long COVID is that the ‘usual’ tests that providers order come back as normal, but that does not make the syndrome any less real. Patients often feel a sense of isolation and dismissal, which can be as stressful and debilitating as the symptoms themselves. Therefore, it is important to listen and validate the concerns of someone with long COVID. There is no proven, specific treatment for Long COVID, but sufferers can be helped with symptom management by a knowledgeable provider.”
• Jeffrey Parsonnet, MD, head of Dartmouth Health’s Post-Acute COVID Syndrome Clinic
“For those not affected, Long COVID warriors need your support and empathy. You don’t have to have lived it to try to put yourself in their shoes. No one needs your judgment or unsolicited opinion about the cure all. Trust me, those who suffer have most likely tried everything possible to feel and to get better. Please take a nonjudgmental stance. Offer love and light. Offer compassion!”
• Dr. N. Karen Thames, PsyD, Founder and Executive Director of The EPIC Foundation
“Our society doesn’t really see or normalize most disabilities. We try to avoid and hide illness and differences. We need everyone to learn about post-viral fatiguing illnesses and not just because you or people you love might be affected. Figuring out mechanisms behind post-viral fatiguing illnesses has the potential to be a game changer for many other diseases and for our understanding of how the human body works. The estimated U.S. disease burden of ME/CFS in 2020 was estimated to be $36 billion to $51 billion. Those numbers have multiplied. If we are able to treat post-viral fatiguing illnesses and bring patients back as functional members of society, it would not only make a difference to the patients, it would make a difference to the world.”
• ME/CFS San Diego
