By Tamsin Zandstra & Bentley Holt
Dr. Jennie Johnson is an Infectious Disease Physician and Associate Medical Director at the Infectious Diseases and Immunology Center at The Miriam Hospital. She is also a Director at the Lifespan Lyme and Tick Borne Infections Center and an Assistant Professor of Medicine at Brown.
This interview has been edited for length and clarity.
What does the Lifespan Long COVID Clinic do?
The Long COVID Clinic was established in November 2020 following reports that people were having long lasting symptoms from COVID-19. This was unusual for a respiratory viral syndrome and people were getting symptoms weeks and months after infection. By the summer of 2020 this was being written about in academic journals. Patients had nowhere to turn to address these persisting symptoms and a growing need was being seen within Rhode Island to understand what was going on. There was a need to create a place to treat patients and so the Long COVID Clinic was established.
What motivated you to get involved with the Clinic?
I was motivated to join the clinic because no one was really talking about Long COVID and how to treat it.
Who is eligible/who is being referred to the Clinic?
At the moment patients must be referred to the Clinic, however this may change in the future.
Has the Clinic’s aim shifted over time/recently?
The Clinic’s aims are shifting. It has been a year and a half since the Clinic started and even though we still do not know a great deal about Long COVID there have been many advances in how it is treated. At the start we did a lot of standard testing to try and understand the virus but for a lot of patients the results were normal. This was reassuring for physicians however, for many patients extremely frustrating as many had never had a chronic illness before and had symptoms with normal testing, so they don’t know where to go from there.
What are best practices for treating Long COVID?
There are not really any best practices but we have some guidance based on experience from people who have treated Long COVID. There have currently been no large randomized control trials but the PASC Collaborative (Post-Acute Sequelae of SARS-CoV-2 infection), made up of clinicians and researchers from all over the world who are interested in treating or studying patients with Long COVID has come up with guidelines, based on expert opinion and experience for how to treat the most common symptoms. Long COVID is a diagnosis of exclusion meaning we have to make sure that nothing else is going on. Once there is an established diagnosis there are different ways to go about treating people. The PASC guidelines are great for addressing things like fatigue and neurological symptoms which are very difficult to treat.
There are varying definitions of Long COVID (CDC, WHO), how does this impact how your diagnose patients, if at all?
There is no agreed upon definition of what Long COVID is in any of the literature so trying to compare studies and do research has been a challenge but we are trying to get better at that. The CDC definition might be a little short as a lot of people are suffering with Middle COVID. The majority of people feel better before 3 months as opposed to the 1 or 2 month mark.
Are you seeing that Long COVID is more prevalent in certain demographics?
This has been a challenge as in order to be seen at the Clinic you have to be referred by a provider. This means that people without primary care physicians or access to care are taken out of the equation. We did this because Long COVID is a diagnosis of exclusion. Earlier on we were seeing a lot of patients with alternative diagnosis which we made because people had not seen a physician in so long. We were stretched so thin so we needed someone to have done the initial evaluation and have thought about these things before people come into the Clinic. We acknowledge that it is not ideal and it limits access to certain populations and those impacted by health disparities.
How can the health system better support patients?
A lot of it is about better education for providers and medical professionals and being upfront with patients about what we do and do not know. There are limitations in medicine and Long COVID faces limitations. Education for providers and saying that “it’s ok to not know” is important as well as validating patients and what they are going through. As Long COVID becomes better known and information is more widespread the hope is that patients will feel more heard and have a greater number of resources which they can turn to. Once we have more research and knowledge it will make it easier for patients to feel heard and for doctors to know what to do.
What would you recommend patients do if they suspect they may have Long COVID but are unsure?
If a patient suspects that they have Long COVID they should speak to their physician or provider who should ask questions such as when did you have COVID, did you feel better and then get Long COVID symptoms or did symptoms persist. There is no specific test for Long COVID.
Is there anything else you would like to add?
There is a lot I wish we knew about Long COVID. It is real and there are too many people experiencing it for it to only be psychosomatic. Medical researchers are working very hard to understand Long COVID and what causes it. Every patient is different and everyone has a unique case depending on their health and any underlying health conditions. The recognition that it is real is the first step and it does not matter that we do not have a clinical diagnosis. We are learning about Long COVID and how to give effective treatment.
The Initiative thanks Dr. Jennie Johnson for her time and efforts to support patients with Long COVID.