I've heard a few stories that have concerned me lately, beyond someone going to their primary care to discuss Long COVID, and the doctor admitting they need to do some research before they can help (which is completely understandable -- this is a new condition!).
The first one comes from a friend struggling with a resurgence of autoimmune symptoms along with fatigue and sleep problems. While this person has not tested positive, the symptoms came about during the course of the pandemic. They've been in and out of multiple doctors and specialists, with no clear diagnosis. Thankfully some drug prescriptions have helped calm down most of the symptoms. Knowing all of their symptoms are on the top ten list for people with Long COVID, AND up to 30% of people with Long COVID have never had Acute COVID symptoms, AND that Long COVID often comes with an acquiring of a or worsening of autoimmune disease, we encouraged this person to talk to their medical team about it. The team's response? "Your symptoms don't sound like Long COVID and there isn't really a reason to explore the possibility."
The second one comes from a peer of mine struggling with brain fog, random migraine-like headaches, and disabling exhaustion. They talked about it in passage to a neuropsychologist (in a major medical system) who responded, "Long COVID doesn't exist!"
The third comes from a student who, while on a clinical internship screened a patient for Long COVID along with their clinical supervisor. The patient was positive on the Active Stand test for dysautonomia, likely POTS, and also was experiencing partial-total disability in running their small business. The clinical instructor and the student referred the patient back to the primary care doctor with recommendations to seek Long COVID care as well as consider disability paperwork. According to the student, the doctor completely refused, citing a lack of medical evidence, and did not do any further intervention for the patient.
These stories make me so sad. It's one of the reasons why I am raising my voice in the community. How is it possible, when there are billions of dollars going into a National Institute of Health research initiative, as well as an overwhelming body of medical papers concluding Long COVID's existence, that we are still this making these mistakes?? As a provider myself, I understand how hard it can be to work through a patient's story, history, and current concerns and make sense of it all. But we MUST do better.
Here are the reasons why I think screening and diagnosis of Long COVID is essential for every medical provider's repertoire:
1) Advocacy/visibility: Quite simply, a rising tide raises all ships. Estimates are up to 5% of the US population has experienced Long COVID symptoms, and about a quarter of that number are partially to totally disabled. The more people that are properly diagnosed, the better leveraged we all are to raise awareness. Raising awareness can lead to improved community and workplace support, funds to help people financially devastated from Long COVID, and reduce the stigma of living with this post viral illness.
2) Comprehensive/team based healthcare: Long COVID affects mental, emotional, and physical health. A diagnosis makes it easier for a patient to access physical and occupational therapies, neurocognitive testing, cardiovascular screening, sleep support, and more.
3) Participation in research: There are hundreds of papers coming out every quarter about Long COVID as well as major research initiatives from the NIH. The larger the pool of people we have for this research, the more valid the conclusions become. I myself have participated in four research studies to date and I plan to continue.
4) Less chance of missed diagnoses - In the first story, I discussed a friend who is experiencing partial resolution of their symptoms. What if they do have Long COVID though? It's well known now that Long COVID is a multi-system disease, and needs multiple treatment modalities. What if this person's symptoms they continue to have could in fact be treated, by say, going to a sleep lab or working with an occupational therapist who specializes in Long COVID?
5) Making hard decisions about disability - until I was diagnosed with Long COVID, I had no way of understanding what was going on. Not being able to work was a personal failure to me. I pushed myself until my body gave up and I wound up in the emergency room. Thousands of people are potentially in this very same position of feeling incredibly ill. With no diagnosis, however, they have no choice but to continue to push to the detriment of their long term health. A Long COVID diagnosis helps you to realistically look at your abilities, and make decisions about work and home from there.
6) Ruling in/out Long COVID is simply good medical care! It's a probable enough diagnosis that it should be at the top of every provider's checklist. There are clinical decision making rules, currently proposed for the research setting only, in the works to help with diagnosis. There may also soon be biomarkers for Long COVID that you can test for. I heard a lovely story story about a patient presenting with tachycardia who was at first suspected to have Long COVID, until a full system review was performed and a blood test revealed hyperthyroidism. With treatment the patient fully recovered. What wonderful news and a great example of how listening to a patient, and keeping all diagnostic possibilities on the table, led to an important diagnosis. Long COVID symptoms also mimic other misunderstood conditions, such as perimenopause. Taking time to record symptoms and track down the appropriate specialists could be life changing.
If you are a person with Long COVID symptoms, remember that your doctor is only human. Be patient with them, as they may not immediately know the right steps to take for ruling in/out Long COVID. Seek another opinion if your provider dismisses Long COVID as a disease and/or your symptoms. Another reason to seek out another doctor is simply if you don't get along with them! Good medical care starts with healthy therapeutic alliances, and not everybody is going to like one another. If you are needing a new doctor, remember to choose one who follows evidence based care. At the appointment with a new provider, keep on hand with you the NIH Recover COVID website as a resource to help your care providers. You would also benefit from calling ahead to alert the medical team that you need time to discuss complex, life disrupting symptoms and they may be able to get you an extended appointment. This takes a ton of pressure off of everyone involved.
If you are a provider, especially a therapy provider -- I have a free training on my Vimeo page for the screening and treatment of Long COVID. The NIH also has free seminars on the current research findings on Long COVID almost every month. If you are concerned your patient has Long COVID, the first step is to do a systems review and get a complete list of disabling symptoms the patient is experiencing, even if the patient thinks the symptoms are unrelated. Second is to look at the timing -- did these symptoms start relatively close to the time of an acute COVID-19 infection? Keep in mind that many people have had COVID-19 without realizing it, however. From there, find the Long COVID specialists in your network or consider becoming one yourself! If you don't have Long COVID specialists, assemble a team for your patient including one from physical or occupational therapy as well as a specialist for the major symptom(s) they are experiencing. We need your help.
Thank you for reading,
Autumn
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