How to treat long COVID in 3 steps

Let’s be honest: long COVID is a beast. We were unprepared for this pandemic. Illness and disability communities saw this coming, but medical and research communities have not listened. We haven’t learned from pre-pandemic post infectious illnesses despite their existence for decades upon decades (?forever). For example, Myalgic Encephalomyelitis is the lowest funded with respect to disease burden, as this study found, with disease burden being “double that of HIV/AIDS” and more than double that of MS. In fact, NIH funding would have to increase roughly 14-fold to correspond with disease burden! So, as evidence-informed rehab professionals and healthcare workers how can we support people living with illnesses historically understudied? While long COVID is certainly garnering more research and funding interests, we cannot wait on answers from new research, alone. Otherwise, we will wait for years while patients suffer. Assessing, treating, and supporting patients living with long COVID and other post infectious illnesses requires humility and a paradigm shift in order to Do No Harm – also known as nonmaleficence – and to practice beneficence (my bioethics professor would be proud!) Here are three steps to shift your practice in order to effectively treat long COVID, post infectious illnesses, and other not-well-understood illnesses.

Step 1. Throw away what you think you know

Throw away what you think you know about how illness and disability looks. Throw away your pre-conceived expectations. Throw away everything you know, for now. Most especially, throw away the obsession with deconditioning as an underlying mechanism. Accept that you are no longer the expert. Accept that deconditioning is not the answer, nor the paramount concern, when it comes to physiology that is no longer normative and biomedical illness that is not yet understood. Without this step, you won’t be able to listen or believe; you will remain stuck in skepticism and ideas that psychologise biomedical illness. Without humbly putting down your tools, experiences, skills, and sense of expertise, you will be at risk of harming people.

Step 2. Unlearn, Learn, Re-learn

Take the time to learn about intersecting illnesses. This includes, but is not limited to, Postural Orthostatic Tachycardia Syndrome (POTS), Myalgic Encephalomyelitis (ME), and hypermobile Ehlers-Danlos Syndrome (hEDS, EDS). The only reason you may not need to is if you have expertise from working with these populations and are aware of the overlap. While the 10,000 hour rule (see Anders Ericsson; Malcolm Gladwell) is an oversimplified definition of expertise, allow me to use it to illustrate that running a long COVID clinic or working with long COVID patients for 1-2 years does not qualify you as an expert. Whatever you think you know, it is the tip of the iceberg. Update your understanding of the overlap and possible connections between the above illnesses, in addition to new long COVID research and information. Divest yourself from the deconditioning lens (tons of unlearning to do, here!) and resist the impulse to recommend progressively increasing activity in the presence of PEM! Use resources that are upheld by and informed by patients. And remember that all research/webinars/resources are not created equal.

Step 3. Choose the tools that fit

Now, and only now, are you ready to look at the tools and experiences you previously discarded in Step 1. You threw them away – they’re scattered on the floor – but you’re ready to pick up what fits with your new knowledge and insight. Your patient can help you with this decision-making, too. You will leave some tools, past experiences, and strategies for assessment and treatment intervention behind. You need only those things that might be useful in combination with your new knowledge from your patient and from updated learning.

In order to practice safely and effectively, without causing harm, you cannot skip straight to Step 3. Our problem-solving impulses mean immediately looking to past knowledge, experiences, and skills (Step 3) but that won’t work, here. You will cause harm (whether physical or psychological) if you skip Steps 1 and 2. Intent doesn’t matter. You can be the kindest, most well-intentioned practitioner, but harm is harm. You also may need to repeat these three steps with every new patient, or even repeated encounters with known patients. There is always room for learning and humility. And shifting a paradigm and divesting yourself from a deconditioning lens requires practice. Remember, time and repetition are what makes expertise.

Three steps towards helping your patient. Three steps to shift your paradigm. Three steps towards practicing with humility and facing the fact that we don’t know what we think we know.