Thread by @sunsopeningband

Exercise duration by itself is not an appropriate functional outcome measure for #pwme and patients with #LongCovid. If we wouldn’t stress test a diabetic with a candy bar, we shouldn’t stress #pwme and patients with #LongCovid using bike and treadmill “exercise-for-time” tasks.

Formalized exercise testing to determine metabolic, cardiac, and pulmonary functioning has its place for diagnosis and to characterize disability for #pwme and #LongCovid, including the appropriate caveats and safeguards. Six minute walk test and cycle/walk for time aren’t it.

People with post exertional symptom exacerbation enter anaerobic metabolism earlier during maximal exercise than deconditioned people. Exercise tasks and tests that are submaximal for people with a normal functioning aerobic energy system may be supramaximal for people who don’t.

Part of the reason informal exercise testing is happening clinically is because physical therapists often must report the findings of “objective tests” in order to receive payment and authorization for more visits. I feel this pain myself as a clinician. We must be more creative.

Since nobody asked, how do we get more creative? Let’s step back and think about what we’re doing here. #pwme and people with #LongCovid and post exertional symptom exacerbation appear to have a chronic neuroimmune disease in which multiple body systems have jumped the track.

We know from listening to patients and doing the science that the prognosis for full recovery to pre-illness levels is very infrequent in diseases that involve post exertional symptom exacerbation. Mileage may vary for a lot of reasons, but it’s what we generally know right now.

So far, we can take away two insights. First, our goals must first relate to compensation potential in nature because of the suspected prognosis. Second, the sticky persistence of symptoms and functional disablement means we need to be in it with our patients for the long run.

Already, we can see that an intensive care model of three times a week for four weeks or two times a week for six weeks doesn’t fit with the needs of compensation treatment goals and the persistence of disablement. We need to stretch out and diversify our contacts with patients.

Telehealth is great for people with post exertional symptom exacerbation. The acts of coming to the office, sitting in the waiting room, and getting home again can induce a flare. And that’s before we factor in anything we do with patients in the clinic. Again, mileage may vary.

Even telehealth isn’t a panacea against iatrogenic post exertional symptom exacerbation. Many with PESE have flareups from excessive cognitive loads and sensory overstimulation. Session durations should be calibrated to avoid flareups related to cognitive and sensory burden.

We know any effect we might have on the disease process will be slow. We also know symptoms change quickly or slowly, based on the patient presentation. It’s hard to know what effect we’re having compared to the disease if we measure too close together. Space visits accordingly.

As you’re spacing out visits to accommodate a compensation treatment plan and a disease that changes slowly over time, provide opportunities for asynchronous contact, such as by email or text. Make sure to give the office hours during which patients can anticipate a response.

Asynchronous contacts can help patients with PESE because sleep dysfunction and poorly refreshing sleep mean that many patients with PESE keep later hours than generally earlybird physical therapists. Email and text can allow us to help people when they’re most functional.

#StopRestPace means the first step is you’re going to help #pwme and people with #LongCovid make informed decisions about how to spend their energy. Getting to know them, their preferences and routines, and their aspirations is more important than measuring their exercise time.

We’ve made the ideas of therapeutic alliance and partnering with patients kind of a cliché on this bird app, but it counts a lot for people with PESE. They are blown off, lied to, gaslit, and disbelieved in ways that are hard to imagine before they even set foot in our offices.

The good old fashioned doctoring of getting to know a patient before even getting to know the disease is important here, because it helps form critical partnerships and provides qualitative data and comparable signs for reevaluation that are more meaningful than “exercise time.”

Our group has advocated pacing based on heart rate biofeedback for a number of years. It used to be that we needed a research-grade piece of equipment in order to do it well. Most commercially available fitness monitors (sorry, FitBit 😬) are now accurate enough to do the job.

What does this mean for objective testing? Well, we can now do useful testing without the patient needing to be in our offices. With the appropriate patient consent, we can have access to heart rate, heart rate variability, oxygen saturation, and a whole host of other data.

Given the recent development in wearable technology, we don’t really have a need for exercise time, grip strength, and other proxy measures of functioning, when we can now get real time physiological data while the patient is actually, well, functioning. Let’s use it clinically.

(Of course, not to paint too rosy a picture here, because there are people who are medically fragile enough to need close supervision when exerting. And fitness trackers and apps are inherently ableist, so the fit needs a lot of creative adaptation by the patient and clinician.)

So, anyway, just some thoughts about intervention strategies, program design, and clinical measurement in #pwme, people with #LongCovid, and people with PESE broadly. Hope there was a part of that rambling which made you think, and maybe even changed your mind about something. 😊