Some recent tweets:
Thread 1
Maybe it’s just another day ending in “y” around here but I’ll volunteer we can never do enough to educate health care practitioners about PEM—the thing that breaks all the rules. We simply can never have enough caution and clarity surrounding PEM, particularly how to do no harm.
In trying to understand this confusing phenomenon, I’ve spent more times wrong than right. After all, as a researcher all your best ideas are still just hypotheses and as a clinician the best you’ll ever do is still considered practicing. The greater pursuit isn’t to be right…
it’s to *get it right.* Sometimes that critique is pointed and direct. There’s a lot of painful experiences and trauma out there. As someone studying a phenomenon I don’t live with, the best I can do is be a knowledgeable and empathetic interloper. But an interloper nevertheless.
So it’s with close partnership of people living with PEM that we can learn, grow, and do better. Patients don’t have the obligation to deliver feedback on our mistakes in any certain tone or way. No heroes, no pedestals. Only our best. Here’s to the pursuit of get ting it right.
Thread 2
We still know precious little about PEM, but one thing's for certain--it represents an impaired recovery response to exertion. How do we know this? We had data from systems to molecules, replicated across myalgic encephalomyelitis cohorts originating regardless of patho-etiology.
Who cares? Because a foundational aspect of being human is being able to count on physiological adaptations to exerting ourselves. Walk a little more so you can walk a little more. Read a little more so you can read a little more. Do some more to do more later. It's fundamental.
One way to think about this that has been described is the 'energy envelope.' (The terminology imprecision makes me a little crazy as a physio and exercise scientist, but it's popular and we'll go with it.) The energy envelope is the total amount of energy available to do things.
Normally, we think the energy envelope should be expandable but only with loads exerted just beyond its boundaries. That's called the principle of overload. And that adaptation to exertion should occur along the lines of the exertion. That's called the principle of specificity.
But here's the thing. In PEM, the energy envelope does not expand normally with exertion just beyond its borders. In fact, data from systems to molecules shows it *contracts* from acute exertion, and it does not show a normal response with chronic exertion (i.e., training).
So when people kindly ask me about exerting for PEM (and sometimes they make that mistake), whether that's physical (exercise) or cognitive (brain retraining and happy thoughts), I always have to ask: given the system's demonstrated lack of ability to adapt -- what's the goal?
If the goal to improve one's ability to exert or how they feel after exertion is to operate within the envelope to expand it, then I would humbly submit that's not how it works because it violates the principle of overload. I will not be able to improve my ability to run a 5K by
doing 40 oz curls watching baseball on my couch. Similarly, we shouldn't think under-exerting should result in performance improvements in a normal system. Relative rest promoting improvement sounds like...pacing. Maybe we should give ourselves permission to think differently.
If the goal is managing other conditions known to be associated with PEM that are sensitive to exercise, well, friend, welcome to a massive gray area with plenty of room for interpretation. For example, it's true that many people with dysautonomia find improvement with exercise.
However, we should avoid a few common temptations. First temptation: we can't say that all people with PEM should do some exercise because PEM frequently involves dysautonomia. Some people can't sit upright, speak, and digest food. I humbly submit let's not exercise them.
Second temptation: we can't say all people with PEM should exercise regardless of how they feel because, well, dysautonomia. There are two processes going on here, and one of them doesn't like exercise. It does not do the patient any good to simply ignore the one that's harder.
Third temptation: we can say everyone with PEM should move as much as they can, but we should stop short of qualifying that in any way. Remember, that energy envelope expands and contracts for reasons known and unknown. How much to move should be up to the patient to decide.
(A side note on this temptation. We've talked about activity responses for years, using the archetypes of the couch and roller coaster. The roller coaster was our analogy for the push-crash cycle of PEM. The couch was our analogy for folks who under-exert. But here's the thing...
In about fifteen years of doing this *waves generally* I've never had to get anyone off the couch who wasn't first physiologically ready to do that. People want to move. When they don't, there's a reason. Rather than forcing the issue, figure out why they're crashed if you can.)
PEM is challenging because it forces us to think differently in all ways about how the body responds to exertion. Normal training rules in exercise and rehabilitation do not apply. Less is more--and when you think you're doing less then you're probably still doing too much.
And when you think a patient is ready to 'build up,' remember that does not happen (or does not happen reliably enough to be trusted) in PEM. Any approach to exercise should be undertaken only after a long runway of pacing to understand a person's individual PEM characteristics,
lifestyle, wants, needs, and preferences. Goals should be clear and transparent to everyone. Exercise *always* occurs at a cost, so as people using it as treatment, we need to ensure the cost is something the patient can/will do, and it comes with a clear and measurable benefit.
Anyway, I'm done typing now so thanks for reading. I guess I'll conclude with my favorite fourth temptation: association isn't causation: when a patient improves and can exercise more, don't automatically assume it's exercise causing the improvement. Relapses can and do happen.
Thread 3
A few quick notes about being concerned people are under-exerting. People always should be engaged as trustworthy arbiters of their own abilities, people have the right of autonomy to do with bodies what they want to do or not to do, and I’m a physio not a cop.
You know, speaking as someone who’s dealt with this very issue across many clinical contexts for a lot of years, and who teaches others how to do the same, if I had to have a specific declared opinion about it.
The situation of thinking someone with PEM can do more is the same as that person in inpatient rehab who uses a bedpan and won’t walk to the bathroom is the same as that athlete who won’t return to practice is the same as the injured worker who is living off the system.
I can promise you that using “rehabilitation” as an inducement or coercion to get someone to do something they’re not comfortable or ready to do without thoroughly understanding and engaging why they’re not doing that thing is the easiest but most incorrect an swer, every time.