Thread by @PutrinoLab

Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane. 🧵 1/

In the before times, many of us who treated postural orthostatic tachycardia syndrome (POTS) and dysautonomia worked with folks who did not have associated IACCs. Many of us were unaware of IACCs because it wasn’t part of our training in a substantive way and what training we 2/

did receive urged us to “treat” with a psych referral. So we treated a lot of POTS that was highly responsive to exercise-based interventions: modified CHOP, Levine, Buffalo treadmill protocol. Evidence-based protocols that worked more often than they didn’t, especially when 3/

paired with intelligent usage of POTS meds, compression garments and electrolytes. Great. Let’s pause here for a moment and talk about “evidence-based”: almost all evidence-based interventions work most of the time. Which means that even if you’re always up-to-date and 4/

following *the best* evidence your interventions won’t help everyone. Now, when your win column is bigger than your loss column or, let’s face it, your waitlist is long enough - it is easy not to follow-up to hard on the people who don’t respond and try to figure out why. It’s 5/

easy to say “it’s not me, it’s you” and walk away from them…or as a *caring* public health official once uttered, let them “fall by the wayside”. In fact, most clinical trials don’t try to figure out why someone responded vs. didn’t respond so long as the study worked out. 6/

Therein lies a problem with blindly relying on evidence-based practice: it only tells you so much about what to do, until you have a non-responder. Or perhaps phrased more eloquently by Iron Mike: “everyone has a plan until they get punched in the face”. What happens when a 7/

clinician or scientist that gets (ego-)punched in the face (has a patient that isn’t responding to their usual tricks) can tell you a lot about that person. There are a lot of maladaptive responses: gaslighting, hiding behind credentials, creating hierarchy between patient and 8/

provider, getting angry at the patient, ignoring the patient, etc. Or you could choose to do the work: partnering with the person in your care, reading more, listening and actively problem solving, referring to a clinician who is more experienced. All of the former are easy, 9/

all of the latter are hard. You can see why the majority of busy, overwhelmed clinicians choose the former. Anyway, back to exercise: pre-2020 if you were a POTS expert, you could use the old rule book and more often than not you’d win. What’s more: you were usually a SAVIOR. 10/

People had been to doctor after doctor telling them they had a functional disorder or anxiety or needed to exercise more, and here they came to you and you treated the hell out of their POTS and you were a hero. Now, here’s the wrinkle: many pw POTS, after being gaslit for so 11/

long and left to figure things out for themselves, will learn to (correctly) associate being active with worsening symptoms. In these situations, once rehabilitation begins they may need gentle encouragement to engage in rehab that increases in intensity. To be clear, though: 12/

best practices dictate that this is done from a place of trust when the clinician has developed good rapport and demonstrated clear familiarity with the person’s symptoms, not just: “I’m the clinician, you’re the patient, do as I say”. But as I said: all of this was in the 13/

before times. If you speak to most #LongCOVID, #MECFS or chronic #Lyme experts they will tell you that probably >70% have POTS or dysautonomia that contribute to their overall symptom burden in some way. This means that theoretically these people could benefit from POTS 14/

interventions, but there is one incredibly important caveat: they don’t just have POTS, they have POTS + PEM as a result of their IACC. This complicates things. Post-exertional malaise (PEM) is crushing, dangerous and can be worsened by anything that makes the body produce 15/

energy. If PEM is mild or moderate, it is possible that people with PEM + POTS can sometimes tolerate some autonomic rehab and make real, meaningful gains so long as the clinician is PEM-informed and knows where to stop. It isn’t perfect, but the balance of treating POTS 16/

whilst respecting PEM is possible. However, if someone has severe PEM, sure - they can have POTS as well, but the diagnosis of POTS honestly becomes a little moot - if you’re so sick with PEM that you can’t tolerate light, or brushing your teeth, or rolling over in bed? Let’s 17/

try to figure that out before we go any further. And let’s be clear: there is precedence for *not* trying to exercise through illness: if someone had Duchenne’s muscular dystrophy and told you they couldn’t walk to the bathroom easily anymore, you wouldn’t ask them to do that 18/

because exertion would accelerate their muscle breakdown. If someone with end-stage ALS tells you the glare from a window in their room is making them fatigued, you would pull down the shades and block that for them. Yet, somehow people with IACC seem to not be worthy of the 19/

same consideration from clinicians. We ignore the science showing that people with PEM are in energetic crisis (Wust et al) and/or experiencing heart failure during exercise (Systrom et al) and stick with the deeply flawed framework that the best way to fix someone who can’t 20/

tolerate exertion is to slowly and gradually reintroduce them to more exertion. This is so regressive, anti-science and harmful that I am at a loss for words for colleagues that still believe this but for anyone still reading, here is my eternal reminder: your patient is your 21/

biomarker. After 20yrs of patient care I can tell you that not a single person I have ever met wants to be this sick. If someone is telling you their PEM can’t tolerate what you’re prescribing: BELIEVE THEM. Open yourself to the possibility that your education on this topic 22/

was incomplete and maybe your perception of the patient experience needs to be updated. The IACC community is embattled and struggling. They need clinicians who are allies and understand their struggle. If you can’t be that, sit down and 🤐
Hope this helps to clarify. 🙏🏻 /end