Advice for Long-Haulers, from the Life-Longers

What the ME community can teach Covid long-haulers

Christina Baltais/@wordsasmedicine

While SARS-CoV-2 is new, the problem of long-term symptoms after an infection isn’t. I wrote about some tips and advice that people with myalgic encephalomyelitis (ME) can offer to the Covid long-haul community for Elemental, here. While we’re still looking for answers ourselves, given how historically underfunded ME research has been, we do have a few tips to share in the hopes they may help keep some of the long-haulers from becoming life-longers.

And, since there’s more than could reasonably fit in one article, I’m adding a few more details below:

• I mentioned the idea of “preemptive rest” — resting before you have a symptom flare, rather than after. You incorporate planned rest periods into your day as a preventative measure. You can find a good resource discussing this (and the general pacing) strategy here.
• The Elemental article touches on the idea of heart rate monitoring. Experts recommend using a chest strap monitor, determining your stabilized resting heart rate (this Facebook group is a treasure trove of information about pacing with a heart rate monitor), and staying within 15 bpm of that number to start — especially if you don’t know what your anaerobic threshold (AT) is. Your AT is that point you really don’t want to go beyond.

Sure, but what the duck is the “anaerobic threshold”?

We have two energy systems: aerobic and anaerobic. Generally, we’re supposed to be able to go about most of our business using the aerobic energy system, and only switch to anaerobic if absolutely necessary. When in aerobic, the body converts glucose into a relative abundance of energy (ATP): one glucose molecule nets you 36 or so ATP. But the anaerobic energy system is inefficient; it’s the emergency system for high-intensity activities, and it’s meant to be used only for very short durations — for example, you suddenly need to run from a honey badger. As one does. Here, one glucose molecule gets you only 2 ATP.

But if the regular, aerobic energy system is broken, as is the case in ME patients and may also be the case in long-Covid, people shift into anaerobic much too soon. “If you’re constantly shifting into that emergency system to do your daily activities, it’s like running a sprint,” says Staci Stevens, exercise physiologist and founder and director of Workwell Foundation — which has given some thought to how rehabilitation strategies that help ME patients may also benefit some long-haulers.

“And you know how you feel after you run a sprint,” she says, “you pay the consequence.”

The only way to accurately pinpoint your AT is to undergo a cardio-pulmonary exercise test (CPET), which shows you at precisely what heart rate you switch over. Not only is a perfectly calibrated CPET not widely available (requiring specialized equipment and personnel), it’s also costly and comes with a not-small amount of risk. The equation many use to estimate what heart rate they should stay below may not be accurate, warns Stevens, since it is based on a healthy, normal heart rate response. Consequently, it will likely overestimate how high one’s heart rate can go before crossing the anaerobic threshold.

• Hence, the rule of thumb mentioned above: stay within 15 bpm of your stable, resting heart rate. Limit any time over that amount to only 2–5 minutes, and then rest. “You have to completely think different about pre-illness status and post-illness expectations,” says Stevens.
• Pros recommend using a chest strap monitor for the sake of accuracy, because smart watches can be up to 30 beats-per-minute off. You can pair it with apps such as Sweetbeat HRV, Pulseometer, or Heart Graph, for example. In some apps, you can set an alarm to go off when you’ve hit your limit.
• Do your computing while lying in bed — some laptop holders let you surf while supine. If you’re typing out a long email, type with your eyes closed.
• Some canes convert to stools so you can sit on-demand wherever you are.
• Cognitive exertion can cause symptom flares, just like physical exertion does. The Elemental article suggested that instead of expending mental effort following new plotlines, stick with things you’re already familiar with— Princess Bride, anyone? One long-hauler has started reading romance novels, for something light and easy to do. There are also many young adult books that may be easier on the brain. For a list of great suggestions, try here or here.
• If struggling with brain fog, try this website for easy calculations, suggests Liz Moore, 35, a disabled writer in the DC metro area.
• Get your own sleep data with something like an Oura Ring, or, you can wear your chest strap to monitor your HR and heart rate variability — a very informative measure — at night.
• Address any comorbid issues, such as restless leg syndrome.
• If you experience autonomic issues, such as postural orthostatic tachycardia syndrome, you may also want to consider increasing fluids with electrolytes (e.g., by adding NUUN tablets) or using an oral rehydration solution (such as Normalyte) — both of which can help decrease symptoms of orthostatic intolerance. But first please talk to your healthcare provider about an electrolyte replacement; don’t just dramatically increase your water intake.
• If you have various sensitivies, try noise-cancelling headphones or earplugs, as well as an eye mask or dark sunglasses. Use scent-free products, avoid harsh chemical cleaning agents, and check for any mold exposure in your living environment.
• Consult with a mast cell activation syndrome specialist, if need be.
• If in need, some financial disabilities guides might be helpful.
• If you’re female or female-presenting, it can, unfortunately, help to bring a male friend, family member, or partner to your doctor appointment.
• If your physician refuses to order testing, tell them you want it documented in their clinician’s notes that you made the request and they denied it.
• A few ways to help downshift into a more parasympathetic state: belly breathing, focus on any positive emotions and connections you can, meditate (many apps are free), keep a gratitude journal, try some brief and gentle qigong (if it does not trigger symptoms), watch positive or funny material (so, skip the horror movies), avoid interactions with toxic people, and stop doomscrolling.
• Please, stop doomscrolling.