Thread by @sunsopeningband

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS Well, the last thing I want to do is to mischaracterize the position of my @4workwell colleagues, but there's (sadly) renewed interest in the topic, I drank a poorly timed cup of coffee, I'm procrastinating, and that must mean it's time for a PEM tweetorial. #LongCOVID #MECFS 1/n

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS What's in a name? A lot of terrible things. Post-exertional malaise (PEM) is an episodic flare-up of symptoms that is related to activity. Let's break that down. The episodes mean patients will report symptoms that come and go: "crashing," "relapsing," or even "bonking." 2/n

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS In the early phase of the illness -- and yes, it's invisible but it's an illness (a tweetorial for a different time) -- the relapsing-remitting nature can make it difficult for knowledgeable clinicians to identify the pattern and assist with the diagnosis in a timely fashion. 3/n

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS What's more, the come-and-go nature of PEM also makes it hard to identify what might be causing it. Things that can cause PEM include physical and cognitive stressors. It doesn't take a lot of the stressor. Even everyday things can be the stressor. 4/n pubmed.ncbi.nlm.nih.gov/29856774/

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS Chu et al found physical and emotional stressors can trigger PEM symptoms. Here are the symptoms from their survey. Notice anything unique? (Hint: If you aren't a patient, would you have any of these after everyday physical and cognitive tasks? Very likely, you would not.) 5/n

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS What's more, Chu et al established that physical/cognitive stressors were more likely than emotional stressors to trigger PEM symptoms. (Side note 💡: Here's evidence that post-viral fatigue, whether #LongCOVID or #MECFS is not an "emotionally-based," condition.) 6/n

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS You may be wondering how long PEM symptoms take to develop after a triggering activity. According to the patient survey by Chu et al, the most common answer was that it varies. It could be immediate, or it could be more than 24 hours later. It's individual. 7/n

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS Gratuitous self citation alert 🚨: We previously found that inability to recover to baseline symptoms within 24 hours after a two-day CPET distinguished between people with #MECFS and matched control subjects, which matches the Chu et al timeline. 8/n pubmed.ncbi.nlm.nih.gov/21208154/

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS You also may be wondering how long PEM flare-ups can last. The answer, of course, is as long as the triggering activity remains present. But, assuming the triggering activity is removed -- again -- it depends but probably more than a couple of days. It's individual. 9/n

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS Here's an important chart to understand from the Chu et al study. Generally the range is from less than 24 hours to a week. But notice the range of PEM durations. It runs from less than an hour to YEARS. This can differ from person to person and symptom to symptom. 10/n

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS So, some take-home points:
1. Clinicians: Talk to your patients. Believe them. We didn't learn these conditions in school. (We're trying to change that.)
2. Patients: Document your symptoms and activities to gather the data to find patterns. Work with clinicians who listen. 11/n

@ClagueNjc36 @loscharlos @TomKindlon @LongCovidPhysio @PhysiosForME @4Workwell @PTOT4MECFS @OpenMedF @MEActNet @long_covid @LongCovidSOS Not sure if this thread brought clarity or more questions, but thanks for reading. I'll do some more about the physiological basis of PEM and how to use that data for PEM management soon. In the meantime, please visit our website for more resources. 12/fin workwellfoundation.org/resources/