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Press release:
"A Better Understanding of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Could Benefit #LongCOVID Patients"
On the special edition of the journal WORK on #MEcfs & #postcovid
With quotes from Amy Mooney, an occupational therapist
@longcovid @mecfs #OT #OTalk #OccupationalTherapist #CFS #PwME #MyalgicE #CFSME #PwLC #PostCovidSyndrome #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers
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@robotistry @tomkindlon @longcovid @mecfs YMMV but I've heard from a lot of #PWME that it matters what symptoms you tackle. For me, it's about managing mast cell symptoms and heart rate. So the right way for me to get more energy is to take something that slows my heart rate down so that I don't exhaust myself as quickly. Taking something that makes me feel peppier might seem like the right thing to do, but when I feel peppy it means I'm running too "hot" and my energy envelope gets significantly smaller.
@Cetraria @tomkindlon @longcovid @mecfs I have cognitively-triggered PEM as well, so physical symptoms don't help much. The only thing that reliably helps is a strict routine and pacing. I can adjust that routine gradually over time, constantly adapting to whatever the current baseline is, but I'm not managing any specific symptoms, only how symptoms change with changes to that routine. (Feeling peppy = overdid it yesterday + flare coming.)
@robotistry @Cetraria @tomkindlon @longcovid @mecfs I get this too, people refuse to understand that too much phone time kills me. I absolutely love modern smart phones, you can silence individual people, you can pick and choose what voicemails to listen to rather than having to listen to them all in order, you can set do not disturb.