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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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“The research presented in this special issue demonstrates the importance of early recognition of PEM for symptom management and improved quality of life. It describes a screening method for identifying who has and who does not have PEM and summarizes symptoms of PEM to differentiate people with ME/CFS and a control group.”
@longcovid @mecfs #mecfs #LongCovid
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“It is the clinician’s role in the care of patients with PEM/PESE to identify the symptoms that most interfere with activities of daily living; assist the patient with prioritizing meaningful and purposeful tasks; and analyze activities for modifications and adaptations.”
@longcovid @mecfs #OT #OTalk #mecfs #longcovid
@tomkindlon @longcovid @mecfs It's not about "managing the symptoms". It's about "managing my capacity for activity".
A viable, useful treatment would increase my capacity for the same level of symptoms.
Anything that focuses on symptom severity is doomed to fail - I don't have symptoms that can be usefully managed, I have capacity limitations that trigger symptoms, and the clinician's job should be to help me identify those limitations!
@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.