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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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"Access to appropriate medical care and progress in developing treatment have been very slow for ME/CFS patients. This is further complicated by having to fight the stigma of ME/CFS being viewed as a lazy or anxious person’s disease and not as the serious life-altering disease it is.
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“However, with the onslaught of Long COVID, more attention has been given to the devastating impact this disease [ME/CFS] has on quality of life. These patients need more qualified care providers who have the most up-to-date research, care guidelines, and the inquisitiveness to solve difficult medically complex cases."
@longcovid @mecfs #mecfs #cfs #pwme #PwMEs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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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.”
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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.”
@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!
I don't understand this distinction. For me it's the symptoms which seem to limit my capacity for activity.
@liv @longcovid @mecfs @tomkindlon Once the symptoms start, they limit me. As I pace, I reach a point where the symptoms are tolerable. I can either hold activity low (so the symptoms recede like the tide, with lots of small individual waves) or do more (the symptoms hold steady).
As my baseline rises, my symptom severity holds steady because it is more important to me to bathe more often and have a clean bed than to reduce my symptom severity.
Thanks, that makes sense in the context of what you experience (for me I can want to be clean all I like, but if I push it too far I literally can't walk or move my arms, so would paradoxically end up dirtier).
If I'm understanding you correctly, improving baselines and tolerance is more important than specific symptoms?
@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.