"European Network on #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (EUROMENE): Expert Consensus on the Diagnosis, Service Provision, & Care of People with ME/CFS in Europe (2021)"
which I thought was good
🧵
"Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID"
by Prof Brian Hughes ( @b_m_hughes ), Prof Steven Lubet & David Tuller DrPH
I listened to (watched) the introduction and half of the first episode of Post-Exertional Mayonnaise and had a tiny cry at the gigantic humbling this illness continues to serve me and all who suffer from it.
'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'
At my December appt. I talked about my ME/CFS symptoms & gave him a copy "Diagnosis and Management of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome" (link below)
At some point my doc said, "You must have a very severe case!" My response was no, severe cases are often bedbound, tube fed, etc
I can't work but I'm moderate. Doctors don't realize how severe ME/CFS can be
"*PEM is post-exertional malaise, also known as post-exertional symptom exacerbation. It is a symptom of ME/CFS and is also found in many people with #longCovid"
From:
Pattern of Post COVID Fatigue in Elderly Patients
"metabolic effects of aging are equally complex but hypometabolism is a constant feature. We hypothesise such limited metabolic response to exercise +/or stress may protect the patient from the typical hypermetabolic phenomena & its subsequent symptoms of PEM"
Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity