Behind closed doors in the dark, Margot, @StillViv, @DaschaEliza, Ilse, @AnilvanderZee , Lara talk about life with severe ME. @LouCorsius talks about Céline.
Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.
I decided when sending a card to Millie, I would include a couple of interesting papers which show a 20° tilt is enough to cause problems in ME/CFS & separately that orthostatic intolerance wasn't found to be related to deconditioning.
💙It’s #SevereMEAwarenessDay
Please considering giving mutual aid to help me survive while being bedbound from severe ME. My partner and I are barely making ends meet even after skipping meals and rationing medication.
My recent trips to the hospital has left me in an even worse state and we need support now more than ever
Please also check out the link in the comment for wshlist for items we need to help, as well as ways to contribute to our survival fund🔽
🚨‼️Hi all, I need help getting two things that are urgent priority of my wishlist, but only have $20 in my account. A supplment my dr wants me on and a duvet cover to replace my current cheap poly one giving me severe skin issues. I’m severe and sleeping 16hr/day right now
We recently had over $600 in unexpected bills that took ALL of my savings. we will only have enough $ for rent and meds this month, some bills unpaid.
"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