Was ist ME/CFS? 👉 ME/CFS ist eine schwere, komplexe Multisystemerkrankung. 👉 In Deutschland sind mindestens 650.000 Menschen betroffen. 👉 Viele von ihnen seit Jahren – oder Jahrzehnten! – ohne adäquate Versorgung, ohne Forschung, ohne Anerkennung. 👉 Die schwer(st) Betroffenen leiden unter extremer Erschöpfung, Belastungsintoleranz und #PEM, Schmerzen, Herz-Kreislaufproblemen und vielem mehr – oft bis hin zur völligen Pflegebedürftigkeit. ➡️ #severeME 3/5
2/ 👂LISTEN to people with #MyalgicE and their carers👂
It is crucial to have personalised care plans incorporating their needs, coming from lived experiences of symptom management. Do not ignore requests to protect patients from #PEM. From Safer Hospital Care for People with #SevereME: buff.ly/46wv5lD #MECFS
Severe ME Day, held on the 8th of August each year, is a significant occasion for the World ME Alliance and the global community affected by Myalgic Encephalomyelitis (ME).
"Oxygen extraction by the body’s tissues was compromised in patients who had symptoms of #exerciseIntolerance after #COVID"
"Patients are told that their symptoms are a result of deconditioning, or decline from lack of physical activity. Our findings contradict that hypothesis."
