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
4/ To create safer environment for people with #SevereME, 🗣️ always allow ADVOCATES 🗣️. Speaking takes immense energy for people with Severe ME and some are unable to speak. Obtain consent to have a family member or advocacy worker to speak on their behalf. #MECFS #SevereMEDay @severeme @mecfs
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).
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).
People with #SevereME may have acute food intolerances & struggle to swallow or digest. Malnutrition can be fatal. Special diets, flexible meal times, IV hydration & tube feeding in adjusted feeding positions can all be life saving. Safer hospital care is possible. #SevereMEDay @severeme @mecfs
