[Thread]New article "Safer Hospital Care for Severe ME".
worldmealliance.org/2024/08/sa…
Of course many of the tips are relevant to patients of all severities.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME @severeme @mecfs
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Safer Hospital Care for Severe ME - #SevereMEDay 2024 - World ME Alliance
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).World ME Alliance
Tom Kindlon
in reply to Tom Kindlon • • •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
@severeme @mecfs
Safer Hospital Care for Severe ME - #SevereMEDay 2024 - World ME Alliance
World ME AllianceTom Kindlon
in reply to Tom Kindlon • • •3/
✏️EDUCATE healthcare staff🧑⚕️
Provide comprehensive training and up-to-date scientific understanding of ME. Discredited treatments CBT and GET are inappropriate.
Read more: buff.ly/46wv5lD #SevereMEDay #SevereME
#mecfs @severeme @mecfs
Tom Kindlon
in reply to Tom Kindlon • • •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
Tom Kindlon
in reply to Tom Kindlon • • •5/
😌Pace, Pace and PACE😌 Prioritise resting. Undisturbed sleep is vital to prevent decline. Eliminate all non-essential interaction, move slowly and quietly around the patient. buff.ly/46wv5lD #MECFS #SevereMEDay
@severeme @mecfs
Tom Kindlon
in reply to Tom Kindlon • • •6/
🔇Sensory safe environment🕶️ Provide private, soundproofed, and dimly lit rooms. Reduce smells, sensory overload, and physical contact to minimise post-exertional malaise (PEM). buff.ly/46wv5lD
#SevereMEDay #MECFS #MyalgicEncephalomyelitis
@severeme @mecfs
Safer Hospital Care for Severe ME - #SevereMEDay 2024 - World ME Alliance
World ME AllianceTom Kindlon
in reply to Tom Kindlon • • •7/
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