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[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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A hospital and a drawing of a bed, lightbulb crossed out, sound symbol crossed out, plate with fork and spoon, syringe with tube. Text reads: Safe hospital care for Severe ME. Listen. #SevereMEDay August 8th. World ME Alliance.

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
#mecfs #MyalgicEncephalomyelitis #chronicfatiguesyndrome #cfs #pwme #SevereME @MECFS group @SevereME group
in reply to Tom Kindlon

Tom Kindlon
Tom Kindlon
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👂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

A hospital and a drawing of an ear. Text reads: Safe hospital care for Severe ME. Listen. #SevereMEDay August 8th. World ME Alliance.

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
#mecfs #PEM #SevereME #myalgice @MECFS group @SevereME group
in reply to Tom Kindlon

Tom Kindlon
Tom Kindlon
• •

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✏️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

A grey hospital and symbol of a person reading are on a jet balck background. Text reads: Safe hospital care for Severe ME. Educate healthcare staff. #SevereMEDay August 8th World ME Alliance
#mecfs #SevereME #severemeday @MECFS group @SevereME group
in reply to Tom Kindlon

Tom Kindlon
Tom Kindlon
• •
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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
A hospital and a drawing of two people. Text reads: Allow family/advocates at all times. Listen. #SevereMEDay August 8th. World ME Alliance.
#mecfs #SevereME #severemeday @MECFS group @SevereME group
in reply to Tom Kindlon

Tom Kindlon
Tom Kindlon
• •

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😌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

A hospital and a bed and a clock. Text reads: Safeguard rest. Listen. #SevereMEDay August 8th. World ME Alliance.
#mecfs #severemeday @MECFS group @SevereME group
in reply to Tom Kindlon

Tom Kindlon
Tom Kindlon
• •

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🔇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

A light bulb and sound symbol both crossed out. Text reads: Ensure low-stimulus environment. Listen. #SevereMEDay August 8th. World ME Alliance.

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
#mecfs #MyalgicEncephalomyelitis #severemeday @MECFS group @SevereME group
in reply to Tom Kindlon

Tom Kindlon
Tom Kindlon
• •

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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

A fork and spoon on a plate. A syringe with a tube into it. Text reads: Support nutritional care, dietary requirements and tube feeding where required. #SevereMEDay August 8th. World ME Alliance.
#SevereME #severemeday @MECFS group @SevereME group
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