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New article "Safer Hospital Care for Severe ME".
https://worldmealliance.org/2024/08/safer-hospital-care-for-severe-me-severemeday-2024/
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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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: https://buff.ly/46wv5lD
#MECFS
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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
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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
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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. Https://buff.ly/46wv5lD #MECFS #SevereMEDay
@severeme @mecfs
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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). https://buff.ly/46wv5lD
#SevereMEDay #MECFS #MyalgicEncephalomyelitis
@severeme @mecfs
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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
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Medication Management for Safer Hospital Care
Accommodate extreme sensitivities in people with ME. Start medications one at a time and taper up slowly to avoid potential adverse reactions to drugs. https://buff.ly/46wv5lD #MECFS #SevereMEDay
@severeme @mecfs
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Following #SevereMEDay, we highlight a simple aspect of hospital care: BELIEVE ME. People with #SevereME endure very low quality of life. Patients should have their physiological disease recognised & symptoms addressed. Don’t magnify distress with disdain or medical gaslighting.
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Mindful Communication Healthcare professionals - you can improve experiences. Provide clear and compassionate communication. Involve family and caretakers in decision-making processes. If patients can tolerate conversation, speak slowly and quietly. #SevereME #MedTwitter
@severeme @mecfs #mecfs
Slower communication would go such a long way for me at times. 