Tom KindlonAug 3, 2024

[Thread]
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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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). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentless suffering in […]

World ME Alliance
Show threadTom KindlonAug 4, 2024

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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

@severeme @mecfs

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). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentless suffering in […]

World ME Alliance
Show threadTom KindlonAug 5, 2024

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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

Show threadTom 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
Aug 6, 2024 at 11:04amWeb
Show threadTom KindlonAug 6, 2024

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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

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). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentless suffering in […]

World ME Alliance
Show threadTom KindlonAug 7, 2024

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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

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). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentless suffering in […]

World ME Alliance
Show threadTom KindlonAug 8, 2024

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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

Show threadTom KindlonAug 9, 2024

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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

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). This day is dedicated to shedding light on the experience of people with the most severe forms of ME enduring a life of relentless suffering in […]

World ME Alliance
Show threadTom KindlonAug 9, 2024

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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.

#MEcfs #PwME
@severeme @mecfs

Show threadTom KindlonAug 13, 2024
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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
Show threadEmma UprichardAug 15, 2024

@tomkindlon @severeme @mecfs

Slower communication would go such a long way for me at times. 👏🏼👏🏼👏🏼