#pwme — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #pwme, aggregated by home.social.
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“Listening also means paying attention to the environment. Light, sound, touch, temperature, conversation, upright positioning, movement, even other people being in or near the room – all of it can be a physiologic stressor. The environment itself can determine whether a healthcare visit is accessible or harmful.”
#severeme #mecfs #pwme #cfs
@mecfs -
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“Living with ME has moved them from being defined by what they do toward being, in their words, more of a human being than a human doing” -
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“Living with ME has moved them from being defined by what they do toward being, in their words, more of a human being than a human doing” -
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“Living with ME has moved them from being defined by what they do toward being, in their words, more of a human being than a human doing” -
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“Living with ME has moved them from being defined by what they do toward being, in their words, more of a human being than a human doing” -
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“Living with ME has moved them from being defined by what they do toward being, in their words, more of a human being than a human doing” -
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“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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2/
“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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2/
“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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2/
“We are not incompetent. We have an illness. We are NOT our illness. Our job is to find out what we CAN do within our spoons allotment each day and avoid crashes from using too much energy.”
#spoonie #spoonies #spoonie #PEM #PwME #LongCovid
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Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260818-Support-Group-Recap.pdf
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260818-Support-Group-Recap.pdf
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260818-Support-Group-Recap.pdf
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260818-Support-Group-Recap.pdf
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260818-Support-Group-Recap.pdf
#MEcfs #LongCovid #PwME #CFS @mecfs @longcovid
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“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
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“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
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“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
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“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
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“care should be built around what a person’s body can actually tolerate, not around what we’ve been trained to expect a patient to tolerate.” -
I thought this was very good (as usual from Amy Mooney). Notice the audio version.
"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"
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I thought this was very good (as usual from Amy Mooney). Notice the audio version.
"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"
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I thought this was very good (as usual from Amy Mooney). Notice the audio version.
"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"
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I thought this was very good (as usual from Amy Mooney). Notice the audio version.
"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"
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I thought this was very good (as usual from Amy Mooney). Notice the audio version.
"Listen. Believe. Do No Harm: An occupational therapist’s guidance for caring well for people with severe ME/CFS"
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“They described how much more physically demanding his personal care was than they expected, the gaps in the service network with no one available in the middle of the night, and how they ran on adrenaline the entire month…they have fully crashed” -
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“They described how much more physically demanding his personal care was than they expected, the gaps in the service network with no one available in the middle of the night, and how they ran on adrenaline the entire month…they have fully crashed” -
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“They described how much more physically demanding his personal care was than they expected, the gaps in the service network with no one available in the middle of the night, and how they ran on adrenaline the entire month…they have fully crashed” -
4/
“They described how much more physically demanding his personal care was than they expected, the gaps in the service network with no one available in the middle of the night, and how they ran on adrenaline the entire month…they have fully crashed” -
4/
“They described how much more physically demanding his personal care was than they expected, the gaps in the service network with no one available in the middle of the night, and how they ran on adrenaline the entire month…they have fully crashed” -
3/
“I know it’s cliche, but we truly can’t pour from an empty cup.” -
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“I know it’s cliche, but we truly can’t pour from an empty cup.” -
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“I know it’s cliche, but we truly can’t pour from an empty cup.” -
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“I know it’s cliche, but we truly can’t pour from an empty cup.” -
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“I know it’s cliche, but we truly can’t pour from an empty cup.” -
"While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound. Their message to the group was to respect your own limits & stay tuned in to your body, because the cost of caregiving can be losing the very capacity to help"
From BHC August Event Recap: "Caretaking While Chronically Ill - Parenting or Caring for Family Members"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260804-Support-Group-Recap.pdf#PostExertionalMalaise #PEM @mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS1/
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"While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound. Their message to the group was to respect your own limits & stay tuned in to your body, because the cost of caregiving can be losing the very capacity to help"
From BHC August Event Recap: "Caretaking While Chronically Ill - Parenting or Caring for Family Members"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260804-Support-Group-Recap.pdf#PostExertionalMalaise #PEM @mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS1/
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"While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound. Their message to the group was to respect your own limits & stay tuned in to your body, because the cost of caregiving can be losing the very capacity to help"
From BHC August Event Recap: "Caretaking While Chronically Ill - Parenting or Caring for Family Members"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260804-Support-Group-Recap.pdf#PostExertionalMalaise #PEM @mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS1/
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"While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound. Their message to the group was to respect your own limits & stay tuned in to your body, because the cost of caregiving can be losing the very capacity to help"
From BHC August Event Recap: "Caretaking While Chronically Ill - Parenting or Caring for Family Members"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260804-Support-Group-Recap.pdf#PostExertionalMalaise #PEM @mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS1/
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"While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound. Their message to the group was to respect your own limits & stay tuned in to your body, because the cost of caregiving can be losing the very capacity to help"
From BHC August Event Recap: "Caretaking While Chronically Ill - Parenting or Caring for Family Members"
https://batemanhornecenter.org/wp-content/uploads/2026/08/20260804-Support-Group-Recap.pdf#PostExertionalMalaise #PEM @mecfs @longcovid
#MEcfs #LongCovid
#PwME #CFS1/
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Great to see these CDC ME/CFS events back again 🙂
Friday, September 18:
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference CallLink gives time in your time zone
Event includes a Question and Answer section
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Great to see these CDC ME/CFS events back again 🙂
Friday, September 18:
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference CallLink gives time in your time zone
Event includes a Question and Answer section
-
Great to see these CDC ME/CFS events back again 🙂
Friday, September 18:
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference CallLink gives time in your time zone
Event includes a Question and Answer section
-
Great to see these CDC ME/CFS events back again 🙂
Friday, September 18:
CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference CallLink gives time in your time zone
Event includes a Question and Answer section