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#pwme — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #pwme, aggregated by home.social.

  1. 3/
    “But the second harm comes from disbelief and invalidation. Instead of receiving understanding and support, many of us encounter questioning, doubt and dismissal. This is not only something that happened in the past. It continues today. My symptoms are still questioned, my limitations are still doubted, and I still have to justify that I am genuinely ill.”

    #mecfs #pwme #cfs
    @mecfs

  2. 2/
    “The first harm is the disease itself: the biological damage caused by a serious, disabling illness. This is the harm that research is trying to address. We urgently need better diagnosis, effective treatments and, ultimately, a cure.”

    #MyalgicEncephalomyelitis #PwME
    #mecfs
    @mecfs

  3. 6/

    “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

  4. 6/

    “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

  5. 6/

    “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

  6. 6/

    “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

  7. 6/

    “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

  8. 5/
    “Documentation is part of that advocacy: clearly recording functional limitations, symptom exacerbation, environmental barriers, and necessary supports can make the difference in whether a patient can receive equipment, home-based services, disability benefits, or appropriate care.”

    #mecfs #pwme #cfs
    @mecfs

  9. 3/
    “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”

    #PwME #MyalgicE
    @mecfs @longcovid

  10. 3/
    “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”

    #PwME #MyalgicE
    @mecfs @longcovid

  11. 3/
    “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”

    #PwME #MyalgicE
    @mecfs @longcovid

  12. 3/
    “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”

    #PwME #MyalgicE
    @mecfs @longcovid

  13. 3/
    “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”

    #PwME #MyalgicE
    @mecfs @longcovid

  14. ‪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

    @mecfs @longcovid

  15. ‪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

    @mecfs @longcovid

  16. ‪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

    @mecfs @longcovid

  17. ‪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

    @mecfs @longcovid

  18. ‪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

    @mecfs @longcovid

  19. Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"

    batemanhornecenter.org/wp-cont

    #MEcfs #LongCovid #PwME #CFS @mecfs @longcovid

    1/

  20. Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"

    batemanhornecenter.org/wp-cont

    #MEcfs #LongCovid #PwME #CFS @mecfs @longcovid

    1/

  21. Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"

    batemanhornecenter.org/wp-cont

    #MEcfs #LongCovid #PwME #CFS @mecfs @longcovid

    1/

  22. Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"

    batemanhornecenter.org/wp-cont

    #MEcfs #LongCovid #PwME #CFS @mecfs @longcovid

    1/

  23. Recap of "Support Group: Dealing with the Harsh Inner Critic - Developing Selfcompassion for Resilience and Strength Amidst Disease"

    batemanhornecenter.org/wp-cont

    #MEcfs #LongCovid #PwME #CFS @mecfs @longcovid

    1/

  24. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  25. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  26. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  27. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  28. 4/

    Bateman Horne Center on
    “Listen. Believe. Do No Harm.”

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  29. 3/
    “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.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

  30. 3/
    “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.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

  31. 3/
    “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.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

  32. 3/
    “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.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

  33. 3/
    “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.”

    #SevereME #MEcfs #PwME #CFS #SevereCFS

    @mecfs

  34. 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"

    batemanhornecenter.org/listen_

    #SevereME #MEcfs #PwME #CFS #SevereMECFS @mecfs

  35. 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"

    batemanhornecenter.org/listen_

    #SevereME #MEcfs #PwME #CFS #SevereMECFS @mecfs

  36. 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"

    batemanhornecenter.org/listen_

    #SevereME #MEcfs #PwME #CFS #SevereMECFS @mecfs

  37. 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"

    batemanhornecenter.org/listen_

    #SevereME #MEcfs #PwME #CFS #SevereMECFS @mecfs

  38. 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"

    batemanhornecenter.org/listen_

    #SevereME #MEcfs #PwME #CFS #SevereMECFS @mecfs

  39. 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”

    #MEcfs #LongCovid #PwME #CFS

    @mecfs @longcovid

  40. 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”

    #MEcfs #LongCovid #PwME #CFS

    @mecfs @longcovid

  41. 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”

    #MEcfs #LongCovid #PwME #CFS

    @mecfs @longcovid

  42. 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”

    #MEcfs #LongCovid #PwME #CFS

    @mecfs @longcovid

  43. 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”

    #MEcfs #LongCovid #PwME #CFS

    @mecfs @longcovid

  44. 3/
    “I know it’s cliche, but we truly can’t pour from an empty cup.”

    #MEcfs #PwME #CFS #LongCovid

    @mecfs @longcovid

  45. 3/
    “I know it’s cliche, but we truly can’t pour from an empty cup.”

    #MEcfs #PwME #CFS #LongCovid

    @mecfs @longcovid

  46. 3/
    “I know it’s cliche, but we truly can’t pour from an empty cup.”

    #MEcfs #PwME #CFS #LongCovid

    @mecfs @longcovid

  47. 3/
    “I know it’s cliche, but we truly can’t pour from an empty cup.”

    #MEcfs #PwME #CFS #LongCovid

    @mecfs @longcovid

  48. 3/
    “I know it’s cliche, but we truly can’t pour from an empty cup.”

    #MEcfs #PwME #CFS #LongCovid

    @mecfs @longcovid

  49. "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"
    batemanhornecenter.org/wp-cont

    #PostExertionalMalaise #PEM @mecfs @longcovid
    #MEcfs #LongCovid
    #PwME #CFS

    1/

  50. "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"
    batemanhornecenter.org/wp-cont

    #PostExertionalMalaise #PEM @mecfs @longcovid
    #MEcfs #LongCovid
    #PwME #CFS

    1/