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#pwme — Public Fediverse posts

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

  1. 7/
    “No person with a serious disability should have to fight the very systems that are supposed to provide care and protection.”

    #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
    @mecfs

  2. Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Aug. 31 - Sept. 6.

    s4me.info/threads/news-in-brie

    @mecfs @longcovid

    #MEcfs #PwME #LongCovid #PwLC

  3. 6/
    “In countries with fewer resources, the problem may be limited access to care. But even in countries with well-developed healthcare and social systems, many people with ME continue to experience harm because outdated beliefs, lack of training and poor implementation of current knowledge persist. Resources alone are not enough if the system does not recognise the disease and protect the patient.”

    #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

  4. 3/

    “rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”

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

  5. 3/

    “rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”

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

  6. 3/

    “rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”

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

  7. 3/

    “rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”

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

  8. 3/

    “rest is rarely respected as the critical & often sole medical intervention it is. For this reason, even those who mean us no harm may actively encourage us to push through dangerous symptoms, believing our mindset to be, at least in part, playing a role.”

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

  9. 2/

    Headings (contd):

    4. The Brick Wall of Welfare
    5. The Social Toll - Relentless Interrogation
    6. Worn Out Carers
    7. The Gagged Target of Vitriol
    8. Conclusion

    #PwME #LongCovid #MyalgicEncephalomyelitis #MEcfs

    @mecfs @longcovid

  10. 2/

    Headings (contd):

    4. The Brick Wall of Welfare
    5. The Social Toll - Relentless Interrogation
    6. Worn Out Carers
    7. The Gagged Target of Vitriol
    8. Conclusion

    #PwME #LongCovid #MyalgicEncephalomyelitis #MEcfs

    @mecfs @longcovid

  11. 2/

    Headings (contd):

    4. The Brick Wall of Welfare
    5. The Social Toll - Relentless Interrogation
    6. Worn Out Carers
    7. The Gagged Target of Vitriol
    8. Conclusion

    #PwME #LongCovid #MyalgicEncephalomyelitis #MEcfs

    @mecfs @longcovid

  12. 2/

    Headings (contd):

    4. The Brick Wall of Welfare
    5. The Social Toll - Relentless Interrogation
    6. Worn Out Carers
    7. The Gagged Target of Vitriol
    8. Conclusion

    #PwME #LongCovid #MyalgicEncephalomyelitis #MEcfs

    @mecfs @longcovid

  13. 2/

    Headings (contd):

    4. The Brick Wall of Welfare
    5. The Social Toll - Relentless Interrogation
    6. Worn Out Carers
    7. The Gagged Target of Vitriol
    8. Conclusion

    #PwME #LongCovid #MyalgicEncephalomyelitis #MEcfs

    @mecfs @longcovid

  14. 5/

    “Research is essential, and we need investment in it. But recognition, education, appropriate accommodations and respectful treatment are measures that can be implemented now. They can prevent additional suffering while science continues to advance.”

    #MEcfs #PwME #MyalgicEncephalomyelitis #CFS

    @mecfs

  15. Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)

    pollypauthor.substack.com/p/th

    Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed

    Headings:
    1. The Diagnostic Battle
    2. “It’s A Trap!” - Diagnoses of Exclusion
    3. Unpaid NHS Admin Duties

    (Continues)

    @mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
    #mcas

    1/

  16. Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)

    pollypauthor.substack.com/p/th

    Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed

    Headings:
    1. The Diagnostic Battle
    2. “It’s A Trap!” - Diagnoses of Exclusion
    3. Unpaid NHS Admin Duties

    (Continues)

    @mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
    #mcas

    1/

  17. Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)

    pollypauthor.substack.com/p/th

    Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed

    Headings:
    1. The Diagnostic Battle
    2. “It’s A Trap!” - Diagnoses of Exclusion
    3. Unpaid NHS Admin Duties

    (Continues)

    @mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
    #mcas

    1/

  18. Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)

    pollypauthor.substack.com/p/th

    Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed

    Headings:
    1. The Diagnostic Battle
    2. “It’s A Trap!” - Diagnoses of Exclusion
    3. Unpaid NHS Admin Duties

    (Continues)

    @mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
    #mcas

    1/

  19. Focuses on ME and other related conditions (dysautonomia, MCAS & long COVID)

    pollypauthor.substack.com/p/th

    Author is in the UK and discusses the situation in the UK but many people in other countries will be able to resonate with what is discussed

    Headings:
    1. The Diagnostic Battle
    2. “It’s A Trap!” - Diagnoses of Exclusion
    3. Unpaid NHS Admin Duties

    (Continues)

    @mecfs @longcovid #mecfs #pwme #MyalgicEncephalomyelitis #longcovid #cfs
    #mcas

    1/

  20. 🧵
    ME Research UK

    We are deeply appreciative that the community has shared their experiences with us. Those detailing the devastation of cognitive dysfunction in ME/CFS are both moving and profoundly informative.

    meresearch.org.uk/the-experien

    #MEcfs #PwME #CFS #BrainFog @mecfs

    1/

  21. ME Research UK:

    ME Research UK's August e-newsletter was sent to inboxes throughout the world earlier today.

    Not on our list?
    Sign up - tinyurl.com/5n94u488 or read online - tinyurl.com/4n4rnpmu

    #mecfs #cfs #pwme #MyalgicEncephalomyelitis @mecfs

  22. 4/
    “And this leads to the third harm: the physical damage caused by the system’s response to the illness.”

    #PwME #MyalgicEncephalomyelitis #MEcfs
    @mecfs

  23. 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

  24. 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

  25. 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

  26. 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

  27. 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

  28. 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

  29. 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

  30. 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

  31. 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

  32. 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

  33. 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

  34. 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

  35. 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

  36. ‪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

  37. ‪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

  38. ‪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

  39. ‪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

  40. ‪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

  41. 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/

  42. 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/

  43. 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/

  44. 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/

  45. 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/

  46. 4/

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

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  47. 4/

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

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  48. 4/

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

    #SevereME #PwME #CFS #MEcfs
    @mecfs