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#me-cfs — Public Fediverse posts

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

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  1. 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

  2. 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

  3. 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

  4. 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/

  5. 🧵
    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/

  6. 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

  7. 6/

    There’s an article in the Sunday Times on this today: “ME patients are told nothing’s wrong, my fatigue theory shows there is”
    #mecfs
    @mecfs @longcovid

  8. 4/
    “And this leads to the third harm: the physical damage caused by the system’s response to the illness.”

    #PwME #MyalgicEncephalomyelitis #MEcfs
    @mecfs

  9. RE: social.saarland/@achim/1172207

    Fühle dich von ❤ gedrückt, liebe @afelia ! Ich wünsche dir, dass dein Zustand sich bald bessert 🌻
    Und ich danke dir für deine wie immer wahren und wohl gewählten Worte. Die Frage nach dem Wert ist für mich in einem Crash immer noch fast unerträglich. Wortmeldungen wie deine sind da bisweilen sehr wertvoll und tröstend. Danke, dass du sichtbar bleibst! 🫂
    #mecfs #chronischkrank #chronicillness

  10. "Burnout" as an insult is an example of abuse culture — societal DARVO that we were conditioned to accept without question.

    #AbuseCulture #MECFS

  11. 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

  12. 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

  13. 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

  14. 5/
    “Participant shared that constantly calculating whether their body can handle an activity had made them feel “incompetent”, until they recognized that this calculation is not incompetence but triage, a precise management of a limited resource and a skill most healthy people never have to build...”

    #mecfs #LongCovid
    @mecfs @longcovid

  15. 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

  16. 4/
    “It can be helpful to explore abandoning (or at least curbing) an achievement-orientation to life (i.e., life is about a checklist of completed accomplishments) and instead adopting an experience-orientation to life (i.e., life is about having all kinds of varied pleasant and difficult experiences that we can use for various things like connection or growth).”

    #chronicillness #spoonie #mecfs #longcovid
    @mecfs @longcovid

  17. 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/

  18. 4/

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

    #SevereME #PwME #CFS #MEcfs
    @mecfs

  19. 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

  20. ‪2/‬
    ‪Description from an ME caregiver:‬

    ‪“Amy Mooney (parent, caregiver, occupational therapist) has excellent advice for healthcare providers regarding people with severe/very severe ME”‬

    ‪#PwME #MyalgicEncephalomyelitis@mecfs #mecfs

  21. 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

  22. 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

  23. 3/
    “I know it’s cliche, but we truly can’t pour from an empty cup.”

    #MEcfs #PwME #CFS #LongCovid

    @mecfs @longcovid

  24. 2/
    “Does anyone else think of the protocol when flying, ‘secure your own oxygen mask first’? Remembering it sometimes helps me give myself permission to look after my own needs first before helping others.”

    #mecfs #longcovid
    @mecfs @longcovid

  25. "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/