NelliePledge
Senior Member (Voting Rights)
Translated in Google TranslateAustria:
From Bluesky:
I have the opportunity to speak about #MECFS tomorrow on behalf of the Tiroler Hospiz Gemeinschaft.Interest from the palliative care sector has grown in recent years, and there is certainly a lot we can learn from one another about caring for people who are severely affected!
Palliativforum: ME/CFS - Fokus auf schwere Verläufe - Tiroler Hospiz-Gemeinschaft
Interdisziplinäre Vortrags- und Diskussionsreihe online via Zoom. Die Veranstaltung findet in Kooperation mit der Ärztekammer für Tirol statt.www.hospiz-tirol.at
That was my 18th #MECFS talk this year, and there are still a few more to come.Many of my colleagues remain highly interested.Unfortunately, there are still ideological holdouts, even in key places.
ME/CFS is far more than just "chronic fatigue." In severe cases, those affected often lose almost all capacity for physical, cognitive, and social participation. Some become housebound or bedbound, experiencing a massive deterioration in their condition in response to light, sound, touch, or even the slightest activity; they require extensive support with daily living, personal care, and medical needs.
This presentation explores aspects relevant to palliative care practice: What does "post-exertional malaise" (PEM) look like in a clinical setting? How can severe and very severe cases be identified? What roles do symptom management, sensory shielding, nutrition, pain, sleep, dysautonomia, communication, and support for family members play? Furthermore, how can care be provided effectively when conventional rehabilitation approaches—which focus on increasing activity—are either ineffective or potentially harmful?
The goal is to provide a practical approach to a patient group that experiences profound suffering, yet often receives fragmented care—focusing on recognition, understanding, symptom relief, and dignified support.
The "Palliative Forum" is a series of events organized by the Tyrolean Hospice Association (Tiroler Hospiz-Gemeinschaft), designed to promote palliative care across various medical specialties and professional disciplines. Experts present on selected topics and use real-world case studies to spark discussion and exchange. Palliative care is a framework for providing high-quality support to seriously ill or dying individuals and their loved ones. Successful palliative care relies on effective communication between different professional groups and disciplines; the Palliative Forum aims to foster this communication and create spaces for it to flourish. Participants gain professional insights and practical guidance for navigating the challenging situations that arise when caring for people at the end of life—including topics that are easily overlooked in the day-to-day routine
[there isn’t a link to the presentation]