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mira-kama.bsky.social
@mira-kama.bsky.social
6 followers 30 following 1 posts
Things I did before I got M.E.
🎧🎤🎭💃🏻🪩🩰👯‍♀️🎾📚🚴‍♀️🥾⛰️🧶👾

Things I can do now. a little bit. sometimes
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mira-kama.bsky.social
Absolut!! Ganz ganz schlimm der Typ
August 6, 2025 at 8:46 AM
Reposted
tomkindlon.bsky.social
2/
"What needs to be done to improve services?

There were lots of suggestions from patients and carers on how services could be improved. Here are the 10 that stood out:"

www.pslhub.org/learn/improv...

#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
More home visits, for example for dentistry, blood tests, physio, eye tests, smear tests and consultations, scheduled at a time that works for the patient. More remote appointments. Longer appointments. The ability to submit written information in advance to minimise talking time and shorten appointments. Basic infection control measures in place, such as staff wearing high quality masks and appropriate ventilation in the building. Better designed GP surgeries and hospitals—for example, waiting areas available that are quiet and dimly lit and thought given to how people will get to the different departments they may need to attend. Joined up thinking and communication between departments treating co-morbid conditions—for example, endocrinology, neurology, rheumatology, gastroenterology, allergy clinic, etc Appropriate in-patient care for severe patients when hospital admission cannot be avoided, in a supportive caring environment, utilising evidence-based support and designed for those with heightened sensitivities. An advocacy service, where someone with extensive experience of ME can accompany and act as spokesperson to negotiate and navigate existing systems with the patient who is unable to advocate on their own behalf. All staff throughout the NHS to have sufficient training on Long Covid/ME (including receptionists, as well as primary and secondary healthcare professionals).
July 27, 2025 at 9:54 PM
Reposted
neurostingl.bsky.social
Also ja, man kann viele dieser Punkte sehr berechtigt machen.

Aber man sollte halt auch die richtigen Schlüsse daraus ziehen.

10/10
July 22, 2025 at 6:26 PM