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"The point is not that science doesn’t matter (it does, very much) but that the path from lived experience to research to care can be bidirectional."
#PostCovid #PwME #PostCovid19 #CFS #epatient #epatients #chronicillness
@mecfs @longcovid @pots
Using co-design methods to develop new personalised support for people living with #LongCovid: The ‘LISTEN’ intervention
https://onlinelibrary.wiley.com/doi/10.1111/hex.14093
"The lived experiences of people with #LC, in relation to their condition and their experiences of healthcare services have provided a primary source of evidence”
#epatient #epatients #expertpatient #expertpatients @chronicillness @spoonies #chronicillness #spoonie #chronicdisease @longcovid
Vicky Phelan broke the boundaries of patient advocacy. A fearless #ePatient #RIP
Without Vicky Phelan people may never have learned of the CervicalCheck controversy.
Attached: 1 image Devastating news that #VickyPhelan has died. Despite her illness, she became one of the most outspoken patient advocates, highlighting medical errors with dignity and passion. We owe her so much. A lovely person too - deepest condolences to her family. https://www.rte.ie/news/2022/1114/1335986-vicky-phelan-ireland/
Osna.FM
Tom Kindlon
Dr. M. Haegele
bacigalupe