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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
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"most patients research their own conditions. As physicians, we must accept that these patients may know more than we do about their condition."
https://doi.org/10.31486/toj.25.0074
Screenshot from latest Science for ME weekly update
#LongCovid #chronicillness #epatients #MEcfs
@pots @longcovid
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
Tom Kindlon