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Hi there,
I'm a long term member, hardly ever poster. My apologies because I feel like this would already have been done somewhere on PR but I can't find it. I would like to gather 2-3 short Youtube clips of Ron Davis and/or Janet Dafoe discussing the impacts of ME/CFS to share with a friend who really wants to help/be in a relationship with me, but just doesn't understand the dangers I face from even simple exposure to light, sound, chemicals, food or infection.
I am particularly thinking of one I've seen where Ron and Janet really emphasise the importance of not entering PEM and another that the quote of Ron's is often requoted (but not referenced to the event) that "The good news is these patients don't die. The bad news is these patients don't die".
I've got upcoming surgery for internal jugular vein compression and need my friend to understand the danger I'm in as a moderately infected patient who has perforated two eardrums from a viral infection in the last month and now has a kidney infection two weeks prior to neurosurgery.
I have previously been severely affected for three years straight. No light/sound/company etc, although I was luckily able to eat. I live alone with limited disability support workers and am in a remote village. Good support from friends is essential.
Many thanks for reading this,
kelle
I'm a long term member, hardly ever poster. My apologies because I feel like this would already have been done somewhere on PR but I can't find it. I would like to gather 2-3 short Youtube clips of Ron Davis and/or Janet Dafoe discussing the impacts of ME/CFS to share with a friend who really wants to help/be in a relationship with me, but just doesn't understand the dangers I face from even simple exposure to light, sound, chemicals, food or infection.
I am particularly thinking of one I've seen where Ron and Janet really emphasise the importance of not entering PEM and another that the quote of Ron's is often requoted (but not referenced to the event) that "The good news is these patients don't die. The bad news is these patients don't die".
I've got upcoming surgery for internal jugular vein compression and need my friend to understand the danger I'm in as a moderately infected patient who has perforated two eardrums from a viral infection in the last month and now has a kidney infection two weeks prior to neurosurgery.
I have previously been severely affected for three years straight. No light/sound/company etc, although I was luckily able to eat. I live alone with limited disability support workers and am in a remote village. Good support from friends is essential.
Many thanks for reading this,
kelle
