Countrygirl
Senior Member
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- UK
https://virology.ws/.../trial-by-error-yet-another-me.../...
https://virology.ws/.../trial-by-error-yet-another-me.../...
Dr David Tuller: Yet Another ME-Related Death
It has been a season of loss. Two weeks ago, I posted an obituary for the much-loved ME patient advocate Beth Mazur, who co-founded #MEAction and suffered with the disease for years. Last October, I posted tributes to Celine Corsius from her parents and brother; Celine died by euthanasia under Dutch law, also after many years of suffering. Two days ago–Saturday, January 27th–another Dutch patient, Lauren, died the same way. She was 28 years old.
Lauren chronicled her journey toward euthanasia on X (formerly known as Twitter) and on her blog, called “brain fog: my life & death with myalgic encephalomyelitis.” The blog is definitely worth reading (thanks to Google, I could read it in translation). In her final post, she outlined “some things I have learned in my life.” These were the first three:
*Don’t be afraid to be vulnerable.
*It’s completely okay to say that you don’t know something, that you haven’t studied something enough (yet) to form an opinion. Related : It’s also okay to admit when you’ve done something wrong. We are all human and we are constantly learning. Being able to admit mistakes is a beautiful quality that I always appreciate in people.
*Invest in a good mattress and pillow.
The rest of Lauren’s advice is a mix of smart, quirky, and heartfelt tidbits of wisdom and guide to life. This one made me laugh: “Cheerful socks with crazy prints help get the day off to a good start.” I plan to print out thee maxims and tape them to my office wall; they’re a pretty good guide to living life with compassion, honesty and grace. (I hope they read as well in the original Dutch.)
It has been a season of loss. Two weeks ago, I posted an obituary for the much-loved ME patient advocate Beth Mazur, who co-founded #MEAction and suffered with the disease for years. Last October, I posted tributes to Celine Corsius from her parents and brother; Celine died by euthanasia under Dutch law, also after many years of suffering. Two days ago–Saturday, January 27th–another Dutch patient, Lauren, died the same way. She was 28 years old.
Lauren chronicled her journey toward euthanasia on X (formerly known as Twitter) and on her blog, called “brain fog: my life & death with myalgic encephalomyelitis.” The blog is definitely worth reading (thanks to Google, I could read it in translation). In her final post, she outlined “some things I have learned in my life.” These were the first three:
Don’t be afraid to be vulnerable.
*It’s completely okay to say that you don’t know something, that you haven’t studied something enough (yet) to form an opinion. Related : It’s also okay to admit when you’ve done something wrong. We are all human and we are constantly learning. Being able to admit mistakes is a beautiful quality that I always appreciate in people.
*Invest in a good mattress and pillow.
The rest of Lauren’s advice is a mix of smart, quirky, and heartfelt tidbits of wisdom and guide to life. This one made me laugh: “Cheerful socks with crazy prints help get the day off to a good start.” I plan to print out thee maxims and tape them to my office wall; they’re a pretty good guide to living life with compassion, honesty and grace. (I hope they read as well in the original Dutch.)
https://virology.ws/.../trial-by-error-yet-another-me.../...
Dr David Tuller: Yet Another ME-Related Death
It has been a season of loss. Two weeks ago, I posted an obituary for the much-loved ME patient advocate Beth Mazur, who co-founded #MEAction and suffered with the disease for years. Last October, I posted tributes to Celine Corsius from her parents and brother; Celine died by euthanasia under Dutch law, also after many years of suffering. Two days ago–Saturday, January 27th–another Dutch patient, Lauren, died the same way. She was 28 years old.
Lauren chronicled her journey toward euthanasia on X (formerly known as Twitter) and on her blog, called “brain fog: my life & death with myalgic encephalomyelitis.” The blog is definitely worth reading (thanks to Google, I could read it in translation). In her final post, she outlined “some things I have learned in my life.” These were the first three:
*Don’t be afraid to be vulnerable.
*It’s completely okay to say that you don’t know something, that you haven’t studied something enough (yet) to form an opinion. Related : It’s also okay to admit when you’ve done something wrong. We are all human and we are constantly learning. Being able to admit mistakes is a beautiful quality that I always appreciate in people.
*Invest in a good mattress and pillow.
The rest of Lauren’s advice is a mix of smart, quirky, and heartfelt tidbits of wisdom and guide to life. This one made me laugh: “Cheerful socks with crazy prints help get the day off to a good start.” I plan to print out thee maxims and tape them to my office wall; they’re a pretty good guide to living life with compassion, honesty and grace. (I hope they read as well in the original Dutch.)
It has been a season of loss. Two weeks ago, I posted an obituary for the much-loved ME patient advocate Beth Mazur, who co-founded #MEAction and suffered with the disease for years. Last October, I posted tributes to Celine Corsius from her parents and brother; Celine died by euthanasia under Dutch law, also after many years of suffering. Two days ago–Saturday, January 27th–another Dutch patient, Lauren, died the same way. She was 28 years old.
Lauren chronicled her journey toward euthanasia on X (formerly known as Twitter) and on her blog, called “brain fog: my life & death with myalgic encephalomyelitis.” The blog is definitely worth reading (thanks to Google, I could read it in translation). In her final post, she outlined “some things I have learned in my life.” These were the first three:
Don’t be afraid to be vulnerable.
*It’s completely okay to say that you don’t know something, that you haven’t studied something enough (yet) to form an opinion. Related : It’s also okay to admit when you’ve done something wrong. We are all human and we are constantly learning. Being able to admit mistakes is a beautiful quality that I always appreciate in people.
*Invest in a good mattress and pillow.
The rest of Lauren’s advice is a mix of smart, quirky, and heartfelt tidbits of wisdom and guide to life. This one made me laugh: “Cheerful socks with crazy prints help get the day off to a good start.” I plan to print out thee maxims and tape them to my office wall; they’re a pretty good guide to living life with compassion, honesty and grace. (I hope they read as well in the original Dutch.)