Ody
@odyody.bsky.social
Chronically ill. Medical research, better care for underresearched & rare conditions, disability rights & ethics. @OdyO11 at 🐦
Reposted by Ody
CN death of a beloved person with ME from the German ME community
@inaktiv.bsky.social💔
To honor her life, the family asks for donations to the ME/CFS research foundation.
English version included
#MEAwareness
www.betterplace.org/de/fundraisi...
@inaktiv.bsky.social💔
To honor her life, the family asks for donations to the ME/CFS research foundation.
English version included
#MEAwareness
www.betterplace.org/de/fundraisi...
Anstatt von Blumen - Spenden für die ME/CFS Forschung
JANA HUCK 2.8.1979 - 16.4.2025- English summary below -Nach 24 Jahren mit Schmerzen und diffusen Symptomen und 6 Jahre nach ihrer #MECFS Diagnose ist Jana (auf sozialen Medien auch Kerstin/@KWollec) i...
www.betterplace.org
April 24, 2025 at 6:35 PM
CN death of a beloved person with ME from the German ME community
@inaktiv.bsky.social💔
To honor her life, the family asks for donations to the ME/CFS research foundation.
English version included
#MEAwareness
www.betterplace.org/de/fundraisi...
@inaktiv.bsky.social💔
To honor her life, the family asks for donations to the ME/CFS research foundation.
English version included
#MEAwareness
www.betterplace.org/de/fundraisi...
Reposted by Ody
Lest we forget, “preexisting condition” is actually a legal term (not a medical one) that was coined by private insurance companies to charge people more or deny coverage, and it’s only thanks to its definition in the ACA that insurers have a little harder time doing those things to people
January 7, 2025 at 10:47 PM
Lest we forget, “preexisting condition” is actually a legal term (not a medical one) that was coined by private insurance companies to charge people more or deny coverage, and it’s only thanks to its definition in the ACA that insurers have a little harder time doing those things to people
Reposted by Ody
If you feel reassured whenever someone says death(s) occurred in person(s) “with preexisting conditions” you should know that more than half of American adults have “a preexisting condition” and many (maybe you) don’t even know they do. Or maybe you don’t have one, but 50% of the people you know do.
January 7, 2025 at 10:38 PM
If you feel reassured whenever someone says death(s) occurred in person(s) “with preexisting conditions” you should know that more than half of American adults have “a preexisting condition” and many (maybe you) don’t even know they do. Or maybe you don’t have one, but 50% of the people you know do.
Reposted by Ody
ME/CFS Scandal Explainer
www.youtube.com/watch?v=RiwX...
Description from Science for ME:
An excellent & informative video by forum member Adam pwme containing all the important details in the history of ME & what has become "the greatest medical scandal of the 21st-century"
#MEcfs #CFS
www.youtube.com/watch?v=RiwX...
Description from Science for ME:
An excellent & informative video by forum member Adam pwme containing all the important details in the history of ME & what has become "the greatest medical scandal of the 21st-century"
#MEcfs #CFS
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
www.youtube.com
November 24, 2024 at 1:47 PM
ME/CFS Scandal Explainer
www.youtube.com/watch?v=RiwX...
Description from Science for ME:
An excellent & informative video by forum member Adam pwme containing all the important details in the history of ME & what has become "the greatest medical scandal of the 21st-century"
#MEcfs #CFS
www.youtube.com/watch?v=RiwX...
Description from Science for ME:
An excellent & informative video by forum member Adam pwme containing all the important details in the history of ME & what has become "the greatest medical scandal of the 21st-century"
#MEcfs #CFS
Reposted by Ody
Everyone needs to understand what life with chronic illness(es) is like.
You need to understand what you're risking, for yourself and others (and what you're taking for granted), when you don't take precautions against covid.
Have empathy and #WearAMask, for the love of sanity.
You need to understand what you're risking, for yourself and others (and what you're taking for granted), when you don't take precautions against covid.
Have empathy and #WearAMask, for the love of sanity.
“Everyone dies someday! Get out and live!”
I’ve lost count of how many people have said this to me. People who assume I’m “choosing” to stay home in bed or who think fear of Covid is the only determining factor to my not socializing more.
This is NOT a choice 🧵/1
I’ve lost count of how many people have said this to me. People who assume I’m “choosing” to stay home in bed or who think fear of Covid is the only determining factor to my not socializing more.
This is NOT a choice 🧵/1
November 17, 2024 at 11:36 AM
Everyone needs to understand what life with chronic illness(es) is like.
You need to understand what you're risking, for yourself and others (and what you're taking for granted), when you don't take precautions against covid.
Have empathy and #WearAMask, for the love of sanity.
You need to understand what you're risking, for yourself and others (and what you're taking for granted), when you don't take precautions against covid.
Have empathy and #WearAMask, for the love of sanity.
Reposted by Ody
The warning signs have been there for years . I’ve said before that you can’t have a pandemic policy that encourages tossing all kinds of people away and NOT have that cruelty bleed into other parts of society.
We don’t compartmentalize that way. /13
We don’t compartmentalize that way. /13
November 16, 2024 at 9:39 PM
The warning signs have been there for years . I’ve said before that you can’t have a pandemic policy that encourages tossing all kinds of people away and NOT have that cruelty bleed into other parts of society.
We don’t compartmentalize that way. /13
We don’t compartmentalize that way. /13
Reposted by Ody
If you're about to post an image about important world event, ask yourself: could your info be important to disabled people? The answer is always yes.
Should you therefore use alt text so it's accessible to everyone everywhere? The answer is always yes.
Should you therefore use alt text so it's accessible to everyone everywhere? The answer is always yes.
November 16, 2024 at 8:48 PM
If you're about to post an image about important world event, ask yourself: could your info be important to disabled people? The answer is always yes.
Should you therefore use alt text so it's accessible to everyone everywhere? The answer is always yes.
Should you therefore use alt text so it's accessible to everyone everywhere? The answer is always yes.
If anybody is looking for @OdyO11, that's me. I decided to get rid of the random numbers.
November 16, 2024 at 9:45 PM
If anybody is looking for @OdyO11, that's me. I decided to get rid of the random numbers.
Reposted by Ody
This poem is beautiful and relates something I have felt a lot recently.
Like when I was told that 'our grandparents' survived this so we would.
But you could only believe that if they did all survive long enough to meet you and tell you about it.
Like when I was told that 'our grandparents' survived this so we would.
But you could only believe that if they did all survive long enough to meet you and tell you about it.
November 15, 2024 at 10:32 AM
This poem is beautiful and relates something I have felt a lot recently.
Like when I was told that 'our grandparents' survived this so we would.
But you could only believe that if they did all survive long enough to meet you and tell you about it.
Like when I was told that 'our grandparents' survived this so we would.
But you could only believe that if they did all survive long enough to meet you and tell you about it.
Reposted by Ody
Have you seen or created art (any form) depicting #MedicalGaslighting, other types of patient neglect and abuse, or #MedicalPTSD? Art helps people understand concepts and experiences they haven't been through, especially on an emotional level.
Post it below ⬇️, we can create a galley.
#NEISvoid
Post it below ⬇️, we can create a galley.
#NEISvoid
November 14, 2024 at 7:28 PM
Have you seen or created art (any form) depicting #MedicalGaslighting, other types of patient neglect and abuse, or #MedicalPTSD? Art helps people understand concepts and experiences they haven't been through, especially on an emotional level.
Post it below ⬇️, we can create a galley.
#NEISvoid
Post it below ⬇️, we can create a galley.
#NEISvoid
Reposted by Ody
MEDICAL GASLIGHTING IN ART
An ongoing thread🧵
Artwork from article: Women Are Calling Out Medical Gaslighting. "Women are twice as likely as men to be diagnosed with a mental illness when their symptoms are consistent with heart disease" www.nytimes.com/2022/03/28/w... #NEISvoid #MedicalGaslighting
An ongoing thread🧵
Artwork from article: Women Are Calling Out Medical Gaslighting. "Women are twice as likely as men to be diagnosed with a mental illness when their symptoms are consistent with heart disease" www.nytimes.com/2022/03/28/w... #NEISvoid #MedicalGaslighting
November 14, 2024 at 7:28 PM
MEDICAL GASLIGHTING IN ART
An ongoing thread🧵
Artwork from article: Women Are Calling Out Medical Gaslighting. "Women are twice as likely as men to be diagnosed with a mental illness when their symptoms are consistent with heart disease" www.nytimes.com/2022/03/28/w... #NEISvoid #MedicalGaslighting
An ongoing thread🧵
Artwork from article: Women Are Calling Out Medical Gaslighting. "Women are twice as likely as men to be diagnosed with a mental illness when their symptoms are consistent with heart disease" www.nytimes.com/2022/03/28/w... #NEISvoid #MedicalGaslighting
Reposted by Ody
As patients, we are sick and in pain. It should not be up to us to say exactly the right thing in exactly the right way so that a doctor will help us.
#NEISvoid #ChronicIllness #ChronicPain
#NEISvoid #ChronicIllness #ChronicPain
November 14, 2024 at 2:35 AM
As patients, we are sick and in pain. It should not be up to us to say exactly the right thing in exactly the right way so that a doctor will help us.
#NEISvoid #ChronicIllness #ChronicPain
#NEISvoid #ChronicIllness #ChronicPain
Reposted by Ody
Reposted by Ody
My word of the day (and personal recommendation) is ‘snerdling’ (18th century): nestling cosily beneath the covers and holding off the day a little longer.
Morning.
Morning.
November 16, 2024 at 9:05 AM
My word of the day (and personal recommendation) is ‘snerdling’ (18th century): nestling cosily beneath the covers and holding off the day a little longer.
Morning.
Morning.
Reposted by Ody
*taps mic*
Would really appreciate if folks from my X community who have found me here (a) let me know, and (b) share my Bluesky handle with others. To make this transition I need a community here!
Would really appreciate if folks from my X community who have found me here (a) let me know, and (b) share my Bluesky handle with others. To make this transition I need a community here!
November 12, 2024 at 12:22 PM
*taps mic*
Would really appreciate if folks from my X community who have found me here (a) let me know, and (b) share my Bluesky handle with others. To make this transition I need a community here!
Would really appreciate if folks from my X community who have found me here (a) let me know, and (b) share my Bluesky handle with others. To make this transition I need a community here!
ALT text in the replies
What life can become for the millions of people living with the medical condition myalgic encephalomyelitis (ME/CFS). When even the most basic everyday activities are out of reach. #pwME #MillionsMissing
November 16, 2024 at 12:11 PM
ALT text in the replies
Reposted by Ody
Hello Blue world! We have just arrived and are ready to bring you all things #EDS related you know and love just as we did on Twitter! (We are still there for now too.)
Bear with us as we set up house and get settled in, but expect the same great content as always!
#EhlersDanlosSyndrome #hEDS
Bear with us as we set up house and get settled in, but expect the same great content as always!
#EhlersDanlosSyndrome #hEDS
November 16, 2024 at 5:20 AM
Hello Blue world! We have just arrived and are ready to bring you all things #EDS related you know and love just as we did on Twitter! (We are still there for now too.)
Bear with us as we set up house and get settled in, but expect the same great content as always!
#EhlersDanlosSyndrome #hEDS
Bear with us as we set up house and get settled in, but expect the same great content as always!
#EhlersDanlosSyndrome #hEDS
Reposted by Ody
Behind the videos, this is what 70% of my time looks like right now (4 months micro vascular damage post covid + ME 20 years). It's really hard for us to grasp that we usually witness chronically ill people in their better moments which don't represent the rest of their reality. #pwME
November 15, 2024 at 9:01 PM
Behind the videos, this is what 70% of my time looks like right now (4 months micro vascular damage post covid + ME 20 years). It's really hard for us to grasp that we usually witness chronically ill people in their better moments which don't represent the rest of their reality. #pwME
Reposted by Ody
uh hello new followers!
I’ve been on hiatus for the last 2 years, so I’m assuming many of you may remember me from twitter but in case you don’t:
I collect stories about life with chronic illness & sometimes write about what I learn, like in this barely pre-covid TEDx talk about seeking diagnosis.
I’ve been on hiatus for the last 2 years, so I’m assuming many of you may remember me from twitter but in case you don’t:
I collect stories about life with chronic illness & sometimes write about what I learn, like in this barely pre-covid TEDx talk about seeking diagnosis.
Brianne’s TEDx Talk: Disease Begins Before Diagnosis - No End In Sight
Original Script: When I was 29 years old, I got so sick that I had to stop working. I had this intermittent burning pain in my legs, I woke up each morning with sore and swollen joints, and I had a vi...
noendinsight.co
November 12, 2024 at 5:20 PM
uh hello new followers!
I’ve been on hiatus for the last 2 years, so I’m assuming many of you may remember me from twitter but in case you don’t:
I collect stories about life with chronic illness & sometimes write about what I learn, like in this barely pre-covid TEDx talk about seeking diagnosis.
I’ve been on hiatus for the last 2 years, so I’m assuming many of you may remember me from twitter but in case you don’t:
I collect stories about life with chronic illness & sometimes write about what I learn, like in this barely pre-covid TEDx talk about seeking diagnosis.
@undercafeinated.bsky.social Yay, you made it! Welcome!
October 26, 2023 at 9:10 PM
@undercafeinated.bsky.social Yay, you made it! Welcome!
Reposted by Ody
a cool thing about being high risk in the pandemic is that people will tell you reassuringly that they mask in public all the time and then tell you casually about going out to eat in restaurants and then act shocked when you ask them to mask around you as if restaurants were not public spaces
October 15, 2023 at 9:27 PM
a cool thing about being high risk in the pandemic is that people will tell you reassuringly that they mask in public all the time and then tell you casually about going out to eat in restaurants and then act shocked when you ask them to mask around you as if restaurants were not public spaces
Reposted by Ody
yes, I would say I have Pandemic Denial Fatigue, thanks for asking.
it’s like how some people are “tired of the pandemic” except it’s the opposite of that and also saturated with rage.
it’s like how some people are “tired of the pandemic” except it’s the opposite of that and also saturated with rage.
October 18, 2023 at 6:31 PM
yes, I would say I have Pandemic Denial Fatigue, thanks for asking.
it’s like how some people are “tired of the pandemic” except it’s the opposite of that and also saturated with rage.
it’s like how some people are “tired of the pandemic” except it’s the opposite of that and also saturated with rage.
Reposted by Ody
I keep seeing the phrase ‘mask off’ and humbly offer ‘veil lifted’
None of what is happening is new, you just had the luxury of not looking.
None of what is happening is new, you just had the luxury of not looking.
October 19, 2023 at 2:06 PM
I keep seeing the phrase ‘mask off’ and humbly offer ‘veil lifted’
None of what is happening is new, you just had the luxury of not looking.
None of what is happening is new, you just had the luxury of not looking.