Ody

That sounds so lovely!

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...

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...

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

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.

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

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

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.

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

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.

Welcome! Good to see you here!

If anybody is looking for @OdyO11, that's me. I decided to get rid of the random numbers.

When people say, "we have made it through worse before" Clint Smith all I hear is the wind slapping against the gravestones of those who did not make it, those who did not survive to see the confetti fall from the sky, those who did not live so watch the parade roll down the street. I have grown accustomed to a lifetime of aphorisms meant to assange my fears, pithy sayings meant to convey that everything ends up fine in the end. There is no solace in rearranging language to make a different word tell the same lie. Sometimes the moral arc of the universe does not bend in a direction that will comfort us, Sometimes in bends in ways we don't expect & there are people who fall off in the process. Please, dear reader, do not say I am hopeless, I believe there is a better future to fight for, 1 simply accept the possibility that I may not live to see it. Thave grown weary of telling myself lies that I might one day begin to believe. We are not all left standing after the war has ended. Some of us have become ghosts by the time the dust has settled.

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.

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

A cartoon of a white male doctor, a white male patient and a black female patient. The doctor holds his stethoscope to the male patient's chest, while holding another to the female patient's head.

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

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

Hey, anyone do anything for the near-paralytic episodes in #MECFS? I'm coming to realize this is a bit of a rarer one (or maybe only mod->pretty severe experience it?)

Difficulty initiating movement, worse if you're still awhile & try to move again. #NEISvoid, thoughts?

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.

I'm so sorry, Vlad. Sending love.

*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!

ALT text in the replies

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

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

Oh, that's sweet, thank you!

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...

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 rather quiet here lately, but I will check this account from time to time, so it's a way to stay in touch. #NEISVoid

@undercafeinated.bsky.social Yay, you made it! Welcome!

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

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.

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.

I’ve spent a lot of time this past year thinking about how some people react to injustice from a place of “that should never have happened to ME” while other people react with “that should never have happened to ANYONE” and how much the future depends on moving as many people as possible from 1 to 2