#chronic fatigue disorder

[enbycarp]

Oh, speaking of tired, do i know any me/cfd bitches? I'm wondering, when you experience dizziness, is it worse during periods when you're particularly exhausted? Or is it all the time? Or does it just come and go randomly?

[purrfurnax]

[scottguy]

Doctors have always been quick to write off what they don't understand. They take it personally because modern medicine (which is ONLY) about 125 years old) made them all feel like Gods. They just won't admit they don't know, so they blame the sick patient.

Arrogance is just baked into the system as well as medical schools - because medicine is hard to learn, selects those with good cortexes but little emotional intelligence. (I find the two are often at odds, you get one or the other.)

A lot of doctors can tell you the treatment, but understanding that *compassion* is part of the process of delivering care is totally alien to those ostensibly "smart" people.

Here, in the west, we "treat" and usually just the affected part. We DON'T care for the entire person, especially patients' emotional needs and questions, which are just routine to the doctor. Doctors can't be bothered to take the time to explain, especially in our American system, which is about maximizing profit and seeing 40 patients a day. (Which leaves precious little time for any meaningful interaction.)

Not all doctors are like this, but even the well-intentioned get pressured by our ridiculous for-profit (for shareholders) system.

In 2016, years before long COVID was a thing, the US National Institutes of Health, the largest single public funder of medical research in the world, launched a study into a long-neglected and puzzling condition: chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis, or ME/CFS. Eight years later, the results of that study are finally out. In one of the most thorough investigations to date, researchers took a deep dive into a small group of 17 people who developed ME/CFS after an infection and found distinct biological differences compared to 21 healthy controls. "Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected," neurologist Avindra Nath, lead researcher of the study and clinical director of NIH's National Institute of Neurological Disorders and Stroke (NINDS), said in an interview with JAMA. For decades, many doctors had dismissed ME/CFS as a psychosomatic condition that was 'all in patients' heads'. Now there is little doubt: a host of biological changes underpin ME/CFS.

Continue Reading.

[asexual-amanita]

Unpopular opinion

I don’t want a self driving wheelchair that can go up stairs. I want ramps elevators, and curb cuts.

I don’t want a solution in 20 years, I want it now. I wanna be able to go to the mall with my friends and not have to worry about stairs. I want to go the movies and actually chose where I sit. I want to go to a park without having to parkour my way through cracked pavement and curb drops.

I want accessibility and I want it today.

[love-me-love-my-weirdness]

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

[minimallycreative]

autism "i need my routine and the routine was already ignored yesterday" vs chronic pain/disability "good fucking luck dude. you got no bones today"

[tumble-tv]

"kill them with kindness" WRONG run them over in your wheelchair 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽 👨‍🦼 👩‍🦼 🧑‍🦼 👨‍🦽 👩‍🦽 🧑‍🦽

[chronic-melon]

Reblog if you understand that disability is not a monolith and two people with the same disability do not have identical experiences ✨

[a-sassy-bench]

breaking news disabled people aren't using their disabilities as an excuse because it turns out it isn't an excuse it's a state of fucking existence

and existence is everywhere all the time no matter what even if you wish it wasn't

.

[chronicsymptomsyndrome]

sometimes when chronically ill/disabled/neurodivergent people say “I can’t do this thing” they really mean “I can technically do this thing I guess, but not without pretty significant repercussions” and I really need more fully-abled people to understand the validity of that

[vm-sys]

shout out to clumsy people.

shout out to people with coordination issues.

shout out to people with dyspraxia.

shout out to people with apraxia.

shout out to people with muscle weakness.

shout out to people with paresis.

shout out to people with paralysis.

shout out to people with arthritis n/or joint deformities.

shout out to people with chronic pain whose pain makes it hard to control their movements.

shout out to people with chronic fatigue whose fatigue makes them hard to control their movements.

shout out to people with balance issues.

shout out to people with other conditions that make hard to control body n/or movements.

shout out to people who are undiagnosed n struggling with control movements.

it's not your fault. it's not your carelessness. you deserve support n accommodations. you shouldn't be judged or mocked. you deserve respect. your struggles deserve respect.

[love-me-love-my-weirdness]

Sometimes I don’t think people get that chronic means chronic. It means forever. I’m going to be stuck with this for the rest of my life and I’ve had to learn to make peace with that myself. Telling me ‘hope you get better soon’ and ‘it won’t always be like this’ is pointless because you’ve completely ignored the definition of chronic illness.

[panicismydefaultstate]

Just in case anyone else needed to hear this today-

Your health is not your fault. You didn’t do anything to “deserve” this. And you are right, it isn’t fair. You are allowed to feel upset, hurt, angry and jealous that your health, body or mind disables you.

It’s not fair, and that sucks. You are allowed to scream about that as much as you need to.

[tumble-tv]

Friendly reminder that all emergency pull cords must touch the floor. This does not mean tied up or resting on something or a foot off of the floor. In the United States, the cord must be within 2-6 inches off of the floor, but the best length is 2 inches from the floor.

These pull cords are also much easier to see if they are red and are less likely to be pulled out of curiosity when they are red.

[chronic-melon]

If you don’t experience the pain that I do every day, you don’t get to judge me.

Not my food habits.

Not my hygiene.

Not my productivity.

Not the clothes I wear.

Not my outlook on life.

Not my goals.

Not my medications.

Not my weight.

Not your body!

You don’t get to decide if I have a moral failing because you think you’re better than me and you could handle it better. Please, try to experience one day of pain like mine. Try to experience one week.

When you’re faced with the choice of not eating and ordering fast food, it’s an easy choice. You choose to eat.

When you’re faced with passing out or wiping yourself down with baby wipes, it’s an easy choice. You choose to be safe.

I am sick of the lectures about what’s good for me, the dangers of seed oils, how medication is propaganda from big pharma, how I’m just lazy and I can take a damn shower.

IT’S NOT YOUR BODY, so get out of my business.

[twentysevendreamer]

The thing is, no one cares how hard you’re trying. They just want you to pass their expectations. Anything less means you’re lazy. What a brutal world we’re living in right now.