#cf.

[capricorn-0mnikorn]

Full Transcript at the link; 3-minute listen.

Quote:

By taking biopsies from long COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.

Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy.

"We saw this immediately and it's very profound," says Braeden Charlton, one of the study's authors at Vrije University in Amsterdam.

The tissue samples from long COVID patients also revealed severe muscle damage, a disturbed immune response, and a buildup of microclots.

"This is a very real disease," says Charlton. "We see this at basically every parameter that we measure."

#NPR morning edition #long covid #me/cfs #health news

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizonal, but I need more horizonal. I need to be absorbed by the floor. I think that would fix me

#My orthostatic tolerance is currently zero #POTS #postural orthostatic tachycardia syndrome #me/cfs #fibromyalgia #chronic illness #disability #migraine #gastroparesis #chronic pain #chronic fatigue #chronic fatigue syndrome #myalgic encephalomyelitis #spoonie #mast cell activation syndrome #MCAS #dysautonomia #chronic migraine #joint pain #hEDS #ehlers danlos syndrome #hypermobility #hypermobile ehlers danlos #interstitial cystitis

[hellyeahsickaf]

I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)

It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:

How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.

Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."

How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills

How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud

Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides

Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance

Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!

There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.

Please boost!

#signal boost #please reblog #chronic pain #chronic illness #disability #fibromyalgia #cfs #chronic fаtiguе ѕуndrоmе #actually disabled #spoonie #me/cfs #cfs/me #long covid #important #invisible disability #ehlers danlos syndrome #lyme disease #chronically ill #cpunk #cripplepunk

[anxious-and-in-pain]

it’s okay to do things that make your symptoms worse (as long as you’ll stay safe)

every once in a while you need to eat something yummy. or go on a walk. or a trip to the zoo. take a hot shower. cry your eyes out. dance. listen to music. draw for way to long. write. laugh. sit in a cafe with a friend. paint your nails. dye your hair. go on a run. pet a cat

sometimes you need to do things that are cathartic or make yourself feel alive. sometimes you need the reminder of why you’re fighting so hard to stay alive

this is your reminder that just because it makes your symptoms worse, it isn’t always the wrong thing to do. there can be value in these actions

#chronically ill #chronic illness #chronic pain #fibromyalgia #spoonie #fibro #ibd #central sensitization #disabled #myposts #chronic fatigue #cat #disability #chronic fatigue syndrome #actually chronically ill #cfs #cfs/me #food mention

[violet-phoenix-nebula]

When someone has a chronic illness or is disabled and can't work, they say a few common things.

It must be nice to sit around all day/sleep all day.

I wish I could sit around all day and not work.

I wish I could sleep all the time.

They don't want to sleep as much as we have to. They'd feel sick and sluggish.

They don't want to sit around the house all day not doing anything. They'd be bored out of their fucking skull.

It's so unbelievably fucking frustrating, but there's a fundamental lack of understanding.

They liken our lives to a vacation, imagining that it's fun and relaxing and we can do whatever fun things we want to all the time.

In reality, it should be likened to an extended hospital stay. You can't do anything and you feel like shit.

#disability #disabilities #invisible disability #chronic disability #disabled #physically disabled #chronic fatigue syndrome #chronic illness #chronic pain #chronic fatigue #chronically ill #cfs #cfs/me #mecfs #myalgic encephalomyelitis

[railmerosalie]

I find it so funny when ppl say that Katniss has no personality, she's so cute and funny! Like do you not remember when she...

1. Thought Finnick was making out with Peetas corpse and was like "damn didn't know he was fruity like that"

2. When Gale confessed his love for her and she was STRIAGHT up like "yeah I know" 💀

3. Saw Peeta had been crying after the first reaping and immediately thinks "damn he's good, playing the weak sympathy card". Like girl he thinks he's gonna die! He's gonna die!

4. Katniss and Finnick wearing the green face cream in CF and scaring the fuck outta Peeta on the beach

5. Just her and Haymitch, especially the first book

6. "I decided to go ahead and like Boggs" - thanks for letting us know queen 👑

7. In MJ when they're trying to film the propos, and she's just horrible at it

8. In the first book when she's trying to drain the pus out of Peetas leg and she just so goddmaned grossed out

9. Saw the cupcakes at the Capitol party and immediately thought that Peeta would love the frosting details

10. In MJ when Gale and Peeta are talking about Katniss choosing one of them, she's just like "gonna leave you two bums here, don't need this shit"

11. Everytime she was unaware of people flirting with her or just being nice. She always think there's some hidden motive... like girl they're your family and friends, they just like you as a person

12. "Nobody needs me" "I do, I need you". Katniss finally admitting her love for Peeta and realises that she can't live without him!! It's such an important part of her growth towards Peeta and no one talks about it!! The girl how has survived everything finally needs not just something, but SOMEONE. And it's HIM (I'm so normal about this I swear)

13. Sassying buttercup at every turn

14. She has the same vibe as goop from Meet The Robinsons (especially with Madge). "Hey Katniss, wanna eat lunch together?" "Hey Katniss, wanna go for a walk into town later"

She's there like:

#thg #the hunger games #the hunger games cf #katniss my beloved #katniss everdeen #peeta supremacy #peeta mellark #haymitch abernathy #effie trinket #thg mockingjay #mockingjay #catching fire #cf #mj

[araekniarchive]

@mnvart // Kaveh Akbar, 'Calling A Wolf A Wolf' // @PinkRangerLB on Twitter // @kosmogrl // @devinsturk, '15 Proverbs for the Fellow Chronically Ill' // Jasmine Deporta // Anaïs Nin, House of Incest // the gentle wisdom uquiz by @inkskinned // Rora Blue, 'Sweet Dreams' // Hala Alyan, Dear Layal

#web weaving #webs #mine #theme: sickness #theme: sleep #theme: this is me trying #theme: i have no choice but to live with this #so. i havent made any webs in a while #ive been working full time and really struggling; turns out my thyroid has become unbalanced again #in addition to the cfs which has been actively ruining my life for eight years now #and this is how i feel about it. basically. #tw chronic illness #@mnvart #minava #kaveh akbar #twitter #@kosmogrl #@devinsturk #jasmine deporta #anais nin #@inkskinned #rora blue #hala alyan #chronic fatigue syndrome #myalgic encephalomyelitis

[myalgicencephalomyelitiscfstom]

Press release for this Canadian study [Metabolomic and immune alterations in long COVID patients with Chronic Fatigue Syndrome]:

“We do not actually believe that long COVID is a separate new disease,” explains rheumatologist and clinical immunologist Jan Willem Cohen Tervaert, professor of medicine, who is an expert in fatigue associated with rheumatic illnesses.

“Some symptoms — such as the loss of taste and chest pain — are very specific for COVID, but we see a common pathway with ME/CFS, which leads to the same fatigue, brain fog, post-exertional malaise, widespread pain and non-refreshing sleep,” he says.

#long COVID #chronic fatigue syndrome #myalgic encephalomyelitis #mecfs #me/cfs

[pedro-pascal]

The Hunger Games: Catching Fire (2013) + LETTERBOXD REVIEWS

#the hunger games #catching fire #the hunger games: catching fire #thgedit #filmedit #chewieblog #userstream #dailyflicks #xuseralex #zanisummers #userlet #usersameera #userhella #tuserdana #useraurore #tusererika #userzil #* #pls ignore the coloring i have not opened photoshop in 3 weeks #anyway my cinema did a THG marathon and CF is the best out of the lot by MILES

[chronicallycouchbound]

I’m allowed to be lazy. Disabled or not. Laziness isn’t an inherently bad thing y’all just too caught up in hyper capitalist hustle culture to care. I don’t owe you productivity. I’m allowed to rest.

My rest is radical.

#chronically couchbound #disability #disabled #cripple punk #cripplepunk #disabled pride #disability pride #lazy #i'm lazy #im lazy #chronic fаtiguе ѕуndrоmе #chronic illness #chronically chill #chronic disability #chronically ill #chronic fatigue #cfs (chronic fatigue syndrome) #me cfs #cfs/me #spoonie #spoonie community #spoonies #low spoons #radical rest #tired #rest #this shit is exhausting #leftist #anti capitalism #abolitionist

[unveilandresist]

by January 10th 1 in 3 people will have had this wave of covid. covid causes long term damage with each infection and wears down your immunity. you do not want this. there is no cure for long covid or me/cfs and there is a significant chance (last I checked I think it was 1/5 infections) of getting long covid that increases with each infection. please protect yourself and your loved ones by wearing a mask. variants have become more transmissible so a n95 or kn95 is the minimum protection to keep yourself reasonably safe(r) from getting covid.

it is important to understand often viruses do not simply clear up and go away. like chicken pox and shingles or what we now think of as polio that is actually post polio syndrome. polio symptoms were mild and 75% of cases are asymptomatic. we do not yet see the full scope of what this virus will do over our lifetimes. as someone who had my entire life derailed by me/cfs after having mono, (almost 10 years ago! it hasn't gotten better!) we have to take pathogens more seriously if we care about ourselves and our communities.

I'm willing and open to talk with people who want to understand better what covid does to our bodies and how we can best practice community care and also harm reduction if we're stuck in unsafe situations at home or work (certain mouthwashes and nasal sprays can help).

if you're watching what's happening in Palestine and live in the US, the government doesn't care about your life either. They lied about palestine and they lied about covid too. It is not just a cold.

#covid #solidarity #mutual aid #social justice #chronic illness #disability #me/cfs #chronic fatigue syndrome #mask up

[normal-with-adhd-is-a-joke]

What people don't understand about "no excess physical activity/exercise" is that everything is physical activity.

I told the people at orthopedic urgent care that I can't do physical therapy because my condition doesn't allow for exercise. They gave me a list of things I could do at home. They were exercises. I was frustrated at first, but it made me realize how able bodied people can't conceptualize "no exercise" at all.

Walking down two hallways to get to my college class is exercise. Cooking and baking are exercise. Getting something from downstairs is exercise. Even typing is exercise. Each one of those things chips away at my ability to do simple things, like sit upright or speak or even just stay awake. When someone says they can't exercise for medical reasons, that means they can't, and pushing them to do physical activity because it "doesn't take that much energy" is dangerous. Everything takes energy.

#cfs #chronic fatigue syndrome #cpunk #cripple punk

[eesirachs]

nativity scenes fold god gently into a crib with hay. but ancient near eastern birth did not take fiber as materiality: it took mud, clay, bricks. israelite women would give birth propped up on a mud-brick, a specially-made thing, almost a sculpture, both shaped by and held against the body of another woman during birth. but mary of nazareth had no midwife, no matrixial ties. it was her, alone, preparing the mud-brick. her finding a place to prop it up. her finding a way to be comfortable on it. her wearing its mud as proof that she bore god and survived. we have spoken of jesus smelling wood and missing joseph: but what of mary, barely thirteen, making and shaping her mud-brick in the exact way her mother had taught her. wishing she didn't have to hold it up against herself

#thinking #cf katabasiss for jesus missing joseph

[hellyeahsickaf]

When I say "I can't do that" what I'm not saying is:

I don't feel interested in doing that

I don't care enough to

I'm too good to be doing that

I don't think you deserve that of me

I'm not in the mood to do that

Not now, I'll do it later

Maybe

If that's what I meant, that's what I would say

What I am saying is:

It will negatively affect me in ways I can't afford

I simply can't physically fucking do that

I can't risk the potentially severe consequences I may experience if I overestimate my ability to do that

And if I explain that I am unable to do that, it is not an invitation to:

Tell me how much my disability hurts your feelings

Ask if I'm sure

Interrogate me because you believe yourself to be the judge of how unwell is unwell enough

Put words in my mouth ("why don't you care?")

Tell me how easy it would be

Remind me of how many other things I've been unable to do. I keep the score more than you do

Accuse me of exaggerating or faking to avoid doing it

Ask me again shortly

Make assumptions about additional explanations. (I must be mad at you, I must not care about this)

Offer compensation in return ("I can pay you" "we can do something you want to do after" "I'll get you something you like")

Ask what it would take for me to suddenly be capable of doing it

Tell me how you do things you have to do when when you're tired and then you can just rest and recover. I am not like you

Remind me of a time I was able to do that. Either I had more spoons or was less severely disabled if at all.

Say that if I was well enough to do X today, I should be able to do this as well. Energy doesn't work that way. Are you capable of running 8 miles right this minute just because you were okay to work a 10 hour shift today? That's what I thought

Suggest simply doing it a certain way ("take your time", "do it sitting down", "we can stop and take breaks", "just take your painkillers", etc)

But it is an invitation to:

Leave me the fuck alone about it 💕

#chronic illness #chronic pain #disability #actually disabled #chronic fаtiguе ѕуndrоmе #spoonie #cfs #fibromyalgia #cfs/me #me/cfs #cpunk #cripplepunk #pots #long covid #yes this is about something that happened lmfao #feel free to add more #bc I am sick of this! #this is about physical disability. please don't derail it

[chronically-persistent]

You know I’ve been thinking, there should be no guilt in experiencing happiness as a disabled or chronically ill person. We don’t need to suffer every waking moment to justify our experiences and our truths.

Joy is a universal right. And that includes us.

#chronic illness #disability #chronic fatigue syndrome #me/cfs #myalgic encephalomyelitis #chronic pain #fibromyalgia

[angelsaxis]

Image ID:

MUTUAL AID REQUEST!!

Being a trans woman in Nigeria is a constant battle for survival. I'm seeking help to overcome these challenges and survive with dignity.

I'm seeking help with HRT meds, feeding, and living basics.

Your support means the world to me

GOAL: $600

PayPal: @angelsaxis

CASHAPP: TANTIENANCY

0/600

#angel posts #lgbt #trans #mutual aid #gender #trans rights #lesbian #gay #bisexual #cf #crowdfund #lgbt+ #lgbtq #lgbtqia #gay community #queer #asexual #pansexual #aromantic #trans righta #transgender