#me/cfs

[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

[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

[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

[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

[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

[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

[drifting-bones]

they should invent walking that doesn't make you feel like you're going to keel over and die

#disability #disabled #physically disabled #me/cfs #myalgic encephalomyelitis #joint pain #joint problems #cripple punk #physical disability #mobility aid #cane user #mobility aid user #ow my joints #chronic fatigue #chronic pain #chronic illness #chronically ill #chronic migraine #long covid

[fernthefanciful]

Please please please I am BEGGING y'all

When you visit someone who is chronically ill or disabled and their house is not as clean or tidy as you'd like: just don't say anything

We *know* okay.

Trust me, we know

We'd love to see it differently too. But the truth is we *can't*. And you know this, you do!

So please. Just shut up. Don't pile on more guilt and feelings of inadequacy. We have enough of our own

#chronic illness #chronic pain #chronically ill #chronic fatigue #long covid #me/cfs #disability #i can live or i can have a clean house #right now i can't have both

[thatchronicfeeling]

July is Disability Pride Month

Let’s celebrate by keeping disabled people ALIVE and SAFE.

Want to know how you can help?

WEAR A MASK. 

(FFP2/3 or N95 give best protection, especially the ones that fasten behind your head)

#disability #disability pride month #immunocompromised #me/cfs #myalgic encephalomyelitis #chronic fatigue syndrome #ulcerative colitis #ibd #Inflammatory Bowel Disease #pots #Postural Tachycardia Syndrome

[cannabisbutch]

I hope every disabled person with chronic fatigue has a restful disability pride month

🛌🏼💤💙

#disability pride month #chronic fatigue #me/cfs #cripplepunk #cpunk #adding the pic in light of assholes being assholes elsewhere in disability tumblr

[chronically3mpty]

So you’re telling me I have just this one body for *checks notes* the rest of my…life? Like no refunds/returns/exchanges/do overs?

#chronic illness #chronic pain #spoonie #me/cfs #ibs

[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

[chronicallydragons]

I love how people with chronic pain can be at extreme levels of pain and just be like “My body is ouchie”

#it’s me my body is ouchie #chronic pain #chronic illness #disabled #fibromyalgia #me/cfs #gastroparesis #disability #migraine #postural orthostatic tachycardia syndrome #chronic fatigue #chronic fatigue syndrome #post exertional malaise #pwme #pots #spoonie

[myalgicencephalomyelitiscfstom]

Somebody shared the following today saying: "I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much" Here's the TikTok link: https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070

#spoonie #myalgic encephalomyelitis #chronic fatigue syndrome #me/cfs #chronic illness

[unveilandresist]

thinking about everyone with medical conditions doing their damnedest to avoid covid while living with people who could not give less of a shit about getting themselves and other people sick. you're not alone and you deserve better.

#ableism #chronic illness #disability #masking #me/cfs #long covid #chronic fatigue syndrome #chronically ill #disabled

[thebibliosphere]

“You’re sitting, but it feels like you’re running for a bus,” she explains. “Your body’s like, ‘You need to stop!’” She compares it to the after-effects of an all-nighter, only she’d had a full night’s sleep beforehand. This lack of explanation was alarming. She couldn’t comprehend why sitting in class was so draining. Naturally, doubts crept into her mind. What if, on some subconscious level, she was faking everything?

*

Despite ME/CFS’s low recovery rate, since the late 1980s certain researchers and clinicians, particularly in the UK, have touted two ‘cures’: cognitive behavioural therapy (CBT) and graded exercise therapy (GET). The wider ME/CFS community—including clinicians, researchers, and patients alike—discredits both. They’re rooted in the erroneous belief, known as the cognitive behavioural model, that the condition is a psychiatric disorder and its physical symptoms are psychosomatic. “It’s a multi-systemic disease,” says Professor Simon Décary, a University of Sherbrooke physiotherapist who researches long COVID and ME/CFS care outcomes. “There are vascular, neuro-inflammatory, and postural problems. You can’t create these with your brain.” Understandably many patients do develop psychiatric symptoms, but they’re a consequence of their illness.

Just going to leave this here for anyone who needs it.

Bolding mine for emphasis.

#me/cfs #myalgic encephalomyelitis #chronic fatigue syndrome #long covid #it's me #I needed it