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#chronic fatigue syndrome
mindblowingscience · 14 hours
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Long overdue and sorely needed, research into chronic fatigue syndrome has picked up speed since the pandemic illuminated the lasting and debilitating effects of long COVID. The possible causes of chronic fatigue syndrome, otherwise known as myalgic encephalomyelitis (ME) or ME/CFS, remain elusive despite this new research effort, although they are slowly coming into focus. Past viral infections triggering an overactive immune system and malfunctioning mitochondria depleting cells of energy are possible explanations for how chronic fatigue syndrome develops. Now a new study based on mice suggests that some drugs used to treat depression, which commonly accompanies ME/CFS, could also ignite the condition.
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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
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riddledem0n · 11 months
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Yesterday the 12th of May was Fibromyalgia awareness day. I'm a little late uploading it, but spreading awareness is being done nonetheless. Lots of love for my chronic pain people!! <3
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unveilandresist · 3 months
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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.
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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.
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chronicallydragons · 2 months
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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
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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.
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crippledpunks · 27 days
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chronic fatigue is such a bitch because it's not super obvious at first. it creeps up on you some days, but other days, that's just the entire day. you start your day exhausted as hell, and like yeah, you're aware that you're tired, but you blame yourself for feeling this way. it's always your fault somehow. then comes the end of the day and you realize that it was your chronic fatigue, and you blame yourself for beating yourself up all day long. you can't win
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thatchronicfeeling · 9 months
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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)
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asharestupid · 5 months
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I don't think some ppl understand that when disabled ppl say that it takes a lot of work to do something they're saying that it's a lot harder for them to do it than it is for you. To you it's a 20 minute task, for me it will take 2 hours minimum. All it takes from you to do it is cleaning supplies. Meanwhile it costs me a meltdown, very sore muscles, and 2 days of rest after. There's also a good chance I will forget to eat, drink, or use the bathroom while I'm doing it. When I say it's hard for me to do something I mean it's hard I don't mean that I don't want to do it.
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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
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mindblowingscience · 4 days
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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.
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valeria-sage · 6 months
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How can chronic pain patients be “addicted to pain meds?” That’s like telling someone with a prosthetic that they’re addicted to their prosthetic. Or a cardio patient that they’re addicted to their pacemaker. Or a diabetic that they’re addicted to insulin. What is the thought process here?
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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.
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unveilandresist · 6 months
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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.
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ghostonly · 4 months
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Irritates the hell out of me when people respond to a post or comment like, "everyone does this, it's not just [disorder/illness/neurotype], it's called being a person."
Yeah and everyone coughs once in a while but it doesn't mean someone with pneumonia doesn't cough?? It doesn't mean pneumonia doesn't cause coughing??
Everyone gets dizzy once in a while but it doesn't mean vertigo doesn't exist??
Just about every symptom or group-common trait is going to be experienced by people who don't belong to those groups or have that disorder. It's about the frequency and intensity with which that symptom or trait comes up.
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