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#myalgic encephalomyelitis
mindblowingscience · 15 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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jadechronicilly · 1 year
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When will people realise that Chronically ill people cannot predict how they will feel in the next few minutes, hours, days or months. I could wake up feeling fine and then feel like I’ve been hit by a truck within the hour. There are no warning signs.
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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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i-the-spoonie · 8 months
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Feeling this right now :(
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drifting-bones · 4 months
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they should invent walking that doesn't make you feel like you're going to keel over and die
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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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phleb0tomist · 8 months
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happy disability pride month to people whose main mobility aid is an adjustable bed
people who need to lie flat all the time
people who only sit up to eat or use the bathroom
people who are too unwell to be transported anywhere, even within their own home
people who structure their whole week around recovering from a single planned trip out of bed
people who are technically wheelchair users because they can’t walk, but can’t tolerate being upright for long enough to use a chair either
people who can’t adapt activities to be accesible, and instead have to just miss out on 90% of life
i see you and i respect you and love you. if you feel limited, confined, sick, or bound to your bed, i see you.
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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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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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gay-we1rdo · 6 months
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gonna make another similar poll soon, gonna add braces, take away able bodied options, spell stings right, add types of wheelchairs, that kinda stuff, once this poll is done
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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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lolliepopcrusader · 2 years
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Calling all chronic creatives - here's how to up your crochet game!
I'm an avid crocheter, but holding the hook for long periods of time became exhausting and painful. Being chronically ill, losing the ability to enjoy my hobbies was tough for me accept.
My husband took me to the craft store and we purchased a ergonomic crochet handle. This handle needed to fit my criteria;
able to hold a variety of hook sizes
hold up to high tension crochet projects (I do a lot of amigurumi crochet, which you need to complete with tight tension)
reduce my wrist/hand pain
reduce the amount of grip strength needed to hold the hook to avoid fatigue
This ergonomic crochet handle *seemed* to tick all these boxes. It was quite an expensive purchase and to be honest, I was disappointed in it in all aspects.
The purchased handle uses small rubber stoppers to hold the crochet hook in place, but as you are crocheting the hook works loose and spins around inside it. The handle itself was too small, making it painful to hold. I had to use a lot of grip strength to keep it in my hand, which is what I was trying to avoid by purchasing the darn thing. The little knobbly bit at the end really dug into my hand and hurt. It was so annoying to use and I gave up on it altogether after three days of using it (not to mention one of the rubber pieces broke apart within hours).
I expressed my disappointment to my husband, and he decided to come to my rescue! Over the course of a week, he designed me his own ergonomic crochet handle in a computer program called CAD. He then printed it out using his 3D printer. I can't even begin to tell you how much I love this new handle - its a game changer!
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During the design process, he took into consideration all of my complaints about the disappointing handle and my criteria that I had listed. The handle he designed is bigger, so it uses less grip strength to hold it in place which also reduces my pain.
Instead of using rubber stoppers like the other handle, he designed a 'lock and key' system for keeping the crochet hooks in place and it works fabulously! The hook never moves and I'm really rough with my crochet hooks. It holds up to my high tension crochet projects and I have completed many amigurumi with it, even small, intricate items. Since it is designed with the lock and key system, my husband was easily able to print different keys to be able to hold multiple sizes. I've got keys ranging from 1.25mm all the way up to 6mm!
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I can now crochet for hours on end and I swear my crochet skills have gotten so much better.
After expressing my delight at the crochet handle my husband designed for me, both him and I want others to be able to experience the freedom that I now have when crocheting. With chronic illnesses, its important for you to be able to continue with your passions as much as possible, so we have decided to make this crochet handle a sellable physical item for others to enjoy.
Here's the link to purchase one if you would like to give it a go!
Each crochet handle will come with the hook sizes;
1.25mm
2mm
3mm
4mm
4.25mm
5mm
6mm
If you want other hook sizes, send us a message and we can design one.
The cost of the handle and keys covers the cost of the 3D printing material, we are not making a profit off of this because we want as many people suffering from chronic illness to be able to enjoy crocheting again. We are happy to post internationally as we are based in New Zealand, send us a message before purchasing so that I can get you the cost of shipping.
I hope you will love this crochet handle and hook set as much as I have!
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crippledpunks · 2 years
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i need people to understand that when a person with a chronic illness talks about the fatigue that comes with it, we're not talking about the tiredness that comes from a 10 hour shift at work, we're talking about the inherent exhausting heavy malaise that hangs on your entire body like a weighted blanket from the time you wake up in the morning and doesn't get any lighter as the day goes on.
fatigue doesn't come from exertion. it's just innate- and when it does come from exertion, it's been worse than the innate fatigue that was already there in the first place, and it adds on top of it, not replaces it.
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gentlemanbutch · 7 months
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I am so tired of medical professionals. I am so tired of having to try to speak in code so they listen to me, because apparently just outright stating my symptoms is the incorrect way of doing things. I am so tired of trying to give them enough details so they understand, but not too many details, because then they might think I’m dramatic. I’m so tired of them not bothering to learn any of my history and just being told I just need to eat less, or drink more water, or get out and exercise. I’m so tired of having to pretend to not know what I’m talking about. I’m so tired of arrogant pricks who don’t know what’s going on being too proud to refer me fo someone else. I’m so tired of being brushed off if I did my own research or have theories about what’s happening in my own body. I’m so, so goddamn tired of not being believed about the experience of my own life.
For all these providers with enormous fucking power that you use to abuse, gaslight, and dismiss patients who have spent years in pain — I hope you rot.
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i-the-spoonie · 8 months
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