#myalgic encephalomyelitis

[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

[mindblowingscience]

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.

#Science #chronic fatigue #chronic fatigue syndrome #myalgic encephalomyelitis #stem #biology #medicine

[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

[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

[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

[tiredsn0w]

This can't just be me, right?

#personal post #disability memes #fibromyalgia #myalgic encephalomyelitis #autoimmune disease #chronic pain #chronic fatigue #chronic illness

[i-the-spoonie]

Feeling this right now :(

#disability #chronic illness #spoonie #mecfs #myalgic encephalomyelitis #pots #actually disabled #potsie #spoonie memes #barbie #disabled #ableism

[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

[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

[phleb0tomist]

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.

#ticked off my niche group ☑️ #hashtag ​technically a mobility aid user but really just spends 23 hours daily horizontal in bed #disability pride month #myalgic encephalomyelitis #orthostatic intolerance #severe myalgic encephalomyelitis #obviously many things can make you bedbound but y’all know my area of expertise is M.E #severe ME #disability #txt #1000

[lolliepopcrusader]

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!

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!

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!

#cfs/me #chronic fatigue #chronic illness #chronically ill #me cfs #myalgic encephalomyelitis #spoonie #chronic fatigue syndrome #chronic pain #mobility #mobility aid #crochet #crocheting #amigurumi #yarn crafts #yarn #hobbies #creativity #life hacks #hobby #craft

[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

[crippledpunks]

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.

#fatigue #chronic fatigue syndrome #cfs #myalgic encephalomyelitis #cfs/me #chronically chill #chronically ill #actually disabled #fibromyalgia #arthritis #multiple sclerosis #hypermobile spectrum disorder #hypermobile ehlers danlos #heds #eds

[gentlemanbutch]

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.

#ableism #medical trauma #medical gaslighting #health care trauma #chronically ill #chronic illnesses #chronic illness #disabled #disability #disability justice #fibromyalgia #pcos #endometriosis #mecfs #me cfs #chronic fatigue syndrome #myalgic encephalomyelitis #ibs #long Covid #covid #chronic pain #chronic fatigue

[thatdiabolicalfeminist]

I struggled to find a good quote from this because it's literally all worth reading.

This is about myalgic encephalomyelitis, previously called chronic fatigue syndrome. This is my most debilitating illness. When my partner sent me this article, she said, "He's basically just describing your life."

I'd be grateful if even people without ME and especially healthy people would read this and consider sharing it. There isn't much general awareness about this incredibly debilitating illness, and this piece succinctly describes what it is, what it's like to live with it, and some of the challenges ME patients face.

If you hit the paywall, use this link instead: https://12ft.io/https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/

#yes I did cry from the quote at the end #myalgic encephalomyelitis #thatdiabolicalfeminist #mecfs #spoonie #disability #chronic illness #fatigue can shatter a person #ed yong

[queerautism]

TransActual has a good briefing on the issues with the Cass Report in case you're like me and can't stand to read the whole horrible thing

One of the recommendations they are making is to basically screen for neurodiversity, because they want to deny autistic trans people the right to transition so badly.

And the NHS is already putting things into motion to make things worse for adult trans people in this country too.

The overall Ableism in this is absolutely despicable. They are making a new "research oversight board" and putting this fucking guy in charge of it, that despite all scientific evidence to the contrary still insists ME/Chronic Fatigue Syndrome is a "psychosocial" condition - Not real, all in people's heads, etc.

Someone like this being given this level of legitimacy is sick, and will continue to promote the horrible treatment of chronically ill and disabled people in this country.

#The Cass report #transphobia #Ableism #myalgic encephalomyelitis #actually autistic #I'm so angry