#Myalgic Encephalomyelitis/Chronic Fatigue Syndrome(ME/CFS) | Explore Tumblr Posts and Blogs

crippledpunks · 5 hours

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chronic fatigue weaves its way into everything. people love to tell disabled people they'd love to rest as much as we do, but they fail to understand how tired we are while we rest. we are not relaxed, we are generally pretty miserable, either from pain, irritability, or fatigue- which bleeds into every aspect of your life. being too fatigued to get up off of the couch means that you're too fatigued to get to the cupboard to pull out pans to attempt to start cooking.

the steps hidden within steps that are required to do a lot of tasks related to being a "functioning adult" are daunting, there are often way too many steps necessary to make "Simple" foods or do "simple" chores for disabled people to accomplish these tasks. chronic fatigue often means that even waking up from a nap or night's rest requires time to adjust to and power through

waking up is a process for me. im often no more alert and awake hours after i've woken than I am right after doing so. caffeine does not help fatigue- at least not at safe doses, for me, anyways. many days the act of moving from my bedroom to my living room is too much. taking dishes to the sink can be too exhausting. i have began falling asleep in front of the kitchen counter while standing because i realize the amount of steps required to clean the counters, or do the dishes, or prepare a meal that all of my energy instantly bleeds away

it's okay if you feel this way too. i have been dealing with chronic fatigue my entire life and it cost me my best paying job. i lost my ability to work because of it. it's not just you being "sleepy", you are genuinely too exhausted to function. you do NOT have the energy levels other people do, and that's okay. it's okay to let yourself be tired sometimes and address that instead of trying to pretend you're not tired.

i wish you good luck. you are loved

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covidsafehotties · 1 day

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Published April 26, 2024

Highlights

"Mitochondria, the cellular organelles known as the powerhouses of the cell, are central to this discussion. They play a crucial role in cellular energy production through the process of oxidative phosphorylation, in addition to their involvement in oxidative stress, apoptosis (programmed cell death), induction of cellular senescence, and the modulation of immune responses. The function of mitochondria is essential for maintaining cellular and systemic homeostasis. Disruptions in mitochondrial function can lead to a decrease in energy production, increased production of reactive oxygen species (ROS), and initiation of inflammatory pathways, all of which can contribute to the pathophysiology of various diseases."

Mitochondrial DYSFUNCTION already proven or highly suspected in:

- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

- Post-treatment Lyme disease syndrome (PTLDS)

- Epstein-Barr virus (EBV) and other herpesviruses

- Chronic Q fever fatigue syndrome (QFS)

Long-lasting structural damage to mitochondria:

"During the acute phase of COVID-19, SARS-CoV-2 can directly interact with mitochondria, exploiting mitochondrial dynamics for virus proliferation and causing structural damage"

Persistent dysregulation of mitochondrial bioenergetics:

Viral proteins may interfere with the mitochondrial antiviral-signaling protein (MAVS), disrupting its normal function in the antiviral response and leading to chronic mitochondrial dysfunction

Autoimmunity triggered by COVID-19:

The immune system’s response to SARS-CoV-2 might include the development of autoantibodies that mistakenly target mitochondrial proteins, a phenomenon possibly driven by molecular mimicry

Mechanisms linking mitochondrial dysfunction to long COVID symptoms:

“Mitochondrial dysfunction is intricately linked to the diverse symptoms of long COVID through its impact on energy production, oxidative stress, immune response, metabolic processes, and vascular health. Understanding these mechanisms is crucial for developing targeted interventions to mitigate the effects of long COVID and improve patient outcomes."

"PRDX3 is located in the mitochondria, where it plays a key role in detoxifying hydrogen peroxide (H2O2) and protecting cells from oxidative damage."

"While initial findings highlighted PRDX3’s potential in reflecting oxidative stress within mitochondria, our results specifically connect elevated PRDX3 levels to the symptom of dizziness rather than a broader range of long COVID symptoms such as fatigue."

"This points to a more nuanced understanding of PRDX3’s role, necessitating a careful interpretation of its utility as a biomarker."

Potential therapeutic implications

“Strategies to improve mitochondrial function involve a combination of pharmacological interventions, lifestyle modifications, and nutritional support." "Antioxidants, such as coenzyme Q10, MitoQ, N-acetylcysteine, resveratrol, and alpha-lipoic acid, have been suggested to reduce oxidative stress in mitochondria, thereby improving their function."

"Additionally, compounds like L-carnitine, which facilitate fatty acid transport into mitochondria for energy production, could also prove beneficial. NAD+ boosters, such as nicotinamide riboside (NR) and nicotinamide mononucleotide (NMN), have garnered attention for their potential to enhance mitochondrial function by increasing the levels of nicotinamide adenine dinucleotide (NAD+), a critical coenzyme involved in cellular energy production and repair processes"

“Moreover, understanding the interaction between mitochondrial dysfunction and other pathophysiological processes in long COVID, such as immune dysregulation and endothelial dysfunction, could lead to the development of combination therapies that address multiple facets of the disease. Integrative approaches that combine pharmacological treatments with lifestyle and nutritional interventions may offer the most promise for comprehensive management of long COVID, aiming not only to alleviate symptoms but also to restore overall health and well-being.”

#mask up #covid #covid 19 #covid isn't over #pandemic #covid conscious #long covid #covid is airborne #wear a mask #coronavirus

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chronicallydragons · 3 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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violet-phoenix-nebula · 1 month

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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.

#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

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myalgicencephalomyelitiscfstom · 28 days

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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

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chronically-persistent · 3 months

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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.

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

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thatchronicfeeling · 10 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)

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

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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!

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!

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gentlemanbutch · 8 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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thebibliosphere · 1 year

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“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

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beeslippers · 7 months

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Lying down and resting isn’t enough I need my whole body evaporated by a giant laser beam

#me/cfs #chronic fatigue syndrome #myalgic encephalomyelitis #cfs #cfs (chronic fatigue syndrome)#cfs/me #chronic illness #chronically ill #chronic fatigue

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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.

#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

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crippledbanshee · 1 year

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I really need people to stop treating physical activity as an essential part of any treatment. In my case and in that of many people, physical activity only hurts us and takes away our life quality little by little. Just leave people who can't and shouldn't do physical activity alone.

#chronically ill #disability #disabled #chronic fatigue #cripple life #cripple punk #ehlers danlos syndrome #chronic pain #physical illness #physically disabled #physical disability #cripple problems #chronic illness #cfs/me #myalgic encephalomyelitis #postural orthostatic tachycardia syndrome #dysautonomia

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violet-phoenix-nebula · 3 months

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Reblog if the word psychosomatic or synonyms of it trigger instant, burning rage.

psy·cho·so·mat·ic adjective (of a physical illness or other condition) caused or aggravated by a mental factor such as internal conflict or stress.

[Basically, the fancy word for "it's all in your head"]

#chronic illness #chronic life #chronic pain #chronically ill #chronic fatigue syndrome #chronic fatigue #invisible disability #disabilities #disabled #disability #disabilties #cfs (chronic fatigue syndrome)#me cfs #cfs/me #myalgic encephalomyelitis #fibromyalgia #ehlers danlos #ehlers danlos syndrome #invisible illness

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myalgicencephalomyelitiscfstom · 2 years

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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

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

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chronicallyuniconic · 1 year

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Painscrolling

When you're in too much pain to sleep and can't do anything else except lie there, so you scroll aimlessly, hoping it all goes away

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