#chronic fаtiguе ѕуndrоmе

[introvertedx10]

[insidestory1]

It does blow my mind that people don't understand that your condition varies from day to day. Is it really so hard to understand?

People see you having a good day just once and think you faked your illness this entire time.

[thejournalingrat]

[rhiandoesfandom]

The mind numbing anger of chronic fatigue is getting irritable because you're so fucking tired but you really feel like you SHOULDNT BE.

You SHOULD be able to sit at a desk and do work. You SHOULD be able to just watch a freaking YouTube video. You SHOULD be able to just eat fucking lunch.

But you can't. Because your eyes are closing and it's like temporary death is taking you.

[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!

[prettythey]

Just a reminder:

If a mobility aid helps you live life, then use one. Seriously, i mean it. If that cane or walker or whatever helps you live more and manage your symptoms and flare-ups, then do it.

You are not too young

You are not "not sick enough"

You are not faking

You are valid, and your disability is real whether or not it's visible or diagnosed

Mobility aids are for anyone and if you think you need one then you probably do babe✨️

[chronicallycouchbound]

I’m allowed to be lazy. Disabled or not. Laziness isn’t an inherently bad thing y’all just too caught up in hyper capitalist hustle culture to care. I don’t owe you productivity. I’m allowed to rest.

My rest is radical.

[crippleprophet]

let me open by saying I Know How This Sounds (fem whose undergraduate chemistry professor recommended ze take turmeric to cure zyr arthritis, etc) so no hard feelings if you keep scrolling, but hopefully folks who know me know i'm speaking honestly about my experiences, even if those don't end up being the same for other people. so!

2 Tbsp of a common kitchen spice is doing as much or more to manage my ME/CFS as any of my meds or self-medicating drugs

@lakeeffectbitch outlines a way of trying this with a control in their reddit post (link); i just went directly to the one they thought might work so i'll put my experiences & the science/theory behind this under a cut for folks who want to avoid potential placebo effect :)

i'll get more specific about this in the "spoilers" but please be aware, especially folks with diabetes or other blood sugar conditions, that this substance may cause a blood sugar drop. it's less likely at this dose but probably keep a sugary snack on hand just in case

if you experience post-exertional malaise & want to try this but don't have spare money to spend on spices feel free to dm me & i'll see if i can help!

my experience:

i took 2 Tbsp ground sumac mixed with warm water on February 11. i tried taking it with a straw first because that's what my colonoscopy prep had said would make that go down easier but because the sumac particles were so big they didn't want to remain suspended & trying to get them in the straw was difficult, which then made it harder to swallow without, yknow, noticing that you're slurping down sediment

what worked better was getting the powder wet, putting a big clump of it on my tongue, then swallowing it with water like a pill

within about half an hour of taking the sumac it was like my fatigue just faded around me where i stood. it dissolved to the background & when i thought "oh i want to do this" or "i should do that" suddenly i found myself just doing it. i had spent the past week at least bedridden except for the bathroom, & though i took the sumac on a better day, i'd been planning to return to bed with a snack after taking it.

instead, i made myself lunch, and i sat on the couch to eat it. all of this was without taking an edible that day; usually i've gotta take at least 25mg delta 8 + 25mg cbd to even consider sitting on the couch. also, it was storming.

from my write-up the day of: "everything felt very sharp & clear & lucid." i washed the dishes from my lunch. all of these activities were about 2 hours, & at that point i emphatically needed a nap. waking up felt like after taking a muscle relaxer & sleeping: my muscles were more relaxed, & my whole body felt like it'd gotten a bit of a break

i've taken sumac at least 8 times since then on at least 5 different days (this time by modifying this sumac tart recipe to include a lot of sumac powder in the crust, which has been much more enjoyable than the Glass O' Sediment lmao) & adjusting for factors like weather, the effect has been comparable every time:

i watched Inception on the couch with my husband, & understood when she explained things to me

i watched leverage on the couch all day when it was below freezing

i worked a bit on fanfics i've barely been able to touch in a year

i "meal prepped" measuring spices, gathering ingredients, & soaking beans to make beans & rice in the instant pot later that day. i literally can't remember the last time i was able to use my instant pot, after thinking about it i think it was when i made palak paneer last summer, but that was a one-off special occasion thing, i've used it maybe 3 other times since developing ME

i wrote this post

the science:

okay a lot of this shit was over my head before i developed ME so i'm gonna be summarizing at my level lol, look to @lakeeffectbitch for a higher-level analysis

but what i do know! (all images from "The malic acid inhibiting inflammation in ankylosing spondylitis by interfering M1 macrophage polarization" by Ji et al., January 2025)

sumac contains high levels of malic acid, which is found in certain fruits (apples, peaches, etc)

the drugs.com page classifies malic acid as an inactive ingredient, so there are no known drug interactions

mice with ankylosing spondylitis had lower levels of peripheral malic acid than control mice

ID: bar graph showing mice with AS had about 0.03 micromoles per milliliter of peripheral malic acid, compared to the control mice level of over 0.2 micromoles per milliliter. the difference is labeled significant via asterisks. end ID

mice with higher malic acid concentrations had lower ESR and CRP (inflammation markers)

ID: two graphs showing lines with a downward slope. the top graph, ESR versus malic acid concentration, is labeled: r=-0.6802, 95% confidence interval =-0.8843 – -0.2578, p=-0.0053. the graph shows ESR, an inflammation marker, decreasing as malic acid concentration increases. the bottom graph, CRP versus malic acid concentration, is labeled: r=-0.6068, 95% confidence interval =-0.8537 – -0.1371, p=-0.0165. the graph shows CRP, an inflammation marker, decreasing as malic acid concentration increases. end ID

mice treated with malic acid had lower levels of TNF-alpha than the mice with untreated ankylosing spondylitis. humira & similar biologics that treat autoimmune diseases are TNF-alpha blockers

ID: a bar graph of relative mRNA expression of TNF-alpha. M0, the control mice, has a relative expression of 1. M1, the mice with ankylosing spondylitis that did not receive treatment, has a relative expression of slightly less than 4.5. M1+MA, the mice with ankylosing spondylitis who received the malic acid treatment, has a relative expression slightly less than 3. this indicates that the mice treated with malic acid had lower expression of TNF-alpha than the untreated mice. asterisks between M0 and M1 and between M1 and M1+MA indicate significance. end ID

the mitochondrial function of M2 macrophages in mice treated with malic acid "was significantly enhanced"

analysis of the mice's spinal tissue blew my fucking socks off. trying not to jump to conclusions & i know journal articles are full of errors but that looks potentially disease-modifying.

ID: a 5x3 presentation of samples of mouse spinal tissue. the control mice, which are healthy, have thick, undamaged, glowing tissue. the mice with ankylosing spondylitis have thin, curved, cracked-looking tissue. the mice treated with celecoxib, a common prescription NSAID for arthritis, appear very similar to the untreated mice. the mice treated with 250mg/kg of malic acid per day have tissue in between the untreated and healthy appearances; the tissue is "glowing" like the healthy tissue but still narrower and curved, although less so than the untreated tissue. the mice treated with 500mg/kg of malic acid per day have tissue which looks even closer to the healthy appearance, with less curvature than the other treatment groups. end ID

since i started drafting this post i've started taking these malic acid supplements from Nature's Life – the full dose made me feel weird including some heartburn so i cut the capsules & take roughly 2/3 – 3/4 of it at a time (i drop the rest into a spare pill jar to make more doses from). it's been similarly effective for me

please be aware that the supplement instructions say to only take it once a day, i haven't had any issues but everybody is different & this avenue is definitely under-researched! (the mice were given 250mg/kg per day which for me would be like 27 grams but i am not a mouse lol)

[johnnyiscaged]

ily disabled people

ily disabled people who are dependent on aids

ily disabled people who are too scared to use aids

ily disabled people who have been bullied out of using aids

ily disabled people who feel like they don't need many aids or any at all

ily loud disabled people

ily quiet & mute disabled people

ily disabled people who "make being disabled your entire personality"

ily disabled people who are punk, goth, emo, scene, grunge, metal, vkei, decora and any "wierd" fashion style (especially if you decorate your aids to match you're the coolest)

ily creative disabled people

ily disabled activists

ily disabled people who need a helper

ily disabled people who want to be independent but can't be

ily disabled people who love your independent

ily disabled people who wish they could have a helper

ily disabled people who feel like you're not disabled enough to be valid

ily older disabled people who help younger disabled people

ily young disabled people who help older disabled people

ily overweight disabled people

ily underweight disabled people

ily disabled people trying to lose weight for health

ily disabled people trying to gain weight for health

ily disabled people with invisible disabilities

ily stigmatized disabled people

ily disabled people who don't feel like they fit into any of these phrases

ily disabled people !!

[insidestory1]

I wish people would understand that when you're chronically ill, your energy doesn't replenish itself from one day to the next like it does when you're healthy.

Let's take the following situation as an example.

"I had fun hanging out today. Would you want to do it again tomorrow?"

"I'm sorry, I can't. I used up a lot of energy today, and I'll still be worn out tomorrow."

If you have a chronic illness then you know all about this, but it seems surprisingly hard for a lot of people to understand. They assume that if you rest or get a night's sleep your body will reset as a matter of course. The idea of a body that will not replenish it's energy levels no matter how much you rest is completely foreign to them. Not knowing when or how you'll recover, and just having to wait and see when your body decides that it feels better sounds like a lie to them, when they first hear it. It takes a lot of explaining to make them understand. The saddest thing is that a lot of people don't care enough to listen to the explaining, and choose to get offended instead because it's easier.

[squid-socks]

Guys for the sad but the fun;

[myalgicencephalomyelitiscfstom]

ME/CFS Awareness Video

I am one of many who appear in this. Thanks to Anya for making it. 👏

@this.is.the.illness.m.e This video might take a few minutes to watch, but M.E takes years. Decades. Whole lives.

Today is May 12th, the International M.E Day. Living with M.E (Myalgic Encephalomyelitis) means missing out on life while the world moves on without you.

But behind every closed door, there is still a person. Still hoping to be seen. Still fighting to be heard. We made this video because we refuse to stay silent. This is what M.E really looks like. It’s painful. It’s lonely. It’s real.

If you’ve never heard of M.E, this is your chance to understand. And if you have - please share this video so more people can see it.

[eminthegrave]

Been having an unstable few days with walking and shit. Just made me think about the dynamic part of a dynamic disability. On sunday I walked over 2 miles with my dad with little issue. Yet just a few days later I can barely walk to the bathroom down the hall. It's less than 50 meters and it's not even because of pain. My body just decides that it needs to be incredibly unstable and shaky on my feet for no reason. Now all my joints ache because i have been in my bed all day. every movement is accompanied by crackling.

It also isn't like my usual crashes or flare ups either. I'm actually incredibly present and alert, I have a little trouble with getting words to my mouth. But usually its is much worse than that. It's like my body forgot the fatigue part of chronic fatigue syndrome, either that or there is something else going on.

[hellyeahsickaf]

brain fog is so stupid. Like what do you mean my body is in such rough shape I have nothing but my thoughts but also I can't think?

[byler-alarmist]

CHRONIC FATIGUE GANG RISE UP LIE DOWN

[johnnyiscaged]

when you just layed down in a position that makes the pain more bearable but have to use the toilet and now you have to decide what to do. fatigue and chronic pain are just so damn exhausting i wish i could just take a shit