#Myalgic Encephalomyelitis

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[i-the-spoonie]

[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.

[crippledpunks]

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

[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.

[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.

[spoonfulofhannah]

When a disabled person says that they can’t do something, we don’t mean that we just don’t want to. We also don’t mean maybe. We mean that we physically cannot do it or that we could, but it could really harm us. We have to pay consequences. You don’t.

[tiredsn0w]

This can't just be me, right?

[drifting-bones]

they should invent walking that doesn't make you feel like you're going to keel over and die

[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.

[normal-with-adhd-is-a-joke]

People are very critical about long COVID/ME/CFS patients not being on diets and it's probably the most fucking annoying ableist thing we have to deal with on a regular basis that people think is totally fine or even helpful.

Preparing homemade food takes a ton of energy. Preparing homemade food to fit a diet takes even more energy and is expensive. Carnivore is one of the most common recommendations and, aside from dieticians practically screaming about how dangerous it is due to the complete lack of vitamins, meat is expensive. Even high protein, low carb diets that aren't as strict still require you to spend quite a bit on protein. Diets like anti-inflammatory, mediterranean, low fodmap, and others that restrict certain types of food are often prohibitively complicated, and many times advice is conflicted on whether things are ok to eat and in what amount. The vast majority of restrictive diets don't come with easy-to-prepare meals unless you have a ton of money to drop on expensive meal kits.

And most importantly, for some of us food is all we have left. Being closed inside for 90% of your life is incredibly boring in a way that's hard to describe. I spend 8-10 hours a day in the same place doing the same things because they're all I can do. Eating something interesting is pretty much the only way I get to add enrichment to my life. Diet is not a cure for us, it only provides mild symptom relief if any. It's just not worth giving up the small sliver of joy that is an "unhealthy" meal when it's not going to actually result in us regaining the ability to do other things that bring us joy.

❌If you give dieting advice on this post I will block you. You're annoying and you're missing the point.❌

[i-the-spoonie]

Feeling this right now :(

[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.

[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)

[thesecretlifeofmecfs]

[monachopsis-11]

I just saw such a great disability term I personally haven’t ever seen before and I wanted to share it with everyone so here it is:

Usable hours, aka the amount of hours a day someone has where they can carry out tasks (school, work, showering, cooking, household tasks, being out of bed etc.)

I don’t know why but this feels so revolutionary to me 😂

If I’m honest it changes a lot for me but on average I can manage 4-5 whereas a healthy person might have 10-12 usable hours. Otherwise I’m sitting on the couch scrolling and watching YouTube or resting in bed.

Some days I can handle more and sometimes a lot less depending on how much I’ve done previously that week/month etc. It also depends a lot on the type of tasks, I manage mental tasks pretty well and typically write a decent amount but physical tasks exhaust me much more quickly.

I know this is a lot more than some people but instead of focusing on that I’m trying to focus on how much less it is than a healthy person. Having half as much time in a day I can be functional as the average person and during that time I’m still exhausted/in pain/having symptoms/struggling in ways an abled person wouldn’t.