#me is not just chronic fatigue

[m-e-and-more]

There are #MillionsMissing with #MyalgicEncephalomyelitis. Your #friend, your #family, or your #lovedOne sent you this because they live with an #incurable #untreatable #chronicIllness and #disability.

#MECFS is a misunderstood disease. Many people first hear it by the misleading name #ChronicFatigueSyndrome of #CFS but #MECFS is about so much more than the #dehbilitatingFatigue it is a #neuroimmunological condition thst can affect many organ systems across the body.

In particular it affects the #mitchondria stopping rhem from making the #ATP essential for life. This #mitchondrialDysfunction is worsened following phsyical or mental exertion. This causes the defining symptom of #MECFS #PostExertionalMalaise

#ME can also cause #neurological inflammation leading #migraine and #FND as well as #dysautonmia like #POTS that causes abnormal heartrate, bloodpressure, and temperature responses to everyday tasks like standing or bathing.

In short it is a severely dehbilitating #neuroimmunological disease and your loved one needs your support to #StopRestPace and treat their body right before it is too late. #severeME is as dehbilitating as late stage AIDS. You may be able to help save someone from this #livingDeath if only you take the time to learn and care.

I urge you to learn more about ME. The informstion here only scratches the surface. The Open Medicine Foundation @openmedf. ME Action @meactnet, Emerge @emergeaustraliainc, and The Hummingbird Foundation are all great places to start. As are my blog, instagram and resource page.

Thank you for taking the time to learn and read about this disease. I and the #MEcommunity are grateful to everyone who is willing to #learn how to be our allies.

[a-sassy-bench]

do able-bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?

like honestly. what do you think being disabled means?

[chronicpaingirlie]

being disabled is so fun because sometimes you can just be going about your day like normal and with zero warning your body will be like you have to lay down Right Now or you will pass out

[sillyfroggremlin]

people with chronic pain and chronic fatigue will be like why does it hurt and why am I so tired

[painfordays]

Being the only disabled person in a friend group is like. Argues against mental age for 30 minutes without achieving anything because they will die if they cant call developmentally disabled adults 6 year olds. Feel guilty for cancelling plans for disability reasons and making up a lie so you dont have to tell the truth. Get called a cripple after explaining your symptoms. Get told nothing is ever the doctors fault because they work soooo hard and you're just not persistent enough. Realize the only way theyd ever do even minor caregiving tasks for you is if they were paid. Spend an hour arguing against eugenics. Listen to someone talk about a group of disabled people and with every sentence it gets more obvious they never interacted with anyone from this group personally. Get compared to peoples elderly relatives. Get -

[fella-lovin-fella]

hey if you ever feel like you're faking your pain/mental illness/any symptoms, or if you feel like no one understands or believes you. i do. i believe you. i love you and i hope you do what you can to take care of yourself <3

[kestrel-tree]

The fun thing about having both ADHD and chronic illness is you can take an Adderall and spend 4 hours cosplaying as non-disabled then around 4pm your body is like 'here's your tab' and gives you the whole day's symptoms at once.

[potsiepumpkin]

When the doctor is pleased the tests came back “normal” after I explicitly told them that wasn’t the problem in the first place.

[m-e-and-more]

I am one of #MillionsMissing with #MECFS. #MyalgicEncephalomyelitis is a severely disabling #postViral #neuroimmunological #ChronicIllness with no FDA approved treatments and no cure. Only 5% of #pwME recover (Health Rising, 2021).

Before getting sick I was a choral singer and carillonneur performing all over North America and Europe. I interned for Google in Data Anonymization. I was a student one semester from graduation at Wellesley College. I swam, skiied, danced, walked, and studied with ease. ME stole my life, and yet still I am here, not dead, not living, just missing. My brain is clouded and my limbs turned to lead.

ME patients functioning scores are worse than those with depression, stroke, MS, heart attack, or HIV. Only comperable to those with widespread #chronicPain and cancer patients in #palliativeCare (Standford MECFS Initiative, 2019).

#SevereME is often described as #livingDeath and despite this grave level of illness housebound and bedbound patients still lack the homecare support and palliative care necessary to stop preventable suffering.

Outdated practices such as #GET and #CBT lead to many patients becoming severe and despite being formally withdrawn must be ended completely. Patients with #LongCovid need to be advised to #StopRestPace to minimize the spread of this horrible disease.

My #SevereME started out mild. But I was not advised about #PostExertionalMalaise or #PEM the defining feature of MECFS. I did not pace and I slowly had my life stolen by this terrible disease until I became #bedbound over a year go. Please #LearnFromME and implement pacing before it is too late.

Research into ME is extremely underfunded and necessary to improve long term outcomes for patient with #ME.

Despite an economic burden of 36-51 billion dollars per year in the US alone, the NIH provides ME with 14x less funding than necessary to be funded equally to its disease burden. (Open Medicine Foundation 2021, Health Rising 2021)

I urge all who see this to fight with me. This disease is real and not rare. We need treatments and research now. Already far too many are missing, help us come back to life.

[tumble-tv]

Had to leave school early again because the pain was making me nauseous, and I couldn't focus, and I was struggling to stand for more than like 30 seconds. I hate this. I missed a cool assembly because of this. I missed my favorite class because of this. I'm so tired.

[swordsonnet]

the most annoying thing about me/cfs is that it's more like 10 different illnesses in a trenchcoat. i'll wake up with a new symptom and be like "oh okay, guess that's what we're doing today"

[hellyeahsickaf]

One morning a bit under 9 years ago I woke up without knowing that was the last time I'd wake up feeling rested. I'd never feel that again. It Feels like I took that for granted really

[chronicpaingirlie]

the fact that even laying down can be exhausting is SO unfair . can someone please invent a type of rest that is actually restful

[defectivehero]

people with chronic fatigue 🤝 exhaustion whump

[survivingfmandcfs]

Every day I'm like, "Okay, it's time to do yoga!" And then lie down face first on my bedroom floor.

[dissociativedoe]

i am BEGGING abled people to understand that when a disabled person says they can't do something, it means they cannot do that thing.

like. that is SUCH a simple concept but theyre all somehow convinced that we're lying or making excuses or that we're just not pushing ourselves hard enough or we dont know ourselves as well as THEY do.

i would much rather believe someone who says they cant do something and is lying than not believe someone and push them too far, sometimes to the point of injury. like... able-bodied people, what is not clicking with you.