diva
Region: US
Sunday 19 July 2026 16:07:36 GMT
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Babuska :
When I started calling it Myalgic encephalomyelitis to my doctors I realized how little they knew.
2026-07-19 21:45:13
4232
Nightsinger 🌎🆘🇺🇸 :
The people who haven’t experienced post exertional malaise THINK it’s just fatigue. When you have experienced PEM, you absolutely know the difference. Fatigue is being tired, maybe even exhausted. PEM is systemic inability to regulate recovery. It’s like a fuel injected car that’s run totally out of gas, oil and lube. The engine needs serious work before it can go on the road again, not simply a refuel, and even then it may never run the same again. Resting like a typical person does not cure PEM. I wish people could just understand and believe us. We are physically incapable of recovery within a “normal” persons timeline.
2026-07-19 23:27:41
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Shahad :
Doctors genuinely piss me off. A GP once tried to change my medication and I told her I can’t because I react badly to all SSRIs. She said “Your medication is an SSRI”. I said no, so she googled it in front of me and I was correct. They like to argue and gaslight patients so much it’s becoming a pattern
2026-07-20 03:22:37
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𖤓 𝔰𝔞𝔤𝔢 𖤓 :
I agree 100% and i feel it was very likely done to downplay it.
2026-07-19 17:58:13
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Éms x :
No because why are they telling me to do exercise when I have to choose between showering and eating
2026-07-20 21:54:43
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Emma :
You are not dramatic you are right
2026-07-19 17:45:50
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apostleofsalt :
Hold up. Are you telling me ME was renamed to CFS and not the other way around? I always assumed they renamed it to ME as more more research was done and they got a better idea of what the symptoms were caused by. I should have known better after all the bad experiences I’ve had with doctors over the last 20 years.
2026-07-19 20:33:12
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mmmm393911111 :
I have debilitating fatigue they told me to run 3 miles a day.i can't get out of bed.. Taking a shower is horrible but sure let me go run 3 miles
2026-07-19 23:23:36
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Rapid Eye Movement :
It took me years to get diagnosed, somehow my nephrologist caught it as soon as I told him everything started after I caught mono at 16. He flat out said “if you exercise you will die. don’t do it.” He calls it ME only. Chill guy, it’s just hell trying to schedule appointments 😅
2026-07-19 17:51:16
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Krispy Kreme :
pcos was renamed to pmos for the sake of women's health and terminological accuracy. I do hope that they make the same change for the better for this.
2026-07-20 11:01:33
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kesthulhu :
I'm convinced that this is the reason I've been denied social security disability (SEVEN times). My chart said CFS so that's what's on my application, among others. I finally got my doctor to update my chart to ME/CFS. It won't help me for SSDI but at least I can call it ME for future stuff
2026-07-20 00:04:12
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adam ₊˚⊹♡s Moira & Mon Mothma :
It IS that deep.
2026-07-19 23:16:27
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kim :
looking forward to researchers finding the mechanism of action so we can name it accurately as MDFWRS (Mitochondria Don't Fuckin Work Right Syndrome) or whatever
2026-07-19 21:48:03
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Getonwithyou 🇬🇧 :
Told a social worker I was now housebound due to my ME. She asked my doctor to call me. His opening words were sarcastic: “I’m told you’re feeling a bit tired due to your ME. What do you want me to do? Call an ambulance?” This is the sort of gaslighting we get from the medical profession here in the UK. It’s a joke.
2026-07-20 06:59:17
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C :
a paper on 2015 supported calling it SEID systemic exertion intolerance disorder. mental, physical, emotional, environmental etc
2026-07-19 16:26:30
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asher 🌼🕳️|🎨💀|📺💥|😎🍊👍 :
You are correct you are not being dramatic I highly suspect i have ME and people telling me just to exercise and push through are directly responsible for how bad im getting i dont have access to mobility aids and because of that im almost completely housebound, and stuck in bed like 80% of the day
2026-07-19 16:19:53
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gooby255 :
like what if they called tuberculosis “coughing syndrome”
2026-07-25 02:22:18
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aho_sera :
A lot of people AND doctors think chronic fatigue for another illness or from neurodivergence is the same as chronic fatigue syndrome. I have never heard about ME before I had it - now I absolutely don’t understand how society and medecine are dismissing these ME patients and leaving them bedridden and in pain for years and years…
2026-07-19 16:14:18
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MoonPie :
At this point I’m 100% convinced we (the I’ll/disabled community) know more than our doctors and are still just being forced to get them to put something on a piece of paper to validate us to the non-disabled community.
2026-08-16 16:50:46
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Ylianne :
I have fnd and had similar ableist experience, with people treating it like psychosomatic and forcing mr to exercise wich made me flare up. Like the specific illness matters sm, you cant just heal all illnesses the same way my fatigue is not the same as your fatigue and i need other treatment. I am so sick of people lumping chronic neurological and psychosomatic issues together its stupid and dangerous. I hope u understand what i mean i dont compare me to you i am saying i had a similar experience of people lumping my illness with others that actively harmed me
2026-07-19 19:05:59
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🌈♾️/ ♿️🌻 :
I almost didn't get diagnosed bc I didn't say fatigue as my main symptom. had to write out an entire document explaining my symptoms and relating them to ME before they even considered it just bc I didn't say fatigue was my main symptom
2026-07-19 18:01:38
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Christina Terry :
AGREED. The name Chrinic fatigue is so fucking misleading. My disability judge is turning me down from getting disability because of this. It’s so fucking annoying
2026-07-20 07:28:37
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tawnyy_frogmouth :
my friend died from ME two weeks ago. They stopped being able to swallow or digest. They died slowly, of starvation and dehydration. It was hard for them to even get palliative care because it's not seen as a potentially fatal illness. They were bedbound for 4 years. Died a month before their 26th birthday.
2026-08-31 16:59:10
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CozmicDebris :
Please never stop saying this 🥲 I stopped pursuing the mecfs diagnosis because every. single. doctor. told me "hey just be more active and you'll be fine 🙂 👍" As im explaining to them that I'm not able to recover from activity & transforming from a person who could easily deadlift their own body weight to someone who can barely support their own body
2026-07-19 21:25:53
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Nadine Junglas :
❗❕We should rename it to ME/PEM ❗❕
2026-07-20 09:02:12
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