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Disabled fantasy: Being able to sit in the room with all the doctors who ever asked if you were maybe just making your symptoms up...while they experience your symptoms. And ask them if they're making them up
this post was submitted on 12 Jun 2025
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Chronic Illness
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A community/support group for chronically ill people. While anyone is welcome, our number one priority is keeping this a safe space for chronically ill people.
This is a support group, not a place for people to spout their opinions on disability.
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Be excellent to each other
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Absolutely no ableism. This includes harmful stereotypes: lazy/freeloaders etc
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No quackery. Does an up-to date major review in a big journal or a major government guideline come to the conclusion you’re claiming is fact? No? Then don’t claim it’s fact. This applies to potential treatments and disease mechanisms.
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No denialism or minimisation This applies challenges faced by chronically ill people.
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No psychosomatising psychosomatisation is a tool used by insurance companies and governments to blame physical illnesses on mental problems, and thereby saving money by not paying benefits. There is no concrete proof psychosomatic or functional disease exists with the vast majority of historical diagnoses turning out to be biomedical illnesses medicine has not discovered yet. Psychosomatics is rooted in misogyny, and consisted up until very recently of blaming women’s health complaints on “hysteria”.
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But the day you find a specialist that immediately gets you is glorious, just hope there is medication/treatment for it tho.
As someone with chronic fatigue due to long covid i can relate to this hard. I only had to wait 2 years to start with some experimental meds tho so not all is bad.
There's experimental meds for fatigue due to long covid? Would you feel comfortable sharing wahr this medication is? I sincerely hope that those meds work for u!!! Fatigue is... tiring (ba-dumz). But honestly, I think fatigue is such an underrated symptom that so many people don't understand...
The experimental meds are basically anything they gave someone for another reason which also seemed to have a positive effect on their daily energy levels.
So far I've tried: low dose naltrexon, mestinon and low dose aripiprazole. The first two had only negative effects while the last gives me a few more hours that I'm awake per day. From sleeping 20 hours in the worst case to about 12-16, I still can't do shit but at least I'm awake.
Thank you very much! Glad to hear that one of them could give you at least some relief, hope that your baseline improves further and that you got something nice to spend your time awake
Chronic Fatigue ≠ ME/CFS [Hallmark symptom of ME/CFS is PEM]
So sorry to hear you got post-COVID tho. Hope your baseline improves.
Thanks, I've only known about the chronic fatigue part of ME since the trial I'm involved in also has some ME patients trialing the same meds.
Edit: reading again i think their was a small miscommunication, I don't have MECFS, just something with similar symptoms so I know the feeling.
Yeah I mean...fatigue sucks. Like, as a symptom caused by the flu or sth. Chronic fatigue has to suck even more, like any acute illness that becomes chronic. And I yes, there is Post Covid type ME/CFS than also goes along with chronic fatigue as well as PME (and other debilitating symptoms such as severe pain etc.,). So not just PME. At least this is the way our specialist frames it/ named it. But maybe there is a translation issue/ language barrier, no native speaker here. Luckily I am just blessed with some rather annoying but mostly livable chronic diseases...but it hit my significant other, so that's why I asked in the first place about the medication, hoping for some hints about possible options...thank you for your well wishing :-)
I might want to add, "hope that your baseline improves " is a very good way of expressing well wishes to someone where you know that "get well soon" is just not the right way for someone with a chronic disease that doesn't get much or any better soon!!! Love it, will steal this ^^