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i can report that rage can be easily triggered by neuroinflammation which we know covid can cause, as does ME/CFS and so on. and that neuroinflammation as a symptom is treatable. there may be cases of permanent changes but i wouldn’t rule it that way until inflammation tx
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i haven’t done a rant for a long time bc frankly, my brain can’t sustain it. it needs a nice cushion of fluid to float in before i can handle sustained (and clever) outrage over anything. i just can’t do it with a cfs leak. here’s hoping monday goes well.
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as a “cfs/me” patient since 2009, let me confirm: most of the people who get sick and never get better are high-achieving and driven people. there’s clearly a link.
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"All of the kids we've seen have been high-achieving," Yonts said. "Straight-A students, prospective Division I athletes, musicians, artists. They went from super high-functioning to not being able to get out of bed." A must read piece on #LongCovid kids salon.com/2022/01/22/the
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cfs leak is a sort of auto-gaslighting disorder. i feel so much better lying down — and, for a little while, when upright again. and think, "well, maybe it's not really happening??" but now i've been upright for about 45 min and the tinnitus and dizziness are back, so…
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patients and some scientists think there is a link between the high-achieving part and coming down with CFS/ME aka “getting a virus and never getting better,” aka long covid. there is a super high prevalence of EDS/adhd/autism. it is a punishing flip side of smart & driven.
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there are a lot of different treatments for ME/CFS, tho no one size fits all and no cures. please stop saying there aren’t treatments - it harms people who could benefit from the many treatments that do exist.
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the chance of long covid — aka CFS/ME, aka the thing that i got — is between 10-30% for young people who have a mild case. so yeah. just bc you’re ignorant and unable to do basic risk assessment doesn’t mean everyone else is.
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you’re not being melodramatic!! there’s no fatigue like ME/CFS fatigue. it’s been quantified as worse than congestive heart failure. please take it from someone who learned the hard way, rest as much as humanly possible. rest dramatically lowers your risk of permanent damage
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i know you’re being satirical but you’re too on the nose bc EBV cause CFS/ME aka long covid before covid existed. 👋 i had either h1n1 and/or a relapse of mono in 2009 and never got better but i DID develop a super rare neurological autoimmune disorder (but not MS)
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👍 i also noticed how serious covid (cytokine storm) and long covid were just like cfs/me/mcas. i had the type of long covid where it’s “just” a long infection, 4 months of fever. but did not get the post-viral LC… i’m pretty sure bc i was already on a basket of MCAS meds!
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the number of times i’ve met somebody with dysautonomia, or ME/CFS, or a cluster of autoimmunity and said “do you have EDS?” and they said yes OR they didn’t think so but a few extra questions showed they *totally* do… well my hit rate is 100% basically
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booster making me super hyper so i think my cfs leak isn’t an issue - but surprise! it is! and now my whole face and scalp is tingling like when you lick a D battery!
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idk if you know this but that’s a common problem, mono causing ME/CFS. if you feel still affected but haven’t dug into support groups or research, it exists & is waiting for you
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don’t exercise, seriously. long covid (like me/cfs) can be triggered by over-exertion. just rest as much as possible. don’t go walking.
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this is pretty typical of ME/CFS. there’s a bunch of potential causes, which is exhausting but the fact that you have better days is very hopeful
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i’ve had me/cfs since 2009, there are a lot of treatments altho no cure! if your doctors aren’t helping you, there are some things you can try on your own. long covid has a high % of MCAS & most MCAS first line treatments are over the counter incl supplements.
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think you just mean “applications” but yes! even tho i’m a bit bitter that NOW post-viral stuff is getting studied (but not enough), you must be right. seems like maybe 2/3 or more of long covid is just like ME/CFS with the other 1/3 or so stuff that may be unique to covid
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