it hurts so bad knowing that deep down no one, not even your loved ones and caretakers, actually thinks you're disabled. especially when you have an invisible disability. they all think you're faking, or overreacting, or just misattributing other issues. even when they've seen you crash or struggle to do anything, laying paralyzed with pain. if you get vulnerable around them and talk about the feelings you have about it, they will still say things like "well if you just did [thing you've already done] but [changed an arbitrary variable.]"
there's a deep-seated need to believe that if they were in your position, they'd do it better. they'd cure themself with the power of positive thinking or grit or cleverness. they wouldn't let it get them down, they'd keep pushing, they wouldn't get burnt out, they'd try things you didn't think to or keep trying things you stopped. they have to think it's your fault, so they don't get scared it'll happen to them.
let me tell you this, person with ME/CFS or long covid:
the day after you really exceeded your energy limits, you are probably gonna feel OK. maybe a little tired, but little enough that you think, maybe you got away with it. But, its a trick. In a few days is when the crash will actually hit, and it will only be worse if you don’t take precaution asap.
It’s super important, since we can’t always avoid exertion, to try your best to 1. incorporate rest into normal activity. take several days to do one chore, its not illegal. and 2. always rest before you feel like you need to, especially if you’ve had particularly active days recently.
Covid is the number 1 cause of MECFS right now, an incurable disease affecting millions of people where expending any amount of energy can leave you permanently bed bound or dead. Watch this video
Including Taylor's text because it's pretty succinct and important.
It reminded me of being asked "what's up with COVID" in a "why is it something to worry about" way. People still don't understand what "long COVID" can actually entail.
It's not "just" some random symptoms for a few months. Some people with ME/CFS are left with such poor quality of life that not only are they unable to work or partake in anything they did in their previously healthy lives, but some even call it "worse than death".
Or maybe, like some of my previously-young-and-healthy friends, you'll be "lucky" and "only" suffer semi-reparable organ damage: heart, eyes, brain.
COVID is not the only one, it's just the worst we've dealt with in recent years. Even a bad flu can result in post-acute sequelae / chronic illness, even ME/CFS. Measles can lead to encephalitis, pneumonia, deafness, blindless...
And yet the government we must now contend with in the US threatens to dismantle every last protection we have against diseases like these. The push to "vax-n-relax" was already bad enough on its own, with many states attempting mask bans.
Now there's RFK Jr. at the helm of Health & HS: a hypocrite who spreads anti-vax messaging (while actually vaccinating his own children), tried to revoke the life-saving COVID vaccines, with blood on his hands from an outbreak he caused, and says we'll just give disease research "a break".
The American healthcare system has issues, for sure. But this certainly will not fix them. This regime is positioned to do so much harm, and already has.
From Medscape (widely read by health professionals)
Post-Exertional Malaise in Fatiguing Diseases: What to Know to Avoid Harmful Exercise
A new finding of post-exertional malaise in 20% of people with fibromyalgia might be an overestimate, but when post-exertional malaise is pr
May require free registration
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“There are several lines of evidence for abnormal responses to exercise in people with PEM, Davenport said. These include muscle worsening, cardiac preload failure & impaired systemic oxygen extraction, metabolic dysregulation, & abnormal immunologic & neurologic changes”
Often times, being chronically ill is just like, I don't want to sleep anymore because I've literally slept all day, and my body will be like, but need sleep though.
let me open by saying I Know How This Sounds (fem whose undergraduate chemistry professor recommended ze take turmeric to cure zyr arthritis, etc) so no hard feelings if you keep scrolling, but hopefully folks who know me know i'm speaking honestly about my experiences, even if those don't end up being the same for other people. so!
2 Tbsp of a common kitchen spice is doing as much or more to manage my ME/CFS as any of my meds or self-medicating drugs
@lakeeffectbitch outlines a way of trying this with a control in their reddit post (link); i just went directly to the one they thought might work so i'll put my experiences & the science/theory behind this under a cut for folks who want to avoid potential placebo effect :)
i'll get more specific about this in the "spoilers" but please be aware, especially folks with diabetes or other blood sugar conditions, that this substance may cause a blood sugar drop. it's less likely at this dose but probably keep a sugary snack on hand just in case
if you experience post-exertional malaise & want to try this but don't have spare money to spend on spices feel free to dm me & i'll see if i can help!
my experience:
i took 2 Tbsp ground sumac mixed with warm water on February 11. i tried taking it with a straw first because that's what my colonoscopy prep had said would make that go down easier but because the sumac particles were so big they didn't want to remain suspended & trying to get them in the straw was difficult, which then made it harder to swallow without, yknow, noticing that you're slurping down sediment
what worked better was getting the powder wet, putting a big clump of it on my tongue, then swallowing it with water like a pill
within about half an hour of taking the sumac it was like my fatigue just faded around me where i stood. it dissolved to the background & when i thought "oh i want to do this" or "i should do that" suddenly i found myself just doing it. i had spent the past week at least bedridden except for the bathroom, & though i took the sumac on a better day, i'd been planning to return to bed with a snack after taking it.
instead, i made myself lunch, and i sat on the couch to eat it. all of this was without taking an edible that day; usually i've gotta take at least 25mg delta 8 + 25mg cbd to even consider sitting on the couch. also, it was storming.
from my write-up the day of: "everything felt very sharp & clear & lucid." i washed the dishes from my lunch. all of these activities were about 2 hours, & at that point i emphatically needed a nap. waking up felt like after taking a muscle relaxer & sleeping: my muscles were more relaxed, & my whole body felt like it'd gotten a bit of a break
i've taken sumac at least 8 times since then on at least 5 different days (this time by modifying this sumac tart recipe to include a lot of sumac powder in the crust, which has been much more enjoyable than the Glass O' Sediment lmao) & adjusting for factors like weather, the effect has been comparable every time:
i watched Inception on the couch with my husband, & understood when she explained things to me
i watched leverage on the couch all day when it was below freezing
i worked a bit on fanfics i've barely been able to touch in a year
i "meal prepped" measuring spices, gathering ingredients, & soaking beans to make beans & rice in the instant pot later that day. i literally can't remember the last time i was able to use my instant pot, after thinking about it i think it was when i made palak paneer last summer, but that was a one-off special occasion thing, i've used it maybe 3 other times since developing ME
i wrote this post
the science:
okay a lot of this shit was over my head before i developed ME so i'm gonna be summarizing at my level lol, look to @lakeeffectbitch for a higher-level analysis
but what i do know! (all images from "The malic acid inhibiting inflammation in ankylosing spondylitis by interfering M1 macrophage polarization" by Ji et al., January 2025)
sumac contains high levels of malic acid, which is found in certain fruits (apples, peaches, etc)
the drugs.com page classifies malic acid as an inactive ingredient, so there are no known drug interactions
mice with ankylosing spondylitis had lower levels of peripheral malic acid than control mice
ID: bar graph showing mice with AS had about 0.03 micromoles per milliliter of peripheral malic acid, compared to the control mice level of over 0.2 micromoles per milliliter. the difference is labeled significant via asterisks. end ID
mice with higher malic acid concentrations had lower ESR and CRP (inflammation markers)
ID: two graphs showing lines with a downward slope. the top graph, ESR versus malic acid concentration, is labeled: r=-0.6802, 95% confidence interval =-0.8843 – -0.2578, p=-0.0053. the graph shows ESR, an inflammation marker, decreasing as malic acid concentration increases. the bottom graph, CRP versus malic acid concentration, is labeled: r=-0.6068, 95% confidence interval =-0.8537 – -0.1371, p=-0.0165. the graph shows CRP, an inflammation marker, decreasing as malic acid concentration increases. end ID
mice treated with malic acid had lower levels of TNF-alpha than the mice with untreated ankylosing spondylitis. humira & similar biologics that treat autoimmune diseases are TNF-alpha blockers
ID: a bar graph of relative mRNA expression of TNF-alpha. M0, the control mice, has a relative expression of 1. M1, the mice with ankylosing spondylitis that did not receive treatment, has a relative expression of slightly less than 4.5. M1+MA, the mice with ankylosing spondylitis who received the malic acid treatment, has a relative expression slightly less than 3. this indicates that the mice treated with malic acid had lower expression of TNF-alpha than the untreated mice. asterisks between M0 and M1 and between M1 and M1+MA indicate significance. end ID
the mitochondrial function of M2 macrophages in mice treated with malic acid "was significantly enhanced"
analysis of the mice's spinal tissue blew my fucking socks off. trying not to jump to conclusions & i know journal articles are full of errors but that looks potentially disease-modifying.
ID: a 5x3 presentation of samples of mouse spinal tissue. the control mice, which are healthy, have thick, undamaged, glowing tissue. the mice with ankylosing spondylitis have thin, curved, cracked-looking tissue. the mice treated with celecoxib, a common prescription NSAID for arthritis, appear very similar to the untreated mice. the mice treated with 250mg/kg of malic acid per day have tissue in between the untreated and healthy appearances; the tissue is "glowing" like the healthy tissue but still narrower and curved, although less so than the untreated tissue. the mice treated with 500mg/kg of malic acid per day have tissue which looks even closer to the healthy appearance, with less curvature than the other treatment groups. end ID
since i started drafting this post i've started taking these malic acid supplements from Nature's Life – the full dose made me feel weird including some heartburn so i cut the capsules & take roughly 2/3 – 3/4 of it at a time (i drop the rest into a spare pill jar to make more doses from). it's been similarly effective for me
please be aware that the supplement instructions say to only take it once a day, i haven't had any issues but everybody is different & this avenue is definitely under-researched! (the mice were given 250mg/kg per day which for me would be like 27 grams but i am not a mouse lol)
