#me-cfs — Public Fediverse posts

look, I try not to overshare, but there's something that I need people to understand so I'm writing it and my reason is "I'm a bard and a succubus, what did you expect? :bear_shrug: " (in return, I'll use capital letters and punctuation and stuff)

I and a lot of others disabled by long covid repeat the same line over and over: mask up and do what you can to prevent spread.

But... I don't think people quite get the reality of disability via long covid and me/cfs. I'm not missing a limb or a sensory organ. Physically, my body exists in its entirety. The underlying systems, though? absolutely shot. I went from being able to heavily exhert myself over 8~10h per day to not being able to stand more than 5 minutes before needing multiple hours of lay-down rest. What's more, me/cfs means over-exherting myself *decreases* my max stamina unlike a healthy mammalian body.

Simply put, this means I can't have sex. 5 minutes of exhertion could set my already shot systems back a month or more. 10+ minutes could set me back half a year. (Of course, this also means I can't do any other sort of activity that involves anything physical and that includes talking which I get to do 1 hour of per week.)

Oh, what's that? Partner literally in bed, both of us wanting to do things? Too bad. Frustrated from not being able to have sex for over a year despite multiple chances to do so? Too bad. Want to at least give myself some relief? How many months of recovery am I willing to throw away?

No matter how pent up I get, no matter how many chances and willing partners I have, I can't do anything about it unless I'm willing to further destroy what little function I have left.

By not making and taking other precautions, that's the hell that you attempt to kick people into. On purpose.

#Disability #Covid #LongCovid #MECFS

p.s. Just to super clarify, there is no way for me to efficiency my way out of this reality. I could be an absolute pillow princess and do 0% of the work and that would still cause my body damage after 5 minutes, probably sooner.

I've been reading up on some interesting topics and have a few ideas, but have not posted on them since I feel like I need to read and study more before I post. At the rate I'm going - this might never happen.

So here are some quick notes on what I've been reading up on lately -

potassium - it's great stuff. It lowers blood pressure and promotes blood sugar regulation. What spikes bp and glucose - stress. Could potassium supplementation blunt the effects of stress overall? Perhaps -

Rapid treatment of depression with potassium supplementation: relative deficiency of potassium ions and possible pathogenesis—a case report [2025]
https://doi.org/10.1186/s13256-025-05693-2

However, people should consult their doctor before supplementing with potassium since it is can be dangerous to people with kidney disease (and many people are unaware they have chronic kidney disease) or if taking certain medications.

Then I was wondering how potassium supplementation might impact anemia and iron regulation since RAAS inhibition can cause anemia. I turned up a bunch of articles on the topic, but have not yet read them. It might explain why blackstrap molasses is a folk remedy for anemia (recommended to me by a Red Cross nurse) . It contains some iron, but not that much; however, it does contain a a fair amount potassium (but unfortunately it also often contains lead). The most notable micronutrient in blackstrap molasses is copper.

I'm really excited by an article I turned up the other day on one of my favorite topics - CO2. There's the mystery of hypocapnia in ME/CFS in the absence of tachypnea (rapid breathing). The assumption is that it must be caused by the other form of hyperventilation, hyperpnea (deep breathing). *

My daughter had her arterial CO2 measured and was found to be hypocapnic. I was with her at the blood draw; she was not breathing rapidly and her posture isn't conducive to deep breathing. So I have wondered ever since - what's up with CO2?

* my hypothesis essay from 2022 :
Carbonic anhydrase activity is increased in myalgic encephalomyelitis/chronic fatigue syndrome
https://docs.google.com/document/d/14rywcV63DLOvHBGr9aGC155it5j2dA9EJJHVAGTsPlI/edit?usp=sharing

My hypothesis doesn't really explain why end tidal CO2 might be lower, since CO2 would have to be off-loaded eventually.

Last week I stumbled on this medical hypothesis paper while looking into whether lower esophageal sphincter function is affected by CO2 (apparently it is):

Theory of gastric CO2 ventilation and its control during respiratory acidosis: Implications for central chemosensitivity, pH regulation, and diseases causing chronic CO2 retention [2011]
https://doi.org/10.1016/j.resp.2010.12.001

Gastric CO2 ventilation!!!
This is just - wow!
The article is paywalled but I was able to obtain a copy through Elsevier's Patient Access program. It is not easy reading and it will take me a while to get through it.

I also found a few articles on diaphragmatic breathing for the treatment of GERD - there have been some successful clinical trials. I may post on that topic soon since these should be quick reads and I don't think many people know about it.

#breathing #CO2 #GERD #potassium #anemia #MECFS #RAAS #hyperventilation