Chronically Surviving

You are such a star! 🌟

For years (pre-pandemic severe ME too), I thought my pelvic floor was f*cked. Huge clots of blood were literally falling out of my vagina when I'd get up in the morning -- before I could even make it to the toilet.

Turns out, my pelvic floor is ok; my blood is not.

If anyone wants to look into this (+ chat about how to use gender-neutral language in this kind of research), I'd love to hear from you!

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I know it's rudimentary/subjective/whatever, but I *really* think menstrual blood is a huge untapped resource in ME/LC research.

Especially given the demographics. Easy, monthly access to observing what our blood looks like (and how it changes) could reveal a lot, I think.

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...wait. Holy moly this is something I have seen change with my period. I was so busy focusing on the obvious, huge clots that I hadn't consciously thought about blood colour until now.

Reduction in clots + change in blood colour since taking fibrinolytic/proteolytic enzymes since Feb.

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Curses! I knew it wouldn't be that simple, haha.

Yeah, I wonder about the blood pressure thing -- mine is borderline low when I'm lying down, but it rises when I stand. Unfortunately, standing for long enough to test various things isn't possible...but maybe I could see if my supine BP is affected?

Is the Long COVID Field Missing a Major Opportunity? - Health Rising Geoff’s Narration The GIST   From viral persistence to complex immune studies, to tissue sampling, to assessing heavy-duty immune treatment trials and large treatment trials, long-COVID researchers ar...

Maybe there's another hint there re. subtype? How that might all connect to the CO2 stuff?

4) User 'dejurgen' discusses some chemistry in the comments of this Health Rising article. It's too complex for me to follow, but there is also some mention of CO2:

www.healthrising.org/blog/2025/09...

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3) Remember #TheAcidTest? Some people had sky-high lactate and others (including me) had run-of-the-mill lactate.

I think the only 'high' reading I had was when I had a bad reaction to 40mg Prednisolone and it induced lactate/lactic acid in my limbs (like I'd been running the day before).

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2) Hypocapnia (low blood CO2) is associated with alkalosis.

@andrewg76201347.bsky.social mentioned finding bicarb baths helpful for offsetting lactate. In contrast, when I tried a bicarb bath, it made me unwell (which would tie in with the alkalosis).

The cerebrovascular response to carbon dioxide in humans Two mechanisms control brain blood flow by changing blood vessel diameter: autoregulation maintains flow in the face of perfusion pressure changes, and brain metabolism adjusts flow to meet metabolic ...

from this article: pmc.ncbi.nlm.nih.gov/articles/PMC...

--> maybe blood pressure comes into it too + potentially intercranial pressure?

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1) "Carbon dioxide (CO2) increases cerebral blood flow and arterial blood pressure. Cerebral blood flow increases not only due to the vasodilating effect of CO2 but also because of the increased perfusion pressure after autoregulation is exhausted."

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Damn, I'm sorry masks make things harder for you. *hug*

That's interesting about subtypes and I wonder if there's a connection too!

Some things that jumped out at me that I didn't include in my thread were:

So…is this of interest to anyone else? Does it sound like there might be a connecting thread here?

Tagging people who I think might be interested:

@angryhacademic.bsky.social @naomidharvey.bsky.social @andrewg76201347.bsky.social @jeshyr.bsky.social

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For me, this feels like a simple measure that may improve blood flow, incl hopefully to the brain (which van Campen et al have demonstrated is reduced in ME).

I don’t know if there are contraindications (e.g. conditions mentioned as hypercapnic in the ‘Bench-to-bedside review’ linked above).

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...I’ve been wearing a mask more often during the day. I’ve noticed improved temperature regulation, can feel improved blood flow in my limbs, it seems to lower my pulse rate and raise blood oxygen levels (I don’t have a smart watch, but have noticed this on my pulse ox).

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If I’m understanding this correctly, supplemental CO2 can be helpful for patients with hypocapnia (low blood CO2).

Is this something we can experiment with just by wearing masks while at rest?

While I’m not entirely sure + the maths re. CO2 percentages is beyond my abilities at the moment…

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Bench-to-bedside review: Carbon dioxide - Critical Care Carbon dioxide is a waste product of aerobic cellular respiration in all aerobic life forms. PaCO2 represents the balance between the carbon dioxide produced and that eliminated. Hypocapnia remains a common - and generally underappreciated - component of many disease states, including early asthma, high-altitude pulmonary edema, and acute lung injury. Induction of hypocapnia remains a common, if controversial, practice in both adults and children with acute brain injury. In contrast, hypercapnia has traditionally been avoided in order to keep parameters normal. More recently, advances in our understanding of the role of excessive tidal volume has prompted clinicians to use ventilation strategies that result in hypercapnia. Consequently, hypercapnia has become increasingly prevalent in the critically ill patient. Hypercapnia may play a beneficial role in the pathogenesis of inflammation and tissue injury, but may hinder the host response to sepsis and reduce repair. In contrast, hypocapnia may be a pathogenic entity in the setting of critical illness. The present paper reviews the current clinical status of low and high PaCO2 in the critically ill patient, discusses the insights gained to date from studies of carbon dioxide, identifies key concerns regarding hypocapnia and hypercapnia, and considers the potential clinical implications for the management of patients with acute lung injury.

and this ‘Bench-to-bedside review: Carbon dioxide‘ discusses hypocapnia, hypercapnia and critical illness

ccforum.biomedcentral.com/articles/10....

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Carbon dioxide therapy in hypocapnic respiratory failure Oxygen therapy, usually administered by a facemask or nasal cannulae, is the current default treatment of respiratory failure. Since respiration entai…

This link to the abstract of Julu et al’s (2015) ‘Carbon dioxide therapy in hypocapnic respiratory failure’ mentions the brain stem (which comes up a lot re. ME)

www.sciencedirect.com/science/arti...

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Supplemental CO2 improves oxygen saturation, oxygen tension, and cerebral oxygenation in acutely hypoxic healthy subjects Oxygen is viewed in medicine as the sole determinant of tissue oxygenation, though carbon dioxide homeostasis is equally important and clinically often ignored. The aims of this study were as follows:...

A 2020 study by Stepanek et al found that ‘Supplemental CO2 improves oxygen saturation, oxygen tension, and cerebral oxygenation in acutely hypoxic healthy subjects’

pmc.ncbi.nlm.nih.gov/articles/PMC...

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Hypercapnia and Orthostatic Tolerance in Postural Orthostatic Tachycardia Syndrome The mechanism behind postural orthostatic tachycardia syndrome (POTS) involves many causes including a sympathetic nervous system problem. Blood gases, like carbon dioxide (CO2), have an important eff...

The University of Calgary has a study underway “to determine if higher CO2 levels have any effect in lowering heart rate and reducing POTS symptoms when upright/standing”.

Details here: ctv.veeva.com/study/hyperc...

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Jacquie Baker also talks about Hyperventilation and POTS here (transcript included on the linked webpage): www.standinguptopots.org/potscast/hyp...

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Reduced Stroke Volume and Brain Perfusion Drive Postural Hyperventilation in Postural Orthostatic Tachycardia Syndrome:

Furthermore, Baker et al’s (2024) article ‘Reduced Stroke Volume and Brain Perfusion Drive Postural Hyperventilation in Postural Orthostatic Tachycardia Syndrome’ discusses physiological reasons for hyperventilation.

www.jacc.org/doi/10.1016/...

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Hypocapnia increases the prevalence of hypoxia-induced augmented breaths | American Journal of Physiology-Regulatory, Integrative and Comparative Physiology | American Physiological Society Augmented breaths promote respiratory instability and have been implicated in triggering periods of sleep-disordered breathing. Since respiratory instability is well known to be exacerbated by hypocap...

...notes that hypocapnic-hypoxia “dramatically increased” augmented breaths, which resolved with the addition of 5% CO2 to the inhaled air. The mention of hypoxia caught my eye because of discussions around hypoxia + ME.

journals.physiology.org/doi/full/10....

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People who suddenly develop air hunger HAVE NOT spontaneously “forgotten” how to breathe. It makes more sense to me that air hunger/hyperventilation would be linked instead to pathophysiology.

Bell et al’s (2009) ‘Hypocapnia increases the prevalence of hypoxia-induced augmented breaths’...

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Often articles and blogs on hypocapnia blame patients for “not breathing properly”.

I’m VERY skeptical about the “it’s all your fault” approach.

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Hypocapnia is a biological marker for orthostatic intolerance in some patients with chronic fatigue syndrome Patients with chronic fatigue syndrome and those with orthostatic intolerance share many symptoms, yet questions exist as to whether CFS patients have physiological evidence of orthostatic intolerance...

Hypocapnia (low blood CO2) has been found in pwME and pwPOTS:

(a) pmc.ncbi.nlm.nih.gov/articles/PMC...

(b) translational-medicine.biomedcentral.com/articles/10....

(c) pubmed.ncbi.nlm.nih.gov/37227184/

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So, why was I feeling better when masking at rest? Could it be somehow linked to an increase in inhaled CO2?

I did a bit of digging, found a lot of patient-blamey nonsense, and some interesting stuff about Carbon Dioxide and its effects on the body.

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Because I’m bedbound and effectively sealed off in my darkened room all day, I’ve only been masking for medical visits + when there’s a risk of infection from household members.

These are all times of higher exertion for me, and I haven’t done much masking while specifically *at rest*.

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At the time, I tried the paper bag technique (+ felt slightly better). Also, following a bad morning, I noticed feeling better after masking for a nurse’s visit.

But I was focused on getting some big GI problems under control, so kept a paper bag “for emergencies”, and forgot about all this.

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I remembered a discussion on other social media a year or so ago about ME/POTS, hyperventilation and breathing into paper bags.

[Side note: While I have severe ME + POTS, I haven’t had air hunger or obvious hyperventilation (although this doesn’t always manifest stereotypically).]

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A few weeks ago, some painting work was happening in my house. I’m very sensitive to smells, so I wore a mask while the painter was here (~7h/day) for 3 days, only removing the mask for food/water.

What surprised me was that I felt a bit better on those days.

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