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stygimoloch

@stygimolochu.bsky.social

extant! poet, insufferable dittymaker, largely housebound charmer. collecting my ME/CFS research here w attempts at translating jargon into more accessible language they/them, as relevant

48 Followers  |  338 Following  |  16 Posts  |  Joined: 23.12.2024  |  1.8094

Latest posts by stygimolochu.bsky.social on Bluesky

Last things!!

a. I say ME/CFS&LC bc there's a period where someone has LC but doesn't definitively have ME/CFS, & Covid-19 can grant bonus organ damage/etc.

b. classic issues with ME/CFS studies are that they tend to be tiny & also sometimes shit. We're all doing our best!

14.07.2025 17:26 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

Now that the problem has hopefully been established, I'll follow up with potential ameliorating options in another post! Obviously a lot of debt owed to the health rising article--I've known about the deformability issue for a while, but I hadn't thought about it for a hot minute.

14.07.2025 16:33 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0
Preview
Erythrocyte deformability correlates with systemic inflammation Recent evidence suggests that systemic conditions, particularly those associated with inflammation, can affect erythrocyte deformability in the absencโ€ฆ

7 www.sciencedirect.com/science/article/pii/S1079979624000597
8 pmc.ncbi.nlm.nih.gov/articles/PMC...
9 pmc.ncbi.nlm.nih.gov/articles/PMC...
two links for RBC squish issues in ME/CFS&LC: pmc.ncbi.nlm.nih.gov/articles/PMC... Sakha et al. did 3 tiny studies
pmc.ncbi.nlm.nih.gov/articles/PMC...

14.07.2025 16:26 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
Preview
Are Barriers to Blood Diffusion Causing ME/CFS and Long COVID? The 2025 Charitรฉ International Conference Pt I - Health Rising Conference findings suggest multiple barriers to blood flows could be causing chronic fatigue syndrome (ME/CFS) and long COVID.

1 www.healthrising.org/blog/2025/06/28/blood-diffusion-chronic-fatigue-long-covid/
2 pmc.ncbi.nlm.nih.gov/articles/PMC...
3 pubmed.ncbi.nlm.nih.gov/19847056/
4 pubmed.ncbi.nlm.nih.gov/32417767/
5 www.cell.com/heliyon/fulltext/S2405-8440(24)17077-6
6 pubmed.ncbi.nlm.nih.gov/24246527/

14.07.2025 16:26 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

Systemic inflammationโ‚‡ and inflammation caused by oxidative stressโ‚ˆโ‚Šโ‚‰ are also associated with reduced RBC squish. Which! Classic ME/CFS&LC issues! I'm not even gonna half-assed cite for that!

14.07.2025 16:26 โ€” ๐Ÿ‘ 2    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

Oxygen doesn't get in, and carbon dioxide can't be taken away. This is a big fucking problemโ€“โ€“even when "convective oxygen supply" is fineโ‚‚.

You see a lack of RBC squish factor in a variety of conditions, like say iron deficient anemiaโ‚ƒ or diabetes (type 1&2)โ‚„โ‚Šโ‚…, or sickle cell diseaseโ‚†.

14.07.2025 16:26 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

Circulatory system! Plenty of fuckery here (see this Health Rising articleโ‚, for ex.)!

One consistent issue is reduced red blood cell (RBC/erythrocyte) squish factor (deformability). RBCs need to squish to get through narrow capillaries, etc. & when they can't then deliveries don't happen!

14.07.2025 16:26 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

Posting will be intermittent at best. I have no medical background, and none of this is medical advice. I don't anticipate anyone really seeing this, but if you do, and you have an interest in trying anything I talk about, please please talk to your doctor first. Interactions get complicated!

14.07.2025 14:54 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

When I have the energy I focus on elements of various systems, and look into treatment options that exist.

I've had CFS/ME for a decade, so I'm not expecting a cure, but anything that can sustainably get me a few percentile points is a good thing. Plus, what a puzzle!

14.07.2025 14:51 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

Pretty much any specialist you talk to about ME/CFS&LC is going to view it through the lens of their specialty. We don't have a gestalt view ("neuroimmune" is the best we've got), and I'm not ambitious enough to try and take that on. You see microfuckery in many major systems.

14.07.2025 14:51 โ€” ๐Ÿ‘ 1    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

Welcome to my research infodump era: ME/CFS & LC through a variety of lens, largely treatment focused.

I'm mostly doing this for myself, but if anyone has questions or could use a language breakdown please let me know and I'll do my best to help. References will be at the end!

14.07.2025 14:40 โ€” ๐Ÿ‘ 3    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
I suppose the time will come Emily Dickinson wrote this poem on the back of an invitation to a candy pulling party that George Gould, one of her brotherโ€™s friends, had sent her more than twenty-five years earlier.

www.themorgan.org/exhibitions/...

19.01.2025 21:01 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 0    ๐Ÿ“Œ 0

I believe the Day will be
When the Jay will giggle
At his new white House the Earth
That, too, halt a little โ€“

19.01.2025 21:01 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

I suppose the time will come
Aid it in the coming
When the Bird will crowd the Tree
And the Bee be booming โ€“

I suppose the time will come
Hinder it a little
When the Corn in Silk will dress
And in Chintc the Apple

19.01.2025 21:01 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0

per this book her handwriting is known to have changed over time, maybe because of her eye problems & the handwriting shifts are how a lot of her work is dated. however, I'm under the distinct impression none of her poetry was easy to decipher

19.01.2025 20:57 โ€” ๐Ÿ‘ 0    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
yellow aged rectangle of paper with penciled writing on itโ€”difficult to read, odd punctuation, many dashes. It's in a screenshot from a book and below the image it states Figure 1: Emily Dickinson, "I suppose the time will / come," poem written in 1876 on the verso of an invitation from George Gould dated 1850 (Catalogue 2.15, page 37).

yellow aged rectangle of paper with penciled writing on itโ€”difficult to read, odd punctuation, many dashes. It's in a screenshot from a book and below the image it states Figure 1: Emily Dickinson, "I suppose the time will / come," poem written in 1876 on the verso of an invitation from George Gould dated 1850 (Catalogue 2.15, page 37).

we already knew Emily Dickinson was wild but look at this, from The Networked Recluse: The Connected World of Emily Dickinson by Mike Kelly, Carolyn Vega, Marta Warner, Susan Howe and Richard Wilbur

19.01.2025 20:55 โ€” ๐Ÿ‘ 2    ๐Ÿ” 0    ๐Ÿ’ฌ 1    ๐Ÿ“Œ 0
Post image

ICE is planning immigration raids starting Tuesday. Please amplify.

19.01.2025 18:42 โ€” ๐Ÿ‘ 32362    ๐Ÿ” 24247    ๐Ÿ’ฌ 1166    ๐Ÿ“Œ 993

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