Alexis M.
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turnoftheshrew.bsky.social
Alexis M.
@turnoftheshrew.bsky.social
Here for the latest research + advocacy for Long Covid, ME/CFS, dysautonomia, connective tissue disorders, etc + disability justice community. Former HCP.
Pinned
In case anyone else needs this today: the best advice I ever read about #MECFS was “no one else is going to lie in that bed for you.” The decisions, fragile routine, the totally altered perspective on life— they don’t have to make sense to anyone else, bc they don’t have to live w/ the consequences.
Watching someone you know descend into pseudoscience quackery is wild. If you question or disagree w/ them they blame it on resistance & fear of the “truth.” Yet they can’t see that they themselves are so afraid of the actual truth that they constructed a little cocoon of nonsense just to cope?
December 4, 2025 at 4:23 PM
Reposted by Alexis M.
NEW preprint

Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID
S. Gardner et al.

#ME/CFS #LongCOVID #GeneticRiskFactors
Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID
Background: Myalgic encephalomyelitis (also known as ME/CFS or simply ME) has severely impacted the lives of tens of millions of people globally, but the disease currently has no accurate diagnostic t...
www.medrxiv.org
December 3, 2025 at 7:42 PM
Reposted by Alexis M.
“Non-disabled people do not expect anger. Loneliness, gratitude, and a quiet resilience are the emotions we are allowed to express. However, as Wong shared, in many tweets, blog posts, essays, and talks, “f— that s—!””
December 3, 2025 at 6:07 PM
Reposted by Alexis M.
Today is Giving Tuesday! All Donations tripled!

We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do.

Donate now and be a lantern for all of us! meaction.net/donate
December 2, 2025 at 9:06 PM
Reposted by Alexis M.
We're thrilled to announce that thanks to two generous donors, the Silver Giving Foundation and Lunardelli-McRee family, all donations made to PLRC will be matched up to $100K through January 1 of next year!

Support our work: patientresearchcovid19.com/donate/
December 2, 2025 at 8:56 PM
Reposted by Alexis M.
I’m excited to share my latest work, “The Small Life.” It explores the little things that still bring me joy as I navigate #LongCovid and #MECFS. #ChronicIllness

substack.com/home/post/p-...
The Small Life
Calculating Worth with Diminished Returns
substack.com
December 1, 2025 at 9:28 PM
Reposted by Alexis M.
Now >900 LoCITT-T participants.

We're close to a last call for participants!

Still hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
December 1, 2025 at 5:20 PM
Reposted by Alexis M.
This world aids day, if you don’t already, please follow and read the stories of those who went before on
@theaidsmemorial.bsky.social
December 1, 2025 at 12:57 AM
Reposted by Alexis M.
Remarkable story of a Georgia high school team who used CRISPR to make a rapid diagnostic test strip for Lyme disease, speeding dx from 2 weeks to days
www.cbsnews.com/news/teens-m...
Teens may have come up with a new way to detect, treat Lyme disease using CRISPR gene editing
To compete at iGEM, a sort of science Olympics, teens at a Georgia high school set their sights on finding a better way to detect and treat Lyme disease. Their approach uses CRISPR gene editing.
www.cbsnews.com
December 1, 2025 at 4:06 AM
Reposted by Alexis M.
TEDx Talks: "How persistent pathogens could accelerate the aging process by Amy Proal"

'..gut tissue collected from a person with long COVID almost 2 years after..here's the thing, these chronic pathogens are the closest thing there are to hackers of the human body"

www.youtube.com/watch?v=XMcV...
How persistent pathogens could accelerate the aging process | Amy Proal | TEDxBoston
YouTube video by TEDx Talks
www.youtube.com
November 30, 2025 at 5:39 PM
Reposted by Alexis M.
I'm too busy helping people to learn how to help them properly.
- Doctors everywhere #NEISvoid
November 29, 2025 at 5:45 PM
Reposted by Alexis M.
“Long Covid only happens to leftists”

Or society’s ableism is so rampant and devastating that becoming disabled commonly functions as a radicalizing experience. Who can say.
November 28, 2025 at 1:21 AM
Reposted by Alexis M.
Nice review from Tim Henrich et al laying out a framework for thinking about how the complex landscape of prior, concurrent, and subsequent microbial infection (viral, microbial, fungal) may interact w Covid infection and whether that might play a role in Long Covid elifesciences.org/articles/106...
The role of co-infection in the pathogenesis of acute SARS-CoV-2 infection and development of post-acute sequelae: A perspective
Unraveling mechanisms underlying post-acute SARS-CoV-2 sequelae (long COVID) and finding therapeutic solutions require a full understanding of the causative role of SARS-CoV-2 persistence and/or infec...
elifesciences.org
November 27, 2025 at 11:36 PM
Reposted by Alexis M.
The stereotype of the "heroic crip" who overcomes all obstacles mostly benefits the healthy and able-bodied who need to feel better about #disability while ignoring the vast majority of disabled people. We see it everywhere: the pornography of suffering.

#MECFS #chronicillness #NotYourPosterChild
November 28, 2025 at 6:10 PM
Reposted by Alexis M.
Wow this is a great essay.

#NEISvoid
The Sick Times: 'You know someone with Long COVID. They need you to ask about it genuinely.'

Written by Philip Hoover

'If community-building is a bulwark against autocracy, then asking after one another might be a good place to start.'

thesicktimes.org/2025/11/28/y...
You know someone with Long COVID. They need you to ask about it genuinely. - The Sick Times
If community-building is a bulwark against autocracy, then asking after one another might be a good place to start.
thesicktimes.org
November 28, 2025 at 7:56 PM
Reposted by Alexis M.
Well said by my friend @osayko.bsky.social.

Thinking of you #NEISvoid.
November 27, 2025 at 3:16 PM
Reposted by Alexis M.
There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.

There's time for new folks to join!

We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
November 26, 2025 at 6:40 PM
Reposted by Alexis M.
A whole page of books by people with #MECFS!! (My book is not here bc it’s been on my todo list for like… 8 months to get it added 🤦‍♀️) #BookSky #ChronicIllness

Get some books!

chronic.market/chronic-illn...
Books by Authors with ME/CFS and Related Chronic Illnesses – Chronic Market
chronic.market
November 25, 2025 at 4:47 PM
Reposted by Alexis M.
7) Link to the paper:

Sanchez et al. 2025. The sensitising effect of IgG in fibromyalgia syndrome is mediated by Mrgprb2 in mast cells.
The sensitising effect of IgG in fibromyalgia syndrome is mediated by Mrgprb2 in mast cells
Fibromyalgia syndrome (FMS) is characterized by elevated levels of immunoglobulin G (IgG), altered bowel habits, and increased pain sensitivity, suggesting immune dysregulation, but the exact mechanism remains unclear. Here, we found that FMS-IgG binds to mast cells in a MRGPRX2/b2-dependent manner, leading to mast cell recruitment and IL-6 secretion. Transferring serum-IgG from FMS patients to mice induced FMS-like symptoms and increased skin mast cells, indicating that FMS-IgG acts through mast cell activation. The ablation of mice Mrgprb2 mast cells or deleting Mrgprb2 receptors prevented IgG-induced heightened sensitivity to mechanical and cold stimuli. Stimulating human LAD2 cells with FMS IgG elicited MRGPRX2-dependent IL-6 production. Consistent with mice findings, mast cell density and tryptase levels increased in human FMS skin samples compared to healthy controls. Taken together our results suggests that FMS IgG mediates hypersensitivity via activation of mast cells bearing the MRGPRX2 receptor and that these cells are a potential therapeutic target. ### Competing Interest Statement X.D. is the scientific founder of and consultant for Escient Pharmaceuticals, a pharmaceutical company developing drugs targeting Mrgprs. X.D. collaborates with GlaxoSmithKline (GSK) on Mrgpr-related projects unrelated to this manuscript. Other authors declare no competing interests. Howard Hughes Medical Institute, https://ror.org/006w34k90 Pain Relief Foundation, https://ror.org/0017mh436 Versus Arthritis, https://ror.org/02jkpm469, 22471
www.biorxiv.org
November 25, 2025 at 11:05 AM
Reposted by Alexis M.
Reposted by Alexis M.
People in the UK with #ME and #LongCOVID can complete the Big Survey, which is run every five years. There is a separate survey for under 17 year olds. The deadline is 27th January 2026. You can complete the survey online or on paper.
Our 2025 Big Survey is now open! 🎉

For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/

Thank you for supporting our research💙

🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
October 15, 2025 at 11:49 AM
I’ve always felt unattached, even overwhelmed, by stuff (material items). I loved a good closet clean out, like ditching dead weight. I just wanted experiences. The irony of being shut up inside my house by this illness, surrounded by stuff, kept away from experiences is… really something. #MECFS
November 24, 2025 at 10:20 PM
Reposted by Alexis M.
From Germany:

Fatigue in Post-COVID-Condition is accompanied by hypoperfusion of right-occipital areas

journals.plos.org/plosone/arti...

"A significant inverse association was present between fatigue (assessed by the WEIMuS-score) & CBF in the right middle and inferior occipital gyrus”
#LongCovid
Fatigue in Post-COVID-Condition is accompanied by hypoperfusion of right-occipital areas
Background and purpose A proportion of individuals recovering from COVID-19 continue to experience persistent symptoms, including fatigue and cognitive difficulties — a syndrome commonly referred to a...
journals.plos.org
November 24, 2025 at 4:34 PM
Reposted by Alexis M.
I'm Not Ignoring You, I'm Too Sick To Talk: A Memoir
November 23, 2025 at 4:15 PM