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Alexis M. 🎃

@turnoftheshrew.bsky.social
1.7K followers 566 following 441 posts

begrudgingly online for chronic illness research & disability justice community. living meaningfully & unapologetically as a hermit against my will.

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Reposted by Alexis M. 🎃
#MEAction Network @meactnet.bsky.social · 14/10/2026
Have you signed up for our Halloween art workshop yet? It will be October 29th at noon ET- all online & free to join! ow.ly/yJBN50ZXIpn Orion Romero, a #pwME, educator, artist, & MEAction volunteer, will be hosting! Thank you, Orion! Join in & have fun! Register now!
Poster for Orion's Halloween Art Workshop on October 29, 2026, at 12:00 pm Eastern, featuring spooky paintings and spider web decorations. Paintings are by Orion Romero, the artist teaching the workshop. MEAction logo in bottom corner.
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Katie Klocksin, by the wayside @katieklocksin.bsky.social · 14/10/2026
“What is the physical, psychological and existential toll on immunocompromised people who want to co-exist safely, without condemnation and skepticism, in a mask-free world that seems indifferent to their condition?” www.forbes.com/sites/weskil...
Screen shot of a headline from Forbes: Unmasking the at-risk communities’ last ditch quest to coexist safely. Behind that is several photos of people wearing masks.
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 13/10/2026
Today @thesicktimes.org: Big feature by @khaoticaa.bsky.social exploring the immense challenges that trans people with Long COVID face in getting healthcare. "Neglect within healthcare and the queer community both contribute to the medical and social erasure of trans people."
thesicktimes.org
Trans people with Long COVID navigate a new “dark age” in trans health - The Sick Times
We spoke with and surveyed dozens of trans people navigating gender-affirming care and Long COVID during Trump’s second term.
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#MEAction Scotland @meactionscotland.bsky.social · 13/10/2026
The producers of a new documentary on ME/CFS and Long COVID, 'What Doesn't Kill You', are looking for people's experiences of living with these illnesses. Through an online video interview, people answer questions about their lives and experiences in their own words, from home.
whatdoesntkillyou.movie
What Doesn't Kill You | ME/CFS & Long COVID Documentary | Coming 2027
What Doesn't Kill You is a forthcoming documentary exploring the lives of people battling ME/CFS and Long COVID, scandalously underfunded and chronically ignored diseases.
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David Kaufman @kaufmanmd.bsky.social · 13/10/2026
Vindara Health, a new telehealth platform focused on care delivery for people with Long Covid, ME/CFS, POTS, MCAS, etc, is actively recruiting clinicians. We are currently seeing patients and have a long list of patients waiting to be seen. www.vindarahealth.com/careers
vindarahealth.com
Careers | Vindara Health
Open roles at Vindara Health, a remote telehealth clinic for complex chronic illness led by Dr. David Kaufman.
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Puff the Magic Hater @mskellymhayes.bsky.social · 13/10/2026
So, if you're feeling tired, burnt out, or discouraged, do what you've gotta do. Tend your wounds. Hug your cat. Watch some bad TV. Don't argue in circles with strangers on social media. Don't tell everyone they're doomed. The world does not need your particular spin on giving up.
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 12/10/2026
Enjoyed this book as well. Everest is safer but also full of trash and garbage from all the people 😭 I saw one video online of people at a standstill in a long queue waiting to continue their climb bc there was so many people. Wild
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 06/10/2026
Today @thesicktimes.org: @davetuller1.bsky.social recaps the recent ISLC-PAIS conference in Amsterdam, featuring clinical trial updates, talks on PEM, and more. thesicktimes.org/2026/10/06/b...
thesicktimes.org
Biological pathways and mechanistic trials centered at new Long COVID conference in Amsterdam - The Sick Times
Researchers, clinicians, and advocates gathered for the inaugural conference of the International Society for Long COVID and Post-Acute Infection Syndromes in the Netherlands in late August. The four-...
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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
Screenshot of the header of a published paper: 

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 05/10/2026
Great job, thank you for your work!
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Reposted by Alexis M. 🎃
betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 05/10/2026
Today @thesicktimes.org: @heatherhogan.bsky.social reviews a new comic book developed by children with Long COVID. "These superheroes showcase bravery by asking for help, resting, and being compassionate with themselves and others."
thesicktimes.org
Kids with Long COVID co-created their own superhero comic book - The Sick Times
Long Covid Superheroes showcases the bravery of asking for help, resting, and being compassionate with yourself and others.
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Billy Hanlon @bhanlon15.bsky.social · 02/10/2026
The Star (WA): 'Nurse now homebound from Long COVID: Only Congress can change what happens next' 'Long COVID is real. ME/CFS is real. It came for me, and it can come for anyone. What’s left is a single line in a spending bill and lawmakers willing to write it.' www.grandcoulee.com/story/2026/0...
grandcoulee.com
Nurse now homebound from Long COVID: Only Congress can change what happens next
I spent nearly 30 years as a nurse, including in an infectious disease clinic, before I stepped away, worn down by the relentless work. But when COVID swept the nation, I came back to help my fellow S...
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Anna Holmes @annabookwriter.bsky.social · 02/10/2026
I wish everyone valued you the way you value them, but I see you, keep going.
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 02/10/2026
And even tilt table tests, so many people don’t know they have PEM and have one and it messes them up. So many gaping holes in the care
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 02/10/2026
This is what I was immediately thinking 😂
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Erin Lee @erinmarilee.bsky.social · 02/10/2026
On Sunday October 11, Nate and I will compete in The Big Sit to raise funds for #MECFS research and we’d love your help! The Big Sit is a birding event where you try to find as many species as possible while sitting in a 17 foot circle. There are 2 ways you can help:
A white male and female couple in their 40s smile in front of a fallen southern live oak tree bleached by the sun. They are holding binoculars and smiling because they just spotted an endangered piping plover in the wild!
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 02/10/2026
Our paper about the challenges and opportunities in decentralized clinical trials for #LongCOVID is out! We discuss the regulatory, clinical, & disease-specific challenges we faced in building a clinical trial network for Long COVID. Please read and share with your networks! 🧪
frontiersin.org
Frontiers | Facilitators and barriers to decentralized Long COVID platform clinical trials using repurposed drugs
Long COVID is an emerging chronic condition that results in substantial impairments in quality of life, physical function, and ability to maintain gainful em...
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 01/10/2026
She was one of the people who started that clinic Metrodora for people with POTS & comorbid illnesses, & people were so excited & then it closed suddenly, & incredibly fast after opening 😬
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october "pre-order The Struggle Is Always Worth It now!" krausch @octoberk.bsky.social · 29/09/2026
this investigation on long COVID inside of prisons is out today at the Sick Times! I worked on this piece for months and am so grateful to the folks who shared their experiences with me. I'll write up a real thread a little later, but you can read it now: thesicktimes.org/2026/09/29/i...
thesicktimes.org
I interviewed five people with Long COVID in prison. They are invisible in the system. - The Sick Times
While there are no data sources on Long COVID in prison, experts suspect rates of the disease may be higher there than in the general population. They face high reinfection risks and poor access to me...
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 29/09/2026
The 2026 Stanford Community Symposium recordings are now on YouTube. Every talk is now online, including Danielle Meadows, PhD, OMF's VP of Research Programs and Operations, on the clinical trial landscape in ME/CFS and Long COVID. ▶️ ow.ly/E7Zk50ZSFZy
Announcement for 2026 Stanford Community Symposium recordings available on YouTube featuring Ronald W. Davis, PhD, and Danielle Meadows, PhD.
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 29/09/2026
Glad to hear it. Hope you’re getting some rest now post appt. Actually I discovered that the difficult person at my doctors office no longer works there! Hooray. Everyone was very nice to me. They don’t do much to help my chronic illnesses, but you know how low the bar is lol so I’ll take it
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 27/09/2026
Similar situation for me, and i’m also going in tomorrow. Solidarity to you. It’s soooo ridiculous.
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 27/09/2026
I’m so unbelievably tired of being online, especially when defensives have to be up & ready to scroll at so much of the BS content. I’d love to take an Internet hiatus, or even smash my phone w/ a hammer. But those of us who can rarely go into the outside world need to find community somehow.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 24/09/2026
A thread of all the talks from yesterday's NIH conference on multisystem disorders, including #endometriosis, #MECFS, chronic pain disorders, #lupus and more: 🧪 Talk 1: bsky.app/profile/exce...
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Casey Doherty @caseydoherty.bsky.social · 24/09/2026
A federal judge struck down the community integration provisions of the Sec. 504 rule by HHS. This removes guidance on community integration, but Sec. 504, the ADA, & Olmstead do remain the law. Disabled people have fought for decades for the right to live in our communities. We're not going back.
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Jon Douglas @atranscendedman.bsky.social · 23/09/2026
Johns Hopkins University, 11 hamsters. SARS-CoV-2 caused lasting cardiac autonomic remodeling. Early blocking of innate immune signaling or mitochondrial oxidative stress prevented the postacute dysfunction. www.heartrhythmopen.com/article/S266...
heartrhythmopen.com
Dynamic changes in cardiac autonomic function persist in the postacute phase after SARS-CoV-2 infection in a hamster model of COVID-19
Autonomic nervous system (ANS) dysfunction is a central feature of long coronavirus disease syndrome, yet little is known about how it develops during and after severe acute respiratory syndrome coron...
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valebodi.bsky.social @valebodi.bsky.social · 24/09/2026
Haptoglobin Phenotypes Stratify Post-Exertional Cognitive Dysfunction Associated with Altered Cerebral Oxygenation and Metabolic Signatures in Long COVID A.Moezzi, A. Moreau et al. (2026) #Haptoglobin #PEM #CBF #LongCOVID
mdpi.com
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Katy B @katybrc.bsky.social · 24/09/2026
"Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed" - George Monbiot #ME #pwME #MEcfs www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Kristin Meekes @kmeekes.bsky.social · 24/09/2026
OMFG if I see one more person suggest that people talking about Covid in 2026 want permanent lockdowns I’m going to lose it The asks are clean air in public places, treatments for long covid, masks in places like healthcare + normalization of masking elsewhere, expanded vaccine access, sick leave
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 24/09/2026
This (& at the risk of being annoying, also ask why you’re so annoyed & whether maybe you’ve been socialized to feel that way toward certain people with less power than you)
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victoria @vashetc.blacksky.app · 23/09/2026
sometime i feel the word disability tax doesnt fully describe the egregious dehumanization disabled folks constantly have to deal with. its the never-ending administrative violence on top of other forms of violence, that makes you physically and mentally unwell.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 21/09/2026
Just chiming in that while I’m not aware of GET being explicitly prescribed for ME in the US, it effectively still is because almost no doctors will diagnose ME/CFS, & the default advice remains “keep up the exercise & healthy eating & check back in 6 months.”
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 15/09/2026
Dr. Janet Mullington and her team released a paper on their investigation of sleep electroencephalographic microstructures. The team studied these microstructures in the context of non-restorative sleep and daytime fatigue in #MECFS and #LongCOVID. ow.ly/W6EE50ZNXq5
ow.ly
New Publication: Facility-Measured Sleep Electroencephalographic Microstructures in Long COVID - Open Medicine Foundation
New research from OMF's Computational Research Center finds measurable differences in sleep EEG microstructures in people with Long COVID and ME/CFS. Join OMF Journal Club on September 29 to go deeper.
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Solve M.E. @solveme.bsky.social · 21/09/2026
3/ Read our full statement 👉 ow.ly/pHk350ZPTLT Want to get involved? Use our toolkit to contact your Members of Congress and tell them to protect merit-based science at the NIH. Take action: ow.ly/izCt50ZPTLV
ow.ly
Solve M.E. Statement on Proposed Political Review of NIH Grants - Solve ME/CFS Initiative
Solve M.E. responds to reports of a proposed political review of NIH grants and urges continued merit-based funding for biomedical research.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 21/09/2026
Cort explores the research from Dr Chung who believes he has uncovered a game changing drug for treating inflammatory illnesses like ME/CFS, fibromyalgia, LC etc. in a new drug, a Mitochondrial Stabilizer IVO-21. This is potentially low-cost. tinyurl.com/532e5jba
tinyurl.com
IVO-21 - A Paradigm Changer AND a Mitochondrial Drug for ME/CFS? - Health Rising
Could a new mitochondrial drug called IVO-21 be the answer to the energy problems in ME/CFS, fibromyalgia, and long COVID?
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Andrew Gifford @andrewgiffordphoto.bsky.social · 16/09/2026
Any spare Oxaloacetate I can buy from you? It's currently on back order due to demand. Thanks! #Oxaloacetate
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Anil van der Zee @anilvanderzee.bsky.social · 20/09/2026
Wow. Oscar winning filmmaker Martin Strange-Hansen has made a short film about the forced removal of a very severe ME patient in Denmark. This looks really amazing!! vimeo.com/user10350947... #pwme #myalgicE #millionsmissing #severeME
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Baby Ruthless @baby-ruthless.bsky.social · 20/09/2026
believing it's possible to think your way out of a biological disease is the bargaining stage of grief
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 18/09/2026
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 18/09/2026
“Priorities” but they’re also potentially reorganizing the entire NIAID? www.meaction.net/post/nationa...
meaction.net
National Institute of Allergy and Infectious Diseases Proposes Reorganization Plan
The National Institute of Allergy and Infectious Diseases (NIAID), has released a proposal to eliminate its Division of Clinical Research (DCR) and move the division’s programs and responsibilities in...
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 18/09/2026
Last day to complete the Understanding Post-Exertional Symptom Worsening in ME/CFS survey. Your responses go directly into CTN Lite trial design — shaping the terminology, outcome measures, and how crashes are defined and measured. 👉 Take the Survey: ow.ly/AVBY50ZPaJM
Open Medicine Foundation announces last day to participate in ME/CFS post-exertional symptom worsening study closing September 18.
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 17/09/2026
Yikes. 😳 Thanks for laying it out like this. Commenting for maybe increased visibility? I posted to a couple LC discords.
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Solve M.E. @solveme.bsky.social · 16/09/2026
4/ Add your comment in ~2 minutes by Sept 18: →Go to niaid.nih.gov/about/niaid-... → Scroll down, click “Leave a comment,” →Submit. For suggested wording + Solve’s full comment: ow.ly/v0no50ZO5Ve
niaid.nih.gov
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Solve M.E. @solveme.bsky.social · 16/09/2026
1/ 🚨Take action by Friday! NIAID has proposed eliminating its Division of Clinical Research — the infrastructure behind its clinical trials — on a public comment window of just five days. #MECFS #LongCOVID
Solve M.E. action alert on a deep teal background. Headline: Take action by Friday. Text: NIAID has proposed eliminating its Division of Clinical Research, the infrastructure behind clinical trials, on a five-day comment window. Comment by Sept 18.
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 17/09/2026
You can submit a comment here by tomorrow/Friday: forms.cloud.microsoft/Pages/Respon... Info on the reorganization: www.niaid.nih.gov/about/niaid-... Comment template from SolveME:
I'm writing as [a person with ME/CFS / a Long Covid patient / a caregiver / a supporter] to ask NIAID to slow down this proposed reorganization of the Division of Clinical Research. Consolidated clinical research infrastructure is what turns discoveries into treatments patients can actually access, and millions of us living with [ME/CFS / Long Covid] are counting on the clinical trials NIAID supports, including the Long Covid treatment trials now underway. Please extend the public comment period so the public can review the full plan, and please protect the coordinated clinical research oversight this division provides. [One line in your own words — who you are, and what waiting for treatment has meant for you or your family.] Thank you.
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#MEAction Network @meactnet.bsky.social · 15/09/2026
Comments are open until September 18th. See the excellent article by @exceedhergrasp1.bsky.social: www.meaction.net/post/nationa... It has further links and information. Please take care. It is a lot of info to take in! I tried to pull the key parts in this thread but it is complicated!
meaction.net
National Institute of Allergy and Infectious Diseases proposes reorganization plan
The National Institute of Allergy and Infectious Diseases (NIAID), has released a proposal to eliminate its Division of Clinical Research (DCR) and move the division’s programs and responsibilities in...
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#MEAction Network @meactnet.bsky.social · 17/09/2026
It is #DisabilityVotingRightsWeek. Let's talk mail-in voting. If you are voting by mail please request and return your ballot as early as possible. Each state has different rules so head to www.vote.org/absentee-ballot #RevUp2026 AAPD - The American Association of People with Disabilities
Red mailbox illustration with text encouraging voters to request and return mail ballots early, including a hotline for voting help. Text: Are you voting by mail? Request and return as early as possible. More info at www.vote.org/absentee-ballot. The Election Protection hotline 1 866 OUR VOTE
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Betty C. Jung @bettycjung.bsky.social · 17/09/2026
Varicella Zoster Virus Can Cause Serious Disease Beyond Chickenpox and Shingles Varicella zoster virus can reactivate years after chickenpox and affect every organ without the telltale shingles rash, making this treatable infection difficult to recognize news.cuanschutz.edu/news-stories...
news.cuanschutz.edu
Varicella Zoster Virus Can Cause Serious Disease Beyond Chickenpox and Shingles
CU Anschutz researchers highlight the broad range of neurological and systemic diseases caused by varicella zoster virus, sometimes without a rash
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Patient-Led Research Collaborative @patientled.bsky.social · 15/09/2026
We're thrilled to see positive results from @biovie.bsky.social's clinical trial on bezisterim in #LongCovid! The drug benefited patients with high levels of fatigue, PEM and/or cognitive impairment, with multiple significant and trending results, including objective cognitive tests. 1/
The summary “forest chart” chart shows only those endpoints that reach statistically significant or are trending, and the charts for all endpoints can be found in the full data announcement presentation that was discussed during BioVie's conference call.
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Alexis M. 🎃 @turnoftheshrew.bsky.social · 16/09/2026
In #chronicillness it is necessary to stop desiring to be understood by other people. As a person who grew up feeling perpetually misunderstood by caregivers, it’s been a hard thing to unlearn. Then there’s realizing that some people are choosing to continue misunderstanding, & letting them go.
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