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
Alexis M.
@turnoftheshrew.bsky.social
· Apr 4
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.
Reposted by Alexis M.
The Long Covid Innovation bill will be heard next in the Maryland Senate! 🥳
If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!
And if you needed a little more time, here it is!
Instructions:
If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!
And if you needed a little more time, here it is!
Instructions:
February 7, 2026 at 8:13 PM
The Long Covid Innovation bill will be heard next in the Maryland Senate! 🥳
If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!
And if you needed a little more time, here it is!
Instructions:
If you sent your story already, you can increase your impact by reformatting w/ the Senate bill number (SB0392) and uploading again Tues 2/10 8am-6pm!
And if you needed a little more time, here it is!
Instructions:
Reposted by Alexis M.
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
02 Chamber survey | Physiosforme
www.physiosforme.com
February 5, 2026 at 6:39 PM
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
saying no to someone else is saying yes to myself
February 5, 2026 at 6:14 PM
saying no to someone else is saying yes to myself
Reposted by Alexis M.
Interpreting studies do's and don'ts
From IACFS/ME Newsletter
From IACFS/ME Newsletter
February 4, 2026 at 6:32 PM
Interpreting studies do's and don'ts
From IACFS/ME Newsletter
From IACFS/ME Newsletter
Reposted by Alexis M.
Hi everyone, I wanted to share a research study I just launched on rest, energy, & ME/CFS, open to people with ME/CFS & medical or healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS. Visit restandmecfs.com for more.
February 4, 2026 at 4:05 PM
Hi everyone, I wanted to share a research study I just launched on rest, energy, & ME/CFS, open to people with ME/CFS & medical or healthcare providers who are currently practicing or conducting research & have had at least 1 patient or participant with ME/CFS. Visit restandmecfs.com for more.
Reposted by Alexis M.
Hi all!
There will be two windows to share your story in the form of written testimony to support the Maryland Long Covid Innovation bill. The first is:
This Friday 2/6 from 8am-3pm
To make it easier, @viralpersistence.bsky.social and I have written up a how-to: docs.google.com/document/d/1...
There will be two windows to share your story in the form of written testimony to support the Maryland Long Covid Innovation bill. The first is:
This Friday 2/6 from 8am-3pm
To make it easier, @viralpersistence.bsky.social and I have written up a how-to: docs.google.com/document/d/1...
Long Covid friends—
A bill in the Maryland legislature would create an R&D fund for LC—a big deal when new federal funding is stalled.
The advocate behind the bill is asking for people anywhere to submit written testimony on Fri 2/6 on your experience w/LC, to say why this is needed!
More info:
A bill in the Maryland legislature would create an R&D fund for LC—a big deal when new federal funding is stalled.
The advocate behind the bill is asking for people anywhere to submit written testimony on Fri 2/6 on your experience w/LC, to say why this is needed!
More info:
Sign the Petition
Advocate for Maryland HB 0027 for Long COVID R&D
www.change.org
February 4, 2026 at 8:46 PM
Hi all!
There will be two windows to share your story in the form of written testimony to support the Maryland Long Covid Innovation bill. The first is:
This Friday 2/6 from 8am-3pm
To make it easier, @viralpersistence.bsky.social and I have written up a how-to: docs.google.com/document/d/1...
There will be two windows to share your story in the form of written testimony to support the Maryland Long Covid Innovation bill. The first is:
This Friday 2/6 from 8am-3pm
To make it easier, @viralpersistence.bsky.social and I have written up a how-to: docs.google.com/document/d/1...
Reposted by Alexis M.
Action alert - We're co-sponsoring @meactnet.bsky.social's ICE Makes Me Sick campaign.
Use this easy tool to send a quick message to your House reps: makesmesick.org?source=direc...
Tell reps to stop bankrolling ICE violence while slashing our healthcare & homecare. Fund healthcare, not violence!
Use this easy tool to send a quick message to your House reps: makesmesick.org?source=direc...
Tell reps to stop bankrolling ICE violence while slashing our healthcare & homecare. Fund healthcare, not violence!
February 2, 2026 at 7:44 PM
Action alert - We're co-sponsoring @meactnet.bsky.social's ICE Makes Me Sick campaign.
Use this easy tool to send a quick message to your House reps: makesmesick.org?source=direc...
Tell reps to stop bankrolling ICE violence while slashing our healthcare & homecare. Fund healthcare, not violence!
Use this easy tool to send a quick message to your House reps: makesmesick.org?source=direc...
Tell reps to stop bankrolling ICE violence while slashing our healthcare & homecare. Fund healthcare, not violence!
Reposted by Alexis M.
New research from Griffith University shows people with ME/CFS and Long COVID have altered brain connectivity during cognitively demanding tasks, offering insight into brain fog, memory challenges, and mental fatigue.
🔗 news.griffith.edu.au/2026/01/28/a...
🔗 news.griffith.edu.au/2026/01/28/a...
Altered brain connection found in people with ME/CFS and Long COVID - Griffith News
People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID experience a disruption to their brain connectivity during a
news.griffith.edu.au
January 28, 2026 at 10:14 PM
New research from Griffith University shows people with ME/CFS and Long COVID have altered brain connectivity during cognitively demanding tasks, offering insight into brain fog, memory challenges, and mental fatigue.
🔗 news.griffith.edu.au/2026/01/28/a...
🔗 news.griffith.edu.au/2026/01/28/a...
Reposted by Alexis M.
there is a siblinghood among fellow havers of a given illness, both tender and strong
there are lots of forms of love in this world, and I would posit that this particular connection is its own canonical form of love
there are lots of forms of love in this world, and I would posit that this particular connection is its own canonical form of love
January 28, 2026 at 5:02 AM
there is a siblinghood among fellow havers of a given illness, both tender and strong
there are lots of forms of love in this world, and I would posit that this particular connection is its own canonical form of love
there are lots of forms of love in this world, and I would posit that this particular connection is its own canonical form of love
Reposted by Alexis M.
Know Your Rights Webinar for Immigrants with Disabilities - January 29th
us06web.zoom.us/webinar/regi...
us06web.zoom.us/webinar/regi...
Welcome! You are invited to join a webinar: Your Right to Access: What You Need to Know as an Immigrant with a Disability - Revised, Expanded and Ready!. After registering, you will receive a confirma...
Since its inception, the award-winning film UNSEEN was created to put at the service of movement work and uplift disabled and undocumented immigrant audiences – communities systemically pushed to the ...
us06web.zoom.us
January 24, 2026 at 6:04 AM
Know Your Rights Webinar for Immigrants with Disabilities - January 29th
us06web.zoom.us/webinar/regi...
us06web.zoom.us/webinar/regi...
Reposted by Alexis M.
Our hearts are with Minnesota! 💪
January 23, 2026 at 2:41 PM
Our hearts are with Minnesota! 💪
I heard Julia Louis Dreyfus compare surviving cancer to focusing on swimming to a ladder w/ a shark in the water. We are all of us constantly swimming toward the ladder, but the ladder never arrives. And we are never celebrated for the remarkable endurance it requires. But we are still here. #MECFS
January 21, 2026 at 11:39 PM
I heard Julia Louis Dreyfus compare surviving cancer to focusing on swimming to a ladder w/ a shark in the water. We are all of us constantly swimming toward the ladder, but the ladder never arrives. And we are never celebrated for the remarkable endurance it requires. But we are still here. #MECFS
Annnnd I was listening to a book about the Civil War & it’s remarkable how much they encouraged a sick person to rest, including telling them not to even descend the stairs lest it would cause a “relapse.“ The healthy fear of infection, disease, & consequences really sure is something we’ve lost
i was reading a book about victorians the other day and was deeply envious of the drs making house calls. not so much the other parts of victorian medicine, but that part for sure. it would be glorious
January 21, 2026 at 11:33 PM
Annnnd I was listening to a book about the Civil War & it’s remarkable how much they encouraged a sick person to rest, including telling them not to even descend the stairs lest it would cause a “relapse.“ The healthy fear of infection, disease, & consequences really sure is something we’ve lost
Reposted by Alexis M.
Reposted by Alexis M.
crazy that the website that I randomly decided to put together at 10AM yesterday has had over 25k unique visitors in 24 hours.
please keep sharing with your networks.
please keep sharing with your networks.
Stand With Minnesota
A directory of places to give to as Minnesota defends itself from ICE occupation
www.standwithminnesota.com
January 15, 2026 at 4:24 PM
crazy that the website that I randomly decided to put together at 10AM yesterday has had over 25k unique visitors in 24 hours.
please keep sharing with your networks.
please keep sharing with your networks.
Reposted by Alexis M.
The blood of #PostCovid and #MECFS patients can transmit symptoms by damaging previously healthy muscles and mitochondria.
First observed in a mouse model 🐭, now a new in vitro study 🧪. Paper with a very detailed list!
@sheezamughal.bsky.social et al. 🇪🇸
First observed in a mouse model 🐭, now a new in vitro study 🧪. Paper with a very detailed list!
@sheezamughal.bsky.social et al. 🇪🇸
Das Blut von #PostCovid- und #MECFS-Erkrankten kann Symptome übertragen, indem die vormals gesunde Muskulatur und die Mitochondrien geschädigt werden.
Zuerst im 🐭 Maus-Modell beobachtet, nun eine neue Studie in vitro 🧪. Paper mit sehr detaillierter Auflistung!
iopscience.iop.org/article/10.1...
Zuerst im 🐭 Maus-Modell beobachtet, nun eine neue Studie in vitro 🧪. Paper mit sehr detaillierter Auflistung!
iopscience.iop.org/article/10.1...
January 15, 2026 at 10:59 PM
The blood of #PostCovid and #MECFS patients can transmit symptoms by damaging previously healthy muscles and mitochondria.
First observed in a mouse model 🐭, now a new in vitro study 🧪. Paper with a very detailed list!
@sheezamughal.bsky.social et al. 🇪🇸
First observed in a mouse model 🐭, now a new in vitro study 🧪. Paper with a very detailed list!
@sheezamughal.bsky.social et al. 🇪🇸
Reposted by Alexis M.
A chronobiology-based protocol for multi-omic mapping of menstrual cycle and diurnal rhythms in #ME/CFS and long COVID
Christopher W. Armstrong et al.
Christopher W. Armstrong et al.
A chronobiology-based protocol for multi-omic mapping of menstrual cycle and diurnal rhythms in ME/CFS and long COVID - npj Women's Health
npj Women's Health - A chronobiology-based protocol for multi-omic mapping of menstrual cycle and diurnal rhythms in ME/CFS and long COVID
www.nature.com
January 15, 2026 at 11:01 PM
A chronobiology-based protocol for multi-omic mapping of menstrual cycle and diurnal rhythms in #ME/CFS and long COVID
Christopher W. Armstrong et al.
Christopher W. Armstrong et al.
Reposted by Alexis M.
You aren't actually overreacting other people are sleepwalking.
January 15, 2026 at 10:39 PM
You aren't actually overreacting other people are sleepwalking.
Reposted by Alexis M.
📣 If you’re in Maryland:
Submit testimony to support HB27 - online, in person, or in writing. Your story makes a difference.
📄 Step-by-step guide: mdlegislative.com/legislation/...
Submit testimony to support HB27 - online, in person, or in writing. Your story makes a difference.
📄 Step-by-step guide: mdlegislative.com/legislation/...
Submit Testimony – Maryland Legislative Coalition
mdlegislative.com
January 15, 2026 at 8:33 PM
📣 If you’re in Maryland:
Submit testimony to support HB27 - online, in person, or in writing. Your story makes a difference.
📄 Step-by-step guide: mdlegislative.com/legislation/...
Submit testimony to support HB27 - online, in person, or in writing. Your story makes a difference.
📄 Step-by-step guide: mdlegislative.com/legislation/...
Reposted by Alexis M.
Consumers don’t know if their medications came from factories that used dirty water, were infested by insects or birds, or were outright banned from shipping drugs to the U.S.
Our new tool provides answers that the FDA won’t 👇
Our new tool provides answers that the FDA won’t 👇
Rx Inspector: ProPublica’s New Tool Provides Drug Info the FDA Won’t
We’ve launched a first-of-its-kind app to help you find out where your generic drugs come from and see the track records of the factories that made them.
www.propublica.org
January 15, 2026 at 2:00 PM
Consumers don’t know if their medications came from factories that used dirty water, were infested by insects or birds, or were outright banned from shipping drugs to the U.S.
Our new tool provides answers that the FDA won’t 👇
Our new tool provides answers that the FDA won’t 👇
Reposted by Alexis M.
"The future of Long COVID research will be measured not by how many trials are launched, but by how many lives they truly represent."
A new op-ed in @thesicktimes.org by Sevda Sarikaya
thesicktimes.org/2026/01/13/s...
A new op-ed in @thesicktimes.org by Sevda Sarikaya
thesicktimes.org/2026/01/13/s...
Severe people may hold answers to Long COVID. They must be included in research. - The Sick Times
People with the most severe symptoms represent the most clinically urgent population, yet they remain absent from the evidence base that guides care. Their exclusion is not a procedural oversight but ...
thesicktimes.org
January 13, 2026 at 6:47 PM
"The future of Long COVID research will be measured not by how many trials are launched, but by how many lives they truly represent."
A new op-ed in @thesicktimes.org by Sevda Sarikaya
thesicktimes.org/2026/01/13/s...
A new op-ed in @thesicktimes.org by Sevda Sarikaya
thesicktimes.org/2026/01/13/s...
Reposted by Alexis M.
Germany did the math and found that Long Covid and ME/CFS cost 1.5% of the nation's GDP.
mecfs-research.org/wp-content/u...
mecfs-research.org/wp-content/u...
mecfs-research.org
January 9, 2026 at 6:48 PM
Germany did the math and found that Long Covid and ME/CFS cost 1.5% of the nation's GDP.
mecfs-research.org/wp-content/u...
mecfs-research.org/wp-content/u...
Reposted by Alexis M.
Medscape: 'Multiple Abnormal Responses to Exertion Seen in ME/CFS'
'The new plasma profiling study focused on PEM..6361 unique proteins with patient-reported symptom data gathered before, during & after 2 days of maximal cardiopulmonary exercise testing..'
www.medscape.com/viewarticle/...
'The new plasma profiling study focused on PEM..6361 unique proteins with patient-reported symptom data gathered before, during & after 2 days of maximal cardiopulmonary exercise testing..'
www.medscape.com/viewarticle/...
Multiple Abnormal Responses to Exertion Seen in ME/CFS
Findings underscore the risk for graded exercise in people with post-exertional malaise and point to careful activity pacing as a safer approach.
www.medscape.com
January 9, 2026 at 2:30 PM
Medscape: 'Multiple Abnormal Responses to Exertion Seen in ME/CFS'
'The new plasma profiling study focused on PEM..6361 unique proteins with patient-reported symptom data gathered before, during & after 2 days of maximal cardiopulmonary exercise testing..'
www.medscape.com/viewarticle/...
'The new plasma profiling study focused on PEM..6361 unique proteins with patient-reported symptom data gathered before, during & after 2 days of maximal cardiopulmonary exercise testing..'
www.medscape.com/viewarticle/...
Reposted by Alexis M.
shout out to everyone else desperately trying to regulate their autonomic nervous system during The Horrors
(especially folks who already have an overactive fight/flight response)
#NEISvoid
(especially folks who already have an overactive fight/flight response)
#NEISvoid
January 9, 2026 at 9:01 PM
shout out to everyone else desperately trying to regulate their autonomic nervous system during The Horrors
(especially folks who already have an overactive fight/flight response)
#NEISvoid
(especially folks who already have an overactive fight/flight response)
#NEISvoid
Reposted by Alexis M.
We published results from a new pre/post-infection long-COVID study today. Individuals with neurological symptoms of long-COVID experienced significant increases in a biomarker for cortical health called pTau-181 when compared to pre-COVID samples. #COVID-19 www.sciencedirect.com/science/arti...
Increased phosphorylated tau (pTau-181) is associated with neurological post-acute sequelae of coronavirus disease in essential workers: a prospective cohort study before and after COVID-19 onset
The COVID-19 pandemic led to a spectrum of post-acute sequelae including several neurological complications including cognitive dysfunction labelled N…
www.sciencedirect.com
January 6, 2026 at 1:42 PM
We published results from a new pre/post-infection long-COVID study today. Individuals with neurological symptoms of long-COVID experienced significant increases in a biomarker for cortical health called pTau-181 when compared to pre-COVID samples. #COVID-19 www.sciencedirect.com/science/arti...