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.
To anyone that needs clarification, "your best" is what you can accomplish without damage to your physical, mental and emotional health, not what you can accomplish by destroying them
February 1, 2026 at 6:58 PM
To anyone that needs clarification, "your best" is what you can accomplish without damage to your physical, mental and emotional health, not what you can accomplish by destroying them
Reposted by Alexis M.
News Release 11-Feb-2026
Vanderbilt Health to lead expanded multisite study of immunomodulation in long COVID
www.eurekalert.org/news-release...
Randomized Double-Blind Placebo-Controlled Trial EValuating Baricitinib on PERSistent NEurologic and Cardiopulmonary symptoms of #LongCOVID (REVERSE-LC)
Vanderbilt Health to lead expanded multisite study of immunomodulation in long COVID
www.eurekalert.org/news-release...
Randomized Double-Blind Placebo-Controlled Trial EValuating Baricitinib on PERSistent NEurologic and Cardiopulmonary symptoms of #LongCOVID (REVERSE-LC)
February 13, 2026 at 7:25 PM
News Release 11-Feb-2026
Vanderbilt Health to lead expanded multisite study of immunomodulation in long COVID
www.eurekalert.org/news-release...
Randomized Double-Blind Placebo-Controlled Trial EValuating Baricitinib on PERSistent NEurologic and Cardiopulmonary symptoms of #LongCOVID (REVERSE-LC)
Vanderbilt Health to lead expanded multisite study of immunomodulation in long COVID
www.eurekalert.org/news-release...
Randomized Double-Blind Placebo-Controlled Trial EValuating Baricitinib on PERSistent NEurologic and Cardiopulmonary symptoms of #LongCOVID (REVERSE-LC)
Reposted by Alexis M.
The SAVE America Act was passed by the House yesterday. Next it will go to the Senate. Call or email your senator now if able. The National Coalition on Accessible Voting statement, plain language summary, & link to action is here: https://ncavote.org/resource/nosaveact/
#DisabilityVote
#DisabilityVote
February 12, 2026 at 8:30 PM
The SAVE America Act was passed by the House yesterday. Next it will go to the Senate. Call or email your senator now if able. The National Coalition on Accessible Voting statement, plain language summary, & link to action is here: https://ncavote.org/resource/nosaveact/
#DisabilityVote
#DisabilityVote
“Patients are just happy to be believed.” NO. That talking point accomplishes nothing but soothing healthy people into thinking somehow any of this is okay. The care is beyond inadequate. I have never needed someone to confirm my own lived experiences. I need medical treatment. #MECFS #LongCovid
February 13, 2026 at 12:32 AM
“Patients are just happy to be believed.” NO. That talking point accomplishes nothing but soothing healthy people into thinking somehow any of this is okay. The care is beyond inadequate. I have never needed someone to confirm my own lived experiences. I need medical treatment. #MECFS #LongCovid
Reposted by Alexis M.
Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026.
The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!
1/9
#MECFS #pwME #OpenCall #OnlineExhibition
The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!
1/9
#MECFS #pwME #OpenCall #OnlineExhibition
February 12, 2026 at 12:17 PM
Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026.
The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!
1/9
#MECFS #pwME #OpenCall #OnlineExhibition
The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!
1/9
#MECFS #pwME #OpenCall #OnlineExhibition
Reposted by Alexis M.
Contact Congress! ncavote.org/resource/nos...
From the National Coalition on Accessible Voting:
Disability & civil rights organizations are calling on Congress to stand against the SAVE Act, SAVE America Act, and MEGA Act. These bills will make it much harder for people with disabilities to vote.
From the National Coalition on Accessible Voting:
Disability & civil rights organizations are calling on Congress to stand against the SAVE Act, SAVE America Act, and MEGA Act. These bills will make it much harder for people with disabilities to vote.
February 11, 2026 at 6:46 PM
Contact Congress! ncavote.org/resource/nos...
From the National Coalition on Accessible Voting:
Disability & civil rights organizations are calling on Congress to stand against the SAVE Act, SAVE America Act, and MEGA Act. These bills will make it much harder for people with disabilities to vote.
From the National Coalition on Accessible Voting:
Disability & civil rights organizations are calling on Congress to stand against the SAVE Act, SAVE America Act, and MEGA Act. These bills will make it much harder for people with disabilities to vote.
I certainly admire athletes like Simone Biles or Naomi Osaka, who take breaks or pull out of competitions to follow their body signals & ultimately protect their health & longevity… over Lindsey Vonn’s “inspirational determination” to ski on a 9-day old ACL tear. Yikes. #WinterOlympics
February 11, 2026 at 6:50 PM
I certainly admire athletes like Simone Biles or Naomi Osaka, who take breaks or pull out of competitions to follow their body signals & ultimately protect their health & longevity… over Lindsey Vonn’s “inspirational determination” to ski on a 9-day old ACL tear. Yikes. #WinterOlympics
Reposted by Alexis M.
3) One issue is that post-exertional malaise (PEM) is described as "a defining feature of Long Covid."
PEM is the defining feature of ME/CFS, not of Long Covid. If PEM is common in Long Covid, it's likely because a substantial subgroup of Long Covid patients has ME/CFS.
PEM is the defining feature of ME/CFS, not of Long Covid. If PEM is common in Long Covid, it's likely because a substantial subgroup of Long Covid patients has ME/CFS.
February 11, 2026 at 1:21 PM
3) One issue is that post-exertional malaise (PEM) is described as "a defining feature of Long Covid."
PEM is the defining feature of ME/CFS, not of Long Covid. If PEM is common in Long Covid, it's likely because a substantial subgroup of Long Covid patients has ME/CFS.
PEM is the defining feature of ME/CFS, not of Long Covid. If PEM is common in Long Covid, it's likely because a substantial subgroup of Long Covid patients has ME/CFS.
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 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.