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.
Don't let anybody make you feel bad for the chronic illness you didn't choose to have.
November 12, 2025 at 4:27 PM
Don't let anybody make you feel bad for the chronic illness you didn't choose to have.
The concept of “toughing it out” by avoiding medication is always laughable to me. Not only is it rooted in ableism (medication as weakness), but the body responds positively to ease & comfort. Ignoring pain & other symptoms is only cumulatively harmful in the end. There is no reward for enduring.
November 13, 2025 at 3:12 AM
The concept of “toughing it out” by avoiding medication is always laughable to me. Not only is it rooted in ableism (medication as weakness), but the body responds positively to ease & comfort. Ignoring pain & other symptoms is only cumulatively harmful in the end. There is no reward for enduring.
Reposted by Alexis M.
There are LoCITT-T participants across 46 states & DC!
We currently do not have participants from:
North Dakota
South Dakota
Mississippi
Puerto Rico
Can you spread the word to anyone with LC there (or in any other, more generally underrepresented community):
longcovid.scripps.edu/locitt-t/?ut...
We currently do not have participants from:
North Dakota
South Dakota
Mississippi
Puerto Rico
Can you spread the word to anyone with LC there (or in any other, more generally underrepresented community):
longcovid.scripps.edu/locitt-t/?ut...
LoCITT-T - Long COVID Treatment Trial
The Long COVID Treatment Trial-Tirzepatide (LoCITT-T) is investigating the efficacy of repurposing this drug to treat Long COVID.
longcovid.scripps.edu
November 12, 2025 at 6:46 PM
There are LoCITT-T participants across 46 states & DC!
We currently do not have participants from:
North Dakota
South Dakota
Mississippi
Puerto Rico
Can you spread the word to anyone with LC there (or in any other, more generally underrepresented community):
longcovid.scripps.edu/locitt-t/?ut...
We currently do not have participants from:
North Dakota
South Dakota
Mississippi
Puerto Rico
Can you spread the word to anyone with LC there (or in any other, more generally underrepresented community):
longcovid.scripps.edu/locitt-t/?ut...
Reposted by Alexis M.
"The study suggests that Epstein-Barr virus (EBV), which for most people is harmless..." Yes, apart from the 69000 with Lupus, ppl w MS, ppl w certain cancers, ppl with RA, and all the other life-wrecking shit we don't know about yet because medicine didn't bother to look because meh.
Epstein-Barr virus appears to be trigger of lupus disease, say scientists
Epstein-Barr virus appears to be trigger of lupus disease, say scientists
Connection of near-ubiquitous EBV to autoimmune disease affecting about 1 in 1,000 people may spur hunt for vaccine
A common childhood virus appears to be the trigger for the autoimmune disease lupus, according to groundbreaking research.
The study suggests that Epstein-Barr virus (EBV), which for most people is harmless, can cause immune cells to “go rogue” and mistakenly attack the body’s own tissues. The team behind the work said that uncovering the cause of lupus could revolutionise treatments. Continue reading...
www.theguardian.com
November 12, 2025 at 10:48 PM
"The study suggests that Epstein-Barr virus (EBV), which for most people is harmless..." Yes, apart from the 69000 with Lupus, ppl w MS, ppl w certain cancers, ppl with RA, and all the other life-wrecking shit we don't know about yet because medicine didn't bother to look because meh.
Reposted by Alexis M.
Health Rising: 'Role Reversal: Could a WEAKENED Fight/Flight Response Be Causing ME/CFS and Long COVID? The 2025 IACFS/ME Conference Pt. I'
'..these diseases appear to have what’s called a “pre-synaptic vesicle energy problem'
www.healthrising.org/blog/2025/11...
'..these diseases appear to have what’s called a “pre-synaptic vesicle energy problem'
www.healthrising.org/blog/2025/11...
Role Reversal: Could a WEAKENED Fight/Flight Response Be Causing ME/CFS and Long COVID? The 2025 IACFS/ME Conference Pt. I - Health Rising
Low brain norepinephrine levels could explain many of the symptoms present in ME/CFS, long COVID and similar diseases.
www.healthrising.org
November 12, 2025 at 4:52 PM
Health Rising: 'Role Reversal: Could a WEAKENED Fight/Flight Response Be Causing ME/CFS and Long COVID? The 2025 IACFS/ME Conference Pt. I'
'..these diseases appear to have what’s called a “pre-synaptic vesicle energy problem'
www.healthrising.org/blog/2025/11...
'..these diseases appear to have what’s called a “pre-synaptic vesicle energy problem'
www.healthrising.org/blog/2025/11...
Reposted by Alexis M.
The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
#MastCells #MCAS #ME #MECFS
#MastCells #MCAS #ME #MECFS
www.mdpi.com
November 10, 2025 at 5:59 AM
The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
#MastCells #MCAS #ME #MECFS
#MastCells #MCAS #ME #MECFS
Reposted by Alexis M.
We're socialized to constantly apologize for being too outwardly excited about things, but this world is so full of terror and misery that I'd rather see those bursts of light and passion shine through the cracks wherever you can find them.
November 7, 2025 at 2:36 PM
We're socialized to constantly apologize for being too outwardly excited about things, but this world is so full of terror and misery that I'd rather see those bursts of light and passion shine through the cracks wherever you can find them.
the way when doing something that feels meaningful a little piece of you heals at the experience, starved and lapping it up, and another piece of you breaks, at having to rip yourself away from it after only mere minutes, perhaps hours if you’re lucky, never days, only a glimpse #MECFS
November 9, 2025 at 8:28 PM
the way when doing something that feels meaningful a little piece of you heals at the experience, starved and lapping it up, and another piece of you breaks, at having to rip yourself away from it after only mere minutes, perhaps hours if you’re lucky, never days, only a glimpse #MECFS
Reposted by Alexis M.
if you are food insecure for both the humans and pets in your household there is a tool called Pet Help Finder that can help locate pet food banks nearby and other free or reduced price assistance and supplies for pets.
no one, ABSOLUTELY NO ONE, should have to give up their pet bc of this.
no one, ABSOLUTELY NO ONE, should have to give up their pet bc of this.
November 8, 2025 at 6:35 PM
if you are food insecure for both the humans and pets in your household there is a tool called Pet Help Finder that can help locate pet food banks nearby and other free or reduced price assistance and supplies for pets.
no one, ABSOLUTELY NO ONE, should have to give up their pet bc of this.
no one, ABSOLUTELY NO ONE, should have to give up their pet bc of this.
Reposted by Alexis M.
The paper is available to read at: www.thelancet.com/journals/lan...
Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease
Long COVID is an umbrella term for the heterogeneous long-term consequences of SARS-CoV-2
infection. It encompasses a wide spectrum of phenotypes (sometimes overlapping), and
its underlying mechanisms...
www.thelancet.com
November 8, 2025 at 12:08 AM
The paper is available to read at: www.thelancet.com/journals/lan...
Reposted by Alexis M.
Berkeley's crowdfunding campaign for Trial By Error, which investigates problematic psycho-behavioral research involving ME, ME/CFS, Long COVID, etc., has reached 98% of the goal, with one day remaining:
crowdfund.berkeley.edu/project/47768
crowdfund.berkeley.edu/project/47768
David Tuller's Trial by Error Fall 2025
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!
crowdfund.berkeley.edu
November 7, 2025 at 4:50 PM
Berkeley's crowdfunding campaign for Trial By Error, which investigates problematic psycho-behavioral research involving ME, ME/CFS, Long COVID, etc., has reached 98% of the goal, with one day remaining:
crowdfund.berkeley.edu/project/47768
crowdfund.berkeley.edu/project/47768
Reposted by Alexis M.
Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with #LongCovid for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input!
Find a trial site near you:
addresslongcovid.com/sites/
Find a trial site near you:
addresslongcovid.com/sites/
Study Sites | Address: Long COVID Clinical Study | BioVie Pharma
Study Sites near you! Learn more about participating in a clinical study of a Trial Drug to treat neurological symptoms of Long COVID.
addresslongcovid.com
September 19, 2025 at 6:51 PM
Patient voices were heard! The ADDRESS-LC trial on Bezisterim is now open to those who have been living with #LongCovid for more than 2 years. We’re glad to see Biovie’s trial continues to reflect patient + scientific input!
Find a trial site near you:
addresslongcovid.com/sites/
Find a trial site near you:
addresslongcovid.com/sites/
Reposted by Alexis M.
For more info and to enroll check out our website:
longcovid.scripps.edu/locitt-t/?ut...
And/or attend our webinar tomorrow (11/5); registration is required:
scrippsresearch.zoom.us/webinar/regi...
longcovid.scripps.edu/locitt-t/?ut...
And/or attend our webinar tomorrow (11/5); registration is required:
scrippsresearch.zoom.us/webinar/regi...
November 4, 2025 at 3:11 PM
For more info and to enroll check out our website:
longcovid.scripps.edu/locitt-t/?ut...
And/or attend our webinar tomorrow (11/5); registration is required:
scrippsresearch.zoom.us/webinar/regi...
longcovid.scripps.edu/locitt-t/?ut...
And/or attend our webinar tomorrow (11/5); registration is required:
scrippsresearch.zoom.us/webinar/regi...
People see that I can sometimes do some art, cook a special meal w/ help, watch a movie, play a simple game. “You’re living!” they say. I am grateful. But these are just things that pass the time within my capabilities. They are not passions or purposes. They are distractions, dissociations. #pwME
I know there are other meaningful things I could do. Frankly tho I don’t really want to do them. I want to do the things I loved in life.
November 4, 2025 at 5:53 PM
People see that I can sometimes do some art, cook a special meal w/ help, watch a movie, play a simple game. “You’re living!” they say. I am grateful. But these are just things that pass the time within my capabilities. They are not passions or purposes. They are distractions, dissociations. #pwME
Reposted by Alexis M.
So many people are entirely unprepared for the experience they're risking landing themselves in.
November 3, 2025 at 8:52 PM
So many people are entirely unprepared for the experience they're risking landing themselves in.
Reposted by Alexis M.
Or budget steps to the bathroom, or have to eat less because even digestion is too energetically expensive
They can't conceive of a world where myriad things they take for granted, all above the "it's basically free to do as much of this activity as you want!" cut line, become devastatingly limited
They can't conceive of a world where myriad things they take for granted, all above the "it's basically free to do as much of this activity as you want!" cut line, become devastatingly limited
November 3, 2025 at 8:39 PM
Or budget steps to the bathroom, or have to eat less because even digestion is too energetically expensive
They can't conceive of a world where myriad things they take for granted, all above the "it's basically free to do as much of this activity as you want!" cut line, become devastatingly limited
They can't conceive of a world where myriad things they take for granted, all above the "it's basically free to do as much of this activity as you want!" cut line, become devastatingly limited
Reposted by Alexis M.
Trying to explain my energy limitations to people without ME/CFS is the one thing that sort of makes it understandable for me why so many people are rolling the dice with infinite covid
They truly do not have a mental model for a body that sometimes requires you to budget even conversational energy
They truly do not have a mental model for a body that sometimes requires you to budget even conversational energy
November 3, 2025 at 8:35 PM
Trying to explain my energy limitations to people without ME/CFS is the one thing that sort of makes it understandable for me why so many people are rolling the dice with infinite covid
They truly do not have a mental model for a body that sometimes requires you to budget even conversational energy
They truly do not have a mental model for a body that sometimes requires you to budget even conversational energy
Reposted by Alexis M.
Food pantries for pets: www.pethelpfinder.org/m/phf/35
And most likely their pets as well.
November 3, 2025 at 5:24 PM
Food pantries for pets: www.pethelpfinder.org/m/phf/35
Reposted by Alexis M.
Pelvic pain & dysfunction can be part of post-infectious conditions like #LongCOVID & #MECFS.
In our latest ECHO session, Katie Woolf, DPT, PRPC, shares how gentle pelvic floor therapy can help improve comfort, stability, & daily function.
Watch: https://youtu.be/sA-ue_B1uZk
@uofuhealth.bsky.social
In our latest ECHO session, Katie Woolf, DPT, PRPC, shares how gentle pelvic floor therapy can help improve comfort, stability, & daily function.
Watch: https://youtu.be/sA-ue_B1uZk
@uofuhealth.bsky.social
Pelvic Health Considerations: Physical Therapy Perspective
Long COVID and Post-Infectious Syndromes ECHOA Practical Approach to Complex Long COVID & ME/CFS Patient CasesBateman Horne Center and the University of Utah...
youtu.be
October 30, 2025 at 5:16 PM
Pelvic pain & dysfunction can be part of post-infectious conditions like #LongCOVID & #MECFS.
In our latest ECHO session, Katie Woolf, DPT, PRPC, shares how gentle pelvic floor therapy can help improve comfort, stability, & daily function.
Watch: https://youtu.be/sA-ue_B1uZk
@uofuhealth.bsky.social
In our latest ECHO session, Katie Woolf, DPT, PRPC, shares how gentle pelvic floor therapy can help improve comfort, stability, & daily function.
Watch: https://youtu.be/sA-ue_B1uZk
@uofuhealth.bsky.social
If you are in the U.S. & living w/ a #disability do you know about STABLE savings accounts? Eligibility changes on January 1, 2026. Previously eligibility was if you became disabled before age 26. This changes to before 46, allowing a lot more people to qualify. #LongCovid
www.stableaccount.com
www.stableaccount.com
STABLE
An ABLE account for those with an eligible disability who want to save and invest for a better life, achieve financial empowerment and prepare for a more independent future.
www.stableaccount.com
October 31, 2025 at 4:26 PM
If you are in the U.S. & living w/ a #disability do you know about STABLE savings accounts? Eligibility changes on January 1, 2026. Previously eligibility was if you became disabled before age 26. This changes to before 46, allowing a lot more people to qualify. #LongCovid
www.stableaccount.com
www.stableaccount.com
Reposted by Alexis M.
Happy Halloween! 🕸🎃👻
October 31, 2025 at 1:03 PM
Happy Halloween! 🕸🎃👻
Reposted by Alexis M.
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is now open for enrollment for people with Long COVID in all states but Hawaii (due to concerns about maintaining temperature control in shipping), DC, and PR:
longcovid.scripps.edu/locitt-t/?ut...
longcovid.scripps.edu/locitt-t/?ut...
October 31, 2025 at 2:49 PM
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is now open for enrollment for people with Long COVID in all states but Hawaii (due to concerns about maintaining temperature control in shipping), DC, and PR:
longcovid.scripps.edu/locitt-t/?ut...
longcovid.scripps.edu/locitt-t/?ut...
Reposted by Alexis M.
Medscape: No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
'PEM has been well-documented in ME/CFS research showing abnormal biological responses after exertion as assessed by cardiopulmonary exercise testing (CPET)'
www.medscape.com/viewarticle/...
'PEM has been well-documented in ME/CFS research showing abnormal biological responses after exertion as assessed by cardiopulmonary exercise testing (CPET)'
www.medscape.com/viewarticle/...
No Evidence Supports Using Graded Exercise for ME/CFS
Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’
www.medscape.com
October 31, 2025 at 12:21 PM
Medscape: No Evidence Supports Using Graded Exercise for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
'PEM has been well-documented in ME/CFS research showing abnormal biological responses after exertion as assessed by cardiopulmonary exercise testing (CPET)'
www.medscape.com/viewarticle/...
'PEM has been well-documented in ME/CFS research showing abnormal biological responses after exertion as assessed by cardiopulmonary exercise testing (CPET)'
www.medscape.com/viewarticle/...
Reposted by Alexis M.
Case report by @sunsopeningband.bsky.social et al. @workwellfoundation.bsky.social @wearlumia.bsky.social
This case report explored whether reduced blood flow to the head contributes to postexertional malaise (PEM) in myalgic encephalomyelitis (ME). Using a new in-ear device, researchers measured
This case report explored whether reduced blood flow to the head contributes to postexertional malaise (PEM) in myalgic encephalomyelitis (ME). Using a new in-ear device, researchers measured
journals.lww.com
October 30, 2025 at 12:51 PM
Case report by @sunsopeningband.bsky.social et al. @workwellfoundation.bsky.social @wearlumia.bsky.social
This case report explored whether reduced blood flow to the head contributes to postexertional malaise (PEM) in myalgic encephalomyelitis (ME). Using a new in-ear device, researchers measured
This case report explored whether reduced blood flow to the head contributes to postexertional malaise (PEM) in myalgic encephalomyelitis (ME). Using a new in-ear device, researchers measured
Reposted by Alexis M.
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is officially open for enrollment for people with Long COVID in:
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16
LoCITT-T - Long COVID Treatment Trial
longcovid.scripps.edu
October 30, 2025 at 6:24 PM
The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is officially open for enrollment for people with Long COVID in:
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16
Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah
longcovid.scripps.edu/locitt-t/?ut...
1/16