Alex
@admiringbog.bsky.social
person with ME/CFS
professional slug
professional slug
Reposted by Alex
Glad to see this @wired.com guide on high quality masks! A KN95 can help protect you and your loved ones from COVID-19 and other airborne viruses, especially during this busy travel season. I only wish Wired wrote about the pandemic in the present tense 🙏😷
www.wired.com/story/best-d...
www.wired.com/story/best-d...
15 Good N95, KF94, and KN95 Face Masks to Buy Right Now
Flu season is here. These are the best disposable face coverings we’ve tested—and where you can find them.
www.wired.com
November 25, 2025 at 2:18 AM
Glad to see this @wired.com guide on high quality masks! A KN95 can help protect you and your loved ones from COVID-19 and other airborne viruses, especially during this busy travel season. I only wish Wired wrote about the pandemic in the present tense 🙏😷
www.wired.com/story/best-d...
www.wired.com/story/best-d...
Reposted by Alex
I have $639 left, thank you SO much to the generous people who already donated 😭
Because of the ice raids, I haven’t been able to find a caregiver through medicaid since June. For three days a week I have to hire one from a company, and it cost $39.50 an hour. I owe $898 from my last bill and I’m struggling. If youd like to donate I would appreciate it ❤️
Donate to Critical Healthcare Support for Victoria, organized by Vee Copeland
Hello everyone,
My name is Victoria and thank you for checking out my gofundme.… Vee Copeland needs your support for Critical Healthcare Support for Victoria
www.gofundme.com
November 24, 2025 at 4:11 PM
I have $639 left, thank you SO much to the generous people who already donated 😭
Reposted by Alex
The Conversation: Long COVID’s hidden toll: the South Africans still battling fatigue, anxiety & memory loss
'Listening to these stories reminded us that long COVID is not just a medical condition..deserves empathy, research & sustained public health attention'
theconversation.com/long-covids-...
'Listening to these stories reminded us that long COVID is not just a medical condition..deserves empathy, research & sustained public health attention'
theconversation.com/long-covids-...
Long COVID’s hidden toll: the South Africans still battling fatigue, anxiety and memory loss
Long COVID isn’t purely a biological problem; it’s a human one, shaped by both physiology and lived experience.
theconversation.com
November 24, 2025 at 5:48 PM
The Conversation: Long COVID’s hidden toll: the South Africans still battling fatigue, anxiety & memory loss
'Listening to these stories reminded us that long COVID is not just a medical condition..deserves empathy, research & sustained public health attention'
theconversation.com/long-covids-...
'Listening to these stories reminded us that long COVID is not just a medical condition..deserves empathy, research & sustained public health attention'
theconversation.com/long-covids-...
Reposted by Alex
Mucosal Viruses in ME/CFS: A Missing Piece of the Puzzle?
www.mdpi.com/1422-0067/26...
"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"
#MEcfs #PwME
www.mdpi.com/1422-0067/26...
"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"
#MEcfs #PwME
www.mdpi.com
November 24, 2025 at 2:40 AM
Mucosal Viruses in ME/CFS: A Missing Piece of the Puzzle?
www.mdpi.com/1422-0067/26...
"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"
#MEcfs #PwME
www.mdpi.com/1422-0067/26...
"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"
#MEcfs #PwME
Reposted by Alex
Brazilian singer Eva Rodrigues Praia Walkey has passed away in her 40s after fighting #LongCovid for five years. She endured lengthy hospital stays, 400 days in a coma, a cesarean section the day she was first hospitalized with hypoxia, 2 cardiac arrests, and lost 20% of her lungs
November 23, 2025 at 10:49 PM
Brazilian singer Eva Rodrigues Praia Walkey has passed away in her 40s after fighting #LongCovid for five years. She endured lengthy hospital stays, 400 days in a coma, a cesarean section the day she was first hospitalized with hypoxia, 2 cardiac arrests, and lost 20% of her lungs
Reposted by Alex
We always see a surge of infectious disease, including COVID, RSV, etc etc around Thanksgiving and Christmas. Unless you want to gift your fam with a few weeks sick this year, mask up as you travel!
November 24, 2025 at 12:24 AM
We always see a surge of infectious disease, including COVID, RSV, etc etc around Thanksgiving and Christmas. Unless you want to gift your fam with a few weeks sick this year, mask up as you travel!
Reposted by Alex
I unfortunately have had to do the same and literally hand my doctors this sheet along with the allergy list I provide at every appointment. It really is despicable bc it shouldn’t matter. People who were fat, disabled, not active etc deserve the same quality of care as others. It’s terrible.
November 24, 2025 at 12:40 AM
I unfortunately have had to do the same and literally hand my doctors this sheet along with the allergy list I provide at every appointment. It really is despicable bc it shouldn’t matter. People who were fat, disabled, not active etc deserve the same quality of care as others. It’s terrible.
Reposted by Alex
Ordinarily enrolling a thousand patients is a very protracted process of months or years—the speed of enrollment here is a chance to send a message that more trials should center patients like this one does.
To sign up or learn more:
To sign up or learn more:
November 23, 2025 at 9:19 PM
Ordinarily enrolling a thousand patients is a very protracted process of months or years—the speed of enrollment here is a chance to send a message that more trials should center patients like this one does.
To sign up or learn more:
To sign up or learn more:
Reposted by Alex
Many men won’t stay with their partners when they become chronically ill.
Others stay, but gaslight you and don’t believe you’re really sick.
I had an ex sneak me food he knew I was allergic to. His goal? “Prove” it was in my head.
When the anaphylaxis resolved, I dumped him
Others stay, but gaslight you and don’t believe you’re really sick.
I had an ex sneak me food he knew I was allergic to. His goal? “Prove” it was in my head.
When the anaphylaxis resolved, I dumped him
She Woke Her Boyfriend in the Night, Begging Him to Take Her to the ER. His Response Shattered Their Relationship
A woman on Reddit admitted she wanted to break up with her partner after he refused to take her to the hospital in the middle of the night, calling her "dramatic."
people.com
November 23, 2025 at 4:33 AM
Many men won’t stay with their partners when they become chronically ill.
Others stay, but gaslight you and don’t believe you’re really sick.
I had an ex sneak me food he knew I was allergic to. His goal? “Prove” it was in my head.
When the anaphylaxis resolved, I dumped him
Others stay, but gaslight you and don’t believe you’re really sick.
I had an ex sneak me food he knew I was allergic to. His goal? “Prove” it was in my head.
When the anaphylaxis resolved, I dumped him
Reposted by Alex
Cold and wet Sunday morning and Albertans are still showing up for their Trans neighbours, and everyone else targeted by attacks on human and civil rights.
November 23, 2025 at 6:03 PM
Cold and wet Sunday morning and Albertans are still showing up for their Trans neighbours, and everyone else targeted by attacks on human and civil rights.
Reposted by Alex
UK health officials urge extra precautions, including wearing a mask if you have symptoms, as 4 winter viruses spread: RSV, Flu, COVID and Norovirus.
Source: archive.md/z6uDK
Source: archive.md/z6uDK
November 23, 2025 at 4:32 AM
UK health officials urge extra precautions, including wearing a mask if you have symptoms, as 4 winter viruses spread: RSV, Flu, COVID and Norovirus.
Source: archive.md/z6uDK
Source: archive.md/z6uDK
Reposted by Alex
reminder that there are SARS-1 survivors who are still chronically ill.
it’s horrible that they convinced so many of us that SARS-2 is no big deal.
it’s horrible that they convinced so many of us that SARS-2 is no big deal.
November 23, 2025 at 7:01 AM
reminder that there are SARS-1 survivors who are still chronically ill.
it’s horrible that they convinced so many of us that SARS-2 is no big deal.
it’s horrible that they convinced so many of us that SARS-2 is no big deal.
Reposted by Alex
A waking death
A century before Long Covid, encephalitis lethargica left survivors frozen in time-living reminders of what happens when a pandemic ends but its patients remain
Long Covid..ME/CFS.. medicine still struggles to explain
By Ming Yang
healthchecksonhistory.substack.com/p/a-waking-d...
A century before Long Covid, encephalitis lethargica left survivors frozen in time-living reminders of what happens when a pandemic ends but its patients remain
Long Covid..ME/CFS.. medicine still struggles to explain
By Ming Yang
healthchecksonhistory.substack.com/p/a-waking-d...
A waking death
A century before Long Covid, encephalitis lethargica left survivors frozen in time- living reminders of what happens when a pandemic ends but its patients remain.
healthchecksonhistory.substack.com
November 23, 2025 at 4:29 PM
A waking death
A century before Long Covid, encephalitis lethargica left survivors frozen in time-living reminders of what happens when a pandemic ends but its patients remain
Long Covid..ME/CFS.. medicine still struggles to explain
By Ming Yang
healthchecksonhistory.substack.com/p/a-waking-d...
A century before Long Covid, encephalitis lethargica left survivors frozen in time-living reminders of what happens when a pandemic ends but its patients remain
Long Covid..ME/CFS.. medicine still struggles to explain
By Ming Yang
healthchecksonhistory.substack.com/p/a-waking-d...
Reposted by Alex
Sunday Times: '‘Living dead’ talk about lives shattered by Long Covid'
‘Zombies’ rise up at SICK Pride event to raise awareness'
'About 5-million to 10-million South Africans battle with the symptoms of Long Covid..extreme fatigue, brain fog..'
www.sundaytimes.timeslive.co.za/news/2025-11...
‘Zombies’ rise up at SICK Pride event to raise awareness'
'About 5-million to 10-million South Africans battle with the symptoms of Long Covid..extreme fatigue, brain fog..'
www.sundaytimes.timeslive.co.za/news/2025-11...
‘Living dead’ talk about lives shattered by Long Covid
Up to 10-million South Africans may be struggling with Covid symptoms long after 2019
www.sundaytimes.timeslive.co.za
November 23, 2025 at 2:23 PM
Sunday Times: '‘Living dead’ talk about lives shattered by Long Covid'
‘Zombies’ rise up at SICK Pride event to raise awareness'
'About 5-million to 10-million South Africans battle with the symptoms of Long Covid..extreme fatigue, brain fog..'
www.sundaytimes.timeslive.co.za/news/2025-11...
‘Zombies’ rise up at SICK Pride event to raise awareness'
'About 5-million to 10-million South Africans battle with the symptoms of Long Covid..extreme fatigue, brain fog..'
www.sundaytimes.timeslive.co.za/news/2025-11...
Reposted by Alex
Calling Long COVID a “shadow” and claiming the acute phase has “faded” is misleading.
COVID hasn’t faded, it still causes waves of ongoing transmission, repeat infections, hospital pressure, Long COVID and deaths. It’s not a shadow; it’s still shining a light on an ongoing crisis.
archive.md/9Tcay
COVID hasn’t faded, it still causes waves of ongoing transmission, repeat infections, hospital pressure, Long COVID and deaths. It’s not a shadow; it’s still shining a light on an ongoing crisis.
archive.md/9Tcay
November 22, 2025 at 11:58 PM
Calling Long COVID a “shadow” and claiming the acute phase has “faded” is misleading.
COVID hasn’t faded, it still causes waves of ongoing transmission, repeat infections, hospital pressure, Long COVID and deaths. It’s not a shadow; it’s still shining a light on an ongoing crisis.
archive.md/9Tcay
COVID hasn’t faded, it still causes waves of ongoing transmission, repeat infections, hospital pressure, Long COVID and deaths. It’s not a shadow; it’s still shining a light on an ongoing crisis.
archive.md/9Tcay
@thesicktimes is the first news source I’ve seen mention ME/CFS as one of the conditions connected to EBV
November 22, 2025 at 10:00 PM
@thesicktimes is the first news source I’ve seen mention ME/CFS as one of the conditions connected to EBV
I agree, I donated as well.
The first feature-length documentary on ME/CFS & #LongCOVID, “What Doesn’t Kill You…” is crowd-funding.
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
I believe video and in particular documentaries can be a powerful way to get messages across & am impressed so far so have donated for a second time
www.youtube.com/watch?v=y1rS...
#MEcfs
1/
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowdfunding)
YouTube video by What Doesn't Kill You
www.youtube.com
November 22, 2025 at 8:38 PM
I agree, I donated as well.
Reposted by Alex
This is another oft-undescribed thing! Often people who have "recovered" still experience PEM, just at much, much higher levels of activity.
Thread.
Even now, when I am 90% back to my pre-Covid baseline, I can experience PEM after going past my now-better (much!) limit. You say, “Hey! If I go past my limit, I am stuck feeling flu-like for two to three days!”, and they don’t listen.
Even now, when I am 90% back to my pre-Covid baseline, I can experience PEM after going past my now-better (much!) limit. You say, “Hey! If I go past my limit, I am stuck feeling flu-like for two to three days!”, and they don’t listen.
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
November 22, 2025 at 1:49 PM
This is another oft-undescribed thing! Often people who have "recovered" still experience PEM, just at much, much higher levels of activity.
Reposted by Alex
!! Thank you so much to everyone who’s volunteering for this, and who’s been sharing with their friends. It’s so exciting to see science move forward this fast!
We are up to 688 LoCITT participants!
If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.
We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...
If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.
We appreciate the community's help to spread the word:
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 21, 2025 at 8:32 PM
!! Thank you so much to everyone who’s volunteering for this, and who’s been sharing with their friends. It’s so exciting to see science move forward this fast!
I got this from the library and the recipes are generally too much exertion for me right now, might try again later. Cooking is a huge energy sink even when it’s simple.
"Trial By Error: A New Cookbook for People with Chronic Illness" By David Tuller
virology.ws/2025/11/19/t...
[ @rachelriggs.bsky.social...diagnoses include myalgic encephalomyelitis (ME), mast cell activation syndrome & postural orthostatic tachycardia syndrome]
#chronicillness #MEcfs #POTS #MCAS
virology.ws/2025/11/19/t...
[ @rachelriggs.bsky.social...diagnoses include myalgic encephalomyelitis (ME), mast cell activation syndrome & postural orthostatic tachycardia syndrome]
#chronicillness #MEcfs #POTS #MCAS
November 21, 2025 at 9:50 PM
I got this from the library and the recipes are generally too much exertion for me right now, might try again later. Cooking is a huge energy sink even when it’s simple.
I’m tired Grandpa
Today @thesicktimes.org: big story from @spichaksimon.bsky.social examining exercise trials for Long COVID. His analysis found that, among LC exercise trials registered on clinicaltrials.gov, less than 20% even *mention* PEM in their trial registration. thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
thesicktimes.org
November 21, 2025 at 8:08 PM
I’m tired Grandpa
Amy mentions that she’s pretty sure that the White House has put in Far-UVC systems in addition to good air ventilation and purification. I would love to find a source confirming this.
#cleanair
www.existentialhope.com/podcasts/amy...
#cleanair
www.existentialhope.com/podcasts/amy...
Amy Proal | Rethinking chronic disease
www.existentialhope.com
November 21, 2025 at 7:18 PM
Amy mentions that she’s pretty sure that the White House has put in Far-UVC systems in addition to good air ventilation and purification. I would love to find a source confirming this.
#cleanair
www.existentialhope.com/podcasts/amy...
#cleanair
www.existentialhope.com/podcasts/amy...
Reposted by Alex
There should be infinitely more interest in this medical mystery.
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
November 20, 2025 at 8:13 AM
There should be infinitely more interest in this medical mystery.
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
Reposted by Alex
Remember the 800 times I’ve said you cannot contain the “let er rip” attitude to just covid? Humans don’t think like that. This was always an obvious consequence, and it’s their own damn fault.
November 19, 2025 at 11:50 PM
Remember the 800 times I’ve said you cannot contain the “let er rip” attitude to just covid? Humans don’t think like that. This was always an obvious consequence, and it’s their own damn fault.