S.Jones
@seastarsal.bsky.social
Chronically enraged that I've had ME/CFS since 1992.
cfsgraphics.com
cfsgraphics.com
Reposted by S.Jones
#pwME #LongCovidME please help Rob Wüst with establishing a clincial definition of #PEM.
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
Questionnaire | page 1
www.soscisurvey.de
November 22, 2025 at 8:36 AM
#pwME #LongCovidME please help Rob Wüst with establishing a clincial definition of #PEM.
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
Reposted by S.Jones
Please share with people with #LongCOVID in your life. It would be incredible to hit 1000 in the next week! (They are already over 700 since this post!)
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 24, 2025 at 8:47 PM
Please share with people with #LongCOVID in your life. It would be incredible to hit 1000 in the next week! (They are already over 700 since this post!)
Reposted by S.Jones
Not an ME/CFS researcher? Perfect. That's exactly who we need.
The ME/CFS Fellowship 2026 seeks fresh perspectives from a wide range of life science researchers including biochemists, cell biologists, geneticists, neuroscientists, physiologists., etc.
#MECFS #LongCOVID #AcademicSky 🧪
The ME/CFS Fellowship 2026 seeks fresh perspectives from a wide range of life science researchers including biochemists, cell biologists, geneticists, neuroscientists, physiologists., etc.
#MECFS #LongCOVID #AcademicSky 🧪
November 3, 2025 at 4:12 PM
Not an ME/CFS researcher? Perfect. That's exactly who we need.
The ME/CFS Fellowship 2026 seeks fresh perspectives from a wide range of life science researchers including biochemists, cell biologists, geneticists, neuroscientists, physiologists., etc.
#MECFS #LongCOVID #AcademicSky 🧪
The ME/CFS Fellowship 2026 seeks fresh perspectives from a wide range of life science researchers including biochemists, cell biologists, geneticists, neuroscientists, physiologists., etc.
#MECFS #LongCOVID #AcademicSky 🧪
Reposted by S.Jones
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
November 23, 2025 at 6:23 PM
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Reposted by S.Jones
Really moving artistic visual of a POTS experience
The Glitch
YouTube video by unicorneliaw
youtu.be
November 3, 2025 at 6:13 PM
Really moving artistic visual of a POTS experience
Reposted by S.Jones
Pete Buttigieg would be a good DNC spokesperson.
He would do a GREAT job of going around the country, being on TV all the time, and putting out Dem messaging on EVERY issue.
He would be an excellent counter-Leavitt. And we NEED one. He should be holding regular press conferences and putting
He would do a GREAT job of going around the country, being on TV all the time, and putting out Dem messaging on EVERY issue.
He would be an excellent counter-Leavitt. And we NEED one. He should be holding regular press conferences and putting
November 22, 2025 at 1:30 PM
Pete Buttigieg would be a good DNC spokesperson.
He would do a GREAT job of going around the country, being on TV all the time, and putting out Dem messaging on EVERY issue.
He would be an excellent counter-Leavitt. And we NEED one. He should be holding regular press conferences and putting
He would do a GREAT job of going around the country, being on TV all the time, and putting out Dem messaging on EVERY issue.
He would be an excellent counter-Leavitt. And we NEED one. He should be holding regular press conferences and putting
Reposted by S.Jones
Once again, this is adorable and very informative 🧪
November 21, 2025 at 10:19 PM
Once again, this is adorable and very informative 🧪
Reposted by S.Jones
A massive thank you to @tessamunt.bsky.social for tabling this debate on #ME - for listening to patients & advocates and representing the community so well.
Also to @joplatt.bsky.social and every other MP who showed up and talked so compassionately about their constituents.
youtu.be/wZFEUnjWgOA?...
Also to @joplatt.bsky.social and every other MP who showed up and talked so compassionately about their constituents.
youtu.be/wZFEUnjWgOA?...
Westminster Hall Debate on Support for People with ME/CFS - November 2025
YouTube video by Broken Battery
youtu.be
November 19, 2025 at 8:35 PM
A massive thank you to @tessamunt.bsky.social for tabling this debate on #ME - for listening to patients & advocates and representing the community so well.
Also to @joplatt.bsky.social and every other MP who showed up and talked so compassionately about their constituents.
youtu.be/wZFEUnjWgOA?...
Also to @joplatt.bsky.social and every other MP who showed up and talked so compassionately about their constituents.
youtu.be/wZFEUnjWgOA?...
Reposted by S.Jones
Yup. Think Seimens, BMW, I.G. Farben, steel and coal company Krupp, BMW, and Daimler-Benz (Mercedes-Benz). In 2025 it's the tech bros and their trillions, choosing fascism over morality and democracy.
Will we have our Nuremberg? Will these thugs and corporate billionaires be held accountable?
Will we have our Nuremberg? Will these thugs and corporate billionaires be held accountable?
Don't be evil?
"Google is hosting a CBP app that uses facial recognition to identify immigrants, and tell local cops whether to contact ICE about the person, while simultaneously removing apps designed to warn local communities about the presence of ICE officers..."
www.404media.co/google-has-c...
"Google is hosting a CBP app that uses facial recognition to identify immigrants, and tell local cops whether to contact ICE about the person, while simultaneously removing apps designed to warn local communities about the presence of ICE officers..."
www.404media.co/google-has-c...
Google Has Chosen a Side in Trump's Mass Deportation Effort
Google is hosting a CBP app that uses facial recognition to identify immigrants, while simultaneously removing apps that report the location of ICE officials because Google sees ICE as a vulnerable gr...
www.404media.co
November 16, 2025 at 5:16 AM
Yup. Think Seimens, BMW, I.G. Farben, steel and coal company Krupp, BMW, and Daimler-Benz (Mercedes-Benz). In 2025 it's the tech bros and their trillions, choosing fascism over morality and democracy.
Will we have our Nuremberg? Will these thugs and corporate billionaires be held accountable?
Will we have our Nuremberg? Will these thugs and corporate billionaires be held accountable?
Reposted by S.Jones
🧵
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome
www.sciencedirect.com/science/arti...
"Severe ME/CFS patients face deep social, medical, and structural exclusion."
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome
www.sciencedirect.com/science/arti...
"Severe ME/CFS patients face deep social, medical, and structural exclusion."
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
November 11, 2025 at 12:47 PM
🧵
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome
www.sciencedirect.com/science/arti...
"Severe ME/CFS patients face deep social, medical, and structural exclusion."
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome
www.sciencedirect.com/science/arti...
"Severe ME/CFS patients face deep social, medical, and structural exclusion."
#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
1/
Reposted by S.Jones
ME/CFS is awful—but our community is kind of amazing. Our researchers, clinicians & advocates work together like no other, wearing many hats & fighting fiercely to improve patients’ lives. 💙
www.facebook.com/whitneydafoe...
www.facebook.com/whitneydafoe...
Whitney Dafoe
One Thing ☝️
Did you know that all the best ME/CFS researchers in the world - for example, every single researcher at Ron’s recent Working Group Meeting - every researcher there said they don’t care....
www.facebook.com
November 6, 2025 at 1:04 AM
ME/CFS is awful—but our community is kind of amazing. Our researchers, clinicians & advocates work together like no other, wearing many hats & fighting fiercely to improve patients’ lives. 💙
www.facebook.com/whitneydafoe...
www.facebook.com/whitneydafoe...
Reposted by S.Jones
It’s awesome to see awareness of the seriousness of this disease growing.
Check out the paper here: 👇
journals.lww.com/tnpj/fulltex...
Check out the paper here: 👇
journals.lww.com/tnpj/fulltex...
journals.lww.com
November 1, 2025 at 5:31 PM
It’s awesome to see awareness of the seriousness of this disease growing.
Check out the paper here: 👇
journals.lww.com/tnpj/fulltex...
Check out the paper here: 👇
journals.lww.com/tnpj/fulltex...
Happy Halloween to everyone stricken with this monstrous disease.
@tomkindlon.bsky.social @maddow.msnbc.com @erictopol.bsky.social @rivkabluesky.bsky.social @kaufmanmd.bsky.social @kaine.senate.gov @mrsbettybowers.bsky.social @seastarsal.bsky.social
@tomkindlon.bsky.social @maddow.msnbc.com @erictopol.bsky.social @rivkabluesky.bsky.social @kaufmanmd.bsky.social @kaine.senate.gov @mrsbettybowers.bsky.social @seastarsal.bsky.social
October 31, 2025 at 10:07 PM
Happy Halloween to everyone stricken with this monstrous disease.
@tomkindlon.bsky.social @maddow.msnbc.com @erictopol.bsky.social @rivkabluesky.bsky.social @kaufmanmd.bsky.social @kaine.senate.gov @mrsbettybowers.bsky.social @seastarsal.bsky.social
@tomkindlon.bsky.social @maddow.msnbc.com @erictopol.bsky.social @rivkabluesky.bsky.social @kaufmanmd.bsky.social @kaine.senate.gov @mrsbettybowers.bsky.social @seastarsal.bsky.social
Reposted by S.Jones
Those are actually the hallmark features of ME/CFS.
Medicine has completely botched everything dealing with ME/CFS for decades, has refused thousands of opportunities to do better about it.
And yet again it has been botched so completely that the past doesn't even exist, erased from existence.
Medicine has completely botched everything dealing with ME/CFS for decades, has refused thousands of opportunities to do better about it.
And yet again it has been botched so completely that the past doesn't even exist, erased from existence.
Medscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know'
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
Long COVID in Kids: What Pediatricians Need to Know
New research suggests that children and teens who get COVID a second time face twice the risk for developing long COVID.
www.medscape.com
October 29, 2025 at 2:45 PM
Those are actually the hallmark features of ME/CFS.
Medicine has completely botched everything dealing with ME/CFS for decades, has refused thousands of opportunities to do better about it.
And yet again it has been botched so completely that the past doesn't even exist, erased from existence.
Medicine has completely botched everything dealing with ME/CFS for decades, has refused thousands of opportunities to do better about it.
And yet again it has been botched so completely that the past doesn't even exist, erased from existence.
Reposted by S.Jones
This is a great idea
Why is it that every disappeared US citizen is not front page news? At the very least we should have a little box with a count of the number of citizens who have been taken away and are not locatable and a link to a story with photos & min-bios, just as we used to do with military casually figures.
In Portland, Oregon, masked ICE GOONS abducted and vanished US citizen Gonzalo Catalan last week. Tragically, his family remains unaware of his whereabouts and has not received any communication from him as of today.
October 30, 2025 at 3:30 AM
This is a great idea
Reposted by S.Jones
Dr Oz: “I think we all agree that Covid has passed”.
No we do not agree!
Anyone who thinks Covid has passed has no business in charge of public health.
It’s still here. It’s still killing and disabling.
Get your booster if you can. Wear a mask (ideally an N95) and clean the air!
No we do not agree!
Anyone who thinks Covid has passed has no business in charge of public health.
It’s still here. It’s still killing and disabling.
Get your booster if you can. Wear a mask (ideally an N95) and clean the air!
October 30, 2025 at 5:06 AM
Dr Oz: “I think we all agree that Covid has passed”.
No we do not agree!
Anyone who thinks Covid has passed has no business in charge of public health.
It’s still here. It’s still killing and disabling.
Get your booster if you can. Wear a mask (ideally an N95) and clean the air!
No we do not agree!
Anyone who thinks Covid has passed has no business in charge of public health.
It’s still here. It’s still killing and disabling.
Get your booster if you can. Wear a mask (ideally an N95) and clean the air!
Reposted by S.Jones
If I were running the DNC, there would be Democratic Party sponsored food relief banks across the country right now that specifically welcomed anyone regardless of party affiliation.
Along with the food, there could be voter registration and links to runforsomething.net
Along with the food, there could be voter registration and links to runforsomething.net
October 26, 2025 at 9:03 PM
If I were running the DNC, there would be Democratic Party sponsored food relief banks across the country right now that specifically welcomed anyone regardless of party affiliation.
Along with the food, there could be voter registration and links to runforsomething.net
Along with the food, there could be voter registration and links to runforsomething.net
Reposted by S.Jones
Or we could have our own fricking press secretary
October 24, 2025 at 8:57 PM
Or we could have our own fricking press secretary
Reposted by S.Jones
We need our own opposition press secretary/spokesperson. And Pete is the perfect person to do it.
October 24, 2025 at 3:56 AM
We need our own opposition press secretary/spokesperson. And Pete is the perfect person to do it.
Reposted by S.Jones
10/24/2025- Ballroom Dancing www.timesfreepress.com/news/2025/oc...
October 24, 2025 at 12:44 AM
10/24/2025- Ballroom Dancing www.timesfreepress.com/news/2025/oc...
Reposted by S.Jones
Just published: Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study. J Transl Med 23, 1148 (2025). doi.org/10.1186/s129...
Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study - Journal of Translational Medicine
Background mTOR activation is associated with chronic inflammation in ME/CFS. Previous studies have shown that sustained mTOR activation may cause chronic muscle fatigue by inhibiting ATG13-mediated a...
doi.org
October 21, 2025 at 4:41 PM
Just published: Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study. J Transl Med 23, 1148 (2025). doi.org/10.1186/s129...
Reposted by S.Jones
But RFKjr knows better because he is a brilliant scientist.
A surprise bonus from COVID-19 vaccines: bolstering cancer treatment
Science
October 20, 2025
By Phie Jacobs
stillcoviding.ca/en/news/a-su...
#cancer #COVID #health #vaccines
Science
October 20, 2025
By Phie Jacobs
stillcoviding.ca/en/news/a-su...
#cancer #COVID #health #vaccines
A surprise bonus from COVID-19 vaccines: bolstering cancer treatment
stillcoviding.ca
October 22, 2025 at 2:23 AM
But RFKjr knows better because he is a brilliant scientist.
Reposted by S.Jones
Cameron Winklevoss and Tyler Winklevoss – crypto billionaires
Kelly Loeffler and husband Jeff Sprecher –
Benjamin Leon Jr.
Miriam Adelson
MAKE THESE ASSHOLES PAY FOR THEIR CORRUPTION. PUBLICIZE THIS, BOYCOTT THEM, BE RELENTLESS.
Kelly Loeffler and husband Jeff Sprecher –
Benjamin Leon Jr.
Miriam Adelson
MAKE THESE ASSHOLES PAY FOR THEIR CORRUPTION. PUBLICIZE THIS, BOYCOTT THEM, BE RELENTLESS.
October 23, 2025 at 10:34 PM
Cameron Winklevoss and Tyler Winklevoss – crypto billionaires
Kelly Loeffler and husband Jeff Sprecher –
Benjamin Leon Jr.
Miriam Adelson
MAKE THESE ASSHOLES PAY FOR THEIR CORRUPTION. PUBLICIZE THIS, BOYCOTT THEM, BE RELENTLESS.
Kelly Loeffler and husband Jeff Sprecher –
Benjamin Leon Jr.
Miriam Adelson
MAKE THESE ASSHOLES PAY FOR THEIR CORRUPTION. PUBLICIZE THIS, BOYCOTT THEM, BE RELENTLESS.
Reposted by S.Jones
Apple Inc.,
Meta Platforms
Microsoft Corporation
Comcast Corporation
Altria Group and Reynolds American
Carrier Global Corporation
Individuals / Families:
Stephen A. Schwarzman (Blackstone CEO)
Harold Hamm (oil magnate)
Meta Platforms
Microsoft Corporation
Comcast Corporation
Altria Group and Reynolds American
Carrier Global Corporation
Individuals / Families:
Stephen A. Schwarzman (Blackstone CEO)
Harold Hamm (oil magnate)
October 23, 2025 at 10:34 PM
Apple Inc.,
Meta Platforms
Microsoft Corporation
Comcast Corporation
Altria Group and Reynolds American
Carrier Global Corporation
Individuals / Families:
Stephen A. Schwarzman (Blackstone CEO)
Harold Hamm (oil magnate)
Meta Platforms
Microsoft Corporation
Comcast Corporation
Altria Group and Reynolds American
Carrier Global Corporation
Individuals / Families:
Stephen A. Schwarzman (Blackstone CEO)
Harold Hamm (oil magnate)