Jill
@aiteallcreations.bsky.social
Aiteall “AT-ell” - A fine spot of weather between showers
Living with chronic illness (ME, POTS, LC)
Surviving on dark humor, art, & gratitude
Living with chronic illness (ME, POTS, LC)
Surviving on dark humor, art, & gratitude
Reposted by Jill
These vaccines could prevent so much absolutely horrific suffering if anyone in power actually cared about preventing human suffering… everything from MS, ME/CFS, multiple cancers, dementia… we could stop them in their tracks if we wanted to
#TripleTheNIHBudget
#TripleTheNIHBudget
February 13, 2026 at 5:45 AM
These vaccines could prevent so much absolutely horrific suffering if anyone in power actually cared about preventing human suffering… everything from MS, ME/CFS, multiple cancers, dementia… we could stop them in their tracks if we wanted to
#TripleTheNIHBudget
#TripleTheNIHBudget
This week, after reading more about the Epstein files, I remembered when I was in a beauty pageant in Atlantic City in the 80s. It had a bathing suit component to it. I was 10.
February 12, 2026 at 2:00 AM
This week, after reading more about the Epstein files, I remembered when I was in a beauty pageant in Atlantic City in the 80s. It had a bathing suit component to it. I was 10.
Reposted by Jill
Great to see this sympathetic overview article in the LA Times
www.latimes.com/doctors-scie...
It's long so many if not most patients probably won't agree with every sentence but overall gets across a lot sympathetically.
Note: it doesn't focus on any particular news
#MEcfs #CFS #PwME
www.latimes.com/doctors-scie...
It's long so many if not most patients probably won't agree with every sentence but overall gets across a lot sympathetically.
Note: it doesn't focus on any particular news
#MEcfs #CFS #PwME
December 23, 2025 at 2:27 PM
Great to see this sympathetic overview article in the LA Times
www.latimes.com/doctors-scie...
It's long so many if not most patients probably won't agree with every sentence but overall gets across a lot sympathetically.
Note: it doesn't focus on any particular news
#MEcfs #CFS #PwME
www.latimes.com/doctors-scie...
It's long so many if not most patients probably won't agree with every sentence but overall gets across a lot sympathetically.
Note: it doesn't focus on any particular news
#MEcfs #CFS #PwME
Post-infection chronic illnesses, like POTS & MECFS, can obliterate a person’s quality of life. Having physicians who won’t take ownership of treatment is demoralizing. Add this to the lack of understanding from family & friends, it is no wonder the suicide rate is high in those affected.
Medscape: Where Is the Medical Home for Postinfectious Illness?
"COVID pandemic brought a surge of more patients with POTS & infection-associated chronic illness. What had once felt like a rare or niche diagnosis now seemed to be everywhere, impossible to ignore"
www.medscape.com/viewarticle/...
"COVID pandemic brought a surge of more patients with POTS & infection-associated chronic illness. What had once felt like a rare or niche diagnosis now seemed to be everywhere, impossible to ignore"
www.medscape.com/viewarticle/...
Where Is the Medical Home for Postinfectious Illness?
A rheumatologist calls for greater awareness among her colleagues but also emphasizes that these patients require multidisciplinary care.
www.medscape.com
August 20, 2025 at 5:08 PM
Post-infection chronic illnesses, like POTS & MECFS, can obliterate a person’s quality of life. Having physicians who won’t take ownership of treatment is demoralizing. Add this to the lack of understanding from family & friends, it is no wonder the suicide rate is high in those affected.
This thread is terrifying, but the pushback gives me some hope. Thank you to all the people testifying today against the EPA’s proposed drastic removal of environmental protections.
August 20, 2025 at 4:57 PM
This thread is terrifying, but the pushback gives me some hope. Thank you to all the people testifying today against the EPA’s proposed drastic removal of environmental protections.
Reposted by Jill
Mount Sinai’s Cohen Center has released a free clinical provider manual for diagnosing and managing conditions like Long COVID and ME/CFS. Get the IACI Provider Manual here: icahn.mssm.edu/research/coh...
Resources at Cohen Center for Recovery from Complex Chronic Illness | Icahn School of Medicine
Learn about resources at the Cohen Center for Recovery from Complex Chronic Illness. Stay updated on research and treatment options for chronic illnesses.
icahn.mssm.edu
August 15, 2025 at 6:08 PM
Mount Sinai’s Cohen Center has released a free clinical provider manual for diagnosing and managing conditions like Long COVID and ME/CFS. Get the IACI Provider Manual here: icahn.mssm.edu/research/coh...
Reposted by Jill
The reality for people with the neuro-immuno-metabolic disease called #ME/CFS, is that there is no country in the whole world, where we are promptly diagnosed, cared for and supported. We have zero approved treatments and are still buried under a mountain of ignorance, stigma & neglect each and
August 8, 2025 at 6:38 PM
The reality for people with the neuro-immuno-metabolic disease called #ME/CFS, is that there is no country in the whole world, where we are promptly diagnosed, cared for and supported. We have zero approved treatments and are still buried under a mountain of ignorance, stigma & neglect each and
Reposted by Jill
Results
The average age of death was 52.5 years (SD = 16.7). Most individuals were female (73.0%) and resided in North America (68.9%). The most frequently reported causes of death were #ME/CFS or complications (28.3%), suicide (25.4%), cancer (23.0%), and cardiovascular disease (14.2%). Suicide was
The average age of death was 52.5 years (SD = 16.7). Most individuals were female (73.0%) and resided in North America (68.9%). The most frequently reported causes of death were #ME/CFS or complications (28.3%), suicide (25.4%), cancer (23.0%), and cardiovascular disease (14.2%). Suicide was
Mortality in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): an updated analysis of memorial records
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition associated with substantial functional impairment. Although historically considered non-fatal, recent studies ha...
www.tandfonline.com
August 7, 2025 at 10:02 PM
Results
The average age of death was 52.5 years (SD = 16.7). Most individuals were female (73.0%) and resided in North America (68.9%). The most frequently reported causes of death were #ME/CFS or complications (28.3%), suicide (25.4%), cancer (23.0%), and cardiovascular disease (14.2%). Suicide was
The average age of death was 52.5 years (SD = 16.7). Most individuals were female (73.0%) and resided in North America (68.9%). The most frequently reported causes of death were #ME/CFS or complications (28.3%), suicide (25.4%), cancer (23.0%), and cardiovascular disease (14.2%). Suicide was
Reposted by Jill
Local CEO caught CHEATING at Phillies game?!
July 19, 2025 at 1:07 AM
Local CEO caught CHEATING at Phillies game?!
Reposted by Jill
The first time Charlie Chaplin used his voice in a film, he wielded it to forcefully condemn the rising forces of fascism around the globe.
Will we listen to his words today?
Will we listen to his words today?
July 10, 2025 at 5:02 PM
The first time Charlie Chaplin used his voice in a film, he wielded it to forcefully condemn the rising forces of fascism around the globe.
Will we listen to his words today?
Will we listen to his words today?
Transgender kids should not be a sacrifice for Democrats to win the vote of those who are ignorant of complex issues.
The Transgender “Issue” Is Not a Distraction for Democrats
open.substack.com/pub/thebulwa...
The Transgender “Issue” Is Not a Distraction for Democrats
open.substack.com/pub/thebulwa...
The Transgender “Issue” Is Not a Distraction for Democrats
It’s an opportunity to speak clearly about human rights and morality. Follow the facts and the Golden Rule.
open.substack.com
July 7, 2025 at 6:51 PM
Transgender kids should not be a sacrifice for Democrats to win the vote of those who are ignorant of complex issues.
The Transgender “Issue” Is Not a Distraction for Democrats
open.substack.com/pub/thebulwa...
The Transgender “Issue” Is Not a Distraction for Democrats
open.substack.com/pub/thebulwa...
Reposted by Jill
Over 70 Labour MPs have backed a motion opposing cuts to disability benefits, in a major blow to the government.
The Mirror understands the backbenchers - including 10 chairs of Commons committees - have signed an amendment rejecting the reforms. www.mirror.co.uk/news/politic...
The Mirror understands the backbenchers - including 10 chairs of Commons committees - have signed an amendment rejecting the reforms. www.mirror.co.uk/news/politic...
DWP disability benefit cuts rebellion as over 70 Labour MPs reject plans
The Mirror understands the Labour backbenchers - including 10 chairs of Commons committees - have signed an amendment rejecting the cuts to disability benefits
www.mirror.co.uk
June 23, 2025 at 7:10 PM
Over 70 Labour MPs have backed a motion opposing cuts to disability benefits, in a major blow to the government.
The Mirror understands the backbenchers - including 10 chairs of Commons committees - have signed an amendment rejecting the reforms. www.mirror.co.uk/news/politic...
The Mirror understands the backbenchers - including 10 chairs of Commons committees - have signed an amendment rejecting the reforms. www.mirror.co.uk/news/politic...
Reposted by Jill
🇮🇱☢️🇮🇷 CNN: A selection of videos of Netanyahu warning that Iran is close to nuclear weapons, the first warnings have been going on since 1996.
June 18, 2025 at 8:39 AM
🇮🇱☢️🇮🇷 CNN: A selection of videos of Netanyahu warning that Iran is close to nuclear weapons, the first warnings have been going on since 1996.
Reposted by Jill
Scale of how #ME/CFS affects blood revealed
People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness. www.ed.ac.uk/news/scale-o...
People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness. www.ed.ac.uk/news/scale-o...
Scale of how ME/CFS affects blood revealed
People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating i...
www.ed.ac.uk
June 20, 2025 at 10:49 PM
Scale of how #ME/CFS affects blood revealed
People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness. www.ed.ac.uk/news/scale-o...
People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness. www.ed.ac.uk/news/scale-o...
An eye-opening video. The written instructions for riders on what to do when the elevator is out of service is mind boggling! Refreshing to see a candidate with a true understanding of accessibility issues for people with disabilities.
This is an excellent demonstration of access issues on the NYC subway, created by Brad Lander, who's running for NYC Mayor.
This is the guy who just faced assault and arrest from ICE because he was doing what city officials are supposed to: escorting immigrants to and from court hearings
#NEISvoid
This is the guy who just faced assault and arrest from ICE because he was doing what city officials are supposed to: escorting immigrants to and from court hearings
#NEISvoid
Whether visible or invisible, permanent or temporary, almost all of us will have or know someone with a disability.
As Mayor, I’ll fight like hell for truly accessible public transit.
As Mayor, I’ll fight like hell for truly accessible public transit.
June 18, 2025 at 6:40 PM
An eye-opening video. The written instructions for riders on what to do when the elevator is out of service is mind boggling! Refreshing to see a candidate with a true understanding of accessibility issues for people with disabilities.
Reposted by Jill
The news really sucks today.
Instead of boosting a harmful Supreme Court decision, here’s something better:
a practical guide on how to support the LGBTQ+ youth in your life.
Because they deserve our attention, our protection, and our love. 💖🏳️⚧️🏳️🌈
www.thetrevorproject.org/resources/ar...
Instead of boosting a harmful Supreme Court decision, here’s something better:
a practical guide on how to support the LGBTQ+ youth in your life.
Because they deserve our attention, our protection, and our love. 💖🏳️⚧️🏳️🌈
www.thetrevorproject.org/resources/ar...
Friends & Family Support Systems for LGBTQ+ Youth
Discover ways to support LGBTQ+ young people through FAQs and educational resources for friends and family members.
www.thetrevorproject.org
June 18, 2025 at 3:12 PM
The news really sucks today.
Instead of boosting a harmful Supreme Court decision, here’s something better:
a practical guide on how to support the LGBTQ+ youth in your life.
Because they deserve our attention, our protection, and our love. 💖🏳️⚧️🏳️🌈
www.thetrevorproject.org/resources/ar...
Instead of boosting a harmful Supreme Court decision, here’s something better:
a practical guide on how to support the LGBTQ+ youth in your life.
Because they deserve our attention, our protection, and our love. 💖🏳️⚧️🏳️🌈
www.thetrevorproject.org/resources/ar...
Reposted by Jill
Everything that’s happened over the past six months has been a response to an imaginary crisis. There is no immigrant invasion. No trade crisis. No scientific or governance crisis. Just people completely high off their own supply trying to fundamentally reorder society. None of this had to happen.
June 9, 2025 at 12:39 AM
Everything that’s happened over the past six months has been a response to an imaginary crisis. There is no immigrant invasion. No trade crisis. No scientific or governance crisis. Just people completely high off their own supply trying to fundamentally reorder society. None of this had to happen.
There is no excuse, at this point, for doctors to not understand the basics of MECFS, especially PEM. With a growing cohort of patients post-COVID, ME remains underfunded & misunderstood. For severe patients, medical ignorance & hubris can and has been deadly.
www.bmj.com/content/389/...
www.bmj.com/content/389/...
Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.
www.bmj.com
May 21, 2025 at 4:30 PM
There is no excuse, at this point, for doctors to not understand the basics of MECFS, especially PEM. With a growing cohort of patients post-COVID, ME remains underfunded & misunderstood. For severe patients, medical ignorance & hubris can and has been deadly.
www.bmj.com/content/389/...
www.bmj.com/content/389/...
Reposted by Jill
A brilliant essay on the relationships of: the COVID pandemic, climate change, the disabled community and the maddening indifference to it all.
Written by Violet Affleck: someone who sees the big picture and is making a difference.
yaleglobalhealthreview.com/2025/05/18/a...
Written by Violet Affleck: someone who sees the big picture and is making a difference.
yaleglobalhealthreview.com/2025/05/18/a...
A Chronically Ill Earth: COVID Organizing as a Model Climate Response in Los Angeles
BY VIOLET AFFLECK I spent the January fires in Los Angeles arguing with my mother in a hotel room. She was shell-shocked, astonished at the scale of destruction in the neighborhood where she raised…
yaleglobalhealthreview.com
May 20, 2025 at 11:11 AM
A brilliant essay on the relationships of: the COVID pandemic, climate change, the disabled community and the maddening indifference to it all.
Written by Violet Affleck: someone who sees the big picture and is making a difference.
yaleglobalhealthreview.com/2025/05/18/a...
Written by Violet Affleck: someone who sees the big picture and is making a difference.
yaleglobalhealthreview.com/2025/05/18/a...
Reposted by Jill
It's ME/CFS Day of Awareness. For 7 years, I've been the full-time caretaker for my bedridden wife: she can't shower, make food, watch TV, speak for more than a few minutes—sometimes can't chew or get to the bathroom. She's trapped, like millions of others—yet ME/CFS research gets almost no funding.
May 12, 2025 at 6:14 PM
It's ME/CFS Day of Awareness. For 7 years, I've been the full-time caretaker for my bedridden wife: she can't shower, make food, watch TV, speak for more than a few minutes—sometimes can't chew or get to the bathroom. She's trapped, like millions of others—yet ME/CFS research gets almost no funding.
Reposted by Jill
A section titled what?? In a chapter titled WHAT????
May 1, 2025 at 12:53 PM
A section titled what?? In a chapter titled WHAT????
Reposted by Jill
"...the very nature of Long COVID and other infection-associated chronic conditions (IACCs) – complex, multi-system conditions that present themselves in myriad ways – testifies to the need for a research enterprise of tremendous breadth and depth."
www.appropriations.senate.gov/hearings/bio...
www.appropriations.senate.gov/hearings/bio...
Biomedical Research: Keeping America’s Edge in Innovation | United States Senate Committee on Appropriations
United States Senate Committee on Appropriations
www.appropriations.senate.gov
April 30, 2025 at 9:41 PM
"...the very nature of Long COVID and other infection-associated chronic conditions (IACCs) – complex, multi-system conditions that present themselves in myriad ways – testifies to the need for a research enterprise of tremendous breadth and depth."
www.appropriations.senate.gov/hearings/bio...
www.appropriations.senate.gov/hearings/bio...
What a disingenuous article. Rowling didn’t just make some anti-trans comments “back in 2020.” She has led a vicious anti-trans movement in the UK for 5 years. She is a raging bigot. Incredibly disappointing to see Lithgow & Variety minimize her vitriol.
apple.news/AzMQfolmkQfa...
apple.news/AzMQfolmkQfa...
John Lithgow Says He 'Absolutely' Didn't Expect Any J.K. Rowling Backlash After Joining HBO's 'Harry Potter' Series: 'Why Is This a Factor?' — Variety
John Lithgow is opening up about how fans feel about him joining HBO's
apple.news
April 29, 2025 at 6:02 AM
What a disingenuous article. Rowling didn’t just make some anti-trans comments “back in 2020.” She has led a vicious anti-trans movement in the UK for 5 years. She is a raging bigot. Incredibly disappointing to see Lithgow & Variety minimize her vitriol.
apple.news/AzMQfolmkQfa...
apple.news/AzMQfolmkQfa...