Ann Forbes
@aeforbes.bsky.social
noticing–wondering–learning–creating–critiquing–revising
You @baldypidge.bsky.social & Rosie were featured today by Sammie @longcovidkids.bsky.social during #ICanCME ❤️
You are all such good advocates!
You are all such good advocates!
November 5, 2025 at 11:17 PM
You @baldypidge.bsky.social & Rosie were featured today by Sammie @longcovidkids.bsky.social during #ICanCME ❤️
You are all such good advocates!
You are all such good advocates!
Reposted by Ann Forbes
Rosie's piece Prisoner of my Heartrate (a digital rendering of her actual ribcage and ❤️) made it to the @ukcovid-19inquiry.bsky.social today in support of Sammie and @longcovidkids.bsky.social .
October 1, 2025 at 2:53 PM
Rosie's piece Prisoner of my Heartrate (a digital rendering of her actual ribcage and ❤️) made it to the @ukcovid-19inquiry.bsky.social today in support of Sammie and @longcovidkids.bsky.social .
Monochromatic
Midday meandering moth
Mystic messenger
Midday meandering moth
Mystic messenger
September 28, 2025 at 7:18 PM
Monochromatic
Midday meandering moth
Mystic messenger
Midday meandering moth
Mystic messenger
Reposted by Ann Forbes
the world is upside down, the appropriate response to deafening silence in the wake of mass-disabling of our children is to scream at the top of your lungs. That's what Violet was doing on Tuesday. That's not anxiety, that's humanity.
/end
/end
September 27, 2025 at 11:30 AM
the world is upside down, the appropriate response to deafening silence in the wake of mass-disabling of our children is to scream at the top of your lungs. That's what Violet was doing on Tuesday. That's not anxiety, that's humanity.
/end
/end
Reposted by Ann Forbes
NEW: At a UN event today, advocate Violet Affleck gave a short speech on pediatric #LongCOVID. She also talked about how clean air and masking could help address the ongoing COVID-19 pandemic and protect children from the disabling disease.
thesicktimes.org/2025/09/23/v...
thesicktimes.org/2025/09/23/v...
Violet Affleck advocates for children with Long COVID, masks, and clean indoor air at United Nations event - The Sick Times
During today’s United Nations (UN) event “Healthy Indoor Air: A Global Call to Action,” advocate Violet Affleck spoke about how clean air and masking are vital tools to address the ongoing COVID-19 pa...
thesicktimes.org
September 23, 2025 at 11:56 PM
NEW: At a UN event today, advocate Violet Affleck gave a short speech on pediatric #LongCOVID. She also talked about how clean air and masking could help address the ongoing COVID-19 pandemic and protect children from the disabling disease.
thesicktimes.org/2025/09/23/v...
thesicktimes.org/2025/09/23/v...
I feel like I know Rosie even though an ocean separates us. She is an amazing young woman who acquired Long COVID as a teen. She & her father @baldypidge.bsky.social have been public about her journey.
September 16, 2025 at 4:30 PM
I feel like I know Rosie even though an ocean separates us. She is an amazing young woman who acquired Long COVID as a teen. She & her father @baldypidge.bsky.social have been public about her journey.
Reposted by Ann Forbes
Rosie challenged visitors to contribute to Rona Lisa 2 by thinking of kind things they could say to people with #longcovid #mecfs. They were invited tonwrit on post its and add them to the piece.
September 14, 2025 at 3:39 PM
Rosie challenged visitors to contribute to Rona Lisa 2 by thinking of kind things they could say to people with #longcovid #mecfs. They were invited tonwrit on post its and add them to the piece.
Reposted by Ann Forbes
If anyone else would like to add a virtual message to Rosie's piece Rona Lisa 2, please do so.
She is looking for kind or supportive things that an adult or friend can say to someone with an #invisibleillness like #longcovid or #mecfs
She is looking for kind or supportive things that an adult or friend can say to someone with an #invisibleillness like #longcovid or #mecfs
September 15, 2025 at 6:13 AM
If anyone else would like to add a virtual message to Rosie's piece Rona Lisa 2, please do so.
She is looking for kind or supportive things that an adult or friend can say to someone with an #invisibleillness like #longcovid or #mecfs
She is looking for kind or supportive things that an adult or friend can say to someone with an #invisibleillness like #longcovid or #mecfs
"After an episode of PEM, patients may return to their prior cognitive baseline...or decline to a new, lower baseline, suggesting cumulative neurological injury. Conversely, strict avoidance of PEM— ...may allow partial neurological recovery."
Recent work demonstrates that exercise exceeding the aerobic threshold causes skeletal muscle damage and necrosis in LC patients with #PEM (3). Since the aerobic threshold is pathologically lowered in this group, even minimal daily movements may induce metabolic tissue damage. Necrosis is a
August 31, 2025 at 11:03 PM
"After an episode of PEM, patients may return to their prior cognitive baseline...or decline to a new, lower baseline, suggesting cumulative neurological injury. Conversely, strict avoidance of PEM— ...may allow partial neurological recovery."
Reposted by Ann Forbes
It is only when we give up hope, that we lose.
Or to quote Victor Frankl: “For the world is in a bad state, but everything will become still worse unless each of us does his best.”
Or to quote Victor Frankl: “For the world is in a bad state, but everything will become still worse unless each of us does his best.”
August 19, 2025 at 3:32 AM
It is only when we give up hope, that we lose.
Or to quote Victor Frankl: “For the world is in a bad state, but everything will become still worse unless each of us does his best.”
Or to quote Victor Frankl: “For the world is in a bad state, but everything will become still worse unless each of us does his best.”
Reposted by Ann Forbes
Really proud of my team for getting this out. It has been a heavy lift. When we opened the Cohen Center for Recovery from Complex Chronic Illness, we wanted to create a place that could provide the very best of care for people with #LongCOVID, #MECFS,
www.beckershospitalreview.com/quality/pati...
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www.beckershospitalreview.com/quality/pati...
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Mount Sinai publishes 1st US guide for infection-linked chronic illnesses - Becker's Hospital Review | Healthcare News & Analysis
New York City-based Mount Sinai Health System has released the country’s first clinical manual for treating infection-associated chronic illnesses, according to an Aug. 13 news release. The clinical ...
www.beckershospitalreview.com
August 14, 2025 at 12:30 AM
Really proud of my team for getting this out. It has been a heavy lift. When we opened the Cohen Center for Recovery from Complex Chronic Illness, we wanted to create a place that could provide the very best of care for people with #LongCOVID, #MECFS,
www.beckershospitalreview.com/quality/pati...
1/
www.beckershospitalreview.com/quality/pati...
1/
When I posted this, I thought of you, @baldypidge.bsky.social because your poems inspire me!
August 11, 2025 at 7:39 PM
When I posted this, I thought of you, @baldypidge.bsky.social because your poems inspire me!
Southern exposure
Unexpected sunset sight
Solar reflection
Unexpected sunset sight
Solar reflection
July 27, 2025 at 1:39 PM
Southern exposure
Unexpected sunset sight
Solar reflection
Unexpected sunset sight
Solar reflection
"We hypothesized that fatigue experienced by ME/CFS and LC patients may be connected with the increased energy consumption by the immune system due to lingering pathologies, even after the recovery from a specific infection."
An exceptional study from Stanford found that lymphocytes from #ME/CFS & #LongCOVID patients show elevated oxidative stress, disrupted redox balance, and mitochondrial damage.
These abnormalities lead to excess energy use by immune cells, which may contribute to www.pnas.org/doi/10.1073/...
These abnormalities lead to excess energy use by immune cells, which may contribute to www.pnas.org/doi/10.1073/...
Oxidative stress is a shared characteristic of ME/CFS and Long COVID | PNAS
Over 65 million individuals worldwide are estimated to have Long COVID (LC), a complex
multisystemic condition marked by fatigue, post-exertional m...
www.pnas.org
July 21, 2025 at 1:57 PM
"We hypothesized that fatigue experienced by ME/CFS and LC patients may be connected with the increased energy consumption by the immune system due to lingering pathologies, even after the recovery from a specific infection."
"Disability is the only minority group you can join at a moment’s notice with no warning or predisposition."
The "Big Beautiful Bill" will take away insurance from 17 million people, mostly from people on Medicaid. I want to tell you how losing Medicaid would impact me directly.…If I lost Medicaid, my parents would have to sell our house… #disabled
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
Dear America
The "Big Beautiful Bill" that Trump signed into law on the 4th of July will take away insurance from an estimated 17 million people, mostly from people on Medicaid. I want to tell you how losing Medi...
www.whitneydafoe.com
July 7, 2025 at 4:22 PM
"Disability is the only minority group you can join at a moment’s notice with no warning or predisposition."
@bhanlon15.bsky.social When I read your post last night I thought of Rosie's art. Rosie was featured in vimeo.com/1017483971
June 28, 2025 at 2:57 PM
@bhanlon15.bsky.social When I read your post last night I thought of Rosie's art. Rosie was featured in vimeo.com/1017483971
mecfs-research.org/wp-content/u...
@amsterdamumc.bsky.social
What wonderful work by Anouk Slaghekke and her team!
@amsterdamumc.bsky.social
What wonderful work by Anouk Slaghekke and her team!
mecfs-research.org
May 18, 2025 at 5:08 PM
mecfs-research.org/wp-content/u...
@amsterdamumc.bsky.social
What wonderful work by Anouk Slaghekke and her team!
@amsterdamumc.bsky.social
What wonderful work by Anouk Slaghekke and her team!
"Our patients need protection."
The opinions in this piece about #MECFS have already aged badly. Now they're downright wrong and dangerous. The commitment of @bmj_latest to continue publishing opinion in the face of needs to be met with outrage by the scientific community. Our patients need protection. /end
May 15, 2025 at 1:13 PM
"Our patients need protection."
This is an amazing resource. I am so grateful for the effort and thoroughness that is evident in the creation and distribution of this comprehensive guidance. ❤️
The Clinical Care Guide for #MECFS, #LongCOVID & IACCs is here! Download, share, and use it to support better care. BHC's approach is now freely available—designed to help providers manage complex conditions with clarity & compassion. Download it. Share it. Use it. bit.ly/432YdzF
May 10, 2025 at 9:51 PM
This is an amazing resource. I am so grateful for the effort and thoroughness that is evident in the creation and distribution of this comprehensive guidance. ❤️
“Postural reductions in stroke volume [heart] and cerebrovascular pulsatility, a marker of brain perfusion, were significant determinants of postural ventilation and sympathetic activity.” www.jacc.org/doi/10.1016/... #POTS #LongCovid #ME/CFS
Reduced Stroke Volume and Brain Perfusion Drive Postural Hyperventilation in Postural Orthostatic Tachycardia Syndrome:
www.jacc.org
May 4, 2025 at 3:04 PM
“Postural reductions in stroke volume [heart] and cerebrovascular pulsatility, a marker of brain perfusion, were significant determinants of postural ventilation and sympathetic activity.” www.jacc.org/doi/10.1016/... #POTS #LongCovid #ME/CFS
Meliora is the motto of my alma mater. @urochester.bsky.social #EverBetter
www.rochester.edu/emerging-lea...
www.rochester.edu/emerging-lea...
April 18, 2025 at 3:55 PM
Meliora is the motto of my alma mater. @urochester.bsky.social #EverBetter
www.rochester.edu/emerging-lea...
www.rochester.edu/emerging-lea...
Reposted by Ann Forbes
“When haters go after your looks and differences, it means they have nowhere left to go. And then you know you’re winning!
I have Aspergers and that means I’m sometimes a bit different from the norm. And — given the right circumstances — being different is a superpower.”
— Greta Thunberg
#autism
I have Aspergers and that means I’m sometimes a bit different from the norm. And — given the right circumstances — being different is a superpower.”
— Greta Thunberg
#autism
April 17, 2025 at 5:54 PM
“When haters go after your looks and differences, it means they have nowhere left to go. And then you know you’re winning!
I have Aspergers and that means I’m sometimes a bit different from the norm. And — given the right circumstances — being different is a superpower.”
— Greta Thunberg
#autism
I have Aspergers and that means I’m sometimes a bit different from the norm. And — given the right circumstances — being different is a superpower.”
— Greta Thunberg
#autism
Reposted by Ann Forbes
Reposted by Ann Forbes
From an operational security perspective, this is the highest level of fuckup imaginable. These people cannot keep America safe.
The Trump Administration Accidentally Texted Me Its War Plans
U.S. national-security leaders included me in a group chat about upcoming military strikes in Yemen. I didn’t think it could be real. Then the bombs started falling.
www.theatlantic.com
March 24, 2025 at 8:13 PM
From an operational security perspective, this is the highest level of fuckup imaginable. These people cannot keep America safe.
I am grateful to be participating in your study!
My colleague @scripps.edu @julialmv.bsky.social today on Long Covid
March 16, 2025 at 5:54 PM
I am grateful to be participating in your study!