@casterofspells.bsky.social
Reposted
A new neuroimaging study just mapped white-matter damage in ME/CFS using machine learning and causal inference techniques, going beyond typical imaging statistics.
Here are three key points I noted:
Here are three key points I noted:
December 13, 2025 at 12:35 PM
A new neuroimaging study just mapped white-matter damage in ME/CFS using machine learning and causal inference techniques, going beyond typical imaging statistics.
Here are three key points I noted:
Here are three key points I noted:
Reposted
For information for all Visible users, the clinical trial ‚Balance Acceptance and Commitment Therapy for Long Covid‘ is run by Trudie Chalder.
So, is the question now: is #LongCovid a state of mind??
So, is the question now: is #LongCovid a state of mind??
December 6, 2025 at 6:07 AM
For information for all Visible users, the clinical trial ‚Balance Acceptance and Commitment Therapy for Long Covid‘ is run by Trudie Chalder.
So, is the question now: is #LongCovid a state of mind??
So, is the question now: is #LongCovid a state of mind??
Reposted
I'll be writing about #LongCOVID trials in kids for
@thesicktimes.org.
With the protocol for the LDN trial now available for public comment. I wanted to hear from parents and researchers about their thoughts on the protocol. DM me to get in touch.
recovercovid.org/news/recover...
@thesicktimes.org.
With the protocol for the LDN trial now available for public comment. I wanted to hear from parents and researchers about their thoughts on the protocol. DM me to get in touch.
recovercovid.org/news/recover...
RECOVER: Researching COVID to Enhance Recovery
The long-term effects of COVID are real. Join the NIH in the search for answers.
recovercovid.org
December 5, 2025 at 2:16 PM
I'll be writing about #LongCOVID trials in kids for
@thesicktimes.org.
With the protocol for the LDN trial now available for public comment. I wanted to hear from parents and researchers about their thoughts on the protocol. DM me to get in touch.
recovercovid.org/news/recover...
@thesicktimes.org.
With the protocol for the LDN trial now available for public comment. I wanted to hear from parents and researchers about their thoughts on the protocol. DM me to get in touch.
recovercovid.org/news/recover...
Reposted
1) Quite impressive that PolyBio (@polybioRF) has raised $42 million since 2021 with very little overhead.
While we have doubts about their strong focus on viral persistence, their studies on brain scans and tissue samples look very interesting. 🧵
While we have doubts about their strong focus on viral persistence, their studies on brain scans and tissue samples look very interesting. 🧵
November 23, 2025 at 2:00 PM
1) Quite impressive that PolyBio (@polybioRF) has raised $42 million since 2021 with very little overhead.
While we have doubts about their strong focus on viral persistence, their studies on brain scans and tissue samples look very interesting. 🧵
While we have doubts about their strong focus on viral persistence, their studies on brain scans and tissue samples look very interesting. 🧵
Reposted
RECOVER: 'RECOVER-NEURO clinical trial shares results of three non-drug treatments for cognitive symptoms of Long COVID'
'None of our rehabilitation approaches to treatment for cognitive Long COVID proved to be effective.'
recovercovid.org/news/recover...
'None of our rehabilitation approaches to treatment for cognitive Long COVID proved to be effective.'
recovercovid.org/news/recover...
RECOVER: Researching COVID to Enhance Recovery
The long-term effects of COVID are real. Join the NIH in the search for answers.
recovercovid.org
November 10, 2025 at 5:06 PM
RECOVER: 'RECOVER-NEURO clinical trial shares results of three non-drug treatments for cognitive symptoms of Long COVID'
'None of our rehabilitation approaches to treatment for cognitive Long COVID proved to be effective.'
recovercovid.org/news/recover...
'None of our rehabilitation approaches to treatment for cognitive Long COVID proved to be effective.'
recovercovid.org/news/recover...
Reposted
please sign and share widely!
A "final" plan without funding is as useful as a chocolate teapot.
#mecfs #me/cfs #myalgice #pwme
A "final" plan without funding is as useful as a chocolate teapot.
#mecfs #me/cfs #myalgice #pwme
Please sign this petition calling on the UK Government to provide more funding for biomedical research into, and education on, #ME if you haven't already done so. The deadline is 30th December 2025.
petition.parliament.uk/petitions/72...
petition.parliament.uk/petitions/72...
Petition: Provide more funding for further biomedical research and education on CFS/ME
We want the government to provide more funding for further biomedical research and education on myalgic encephalomyelitis (ME)/chronic fatigue syndrome. ME Association UK estimates there are currently...
petition.parliament.uk
November 10, 2025 at 10:21 AM
Reposted
Once every 20 years or so, the director-general of the BBC is forced to resign for being insufficiently rightwing. Alastair Milne in 1987. Greg Dyke in 2004. Tim Davie in 2025. The great irony is that the BBC was in all cases profoundly biased towards established power. But just not biased enough …
November 10, 2025 at 5:44 AM
Once every 20 years or so, the director-general of the BBC is forced to resign for being insufficiently rightwing. Alastair Milne in 1987. Greg Dyke in 2004. Tim Davie in 2025. The great irony is that the BBC was in all cases profoundly biased towards established power. But just not biased enough …
Reposted
1) A new study by the group of Benjamin Natelson reports abnormal breathing patterns in ME/CFS patients during an exercise test.
42% met the criteria for dysfunctional breathing compared to 16% in controls.
42% met the criteria for dysfunctional breathing compared to 16% in controls.
November 10, 2025 at 9:08 AM
1) A new study by the group of Benjamin Natelson reports abnormal breathing patterns in ME/CFS patients during an exercise test.
42% met the criteria for dysfunctional breathing compared to 16% in controls.
42% met the criteria for dysfunctional breathing compared to 16% in controls.
Reposted
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
Reposted
1) Dr. Robert Naviaux’s theory is that the mitochondrial dysfunction observed in ME/CFS isn’t actually a dysfunction. The mitochondria are doing precisely as they are instructed by signals in the blood and from the brain.
October 18, 2025 at 5:09 PM
1) Dr. Robert Naviaux’s theory is that the mitochondrial dysfunction observed in ME/CFS isn’t actually a dysfunction. The mitochondria are doing precisely as they are instructed by signals in the blood and from the brain.
Reposted
1) The most interesting presentation during the 2025 Stanford symposium was on PET scans of the entire body.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
October 19, 2025 at 7:35 AM
1) The most interesting presentation during the 2025 Stanford symposium was on PET scans of the entire body.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
Dr. Michelle James explained that they found a striking pattern with more TSPO signal in various muscle groups of ME/CFS patients, such as the thigh and shoulders.
Reposted
1) During the Stanford Community Symposium, Dr. Randall Peterson explained how his team at the University of Utah has recreated the Itaconate shunt model of ME/CFS in zebrafish.
They found that these fish swim less and have reduced oxygen consumption.
They found that these fish swim less and have reduced oxygen consumption.
October 18, 2025 at 8:07 AM
1) During the Stanford Community Symposium, Dr. Randall Peterson explained how his team at the University of Utah has recreated the Itaconate shunt model of ME/CFS in zebrafish.
They found that these fish swim less and have reduced oxygen consumption.
They found that these fish swim less and have reduced oxygen consumption.
Reposted
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
October 17, 2025 at 3:10 PM
1) Remember the intramural NIH study about effort preference in ME/CFS?
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.
Reposted
“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.”
Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!
Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!
September 23, 2025 at 9:53 PM
“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.”
Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!
Incredible speech by Violet Affleck who warned about the ongoing dangers of COVID & Long Covid, & advocated for masks and clean air at the UN today!
Reposted
ICYMI: We recapped yesterday's HHS Long COVID roundtable event and related announcements. Will be adding more comments from patient advocates to the story today.
NEW: RFK Jr.'s HHS has committed to prioritizing Long COVID, but it's unclear if the agency will dedicate new funding to research and supports.
@mileswgriffis.bsky.social and I recap what we learned at today's roundtable event for @thesicktimes.org: thesicktimes.org/2025/09/18/k...
@mileswgriffis.bsky.social and I recap what we learned at today's roundtable event for @thesicktimes.org: thesicktimes.org/2025/09/18/k...
Kennedy’s HHS commits to Long COVID, but without clear funding - The Sick Times
Following two roundtable discussions with leading researchers and government officials — but limited patient engagement — HHS announced a public awareness campaign and medical resource platform
thesicktimes.org
September 19, 2025 at 1:28 PM
ICYMI: We recapped yesterday's HHS Long COVID roundtable event and related announcements. Will be adding more comments from patient advocates to the story today.
Reposted
1) A new paper by the Scheibenbogen group reports that ME/CFS and Long Covid patients have more antibodies that target proteins with arginine-rich (poly-R) sequences.
Examples are:
- the neuronal antigen SRRM3
- the ion channel SLC24A3
- the TGF-b signalling regulator TSPLY2
Examples are:
- the neuronal antigen SRRM3
- the ion channel SLC24A3
- the TGF-b signalling regulator TSPLY2
September 19, 2025 at 1:22 PM
1) A new paper by the Scheibenbogen group reports that ME/CFS and Long Covid patients have more antibodies that target proteins with arginine-rich (poly-R) sequences.
Examples are:
- the neuronal antigen SRRM3
- the ion channel SLC24A3
- the TGF-b signalling regulator TSPLY2
Examples are:
- the neuronal antigen SRRM3
- the ion channel SLC24A3
- the TGF-b signalling regulator TSPLY2
Reposted
Getting ready to watch the livestream; it seems to be starting a few minutes late. I can't promise a full live blog but will do my best to share major updates here (while @mileswgriffis.bsky.social and I also work on our write-up).
Just announced: HHS Secretary RFK Jr. is hosting two "roundtable discussions" about Long COVID tomorrow at 2 p.m. ET. @thesicktimes.org will be covering the event and reactions from the Long COVID community. (Reach out if you'd like to send us comments during or after!)
September 18, 2025 at 6:05 PM
Getting ready to watch the livestream; it seems to be starting a few minutes late. I can't promise a full live blog but will do my best to share major updates here (while @mileswgriffis.bsky.social and I also work on our write-up).
Reposted
Made it to RECOVER TLC!
September 10, 2025 at 2:43 PM
Made it to RECOVER TLC!
Reposted
1) 🇳🇴 A new Norwegian study reports that ME/CFS patients have different DNA variants of killer cell immunoglobulin-like receptors (KIR) compared to controls.
According to the authors, this points to the involvement of natural killer cells in ME/CFS.
According to the authors, this points to the involvement of natural killer cells in ME/CFS.
September 7, 2025 at 9:29 AM
1) 🇳🇴 A new Norwegian study reports that ME/CFS patients have different DNA variants of killer cell immunoglobulin-like receptors (KIR) compared to controls.
According to the authors, this points to the involvement of natural killer cells in ME/CFS.
According to the authors, this points to the involvement of natural killer cells in ME/CFS.
Reposted
London researchers estimate COVID-19 vaccines cost $79B in 2020–21 but returned $4.8–$37.8T in health and economic benefits.
That is $60–$475 gained for every $1 invested, making them one of the best global investments ever.
www.medrxiv.org/content/10.1...
That is $60–$475 gained for every $1 invested, making them one of the best global investments ever.
www.medrxiv.org/content/10.1...
The global return-on-investment of COVID-19 vaccines in the first year of the vaccination programme
COVID-19 vaccines played a critical role in reducing global health burden during the COVID-19 pandemic, but their rapid development required extraordinary effort. This study aims to evaluate their glo...
www.medrxiv.org
September 5, 2025 at 1:52 PM
London researchers estimate COVID-19 vaccines cost $79B in 2020–21 but returned $4.8–$37.8T in health and economic benefits.
That is $60–$475 gained for every $1 invested, making them one of the best global investments ever.
www.medrxiv.org/content/10.1...
That is $60–$475 gained for every $1 invested, making them one of the best global investments ever.
www.medrxiv.org/content/10.1...
Reposted
Olivera up now, talking about the main hypothesis that the entire community symposium up to now has been based on. IFN up from infection, itaconate shut enters, failure to turn off, lower ATP leading to chronic fatigue. 🧪
September 5, 2025 at 4:42 PM
Olivera up now, talking about the main hypothesis that the entire community symposium up to now has been based on. IFN up from infection, itaconate shut enters, failure to turn off, lower ATP leading to chronic fatigue. 🧪
Reposted
Next up, Rob Phair, the itaconate shunt hypothesis.
September 5, 2025 at 3:43 PM
Next up, Rob Phair, the itaconate shunt hypothesis.
Reposted
A fascinating new preprint w/one very unexpected finding suggests, I believe, that a large proportion of Long Covid may be due to chronic infection in a particular bodily niche, which could be crucial for finding effective LC treatments. It requires some explaining. 🧵 1/33
September 2, 2025 at 3:16 AM
A fascinating new preprint w/one very unexpected finding suggests, I believe, that a large proportion of Long Covid may be due to chronic infection in a particular bodily niche, which could be crucial for finding effective LC treatments. It requires some explaining. 🧵 1/33
Reposted
Reminder that I'm working on a story about the upcoming RECOVER-TLC trials for @thesicktimes.org and would love to hear from more Long COVID community members about what they think of the apparent agent selections. Also interested in talking to people with experience on the working groups. (1/2)
August 29, 2025 at 5:17 PM
Reminder that I'm working on a story about the upcoming RECOVER-TLC trials for @thesicktimes.org and would love to hear from more Long COVID community members about what they think of the apparent agent selections. Also interested in talking to people with experience on the working groups. (1/2)
Reposted
translational-medici...
This study by Moezzi et al. investigates the role of haptoglobin (Hp) as a potential biomarker for PEM and cognitive dysfunction in ME/CFS.
1/10
This study by Moezzi et al. investigates the role of haptoglobin (Hp) as a potential biomarker for PEM and cognitive dysfunction in ME/CFS.
1/10
Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in myalgic encephalomyelitis - Journal of Translational Medicine
Background Myalgic encephalomyelitis (ME) is a chronic, multisystem illness characterized by post-exertional malaise (PEM) and cognitive dysfunction, yet the molecular mechanisms driving these hallmark symptoms remain unclear. This study investigated haptoglobin (Hp) as a potential biomarker of PEM severity and cognitive impairment in ME, with a focus on Hp phenotypes and structural proteoforms. Methods A longitudinal case–control study was conducted in 140 ME patients and 44 matched sedentary healthy controls. In the discovery phase, global plasma proteomic profiling was performed in 61 ME patients and 20 controls before and after a standardized, non-invasive stress protocol in order to induce PEM. Associations between Hp levels, phenotype, and cognitive performance were assessed. In the validation phase, plasma Hp concentrations and proteoform composition were analyzed in an independent cohort of 89 ME patients and 24 controls using high-performance liquid chromatography (HPLC). Results ME patients demonstrated a significant reduction in Hp levels following post-exertional stress. Lower baseline Hp concentrations were associated with impaired cognitive performance. Hp phenotypes were differentially associated with symptom burden, with the Hp2-1 phenotype enriched in ME and linked to greater PEM severity and cognitive deficits compared to Hp1-1 and Hp2-2. HPLC analysis revealed altered Hp proteoform profiles in the Hp2-1 subgroup, including increased high-mass tetrameric and pentameric forms and shorter retention times indicative of structural changes. In contrast, the Hp1-1 phenotype was associated with milder symptoms and greater cognitive resilience. Conclusions These findings suggest that Hp phenotype and proteoform structure modulate the physiological response to post-exertion in ME, offering insight into the molecular basis of PEM and its clinical heterogeneity. Hp may serve as a translational biomarker for patient stratification and a potential therapeutic target to mitigate oxidative stress and cognitive dysfunction in ME.
translational-medicine.biomedcentral.com
August 29, 2025 at 5:00 PM
translational-medici...
This study by Moezzi et al. investigates the role of haptoglobin (Hp) as a potential biomarker for PEM and cognitive dysfunction in ME/CFS.
1/10
This study by Moezzi et al. investigates the role of haptoglobin (Hp) as a potential biomarker for PEM and cognitive dysfunction in ME/CFS.
1/10