Siebe
@siebepersists.bsky.social
Be kind
Be rational
Protect democracy
Govern AGI
Cure ME/CFS & Long Covid
Be rational
Protect democracy
Govern AGI
Cure ME/CFS & Long Covid
Pinned
Siebe
@siebepersists.bsky.social
· Nov 18
Hopes I have for BlueSky:
- Replacing X as the world's town square
- Community Notes but more effective (on X, too few posts get noted)
- Much less harassment of public figures, allowing actual discussion
- Not a (leftist) echo chamber
- Rewarding good epistemics > hot takes (lol who am I kidding)
- Replacing X as the world's town square
- Community Notes but more effective (on X, too few posts get noted)
- Much less harassment of public figures, allowing actual discussion
- Not a (leftist) echo chamber
- Rewarding good epistemics > hot takes (lol who am I kidding)
How much does public research funding affect drug development & market success?
Two papers have looked at this (h/t @mattsclancy @Atelfo ).
Based on these, I ran some quick calculations for ME/CFS and Long Covid
🧵
1/
Two papers have looked at this (h/t @mattsclancy @Atelfo ).
Based on these, I ran some quick calculations for ME/CFS and Long Covid
🧵
1/
September 4, 2025 at 2:01 PM
How much does public research funding affect drug development & market success?
Two papers have looked at this (h/t @mattsclancy @Atelfo ).
Based on these, I ran some quick calculations for ME/CFS and Long Covid
🧵
1/
Two papers have looked at this (h/t @mattsclancy @Atelfo ).
Based on these, I ran some quick calculations for ME/CFS and Long Covid
🧵
1/
I already left comments on their spreadsheet yesterday saying that many numbers were greatly and obviously inflated. @gelliottmorris.com pushed out these claims based on bad data
🧵
🧵
Our unofficial crowdsourced estimate of yesterday’s protest turnout is rising to 4.2-7 million as we gather more data. At this point potentially the second-largest single day of protest in U.S. history! www.gelliottmorris.com/p/no-kings-d...
June 18, 2025 at 12:05 PM
I already left comments on their spreadsheet yesterday saying that many numbers were greatly and obviously inflated. @gelliottmorris.com pushed out these claims based on bad data
🧵
🧵
Our unofficial crowdsourced estimate of yesterday’s protest turnout is rising to 4.2-7 million as we gather more data. At this point potentially the second-largest single day of protest in U.S. history! www.gelliottmorris.com/p/no-kings-d...
June 18, 2025 at 10:59 AM
I already left comments on their spreadsheet yesterday saying that many numbers were greatly and obviously inflated. @gelliottmorris.com pushed out these claims based on bad data
🧵
🧵
I don't like the BSky Discover algorithm. It's showing so much irrelevant stuff to me, and not taking my feedback into account enough: here's 6/7 irrelevant
May 27, 2025 at 7:08 AM
I don't like the BSky Discover algorithm. It's showing so much irrelevant stuff to me, and not taking my feedback into account enough: here's 6/7 irrelevant
This large (n= 1,455) biomarker study from August last year used UK Biobank data.
It's generally a well-conducted study, but the Biobank doesn't use reliable ME/CFS case definitions like CCC/ICC for which PEM is necessary.
Instead, it relies on doctor/self-diagnosis
www.medrxiv.org/content/10.1...
It's generally a well-conducted study, but the Biobank doesn't use reliable ME/CFS case definitions like CCC/ICC for which PEM is necessary.
Instead, it relies on doctor/self-diagnosis
www.medrxiv.org/content/10.1...
April 22, 2025 at 6:43 PM
This large (n= 1,455) biomarker study from August last year used UK Biobank data.
It's generally a well-conducted study, but the Biobank doesn't use reliable ME/CFS case definitions like CCC/ICC for which PEM is necessary.
Instead, it relies on doctor/self-diagnosis
www.medrxiv.org/content/10.1...
It's generally a well-conducted study, but the Biobank doesn't use reliable ME/CFS case definitions like CCC/ICC for which PEM is necessary.
Instead, it relies on doctor/self-diagnosis
www.medrxiv.org/content/10.1...
April 14, 2025 at 7:15 PM
April 6, 2025 at 7:34 PM
I'm looking for aerial footage of the DC protest. I want to estimate the crowd size. Can anyone find it?
April 6, 2025 at 5:30 PM
I'm looking for aerial footage of the DC protest. I want to estimate the crowd size. Can anyone find it?
I bet @moskov.goodventures.org could submit a good list :)
February 24, 2025 at 7:03 PM
I bet @moskov.goodventures.org could submit a good list :)
I'm experimenting with Claude AI, and had it do a peer review of a paper, including its own analyses:
🧵 Claude here, AI assistant. I've completed a peer review of a PLOS ONE paper examining hippocampal changes in Long COVID and ME/CFS. Here's my analysis:
🧵 Claude here, AI assistant. I've completed a peer review of a PLOS ONE paper examining hippocampal changes in Long COVID and ME/CFS. Here's my analysis:
January 14, 2025 at 10:23 PM
I'm experimenting with Claude AI, and had it do a peer review of a paper, including its own analyses:
🧵 Claude here, AI assistant. I've completed a peer review of a PLOS ONE paper examining hippocampal changes in Long COVID and ME/CFS. Here's my analysis:
🧵 Claude here, AI assistant. I've completed a peer review of a PLOS ONE paper examining hippocampal changes in Long COVID and ME/CFS. Here's my analysis:
Nostalgia is largely a desire for the naivete of childhood - life seemed simple, good, because you got sheltered by adults from the real world and its complex reality
Great data journalism: people report “best times” is when they were 10-15 yo
www.washingtonpost.com/business/202...
www.washingtonpost.com/business/202...
December 18, 2024 at 12:20 PM
Nostalgia is largely a desire for the naivete of childhood - life seemed simple, good, because you got sheltered by adults from the real world and its complex reality
Reposted by Siebe
Madrid’s metro was 71 miles long in 1995. That would be the world’s 51st longest today, reasonable considering Madrid is the 57th largest city by population.
Yet over 12 years, the metro would ~3x in length at costs much lower than was thought possible. Here’s how they did it. 🧵
Yet over 12 years, the metro would ~3x in length at costs much lower than was thought possible. Here’s how they did it. 🧵
December 17, 2024 at 10:43 AM
Madrid’s metro was 71 miles long in 1995. That would be the world’s 51st longest today, reasonable considering Madrid is the 57th largest city by population.
Yet over 12 years, the metro would ~3x in length at costs much lower than was thought possible. Here’s how they did it. 🧵
Yet over 12 years, the metro would ~3x in length at costs much lower than was thought possible. Here’s how they did it. 🧵
Reposted by Siebe
for sure - co-infection (e.g. in humans, or species like pigs that carry ex-human viruses) and reassortment is a real concern, particularly during flu season. Though this wouldnt change the fact the haemagglutinin would need to be from H5, so would need to adapt for human transmission
December 8, 2024 at 8:18 PM
for sure - co-infection (e.g. in humans, or species like pigs that carry ex-human viruses) and reassortment is a real concern, particularly during flu season. Though this wouldnt change the fact the haemagglutinin would need to be from H5, so would need to adapt for human transmission
Reposted by Siebe
Het vogelgriepvirus bij koeien in 🇺🇸 bindt aan “avian-type” receptoren. Voor mens-op-mens overdracht is binding aan “human-type” receptoren nodig. Eerder waren daar meerdere mutaties voor nodig, in deze studie nog maar 1. Dit vergroot het risico op een nieuwe pandemie.
www.science.org/doi/10.1126/...
www.science.org/doi/10.1126/...
A single mutation in bovine influenza H5N1 hemagglutinin switches specificity to human receptors
In 2024, several human infections with highly pathogenic clade 2.3.4.4b bovine influenza H5N1 viruses in the United States raised concerns about their capability for bovine-to-human or even human-to-h...
www.science.org
December 7, 2024 at 6:57 AM
Het vogelgriepvirus bij koeien in 🇺🇸 bindt aan “avian-type” receptoren. Voor mens-op-mens overdracht is binding aan “human-type” receptoren nodig. Eerder waren daar meerdere mutaties voor nodig, in deze studie nog maar 1. Dit vergroot het risico op een nieuwe pandemie.
www.science.org/doi/10.1126/...
www.science.org/doi/10.1126/...
Reposted by Siebe
An excellent point. Note by contrast how ineffective social media bullying is at thinking through how a better health care system would manage provider payments or decide which treatments do and do not get coverage.
something I've started asking myself
to what degree are we choosing a fight because it's easy to accomplish online?
eg, text-based micro-blogging platforms make it very easy to check if someone uses certain words in their posts
but what is the theory of change here, what follows from word usage?
to what degree are we choosing a fight because it's easy to accomplish online?
eg, text-based micro-blogging platforms make it very easy to check if someone uses certain words in their posts
but what is the theory of change here, what follows from word usage?
December 7, 2024 at 2:39 AM
An excellent point. Note by contrast how ineffective social media bullying is at thinking through how a better health care system would manage provider payments or decide which treatments do and do not get coverage.
Groep ME-Den Haag, die veel hebben bereikt voor ME in Nederland, trekt zich terug uit de klankbordgroep van ZonMw
Zeer treurig en zorgwekkend. Ik ben ze ontzettend dankbaar voor wat ze hebben gedaan en opgeofferd.
Zeer treurig en zorgwekkend. Ik ben ze ontzettend dankbaar voor wat ze hebben gedaan en opgeofferd.
December 6, 2024 at 6:21 PM
Groep ME-Den Haag, die veel hebben bereikt voor ME in Nederland, trekt zich terug uit de klankbordgroep van ZonMw
Zeer treurig en zorgwekkend. Ik ben ze ontzettend dankbaar voor wat ze hebben gedaan en opgeofferd.
Zeer treurig en zorgwekkend. Ik ben ze ontzettend dankbaar voor wat ze hebben gedaan en opgeofferd.
Reposted by Siebe
“A Bird Flu Pandemic Would Be One of the Most Foreseeable Catastrophes in History”
Why are we not taking this vastly more seriously given the potential downside? Still time for Biden officials to do more and for senators to prevent the RFK clown show from succeeding them.
Why are we not taking this vastly more seriously given the potential downside? Still time for Biden officials to do more and for senators to prevent the RFK clown show from succeeding them.
We’re entering flu season with bird flu raging among US dairy cattle: ~third of CA herds infected.
The danger is flu viruses have a trick: they can swap segments —one farmworker co-infected by human and avian flu— to cause pandemics.
We may get lucky. I hope so.
🎁🔗
www.nytimes.com/2024/11/29/o...
The danger is flu viruses have a trick: they can swap segments —one farmworker co-infected by human and avian flu— to cause pandemics.
We may get lucky. I hope so.
🎁🔗
www.nytimes.com/2024/11/29/o...
Opinion | A Bird Flu Pandemic Would Be One of the Most Foreseeable Catastrophes in History (Gift Article)
It’s not too late for President Biden to give the U.S. a life-changing gift.
www.nytimes.com
November 29, 2024 at 11:25 PM
“A Bird Flu Pandemic Would Be One of the Most Foreseeable Catastrophes in History”
Why are we not taking this vastly more seriously given the potential downside? Still time for Biden officials to do more and for senators to prevent the RFK clown show from succeeding them.
Why are we not taking this vastly more seriously given the potential downside? Still time for Biden officials to do more and for senators to prevent the RFK clown show from succeeding them.
The ME/CFS etc community is absolutely badass when taking apart the methods of psychosomatic/GET studies
I want to see the same scrutiny applied to biomedical findings
I want to see the same scrutiny applied to biomedical findings
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
That BMJ review of Long Covid therapies does not show what it says it does
The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...
thesciencebit.net
November 30, 2024 at 12:05 PM
The ME/CFS etc community is absolutely badass when taking apart the methods of psychosomatic/GET studies
I want to see the same scrutiny applied to biomedical findings
I want to see the same scrutiny applied to biomedical findings
Reposted by Siebe
Important to understand for those with #LongCovid who are newish to this problem: this is how ME/CFS was covered up and why there has been zero improvements for us in decades.
The same cheap process. The same intent. Many of the same people. It's an easy formula. It's desired, obsessively.
The same cheap process. The same intent. Many of the same people. It's an easy formula. It's desired, obsessively.
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
That BMJ review of Long Covid therapies does not show what it says it does
The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...
thesciencebit.net
November 29, 2024 at 8:18 PM
Important to understand for those with #LongCovid who are newish to this problem: this is how ME/CFS was covered up and why there has been zero improvements for us in decades.
The same cheap process. The same intent. Many of the same people. It's an easy formula. It's desired, obsessively.
The same cheap process. The same intent. Many of the same people. It's an easy formula. It's desired, obsessively.
Reposted by Siebe
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
That BMJ review of Long Covid therapies does not show what it says it does
The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...
thesciencebit.net
November 28, 2024 at 10:05 PM
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
It's an open secret in science that the biggest source of bias is the preconceptions & wishes of the study authors. It's also a risk factor for fraud.
Disappointingly, this is not included in standard "risk of bias analyses"
Disappointingly, this is not included in standard "risk of bias analyses"
A new BMJ review claims that #LongCovid can be treated using CBT and physical exercise
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
As ever, the devil is in the detail
TL; DR the authors' own risk-of-bias analyses show that their own conclusion is unwarranted
(Too bad they hid the crucial deets in an online supplement!)
cc #pwME #MECFS
That BMJ review of Long Covid therapies does not show what it says it does
The BMJ have published a “living systematic review” of interventions for the management of Long Covid. It sets out to gather all relevant studies, and to comb their findings in order to see what works...
thesciencebit.net
November 30, 2024 at 9:34 AM
It's an open secret in science that the biggest source of bias is the preconceptions & wishes of the study authors. It's also a risk factor for fraud.
Disappointingly, this is not included in standard "risk of bias analyses"
Disappointingly, this is not included in standard "risk of bias analyses"
Reposted by Siebe
Here’s a crazy fact for you: Spain and Germany have now seen basically the exact same amount of economic growth post-2008. Would have been unthinkable to people during most of the 2010s. Spain has seen ~10 percentage points more cumulative growth since 2017.
November 23, 2024 at 9:26 AM
Here’s a crazy fact for you: Spain and Germany have now seen basically the exact same amount of economic growth post-2008. Would have been unthinkable to people during most of the 2010s. Spain has seen ~10 percentage points more cumulative growth since 2017.
In a recent patient consultation, Low Dose Naltrexone (LDN) came in as most preferred for a trial. There's supposedly even discussion about ‘one large trial vs. many small ones’
Here's 6 reasons why I think NIH shouldn't fund a (large) trial for LDN
🧵
Here's 6 reasons why I think NIH shouldn't fund a (large) trial for LDN
🧵
November 22, 2024 at 8:35 PM
In a recent patient consultation, Low Dose Naltrexone (LDN) came in as most preferred for a trial. There's supposedly even discussion about ‘one large trial vs. many small ones’
Here's 6 reasons why I think NIH shouldn't fund a (large) trial for LDN
🧵
Here's 6 reasons why I think NIH shouldn't fund a (large) trial for LDN
🧵
The same that on X has 100x as many likes.. it's going to be an adjustment, this platform. I worked pretty hard for those >2K followers on X
ME/CFS needs better PR. Here's an idea: the raised fist.
There's a demonstrative 'exercise' that people can do: flex their fist high above their head for 1-2 minutes. Their arm will start to hurt, burn and feel weak for a few minutes, resembling PEM. 🧵
There's a demonstrative 'exercise' that people can do: flex their fist high above their head for 1-2 minutes. Their arm will start to hurt, burn and feel weak for a few minutes, resembling PEM. 🧵
November 20, 2024 at 7:16 PM
The same that on X has 100x as many likes.. it's going to be an adjustment, this platform. I worked pretty hard for those >2K followers on X