Dom
@dom2023.bsky.social
ME since 2016. Have been working on microbiome since 2021. Finally got a test in 2023 with symptoms at 90% (first time in five years). Discovered four biomarkers in my sample correlated with 90%. Hope to maintain 90% in 2023/4.
Excellent article here by Hillary Johnson about POTS substack.com/home/post/p-... which specifically focusses on diagnostics and overlap with some other disease evalaution tests. But the bit abouts POTS and leak rate is super interesting.
Bedside Evaluations
Part Four: A new pilot study highlights the important role blood volume analysis can play in emergency medicine. One day, it may also play a critical role in myalgic encephalomyelitis
substack.com
October 3, 2025 at 4:56 PM
Excellent article here by Hillary Johnson about POTS substack.com/home/post/p-... which specifically focusses on diagnostics and overlap with some other disease evalaution tests. But the bit abouts POTS and leak rate is super interesting.
Reposted by Dom
🧵
It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships
www.emerge.org.au/how-to-suppo...
#LongCovid #MEcfs
1/
It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships
www.emerge.org.au/how-to-suppo...
#LongCovid #MEcfs
1/
April 25, 2025 at 6:46 PM
🧵
It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships
www.emerge.org.au/how-to-suppo...
#LongCovid #MEcfs
1/
It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships
www.emerge.org.au/how-to-suppo...
#LongCovid #MEcfs
1/
Reposted by Dom
There are a ton of great movies and TV shows out right now, many of them super relevant to the, uh… *unique* US political climate.
Like Andor, which is showing some teeth in a second season that’s a vivid metaphor for America’s descent into authoritarianism.
Like Andor, which is showing some teeth in a second season that’s a vivid metaphor for America’s descent into authoritarianism.
Star Wars’ ‘Andor’ Season 2 Depicts the Banality of American Fascism
The franchise’s Disney era has been defined by toothless politics, but “Andor” Season 2 is a vivid metaphor for America’s descent into authoritarianism.
www.wired.com
April 25, 2025 at 8:06 PM
There are a ton of great movies and TV shows out right now, many of them super relevant to the, uh… *unique* US political climate.
Like Andor, which is showing some teeth in a second season that’s a vivid metaphor for America’s descent into authoritarianism.
Like Andor, which is showing some teeth in a second season that’s a vivid metaphor for America’s descent into authoritarianism.
Reposted by Dom
Reposted by Dom
What do we know about #MyalgicEncephalomyelitis? We know a lot more than many realize.
See latest article from View from the Trenches of Myalgic Encephalomyelitis about the International Consensus Primer.
open.substack.com/pub/colleens...
See latest article from View from the Trenches of Myalgic Encephalomyelitis about the International Consensus Primer.
open.substack.com/pub/colleens...
Myalgic Encephalomyelitis IC Primer
A powerful tool to educate about ME
open.substack.com
February 25, 2025 at 5:12 PM
What do we know about #MyalgicEncephalomyelitis? We know a lot more than many realize.
See latest article from View from the Trenches of Myalgic Encephalomyelitis about the International Consensus Primer.
open.substack.com/pub/colleens...
See latest article from View from the Trenches of Myalgic Encephalomyelitis about the International Consensus Primer.
open.substack.com/pub/colleens...
Reposted by Dom
Saddened to share the news about Byron Hyde's passing.
He was a champion for people with #MyalgicEncephalomyelitis
colleensteckelmeiccinfo.substack.com/p/byron-hyde...
He was a champion for people with #MyalgicEncephalomyelitis
colleensteckelmeiccinfo.substack.com/p/byron-hyde...
Byron Hyde, MD (1936-2024)
A champion for people with ME leaves behind a legacy of information.
colleensteckelmeiccinfo.substack.com
December 2, 2024 at 11:09 PM
Saddened to share the news about Byron Hyde's passing.
He was a champion for people with #MyalgicEncephalomyelitis
colleensteckelmeiccinfo.substack.com/p/byron-hyde...
He was a champion for people with #MyalgicEncephalomyelitis
colleensteckelmeiccinfo.substack.com/p/byron-hyde...
Reposted by Dom
This is really sad.
Dr Byron Hyde was engaged with our community. He gave so much to all of us.
My condolences to family and friends, and specially to those whose life have been touched by his light.
You will be missed
Dr Byron Hyde was engaged with our community. He gave so much to all of us.
My condolences to family and friends, and specially to those whose life have been touched by his light.
You will be missed
Saddened to share the news about Byron Hyde's passing.
He was a champion for people with #MyalgicEncephalomyelitis
colleensteckelmeiccinfo.substack.com/p/byron-hyde...
He was a champion for people with #MyalgicEncephalomyelitis
colleensteckelmeiccinfo.substack.com/p/byron-hyde...
Byron Hyde, MD (1936-2024)
A champion for people with ME leaves behind a legacy of information.
colleensteckelmeiccinfo.substack.com
December 4, 2024 at 7:12 PM
This is really sad.
Dr Byron Hyde was engaged with our community. He gave so much to all of us.
My condolences to family and friends, and specially to those whose life have been touched by his light.
You will be missed
Dr Byron Hyde was engaged with our community. He gave so much to all of us.
My condolences to family and friends, and specially to those whose life have been touched by his light.
You will be missed
Reposted by Dom
#MyalgicE expert Dr. John Chia shows improvement in #pwME who contracted Covid & had antiviral treatment. Like Drs. Byron Hyde, Maureen Hanson & many others, Chia supports #enterovirus cause of M.E., wants enterovirus testing & specific antiviral treatment for M.E.
academic.oup.com/ofid/article...
academic.oup.com/ofid/article...
P-2363. Efficacy Of SARS–CoV-2 Specific Antiviral Therapy for Enteroviral Myalgic Encephalomyelitis/ChronicFatigue Syndrome
AbstractBackground. Etiology remains elusive for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and no treatment exists. Antivirals had no ef
academic.oup.com
February 5, 2025 at 1:33 AM
#MyalgicE expert Dr. John Chia shows improvement in #pwME who contracted Covid & had antiviral treatment. Like Drs. Byron Hyde, Maureen Hanson & many others, Chia supports #enterovirus cause of M.E., wants enterovirus testing & specific antiviral treatment for M.E.
academic.oup.com/ofid/article...
academic.oup.com/ofid/article...
Reposted by Dom
"The onset of #MECFS can be sudden (acute) or gradual. Sudden onset is more common. Dr. Melvin Ramsay and Dr. Byron Hyde both describe sudden/acute onsets for myalgic encephalomyelitis (ME) as oppose to ME/CFS being acute or gradual."
Read more... me-pedia.org/wiki/Onset_o...
Read more... me-pedia.org/wiki/Onset_o...
Onset of ME/CFS
me-pedia.org
April 2, 2025 at 12:55 PM
"The onset of #MECFS can be sudden (acute) or gradual. Sudden onset is more common. Dr. Melvin Ramsay and Dr. Byron Hyde both describe sudden/acute onsets for myalgic encephalomyelitis (ME) as oppose to ME/CFS being acute or gradual."
Read more... me-pedia.org/wiki/Onset_o...
Read more... me-pedia.org/wiki/Onset_o...
Tree pollen levels. In 2023 I started logging tree pollen levels for birch trees. In 2024 I made it comprehensive and continued in 2025. I now have two back to back years and it's official, 2025 tree pollen levels are higher than 2024. 1st week April 2025 attached + comparisons for 2024/2025.
April 7, 2025 at 5:18 PM
Tree pollen levels. In 2023 I started logging tree pollen levels for birch trees. In 2024 I made it comprehensive and continued in 2025. I now have two back to back years and it's official, 2025 tree pollen levels are higher than 2024. 1st week April 2025 attached + comparisons for 2024/2025.
Reposted by Dom
This Networking Summit at Quinnipiac is an intro to #MECFS for clinicians, nurses, social workers, PTs/OTs & more.
Design your own interprofessional event-- it might get funded!
In person & virtual; open to the public.
✨REGISTER BY THIS FRIDAY, APRIL 4!✨
➡️ tinyurl.com/mrn4p2ft
Design your own interprofessional event-- it might get funded!
In person & virtual; open to the public.
✨REGISTER BY THIS FRIDAY, APRIL 4!✨
➡️ tinyurl.com/mrn4p2ft
March 31, 2025 at 5:21 PM
This Networking Summit at Quinnipiac is an intro to #MECFS for clinicians, nurses, social workers, PTs/OTs & more.
Design your own interprofessional event-- it might get funded!
In person & virtual; open to the public.
✨REGISTER BY THIS FRIDAY, APRIL 4!✨
➡️ tinyurl.com/mrn4p2ft
Design your own interprofessional event-- it might get funded!
In person & virtual; open to the public.
✨REGISTER BY THIS FRIDAY, APRIL 4!✨
➡️ tinyurl.com/mrn4p2ft
Reposted by Dom
Long COVID and viral reactivation are linked. Our trial focuses on repurposing existing broad-spectrum antivirals to reduce symptoms in adults with #LongCOVID. Our clinical trial is currently recruiting participants! Email CoreResearch@mountsinai.org to inquire.
March 14, 2025 at 1:00 PM
Long COVID and viral reactivation are linked. Our trial focuses on repurposing existing broad-spectrum antivirals to reduce symptoms in adults with #LongCOVID. Our clinical trial is currently recruiting participants! Email CoreResearch@mountsinai.org to inquire.
Reposted by Dom
Once again I will be pilloried for it but I am begging you to stop posting your plans for crimes on main.
No matter what social media you're on, US law enforcement can see and use your posts against you.
There's a reason experienced organizers and activists use Signal and similar encrypted apps.
No matter what social media you're on, US law enforcement can see and use your posts against you.
There's a reason experienced organizers and activists use Signal and similar encrypted apps.
January 28, 2025 at 2:47 PM
Once again I will be pilloried for it but I am begging you to stop posting your plans for crimes on main.
No matter what social media you're on, US law enforcement can see and use your posts against you.
There's a reason experienced organizers and activists use Signal and similar encrypted apps.
No matter what social media you're on, US law enforcement can see and use your posts against you.
There's a reason experienced organizers and activists use Signal and similar encrypted apps.
Reposted by Dom
My talk at this conference was about why I've deferred treatment for my spinal CSF leak. It's a combo of factors I call my "onion of catch-22s". People often ask why I haven't gone back for repairs; this talk explains it.
If interested: spinalcsfleak.org/2024-ettenbe...
If interested: spinalcsfleak.org/2024-ettenbe...
January 28, 2025 at 6:39 PM
My talk at this conference was about why I've deferred treatment for my spinal CSF leak. It's a combo of factors I call my "onion of catch-22s". People often ask why I haven't gone back for repairs; this talk explains it.
If interested: spinalcsfleak.org/2024-ettenbe...
If interested: spinalcsfleak.org/2024-ettenbe...
Reposted by Dom
Here's a threaded version of David Putrino's 🎯 posts about his work on viral persistence as a driver of LC:
skywriter.blue/pages/putrin...
#LongCovid
skywriter.blue/pages/putrin...
#LongCovid
January 17, 2025 at 8:42 PM
Here's a threaded version of David Putrino's 🎯 posts about his work on viral persistence as a driver of LC:
skywriter.blue/pages/putrin...
#LongCovid
skywriter.blue/pages/putrin...
#LongCovid
Reposted by Dom
still don’t have mainstream access to valid and reliable tools that can evaluate and differentiate responders to certain therapies over others on the basis of viral persistence and reactivated pathogens. What our #LongCOVID and IACC communities desperately need are precision 10/
January 16, 2025 at 10:26 PM
still don’t have mainstream access to valid and reliable tools that can evaluate and differentiate responders to certain therapies over others on the basis of viral persistence and reactivated pathogens. What our #LongCOVID and IACC communities desperately need are precision 10/
Reposted by Dom
Working with a great team to organize
@keystonesymposia.bsky.social on "#LongCOVID and Other Post-Acute Infection Syndromes #PAIS" #KSLongCOVID26
@patientled.bsky.social @daltmann.bsky.social
August 10-13, 2025 | Santa Fe
Hope to see you there!
keysym.us/KSLongCOVID26
@keystonesymposia.bsky.social on "#LongCOVID and Other Post-Acute Infection Syndromes #PAIS" #KSLongCOVID26
@patientled.bsky.social @daltmann.bsky.social
August 10-13, 2025 | Santa Fe
Hope to see you there!
keysym.us/KSLongCOVID26
January 12, 2025 at 3:05 PM
Working with a great team to organize
@keystonesymposia.bsky.social on "#LongCOVID and Other Post-Acute Infection Syndromes #PAIS" #KSLongCOVID26
@patientled.bsky.social @daltmann.bsky.social
August 10-13, 2025 | Santa Fe
Hope to see you there!
keysym.us/KSLongCOVID26
@keystonesymposia.bsky.social on "#LongCOVID and Other Post-Acute Infection Syndromes #PAIS" #KSLongCOVID26
@patientled.bsky.social @daltmann.bsky.social
August 10-13, 2025 | Santa Fe
Hope to see you there!
keysym.us/KSLongCOVID26
For anyone interested this was the hong kong trial in long covid patients taking probiotics which dramatically improved symptoms that Eric Topol was mentioning www.thelancet.com/journals/lan....
A synbiotic preparation (SIM01) for post-acute COVID-19 syndrome in Hong Kong (RECOVERY): a randomised, double-blind, placebo-controlled trial
Treatment with SIM01 alleviates multiple symptoms of PACS. Our findings have implications on the management of PACS through gut microbiome modulation. Further studies are warranted to explore the beneficial effects of SIM01 in other chronic or post-infection conditions.
www.thelancet.com
December 12, 2024 at 5:22 PM
For anyone interested this was the hong kong trial in long covid patients taking probiotics which dramatically improved symptoms that Eric Topol was mentioning www.thelancet.com/journals/lan....
From the study closing sentence "Finally, we identified four LC symptom clusters, with gastrointestinal and fatigue-only groups most strongly linked to gut microbiome alterations." this must be the cluster I occupy. Sadly the probiotic route mentioned in the HK study hasn't worked for me.
Can the gut microbiome composition during acute #SARSCoV2 infection predict who will develop #LongCovid?
www.biorxiv.org/content/10.1...
(Mayo Clinic preprint)
Intriguing given the successful Hong Kong randomized LC trial of modulation the gut microbiome
www.biorxiv.org/content/10.1...
(Mayo Clinic preprint)
Intriguing given the successful Hong Kong randomized LC trial of modulation the gut microbiome
December 12, 2024 at 5:10 PM
From the study closing sentence "Finally, we identified four LC symptom clusters, with gastrointestinal and fatigue-only groups most strongly linked to gut microbiome alterations." this must be the cluster I occupy. Sadly the probiotic route mentioned in the HK study hasn't worked for me.
I recently researched the fact that I am missing a primary butyrate producer in my microbiome (e. rectale) and it seems like that specific species is actually very common in the human population.
Can the gut microbiome composition during acute #SARSCoV2 infection predict who will develop #LongCovid?
www.biorxiv.org/content/10.1...
(Mayo Clinic preprint)
Intriguing given the successful Hong Kong randomized LC trial of modulation the gut microbiome
www.biorxiv.org/content/10.1...
(Mayo Clinic preprint)
Intriguing given the successful Hong Kong randomized LC trial of modulation the gut microbiome
December 12, 2024 at 5:06 PM
I recently researched the fact that I am missing a primary butyrate producer in my microbiome (e. rectale) and it seems like that specific species is actually very common in the human population.
Reposted by Dom
Can the gut microbiome composition during acute #SARSCoV2 infection predict who will develop #LongCovid?
www.biorxiv.org/content/10.1...
(Mayo Clinic preprint)
Intriguing given the successful Hong Kong randomized LC trial of modulation the gut microbiome
www.biorxiv.org/content/10.1...
(Mayo Clinic preprint)
Intriguing given the successful Hong Kong randomized LC trial of modulation the gut microbiome
December 12, 2024 at 3:08 PM
Can the gut microbiome composition during acute #SARSCoV2 infection predict who will develop #LongCovid?
www.biorxiv.org/content/10.1...
(Mayo Clinic preprint)
Intriguing given the successful Hong Kong randomized LC trial of modulation the gut microbiome
www.biorxiv.org/content/10.1...
(Mayo Clinic preprint)
Intriguing given the successful Hong Kong randomized LC trial of modulation the gut microbiome
Reposted by Dom
I’m old enough to remember that in 2015, a detailed report by many scientists found that a dietary pattern higher in plants & lower in animal-based foods was better for both health & sustainability in the US.
USDA/HHS argued at the time that sustainability was “out of scope” of dietary guidelines.
USDA/HHS argued at the time that sustainability was “out of scope” of dietary guidelines.
U.S. dietary guidelines should emphasize beans and lentils as protein, proposal says
The report, from an advisory committee to the USDA, also suggests encouraging people to reduce their intake of sugary drinks and sodium and eat more whole grains.
www.nbcnews.com
December 12, 2024 at 2:02 PM
I’m old enough to remember that in 2015, a detailed report by many scientists found that a dietary pattern higher in plants & lower in animal-based foods was better for both health & sustainability in the US.
USDA/HHS argued at the time that sustainability was “out of scope” of dietary guidelines.
USDA/HHS argued at the time that sustainability was “out of scope” of dietary guidelines.
Reposted by Dom
1/ PolyBio’s Dr. Sara Cherry asserts: “Treating [the lung] with either nirmatrelvir (Paxlovid) or molnupiravir, we clear the [SARS-CoV-2] infection by 10,000-fold… while nirmatrelvir clears the infection in intestinal cultures, molnupiravir has no activity.”
December 12, 2024 at 4:05 PM
1/ PolyBio’s Dr. Sara Cherry asserts: “Treating [the lung] with either nirmatrelvir (Paxlovid) or molnupiravir, we clear the [SARS-CoV-2] infection by 10,000-fold… while nirmatrelvir clears the infection in intestinal cultures, molnupiravir has no activity.”