@dom2023
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.
yup very interesting
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.
To be honest a lot of pots is autoimmune driven by ebv and/or other viral reserviors. But a far better writeup is over here: substack.com/home/post/p-... worth reading the whole thing to get all the POTS knowledge.
I had a feeling I'd spelt it wrong, yep.
the parkinsons biomarkers are interesting, as are the dementia ones in the gut. Statistically significance though of the range and level is always important and often not mentioned. Knavus for example is fine at say 0.2% but above 1.5% that's enough to be problematic.
I have two 16s tests both showing high butyrate that correleates with much lower physical fatigue. So there's no doubt in my mind it works now. It took me about 2 years to replicate the first result. Sadly due to long covid and its effects on my autonomic nervous system I get less of a benefit.
Absolutely helps, it's been super difficult lately but ME fatigue and POTS fatigue are definitely not the same thing. My ME fatigue responded to rest, dietary changes and butyrate. My POTS fatigue did not and I am currently treating that, but salt in water is helping the most so far.
Hello. well I got my most recent test results, it's at 55% now, so I'm getting all those benefits.
How to support your friend who lives with ME/CFS or long COVID Home / MECFS Information / How to support your friend who lives with ME/CFS or long COVID Emerge Australia has put together this guide to help you understand what someone with ME/CFS may be experiencing, and to provide some tips to help support them to stay connected.
🧵
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/
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.
From stacy (on X?) @stacycay "We've done this mass tariff thing 3 times in American history. 1828, 1930, 2025. All spaced about 100 years apart because everyone who remembers the last one needs to be dead for the next one to happen. The last two caused a depression. I hope this one makes us rich tho."
sigh.
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...
Saddened to share the news about Byron Hyde's passing.
He was a champion for people with #MyalgicEncephalomyelitis
colleensteckelmeiccinfo.substack.com/p/byron-hyde...
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
#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...
"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...
Same :(
Just a note this is for UK data - central england.
I haven't computed all the averages yet, but so far only 1 week showed less pollen out of 5 weeks I have so far computed the averages for starting begining of March ending April 7th today.
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.
Quinnipiac Center from Interprofessional Healthcare Education logo at top left Interprofessional Healthcare Education/Collaborative Practice Networking Summit Mini-grants will be available for implementation of the top IPE/CP ME/CFS and Long COVID programming developed at the workshop. Register by April 4 Event is at: April 12, 2025 10am - 1pm ET Quinnipiac University North Haven Campus In-person event with virtual option available Free of charge, Funded by the Carol L. and Gustave Sirot Endowed Fund On the right is a picture of me in a gold and blue circle. Below, it says Jaime Seltzer, Scientific Director of MEAction, Keynote Speaker
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
Volunteers Needed Long COVID Clinical Trial Icahn School of Medicine at Mount Sinai Do you have a confirmed diagnosis of Long Covid? You may be eligible for a 6 month drug clinical trial involving antiviral drugs You may qualify if: • You are over 18 • You have a diagnosis of Long Covid from a physician • You are HIV negative • You are able to commute to our office • Other criteria are considered as well Participation Involves: • Being randomly assigned into one of three groups • Truvada (drug) • Selzentry (drug) • Placebo • Attend 6 in-person study visits • Blood and saliva samples • Completion of surveys online Study goal: We are investigating if antiviral medications have an effect on Long Covid symptoms IRB Approved Effective Date: 12/17/2024 End Date:7/22/2025 Please email CoreResearch@MountSinai.org for more information Location: 5 East 98th St, SB-18 Lead Researcher: David Putrino, PT, PhD STUDY- 24-00088 Participation will be compensated up to $300
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.
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.
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...
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
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/
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
