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mecfsrecluse.bsky.social

@mecfsrecluse.bsky.social
102 followers 164 following 0 posts

Lawyer. ME since Oct 2000. Mostly housebound since 2014. #ME #hEDS #dysautonomia #Citrate synthase deficiency #impaired oxygen extraction #celiac #mitochondrial disease Interested in ME research and treatment options.

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Tom Kindlon @tomkindlon.bsky.social · 11/10/2026
Low Vasopressin in Myalgic Encephalomyelitise/Chronic Fatigue Syndrome Vasopressin is also known as antidiuretic hormone www.endocrinepractice.org/article/S153... Screenshot from AMMES October 2026 newsletter #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Photo of someone lying, collapsed on sand looking exhausted

With the following text

LOW VASOPRESSIN IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME
In a consecutive series of ME-CFS patients, majority had very low vasopressin levels, relatively high plasma osmolality and low urine osmolality, in absence of overt hypothalamic or hypophyseal pathology. Chronic down-regulation of vasopressin mimicking central diabetes insipidus may contribute to the core symptoms of ME/CFS.  
Read more here>>
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 09/10/2026
Why do people with Long COVID and ME/CFS wake up unrefreshed, even when a standard sleep study looks close to normal? A 2026 study in the journal SLEEP points to the fine-grained structure of sleep itself.
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Billy Hanlon @bhanlon15.bsky.social · 21/09/2026
Health Rising: IVO-21 – A Paradigm Changer AND a Mitochondrial Drug for ME/CFS? 'It’s remarkable to see two senior intramural mitochondrial researchers, Dr. Chung & Dr. Hwang, working at an NIH Institute that has essentially ignored ME/CFS now digging into it' www.healthrising.org/blog/2026/09...
healthrising.org
IVO-21 - A Paradigm Changer AND a Mitochondrial Drug for ME/CFS? - Health Rising
Could a new mitochondrial drug called IVO-21 be the answer to the energy problems in ME/CFS, fibromyalgia, and long COVID?
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Nature Portfolio @natureportfolio.nature.com · 11/09/2026
Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. A study in Nature Communications shows that long COVID and ME/CFS patients have distinct skeletal muscle changes that cannot be solely explained by physical inactivity. go.nature.com/4cgzmxU 🧪
This is figure 1, which shows bed rest results in alterations in respiratory and cardiovascular responses to maximal exercise, which are not seen in either patients with long COVID or ME/CFS.
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Eric Topol @erictopol.bsky.social · 05/08/2026
Severe Covid leads to persistent viral reactivation, with >10 different viruses noted in the first 40 days after hospital admission. Long Covid was specifically associated with reactivation of latent Anelloviridae virus @nature.com www.nature.com/articles/s41...
nature.com
Virus reactivation in acute and long COVID-19 - Nature
Chronic reactivation of distinct herpesviruses and anelloviruses occur during acute and long COVID-19, and track with disease severity, inflammation and outcomes, revealing immune signatures with prog...
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Hannah Davis @ahandvanish.bsky.social · 06/08/2026
Neuromuscular dysfunction in #LongCovid shows changes between 1.2 - 2.6 yrs from infection: Muscle disease dropped from 78% (1.2 yrs) to 18% (2.6 yrs). But SFEMG (junction where nerve meets muscle) stayed abnormal: 54% (1.2 yrs) to 56% (2.6 yrs). www.sciencedirect.com/science/arti...
sciencedirect.com
Persistent neuromuscular dysfunction in long COVID: A quantitative and single fiber EMG follow-up study
Persistent symptoms after SARS CoV-2 infection, often designated as "long COVID”, continue to be an ongoing health issue. Previously, we reported elec…
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ME/CFS Science @mecfsscience.org · 21/07/2026
1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.
mecfsscience.org
Cell and tissue enrichment in ME/CFS - ME/CFS Science
By matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS
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Tom Kindlon @tomkindlon.bsky.social · 03/07/2026
NEWS RELEASE 2-JUL-2026 Brain’s waste-clearing ability impaired in ME/CFS patients www.eurekalert.org/news-release... Paper: www.frontiersin.org/journals/neu... #mecfs #pwme #cfs 1/
NEWS RELEASE 2-JUL-2026
Brain’s waste-clearing ability impaired in ME/CFS patients
The brain’s waste clearance system is impaired in people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) which can lead to various symptoms including brain fog, Griffith University researchers have discovered

Peer-Reviewed Publication
GRIFFITH UNIVERSITY
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Billy Hanlon @bhanlon15.bsky.social · 13/01/2026
Griffith University: New research confirms people with ME/CFS have a consistent faulty cellular structure 'New research found a crucial cellular structure responsible for calcium transport, the TRPM3 ion channel, was faulty in immune cells from people with ME' news.griffith.edu.au/2026/01/13/n...
news.griffith.edu.au
New research confirms people with ME/CFS have a consistent faulty cellular structure - Griffith News
A faulty ion channel function is a consistent biological feature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), providing long-awaited
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Billy Hanlon @bhanlon15.bsky.social · 05/12/2025
Health Rising: “ME/CFS Autopsy Study Finds a Wrecked HPA Axis: The 2025 IACFS/ME Conference Report #3” “.. they found almost no CRH producing neurons in the ME/CFS patients. That suggested that a general suppression of the hypothalamus…” www.healthrising.org/blog/2025/12...
healthrising.org
ME/CFS Autopsy Study Finds a Wrecked HPA Axis: The 2025 IACFS/ME Conference Report #3 - Health Rising
A Dutch ME/CFS autopsy report findings multiple severe problems in the HPA axis of ME/CFS patients.
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Billy Hanlon @bhanlon15.bsky.social · 13/11/2025
'Microscopic Structures Found in Long COVID Blood' 'These methods allowed them to accurately differentiate Long COVID patients from healthy individuals and to pinpoint the most informative biomarker combinations.' www.miragenews.com/microscopic-...
miragenews.com
Microscopic Structures Found in Long COVID Blood
The researchers also incorporated Artificial Intelligence tools, including machine learning, to analyze biomarker patterns. These methods allowed them
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 10/11/2025
Lipkin's team have found evidence that the innate immune system in people with ME/CFS is hyperstimulated with different levels of metabolites & proteins. Drugs that dampen the innate immune response (e.g. interleukin-37, metformin, rapamycin) may reduce fatigue & PEM. tinyurl.com/mr2a7uyv
tinyurl.com
Hyperstimulated Innate Immune System Can Drive ME/CFS-Associated Fatigue and Post-Exertional Malaise - Solve ME/CFS Initiative
A new study by Dr. Ian Lipkin describes how a hyperactive innate immune system can drive ME/CFS-associated fatigue and post-exertional malaise.
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DecodeME @decodemestudy.bsky.social · 06/08/2025
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. - Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s
DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.
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Janet 🇨🇦 @jansplanet.bsky.social · 24/07/2025
Great news, possible treatment options & a better understanding of why women are disproportionately affected by ME/CFS long-COVID. 😷 #COVIDisNotOver www.montrealgazette.com/news/health/...
montrealgazette.com
Discovery by Montreal researchers could bring hope to long-COVID sufferers
UdeM researchers have identified a potential new biomarker and therapeutic target for myalgic encephalomyelitis, once known as chronic fatigue syndrome.
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Tom Kindlon @tomkindlon.bsky.social · 07/06/2025
"An exhausted antiviral immune response is observed in myalgic encephalomyelitis/chronic fatigue syndrome (#MECFS) & long COVID. In this study, potential mechanisms behind this exhaustion were investigated" www.mdpi.com/1999-4915/17... Image is from AMMES June 2025 e-newsletter #CFS

Reactivated EBV, HHV6, HAdV in Sputum from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients: Are autoAbs to IFN-I Impairing Antiviral Immunity?
"An exhausted antiviral immune response is observed in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID. In this study, potential mechanisms behind this exhaustion were investigated. First, the viral load of EBV, HAdV, human cytomegalovirus (HCMV), human herpesvirus 6 (HHV6), and SARS-CoV-2 was determined in sputum samples (n=29) derived from ME/CFS patients (n=13), healthy controls (n=10), elderly healthy controls (n=4), and immunosuppressed controls (n=2). Secondly, autoAbs to type I interferon (IFN-I) in sputum were analyzed to possibly explain impaired viral immunity. We found that ME/CFS patients released EBV at a significantly higher level compared to controls (p=0.0256)."
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Tom Kindlon @tomkindlon.bsky.social · 06/10/2024
"For COVID ‘long haulers,’ glimmers of good news" Description from Science for ME weekly update Link: www.bostonglobe.com/2024/10/02/m... archive.ph/Vjq0U#select... #LongCovid #PASC #COVID19 #COVID
Boston Globe For COVID 'long haulers', glimmers of good news
On Dr. David Systrom's work at Brigham and Women's Hospital. "A growing body of research suggests that both long COVID and chronic fatigue are post-viral syndromes that result in chronic, low-grade inflammation that can damage healthy tissue and, in some cases, the production of auto-antibodies that can attack it. Systrom and others have begun to catalog the scope of the microscopic carnage caused by the immune system's friendly fire."
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