@valebodi
Surviving MyalgicE, AAG & CVID to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/ PwME = ME apolide/ Gnarled pacer. MEssLand Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031
“HIV taught us how chronic viral infections can affect the body long after initial illness, and how important it is to involve patients in that research,” said @michaelpelusomd.bsky.social. “Applying those lessons to #LongCovid has helped us accelerate discovery” www.ucsf.edu/news/2026/01...
Distinct Symptom Clusters Reflect Pathophysiological Mechanisms in #ME/CFS
Lotte Habermann-Horstmeier1
Email
Lukas M. Horstmeier2
1 Villingen Institute of Public Health (VIPH),
2 University Hospital Freiburg
2) The authors argue that this is urgently needed because these patients are often excluded from research:
"A central limitation of the current body of research is the insufficient inclusion of patients with severe and very severe ME/CFS into clinical studies."
impairment in energy metabolism during both rest and activity.
12 hours.
Context: While RMR provides a snapshot of energy needs, it is more commonly used for monitoring nutritional needs rather than diagnosing the underlying metabolic dysfunction of ME/CFS.
While RMR can quantify the metabolic state, it is important to consider the overall, profound
I wish they’re testing RMR in studies. Imo it can tell us something on ME
How RMR Testing Works
Procedure: Individuals lie supine, often with a clear hood over their head, for 20-30 minutes to measure oxygen consumption and carbon dioxide production.
Preparation: Typically requires fasting for 8 to
1) 🇩🇪 This German study will test the feasibility of home-based diagnostics in patients with severe and very severe ME/CFS (Bell score < 30).
They plan to take blood and saliva samples, questionnaires and measurements such as ECG, ultrasound, pupillary responses, HRV, etc.
Great & wise change, thank you for that and your ongoing posts!
This paper by Karl Tronstad was published in the journal Cell Reports Medicine.
We made summary about it below 👇
therapeutic development.
inflammation, vasculature, and metabolism. Validation of measurements using antibody-based methods confirms findings for a selection of proteins. The uncovered serum proteome patterns in ME/CFS patients may contribute to understanding the pathophysiology and inform future biomarker research and
from skeletal muscle, particularly show reduction. Immune cell-associated signatures indicate immune reprogramming, including a distinct reduction in proteins secreted by activated neutrophils. Focused secretome analysis supports intensified regulatory interactions related to immune activity,
protein targets. We identify 1,823 aptamers with significant differences between the groups (845 after false discovery rate [FDR] correction). Distinct patterns of tissue- and process-specific changes are seen. There is a broad increase in secreted proteins, while intracellular proteins, e.g.,
Summary
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition often triggered by infections, with unclear mechanisms and no established biomarkers or treatments. We apply aptamer-based serum proteomics to 50 ME/CFS patients and 29 healthy controls, analyzing 7,326
Serum proteomics reveals widespread protein changes in ME/CFS patients
Tissue-linked shifts show reduced intracellular & increased secreted proteins
Immune signatures show reprogramming with reduced neutrophil-derived proteins
Regulatory networks link immune, vascular, and metabolic dysfunction
Charting the circulating proteome in #ME/CFS using cross-system profiling to uncover mechanistic insights
K. J. Tronstad et al. 🇳🇴
Check out the new stories on virologydownunder.com if you're looking for something different to distract yourself from wars, drones, missiles, domes, or nuclear proliferation.
TW: Assisted Suicide
Clip from German TV. Kim has #MECFS and describes how her illness has progressed, leaving her bedbound and sensitive to light and sound.
At 25, she talks about her decision to apply for assisted suicide, saying she can no longer live like this.
"Those with ME have experienced years of being treated unjustly. Sometimes, it feels endless and irreversible. But remember this: getting things done in parliament starts with having MPs on your side." Tessa Munt MP. New #ThereForME Substack post.
We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.bsky.social.
In her blog, Tessa lays out the case for change and how to get involved.
Link in next post 👇
brains would have been on deck to understand this bona fide disease (which btw has been recognized as such since 1969 by the WHO) and today we would have true care pathways, specialized clinics, support and targeted treatments.
What medicine and society have done to #pwME is criminal and unjust.
default. What PESE and #PEM are and the way they are explaind to other people, frequently fails to convey the severity of #pwME’s disability. The restrictions and very real physiological penalties that living with #ME/CFS put on sufferers’ lives are astounding. In a caring world all hands and
The most severe stage of #ME/CFS is like being buried alive in quick sands frequently while also being in pain. It’s not as simple and as straightforward as lacking energy to do normal daily life activities. There’s a payback which cannot be payed back. Each crash brings you deeper into energy
In reality having #ME/CFS feels very much like trying to live with a ball and chain attached to your feet, a choking collar and a very short leash obstructing oxygenated blood circulating up to one’s brain and muscles . All invisible to the naked eye, but very much rooted in physiology.
doesn’t fully convey how much we suffer and how critical it is that people in the early stages of ME get promptly clinically diagnosed, advised to pace, supported, helped and treated (symptomatically speaking for now, since we don’t have targeted treatments yet).
#ME/CFS
physiology. The most severe stage is like being buried alive in quick sands while also being in pain. If only it was that simple and straightforward as lacking energy to do normal daily life activities. But in reality the payback PESE and vicious physiological cycle, is much much worse and #PEM
Correct, but very basic description. In reality having ME feels very much like trying to live with a ball and chain attached to your feet, a choking collar and a very short leash obstructing oxygenated blood circulating up to one’s brain and muscles . All invisible to the naked eye, but rooted in
distinct from idiopathic ME/CFS, and support a model of chronic immune activation and dysregulation. Our findings offer a cellular framework for understanding LC pathogenesis and point to potential biomarkers and therapeutic targets for intervention.
Single-cell analysis reveals immune remodeling of monocytes, NK cells, T cell exhaustion, and Galectin-9–associated depletion of gamma delta and mucosal-associated invariant T cells in Long COVID with #ME/CFS
Conclusion: Our results reveal extensive peripheral immune remodeling in LC-ME/CFS,
Prof. Klaus Wirth, Mitodicure GmbH, Goethe University, Germany.
Recorded at the 2025 Swedish ME Association (RME) and The Swedish Covid Association conference
#ME/CFS #LongCOVID
