Lmst

(Victoria, Australia)

ME/CFS drug trial that is recruiting:

Evaluating the effectiveness of trimetazidine in treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

https://app.trialscreen.org/trials/phase-2-3-tri-trimetazidine-to-treat-myalgic-encephalomyelitis-chronic-trial-actrn12625000095460

I am not in the position to answer questions on this.

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

A Phase 3 interventional study of trimetazidine in ME/CFS
Evaluating the effectiveness of trimetazidine in treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Share study information
126 participants
TrialScreen uses technology to help simplify and reframe medical terms that can sometimes be difficult to understand. Please find the original version on Australian New Zealand Clinical Trials Registry
Study Goals
The goal of this study is to assess the efficacy of trimetazidine, a metabolic agent, in treating ME/CFS. The study aims to investigate if trimetazidine can improve mitochondrial function, reduce inflammation and oxidative stress, and alleviate symptoms associated with ME/CFS.

2/
New from international research group

Immunoglobulin G Complexes from Post-infectious ME/CFS, including post-COVID ME/CFS Disrupt Cellular Energetics and Alter Inflammatory Marker Secretion

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs @longcovid

Highlights:
•
This study addresses a critical gap in understanding the role of autoimmunity in ME/CFS and PASC, two debilitating conditions with overlapping features and few effective treatments.
•
By demonstrating that IgG antibodies from ME/CFS patients can directly alter mitochondrial structure and function in human endothelial cells, specifically inducing mitochondrial fragmentation and metabolic reprogramming, this study provides a mechanistic link between autoantibodies and endothelial cell dysfunction.
•
Furthermore, proteomic analyses reveal unique immune complex signatures in ME/CFS and PASC, highlighting disease-specific IgG activity and supporting the idea of antibody-mediated metabolic dysregulation.
•
These insights are especially important because they establish a foundation for novel, targeted therapies that modulate antibody activity or protect mitochondrial function.

New from international research group

Immunoglobulin G Complexes from Post-infectious ME/CFS, including post-COVID ME/CFS Disrupt Cellular Energetics and Alter Inflammatory Marker Secretion

https://www.sciencedirect.com/science/article/pii/S2666354626000207?via%3Dihub

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/

Abstract
Background
Autoimmunity is a key clinical feature in both post-infectious Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Post-Acute Sequelae of COVID (PASC). Passive transfer of immunoglobulins from patients' sera into mice induces some clinical features of PASC. However, the physiological effects of immunoglobulins on cellular alterations remain elusive. In this study, we tested the potential effects of immunoglobulins from ME/CFS patients on endothelial cell dysfunction.
Methods
We have isolated immunoglobulins from 106 individuals, including ME/CFS (n=39), PCS-CFS (n=15), MS (n=20) patients, and healthy controls (n=41). Protein composition of the isolated immune complexes was studied using mass spectrometry. The effect of isolated immune complexes on mitochondria was evaluated using confocal microscopy and a Seahorse XFe96 Extracellular Flux Analyzer, and the impact on inflammatory cytokine secretion was studied using a multiplex bead-based assay.
Results
Here, we demonstrate that IgG isolated from post-infectious ME/CFS patients selectively induces mitochondrial fragmentation in human endothelial cells and alters cellular energetics. This effect is lost upon cleavage of IgG into its Fab and Fc fragments.

From Dr Daniel Missailidis on X

We're starting another round of home blood collections today for two ME/CFS and Long COVID studies!

If you live in Victoria, Aus and are interested in participating, please fill out the following:

https://redcap.latrobe.edu.au/redcap/surveys/?s=XHX3CREK8Y49NTDM

#MEcfs #LongCovid @mecfs @longcovid

The Stigma of self-report in health research: Time to reconsider what counts as “Objective” by Nisreen A. Alwan nisreen@mastodon.online

https://journals.plos.org/globalpublichealth/article?id=10.1371/journal.pgph.0005521

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

The Stigma of self-report in health research: Time to reconsider what counts as “Objective” — Nisreen A. Alwan
"The assumption is that people misremember, exaggerate, or misinterpret their symptoms. But what if the problem lies not in the type of data, but in our unwillingness to trust this mode of reporting without adequate justification for such mistrust?"

Tom Kindlon boosted:

2/

"PCS patients meeting ME/CFS criteria showed the most pronounced impairments, suggesting that retinal ED reflects the severity of the post-infectious phenotype."

https://www.medrxiv.org/content/10.64898/2026.01.22.26344661v1

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid #CFS #PwME @longcovid @mecfs

Microvascular Remodeling and Endothelial Dysfunction Across Post-COVID-19 and ME/CFS: Insights from the All Eyes on PCS Study — Timon Wallraven et al.
"we observed a continuous gradient of retinal [Endothelial Dysfunction], with progressively lower vFID, CRAE, and AVR values across increasing clinical severity." "PCS patients meeting ME/CFS criteria showed the most pronounced impairments, suggesting that retinal ED reflects the severity of the post-infectious phenotype."

“Fibromyalgia is now recognized as a disability, expanding rights in Brazil.
Law No. 15.176/2025 guarantees preferential treatment, inclusion in the job market, and other benefits.”

https://folhadolitoral.com.br/en/editorias/ciencia-e-saude/fibromialgia-passa-a-ser-reconhecida-como-deficiencia-e-amplia-direitos-no-brasil/

#Fibromyalgia #Fibro #FMS #FM

"the relationship between reporting persisting symptoms & increased healthcare consumption could not be explained by cognitive-behavioural factors, depressive symptoms or neuropsychological functioning."

https://link.springer.com/article/10.1007/s12529-026-10434-w

Screenshot from latest Science for ME weekly update

Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2

Healthcare Consumption and Work Absenteeism of Individuals With and Without Persistent Complaints After COVID-19: The Role of Cognitive-Behavioural Factors, Neuropsychological Functioning and Depressive Symptoms — Verveen et al.
"the relationship between reporting persisting symptoms and increased healthcare consumption could not be explained by cognitive-behavioural factors, depressive symptoms or neuropsychological functioning."

A cross-continental comparative analysis of the neurological manifestations of Long COVID

https://www.frontiersin.org/journals/human-neuroscience/articles/10.3389/fnhum.2025.1760173/full

Screenshot from latest Science for ME weekly update

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 #auscovid19 #CovidIsNotOver

A cross-continental comparative analysis of the neurological manifestations of Long COVID — Jimenez et al.
"This study found that overall, cognitive and sleep disorders, headache and dizziness were the most frequent neurologic symptoms as well as fatigue." "Neuro-PASC affects young and middle-aged adults in their prime, causing significant detrimental impact on the workforce, productivity and innovation all over the world."

From Austria:

Use and Perceived Helpfulness of Different Intervention Strategies in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Depression

https://www.mdpi.com/2077-0383/15/2/849

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs

Use and Perceived Helpfulness of Different Intervention Strategies in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Depression — Marie Celine Dorczok et al.
"Findings suggest that participants with ME/CFS tend to adopt an exploratory and expansive intervention approach, potentially reflecting the lack of standardized guidelines and limited effectiveness of available treatment options" "Participants with depression, in contrast, appeared to follow more guideline-concordant, evidence-based treatment pathways."

How can we manage our wellbeing when interacting with others online?

https://www.actionforme.org.uk/resource/behind-the-screen/

"In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment."

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #LongCovid #chronicillness @mecfs #chroniclife
#ChronicPain
#Spoonielife
#hiddenillness
#invisibleillness
#ChronicIllnesses
#Spoonies
#Spoonie

Behind the screen
From InterAction 120, published autumn 2025

How can we manage our wellbeing when interacting with others online?

SPEED READ

In our digital age, we can communicate in various ways. We can form relationships online that are meaningful, valuable and supportive. There are real people behind the screens. This has both benefits and challenges. In this article, we start a conversation about life online, with some reflections on how to manage our wellbeing in this environment.

***

Exciting to read about the ME/CFS research studies planned in the Netherlands

Millions of euros of taxpayers' money is supporting biomedical research

Google English translation:
https://nmcb-eu.translate.goog/general-assembly-jan-26/?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs #MEcvs #CVS

General Assembly Jan '26
Patient Report from the NMCB General Assembly

Opening of the NMCB General Assembly
The General Assembly of the Netherlands ME/CFS Cohort and Biobank Consortium (NMCB) on January 13, 2026, was opened by Jos Bosch, project leader of the consortium. In his introduction, he outlined how NMCB has developed since its inception from a relatively compact research program into a broad, national collaboration that now encompasses thirteen research projects.

Bosch discussed the infrastructure that forms the core of the consortium. NMCB connects all seven university medical centers in the Netherlands, supplemented by universities, research institutes such as TNO, clinical partners, and patient organizations. This shared infrastructure consists of a comprehensive patient registry, multiple biobanks (blood, muscle tissue, brain material), and a broad testing program including MRI, EEG, cognitive tests, and autonomic function measurements.

A key point in his opening remarks was the accessibility of the research. Bosch emphasized that NMCB explicitly focuses on the participation of seriously ill and homebound patients, including through home measurements, mobile measurement setups, and adapted protocols. This group is often overlooked in research, even though it is there that the most pronounced biological signals are potentially visible.

Trial By Error: New Medical Anthropology Book on Chronic Illness Triggers Controversy By David Tuller
https://virology.ws/2026/02/01/trial-by-error-new-medical-anthropology-book-on-chronic-illness-triggers-controversy/

#mecfs @mecfs

(UK)
News Release 2-Feb-2026
Tracker to help manage Long COVID energy levels created by researchers

https://www.eurekalert.org/news-releases/1114596

"app with a wearable tracker that gave real-time feedback and alerts when they were close to doing too much"

https://www.nature.com/articles/s41467-025-64831-y

@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
@mecfs

News Release 2-Feb-2026
Tracker to help manage Long COVID energy levels created by researchers
Peer-Reviewed Publication
Lancaster University

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DrLawrenceHayes
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Dr Lawrence Hayes of Lancaster Medical School

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Credit: Lancaster University

The first study to test a digital tool designed to help people with Long COVID manage their energy levels has been developed by a team of researchers.

The paper published in Nature Communications is entitled “A Digital Platform with Activity Tracking for Energy Management Support in Long COVID: A Randomised Controlled Trial”.

In this study, funded by the National Institute for Health and Care Research (NIHR), people with Long COVID tried out a new app called “Pace Me” to help manage their energy levels. The tool combines a wearable activity tracker (Fitbit watch) with an app that sends helpful messages throughout the day, reminding users when they may be doing too much.

Tom Kindlon boosted:

From #MEAction -

"ICE Makes Me Sick: Fund Healthcare, Not Violence"

https://www.meaction.net/post/ice-makes-me-sick-fund-healthcare-not-violence

"No more money to ICE. Restore funding for healthcare and independent living support for disabled people."

You can help!

Email your Congress rep using this tool:

https://actionnetwork.org/letters/ice-makes-me-sick/

Read the Take Action Guide for more actions:

https://docs.google.com/document/d/1m2ildcczbynGRYAhNldmfuTLUdxnZB4z8oNhP8YPlg4/edit?tab=t.0#heading=h.cp029e1ob1r8

co-sponsored by Long Covid Justice

#USPol #ICEout #AbolishICE #MEcfs #LongCovid #ChronicIllness #Disability #Resist

ICE Makes Me Sick.
Fund Healthcare, Not Violence.

MakesMeSick.org

Tom Kindlon boosted:

February online events hosted by the Bateman Horne Center:

1) Support group on Tues, Feb 3

https://batemanhornecenter.org/event/online-support-group-112/

2) "Coffee" with a Clinician - Wed Feb 11

https://batemanhornecenter.org/event/coffee-with-a-clinician-2/

3) Support group on Tues, Feb 17

https://batemanhornecenter.org/event/online-support-group-113/

More details and registration info at links.

@mecfs @longcovid

#MEcfs #LongCovid #POTS #ChronicIllness #Support

Upcoming online events, February 2026.

Tues, Feb. 3:
Support group, 1 PM - 2 PM Mountain Standard Time
"Chronic Illness: Facing Limits and Losses (Moving through Grief)"

Wed, Feb. 11:
"Coffee" with a Clinician, 10 AM - 11 AM Mountain Standard Time
"Assessing Impaired Function (Clinical Evaluation)"

Tues, Feb. 17:
Support group, 1 PM - 2 PM Mountain Standard Time
"Coping with Depression and Emotional Overload"

Register now: BatemanHorneCenter.org/Events

Tom Kindlon boosted:

Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Jan. 26 - Feb. 1.

Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research

https://www.s4me.info/threads/news-in-brief-january-2026.48068/#post-671566

@mecfs
@longcovid

Living with #MECFS

All of these things can be out of reach, or close to, for some #MyalgicEncephalomyelitis patients. Some will be able to attain some of these things at certain points during their illness.

From Lu Baker Art https://instagram.com/lubakerart
(repeat)

#CFS #PwME #ChronicFatigueSyndrome @mecfs