#MECFSResearch
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mecfsresearch.bsky.social
Meet the Team: Vera is a microbiologist and immunologist. Due to moderate #MECFS, she has spent most of the past ten years lying down. She brings her scientific expertise to our team. She wants her life back, and that takes investment in research. #mecfsresearch
October 8, 2026 at 7:05 AM
mecfsresearch.bsky.social
Projekt 7 unserer 2,4-Mio.-€-Förderung: MARK-ME entwickelt minimale Biomarker-Panels für eine objektivere ME/CFS-Diagnostik. Per Machine Learning aus bestehenden Immundaten. Mehr Infos: https://t.ly/-MufV #mecfsf="/hashtag/mecfsresearch" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#mecfsresearch #mecfs
Cover der ME/CFS Research Foundation: 2,4 Mio. € für 7 neue Forschungsprojekte, Projekt 7: MARK-ME. Förderzeitraum September 2026 bis August 2028. Logo des Berlin Institute of Health at Charité, Adresse projects.mecfs-research.org. Textgrafik der ME/CFS Research Foundation: Die Diagnose von ME/CFS basiert auf klinischen Kriterien, objektive Biomarker fehlen bislang. Sie könnten die Diagnosestellung ergänzen, Unsicherheiten und Verzögerungen verringern und als Messgrößen für klinische Studien dienen. Textgrafik der ME/CFS Research Foundation: Biomarker gewinnen an Bedeutung, da Forschungsergebnisse auf eine biologische Heterogenität von ME/CFS hinweisen. Bei einem Teil der Erkrankten spielen immunologische Fehlregulationen und autoimmune Mechanismen eine zentrale Rolle. Textgrafik der ME/CFS Research Foundation: MARK-ME entwickelt minimale Biomarker-Panels für Diagnose und Stratifizierung. Machine Learning identifiziert aus bestehenden Immundaten die aussagekräftigsten Kombinationen. Unten das Porträt von Prof. Dr. Birgit Sawitzki.
September 15, 2026 at 7:00 AM
mecfsresearch.bsky.social
Project 7 of our €2.4M funding round: MARK-ME develops minimal biomarker panels for more objective ME/CFS diagnostics, using machine learning on existing immune data. More: https://t.ly/-0gm2 #mecfsf="/hashtag/mecfsresearch" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#mecfsresearch #mecfs
Cover by the ME/CFS Research Foundation: €2.4M for 7 new research projects, Project 7: MARK-ME. Funding period September 2026 to August 2028. Logo of the Berlin Institute of Health at Charité, address projects.mecfs-research.org. Text graphic by the ME/CFS Research Foundation: Diagnosing ME/CFS relies on clinical criteria, and objective biomarkers are not yet available. They could complement diagnosis, reduce uncertainty and delays, and serve as measures in clinical trials. Text graphic by the ME/CFS Research Foundation: Biomarkers are gaining importance because research points to biological heterogeneity in ME/CFS. In a subgroup of patients, immune dysregulation and autoimmune mechanisms play a central role. Text graphic by the ME/CFS Research Foundation: MARK-ME develops minimal biomarker panels for diagnosis and stratification. Machine learning identifies the most informative combinations from existing immune data. Below, a portrait of Prof. Dr. Birgit Sawitzki.
September 15, 2026 at 7:05 AM
camillebuckner.bsky.social
Community Symposium on the Molecular Basis of ME/CFS

Stanford Genome Technology Center

9/11 at 11:00am EDT

#MECFS #MECFSResearch #pwME
#MEAwareness #MillonsMissing
swastrosarah.bsky.social sarah boothby @swastrosarah.bsky.social · Sep 11
Starts 4pm BST ends 2am BST.
Register in advance to join (on Zoom).
stanford.zoom.us/webinar/regi...
List of 16 speakers invited to present their biomedical research at the Stanford symposium on ME
September 11, 2026 at 6:51 AM
mecfsresearch.bsky.social
Projekt 6 unserer 2,4-Mio.-€-Förderung: Ein Team in Erlangen sucht per Einzelzell-RNA-Sequenzierung nach autoreaktiven Immunzellen, die als Biomarker für ME/CFS und Post-COVID dienen könnten. Mehr Infos: https://t.ly/-MufV #mecfsf="/hashtag/mecfsresearch" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#mecfsresearch #mecfs #postcovid
Cover der ME/CFS Research Foundation: 2,4 Mio. € für 7 neue Forschungsprojekte, Projekt 6: Analyse des Rezeptorrepertoires von T-Zellen und B-Zellen. Förderzeitraum September 2026 bis August 2028. Logo des Uniklinikums Erlangen, Adresse projects.mecfs-research.org. Textgrafik der ME/CFS Research Foundation: Autoimmunität spielt bei ME/CFS und Post-COVID-Syndrom vermutlich eine wichtige Rolle, die Symptome ähneln sich stark. Unklar ist bislang, warum nur bestimmte Patient*innengruppen auf immunmodulatorische Therapien ansprechen. Textgrafik der ME/CFS Research Foundation: Es werden zusätzliche Biomarker benötigt. Die Analyse des B- und T-Zell-Rezeptor-Repertoires kann klonal vermehrte, potenziell autoreaktive Immunzellen identifizieren. Die Einzelzell-RNA-Sequenzierung ist dafür sensitiver als die Bulk-Sequenzierung. Textgrafik der ME/CFS Research Foundation: Das Projekt identifiziert klonal vermehrte, potenziell autoreaktive Rezeptoren im Blut und vergleicht sie mit gesunden Kontrollen. Untersucht wird auch die Wirkung von BC007 und Kortikosteroiden. Unten Porträts der Projektleitung.
September 8, 2026 at 7:00 AM
mecfsresearch.bsky.social
Project 6 of our €2.4M funding round: A team in Erlangen uses single cell RNA sequencing to find autoreactive immune cells that could serve as biomarkers for ME/CFS and post-COVID. More: https://t.ly/-0gm2 #mecfsf="/hashtag/mecfsresearch" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#mecfsresearch #mecfs #postcovid
Cover by the ME/CFS Research Foundation: €2.4M for 7 new research projects, Project 6: Single Cell RNA Sequencing Analysis of the Immune Cell Receptor Repertoire. Funding period September 2026 to August 2028. Logo of Uniklinikum Erlangen, address projects.mecfs-research.org. Text graphic by the ME/CFS Research Foundation: Autoimmunity likely plays an important role in ME/CFS and post-COVID syndrome, and the symptoms are highly similar. It remains unclear why only certain groups of patients respond to immunomodulatory therapies. Text graphic by the ME/CFS Research Foundation: Additional biomarkers are needed. Analysing the B and T cell receptor repertoire can identify clonally expanded, potentially autoreactive immune cells. Single cell RNA sequencing is more sensitive for this than bulk sequencing. Text graphic by the ME/CFS Research Foundation: The project identifies clonally expanded, potentially autoreactive receptors in the blood and compares them with healthy controls. It also examines the effect of BC007 and corticosteroids. Below, portraits of the project leads.
September 8, 2026 at 7:05 AM
mecfsresearch.bsky.social
Projekt 5 unserer 2,4-Mio.-€-Förderung: Ein Team in Heidelberg, München und Berlin untersucht, ob fehlgesteuerter Zelltod nach Virusinfektionen chronische Entzündungen bei ME/CFS antreibt. Mehr Infos: projects.mecfs-research.org #mecfsf="/hashtag/mecfsresearch" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#mecfsresearch #postcovid #longcovid #mecfs
Cover der ME/CFS Research Foundation: 2,4 Mio. € für 7 neue Forschungsprojekte, Projekt 5: Zelltodvermittelte Entzündungsmechanismen bei virusinduziertem ME/CFS. Förderzeitraum September 2026 bis August 2028. Logos der beteiligten Einrichtungen, Adresse projects.mecfs-research.org. Textgrafik der ME/CFS Research Foundation: Programmierter Zelltod ist ein zentraler Abwehrmechanismus nach Infektionen. Er eliminiert infizierte Zellen und begrenzt die Ausbreitung von Erregern, kann aber zugleich entzündungsfördernde Moleküle und gewebeschädigende Signale freisetzen. Textgrafik der ME/CFS Research Foundation: So kann eine anhaltende Immunaktivierung entstehen, die zu postviralen Erkrankungen beitragen könnte. Unklar ist bislang, wie diese Mechanismen chronische Entzündungen aufrechterhalten, wo sie stattfinden und wie sie zur Symptomatik von ME/CFS beitragen. Textgrafik der ME/CFS Research Foundation: Das Projekt kombiniert ein präklinisches in-vivo Modell mit genetischen Funktionsanalysen, Bildgebung und longitudinalen Blutproben. Erstmals werden Zelltod- und Entzündungssignaturen im gesamten Organismus kartiert. Unten Porträts der Projektleitung.
September 1, 2026 at 7:00 AM
mecfsresearch.bsky.social
Project 5 of our €2.4M funding round: A team in Heidelberg, Munich and Berlin investigates whether dysregulated cell death after viral infection drives chronic inflammation in ME/CFS. More: https://t.ly/-0gm2 #mecfsf="/hashtag/mecfsresearch" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#mecfsresearch #mecfs #postcovid #longcovid
Cover by the ME/CFS Research Foundation: €2.4M for 7 new research projects, Project 5: Cell Death Mediated Inflammation in Virus Induced ME/CFS. Funding period September 2026 to August 2028. Logos of the participating institutions, address projects.mecfs-research.org. Text graphic by the ME/CFS Research Foundation: Programmed cell death is a central defence mechanism after infections. It eliminates infected cells and limits the spread of pathogens, but it can also release pro inflammatory molecules and tissue damaging signals. Text graphic by the ME/CFS Research Foundation: This can lead to sustained immune activation that may contribute to postviral diseases. It remains unclear how these mechanisms sustain chronic inflammation, where they occur, and how they contribute to the symptoms of ME/CFS. Text graphic by the ME/CFS Research Foundation: The project combines a preclinical in vivo model with genetic functional analyses, imaging and longitudinal blood samples. Cell death and inflammation signatures are mapped across the whole organism for the first time. Below, the project leads.
September 1, 2026 at 7:05 AM
openmedf.bsky.social
In #MECFSresearch, understanding contraindications is important because of the vulnerability of the people living with the disease. For example, graded exercise therapy—once widely recommended—has been shown to be contraindicated for people with #MECFS, as it can trigger #PEM.
August 26, 2026 at 8:22 PM
mecfsresearch.bsky.social
Projekt 4 unserer 2,4-Mio.-€-Förderung: STRAT4PAIS untersucht mit Einzelzellanalysen, ob hinter postinfektiösen Erkrankungen bei Kindern verschiedene biologische Mechanismen stecken. Mehr Infos: https://t.ly/-MufV #mecfsf="/hashtag/mecfsresearch" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#mecfsresearch #mecfs #longcovid
Cover der ME/CFS Research Foundation: 2,4 Mio. € für 7 neue Forschungsprojekte, Projekt 4: STRAT4PAIS. Förderzeitraum September 2026 bis August 2028. Logos von Charité und DRFZ, Adresse projects.mecfs-research.org. Textgrafik der ME/CFS Research Foundation: Kinder und Jugendliche mit postinfektiösen Erkrankungen wie ME/CFS oder Long COVID werden meist behandelt, als hätten alle dieselbe Erkrankung. Hinter ähnlichen Beschwerden verbergen sich jedoch vermutlich unterschiedliche biologische Prozesse. Textgrafik der ME/CFS Research Foundation: Ausgangspunkt sind vier postinfektiöse Beschwerdebilder: Kreislauf- und Herzrhythmus-Reaktionen, anhaltende Immunreaktionen auf Viren, Autoimmunprozesse, Kopfschmerzen mit erhöhtem Hirndruck. Stecken dahinter vier biologische Mechanismen? Textgrafik der ME/CFS Research Foundation: Das Immunsystem wird per Einzelzellanalyse, Durchflusszytometrie und Protein-Multiplexanalyse untersucht, gemessen im stabilen Zustand, während PEM und bei fieberhaftem Infekt. Unten Porträts der vier Projektverantwortlichen.
August 25, 2026 at 7:00 AM
mecfsresearch.bsky.social
Project 4 of our €2.4M funding round: STRAT4PAIS uses single cell analysis to investigate whether distinct biological mechanisms underlie post-infectious illness in children and adolescents. More: https://t.ly/-0gm2 #mecfsf="/hashtag/mecfsresearch" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#mecfsresearch #mecfs #longcovid
Cover by the ME/CFS Research Foundation: €2.4M for 7 new research projects, Project 4: STRAT4PAIS. Funding period September 2026 to August 2028. Logos of Charité and DRFZ, address projects.mecfs-research.org. Text graphic by the ME/CFS Research Foundation: Children and adolescents with post-infectious illnesses such as ME/CFS or Long COVID are usually treated as though they all had the same condition. Yet different biological processes likely lie behind these similar symptoms. Text graphic by the ME/CFS Research Foundation: The starting point is four post-infectious symptom patterns: circulatory and heart rhythm responses, ongoing immune activity against viruses, autoimmune processes, headaches with raised intracranial pressure. Four mechanisms behind them? Text graphic by the ME/CFS Research Foundation: The immune system is analyzed via single cell transcriptomics, flow cytometry and protein multiplex analysis, measured in a stable state, during PEM and during a febrile infection. Below, portraits of the four project leads.
August 25, 2026 at 7:05 AM
openmedf.bsky.social
You asked OMF to prioritize post-exertional symptom worsening in CTN Lite trials. We heard you.

Your responses will go directly into trial design. This is not background research. (1/2)

#pwME #MECFS #MECFSResearch
Cover page of a CTN Lite Survey on post-exertional symptom worsening in ME/CFS patients, focusing on crashes and PEM.
August 20, 2026 at 8:10 PM
katjatrtilek.bsky.social
Meine Aktion ist nun beendet und nach Abzug aller Gebühren sind 1169,71 € zusammen gekommen! 🥳
Ich werde den Betrag auf 1200 € aufrunden und am Mittwoch (mein Einkaufstag mit Hilfe) an die
MECFSResearch Foundation überweisen. 😊
Vielen Dank nochmal an alle, die mitgeholfen haben! 💐
December 2, 2024 at 1:02 PM
actionforme.bsky.social
We'll continue to share updates as soon as we have them. Thank you to everyone who has supported DecodeME and taken part in the study. 💙

#MyalgicE #MECFS #pwME #DecodeME #MECFSResearch
July 13, 2026 at 8:52 AM
actionforme.bsky.social
Funding has also been secured for phase 2 of Sequence ME and Long Covid, enabling whole genome sequencing of 6,000 samples from the DecodeME cohort.

#MyalgicE #MECFS #pwME #DecodeME #MECFSResearch
July 13, 2026 at 8:52 AM
actionforme.bsky.social
But research progress hasn't stopped. DecodeME's preprint findings continue to contribute to our growing understanding of the biology of ME/CFS and are helping to inform future research.

#MyalgicE #MECFS #pwME #DecodeME #MECFSResearch
July 13, 2026 at 8:52 AM
actionforme.bsky.social
This means there will be a further delay before the team can complete the remaining work to submit DecodeME's initial genetic findings for peer review.

We know this is frustrating for everyone waiting on the results.

#MyalgicE #MECFS #pwME #DecodeME #MECFSResearch
July 13, 2026 at 8:52 AM
meassociation.org.uk
Learn more: https://meassociation.org.uk/research/ramsay-research-fund/ 

#MECFSResearch #LongCovidResearch #RamsayResearchFund
About the Ramsay Research Fund - The ME Association
The ME Association funds its medical research via the Ramsay […]
meassociation.org.uk
June 24, 2026 at 9:50 AM
meassociation.org.uk
Update: UK ME/CFS Biobank Steering Group

The Cure ME Steering Group meets quarterly to discuss matters relating to the UK ME/CFS Biobank,  and its most recent meeting was on 17 December.

Read more about this meeting: https://meassociation.org.uk/4wug 

#MECFS #CureME #UKMECFSBiobank #MECFSResearch
Update: UK ME/CFS Biobank Steering Group - The ME Association
The ME Association (MEA) has invested £1.095m in the UK […]
meassociation.org.uk
February 18, 2026 at 11:55 AM
meassociation.org.uk
Imperial College London: £1.1m awarded to investigate links between ME/CFS and Long Covid

"A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid."

https://tinyurl.com/mr3ybhwv

#MECFSResearch #MECFS #pwME #LongCovid
£1.1m awarded to investigate links between ME/CFS and Long Covid
A new landmark study funded by The ME Association will help scientists to uncover shared pathways between ME/CFS and Long Covid.
tinyurl.com
December 10, 2025 at 10:51 AM
meassociation.org.uk
David Tuller interviews Professor Chris Ponting about the new PRIME research project into ME/CFS, which is being conducted by the University of Edinburgh.

https://www.youtube.com/watch?app=desktop&v=1dgKMO0tPBw

#pwME #MECFS #MyalgicEncephalomyelitis #MECFSResearch
October 14, 2025 at 1:10 PM
meassociation.org.uk
New study finds that genetic differences in a blood protein may explain why people with ME experience severe crashes and brain fog after exertion.

https://tinyurl.com/467wec2a

#MECFS #MECFSResearch #MEResearch #PEM #MyalgicEncephalomyelitis
Haptoglobin phenotypes and structural variants associate with post-exertional malaise and cognitive dysfunction in myalgic encephalomyelitis - Journal of Translational Medicine
Background Myalgic encephalomyelitis (ME) is a chronic, multisystem illness characterized by post-exertional malaise (PEM) and cognitive dysfunction, yet the molecular mechanisms driving these hallmark symptoms remain unclear. This study investigated haptoglobin (Hp) as a potential biomarker of PEM severity and cognitive impairment in ME, with a focus on Hp phenotypes and structural proteoforms. Methods A longitudinal case–control study was conducted in 140 ME patients and 44 matched sedentary healthy controls. In the discovery phase, global plasma proteomic profiling was performed in 61 ME patients and 20 controls before and after a standardized, non-invasive stress protocol in order to induce PEM. Associations between Hp levels, phenotype, and cognitive performance were assessed. In the validation phase, plasma Hp concentrations and proteoform composition were analyzed in an independent cohort of 89 ME patients and 24 controls using high-performance liquid chromatography (HPLC). Results ME patients demonstrated a significant reduction in Hp levels following post-exertional stress. Lower baseline Hp concentrations were associated with impaired cognitive performance. Hp phenotypes were differentially associated with symptom burden, with the Hp2-1 phenotype enriched in ME and linked to greater PEM severity and cognitive deficits compared to Hp1-1 and Hp2-2. HPLC analysis revealed altered Hp proteoform profiles in the Hp2-1 subgroup, including increased high-mass tetrameric and pentameric forms and shorter retention times indicative of structural changes. In contrast, the Hp1-1 phenotype was associated with milder symptoms and greater cognitive resilience. Conclusions These findings suggest that Hp phenotype and proteoform structure modulate the physiological response to post-exertion in ME, offering insight into the molecular basis of PEM and its clinical heterogeneity. Hp may serve as a translational biomarker for patient stratification and a potential therapeutic target to mitigate oxidative stress and cognitive dysfunction in ME.
tinyurl.com
September 2, 2025 at 10:13 AM
meassociation.org.uk
Donate here: https://www.justgiving.com/page/kara-jane-sings-2  

#KaraJaneSings #InLimbo #MECFS #MECFSResearch
Kara Jane karajanesings.com
Help Kara Jane Spencer raise money to support ME Association
www.justgiving.com
August 27, 2025 at 10:55 AM
meassociation.org.uk
Calling #MECFS researchers: It’s your last chance to apply for free biosamples from the UK ME/CFS Biobank for your #MECFSResearch

Deadline: today at 23.59

How to apply: http://bit.ly/MECFS-samples

#pwME #MyalgicE
July 31, 2025 at 8:51 AM
meassociation.org.uk
The UK ME/CFS Biobank are offering free #MECFS samples to researchers until this Thursday 

Samples are provided extensive patient profiles and comprehensive datasets to facilitate the next breakthroughs in ME/CFS research

Details: http://bit.ly/MECFS-samples

#pwME #MECFSResearch #Research
IMAGE DESCRIPTION: Wording - The UK ME/CFS Biobank is offering free samples to support ME/CFS researchers. LSHTM and Cure ME Logos.
July 29, 2025 at 1:50 PM