Lmst

@eleanorrees #mecfs ?

Ich habe über 8h geschlafen und fühle mich trotzdem, als wenn ich eine Woche keinen Schlaf bekommen hätte. Und dann gleich auch noch Teamsitzung. Ich will nicht mehr. Zum Glück zu kaputt, um Amok zu laufen. #LongCovid #mecfs

R.I.P. 🖤
Am 11. Nov. strahlte RTL den nachfolgend erschütternden Bericht über die schwerst an #MECFS erkrankte Kathi aus. Wir alle mussten während des Berichts von Kathis Mutter weinen. Gestern ist Kathi von uns gegangen und es raubt uns die Luft zum Atmen, so unerträglich ist das unaufhaltsame Leid der Familien und das unsägliche Sterben der vielen jungen Menschen.

Unser aufrichtiges Beileid gilt der Familie in diesen wohl schwersten Stunden.

https://www.rtl.de/news/me-cfs-immer-mehr-erkrankte-aber-forschungsgelder-werden-gekuerzt-roberta-bieling-deckt-auf-id30006325.html

Systematic Examination of Gene Expression and Proteomic Evidence Across Tissues Supports the Role of Mitochondrial Dysregulation in ME/CFS

https://www.mdpi.com/1422-0067/27/4/1997

Screenshot from latest Science for ME weekly update

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

Systematic Examination of Gene Expression and Proteomic Evidence Across Tissues Supports the Role of Mitochondrial Dysregulation in ME/CFS — Gregory R. Keele et al.
"This study leveraged gene and protein expression data from the mapMECFS data repository and the DecodeME Genome-Wide Association Study (GWAS) to assess consistent gene signatures across studies."

From Canada

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

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2026.1745933/full

Screenshot from Science for ME update

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

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 — Shahbaz et al.
"our ﬁndings support a model in which altered mucosal immune–metabolic crosstalk, rather than intrinsic lymphocyte dysfunction, underlies the immune dysregulation observed in idiopathic ME/CFS and LC"
Article | Thread

Genießt den Zwischenfrühling, ihr Lieben!
.
.
.
#schreiben #mecfs #LongCovid #gedanken #philosophie

Text auf schwarzem Hintergrund: „Sonnenstrahlen streicheln die winterkalte Seele, wie die Weidenkätzchen, die bald die Vasen schmücken.
Lass die Sonne hinein, solange der neue Winter nicht da ist.“

“Norway’s Problematic Draft Guideline Combining Long-Term Fatigue and ME/CFS” by David Tuller

https://virology.ws/2026/03/02/trial-by-error-norways-problematic-draft-guideline-combining-long-term-fatigue-and-me-cfs/

Very disappointing 🙁

“The very real danger of deterioration as a result of too much activity/exercise/repeated PEM is not communicated in a meaningful way. Compare that to the section of medication, where side effects are clearly communicated!”

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

If you have ME/CFS, have you ever tried Hawthorn?

@mecfs

#Hawthorn #MECFS #POTS

Neue Studien mit #BC007 sollen noch 2026 beginnen - für #LongCovid und für #MECFS. Wie sehen die Pläne aus? Was tut sich in Erlangen? Und wie es eigentlich den Patienten der ersten Heilversuche? Meine ausführliche Recherche exklusiv @riffreporter: https://www.riffreporter.de/de/wissen/long-covid-mecfs-bc007-rovunaptabin-klinische-studien-erlangen-apta-berlin-cures

Bitte seid fair und teilt keine heruntergeladenen Beiträge in Gruppen, denn so ist unser Journalismus nicht finanzierbar. RiffReporter-Artikel gibt es:
- im Abo
- per Einzelkauf ohne jede Verpflichtung
- und weil sich das nicht jeder leisten kann gratis über viele öff. Bibliotheken

Ohne Bezahlmodelle ist unabhängiger Qualitätsjournalismus leider nicht machbar. Danke!

Bad science misled millions with chronic fatigue syndrome. Here's how we fought back.

A much-touted study recommended therapy and gradually increasing exercise for patients with chronic fatigue syndrome. Problem is, it was based on bad science.

https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/

#MECFS

I've listed to Ray Porter's brilliant narration of Andy Weir's Project Hall Mary all the way through several times, but I've listened to the beginning part many more, and I realized it's because I relate strongly to the main character's waking up from a years long coma. He's so exhausted he keeps drifting back to sleep, each time gaining more awareness of himself and his physical body, and surroundings. That's how I wake up every day. 1/2
#projecthailmary #chronicillness #mecfs #fatigue

Med Sci (Paris) "Covid long : une longue histoire"

French version:
https://www.medecinesciences.org/fr/articles/medsci/full_html/2026/02/medsci20250106/medsci20250106.html

Google English translation
https://www-medecinesciences-org.translate.goog/fr/articles/medsci/full_html/2026/02/medsci20250106/medsci20250106.html?_x_tr_sl=fr&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Screenshot from latest Science for ME weekly update

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

Med Sci (Paris) "Covid long : une longue histoire"
This French article by Ilana Löwy in medicine/science argues that Long Covid patients are confronted with an "epistemological injustice": a lack of recognition of their suffering. Because of an absence of objective signs of a recognized disease some health professionals incorrectly consider it to be a psychosomatic condition.

My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’

https://www.theguardian.com/society/2026/feb/24/my-maddening-battle-with-chronic-fatigue-syndrome-on-my-worst-days-it-feels-almost-demonic

Screenshot from latest Science for ME weekly update

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

Guardian My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’
Long read by Hermione Hoby describes her lengthy struggle with illness with remissions and relapses before getting an ME/CFS diagnosis, and her experiments with alternative treatments including brain retraining.
"I was wrong to think that this chronic condition demanded meaning be wrested from it. What it asks for is so much more banal – just the ongoing work of management and mitigation."

The Science for ME forum has posted the latest News in Brief (Feb. 23 - Mar. 1), a weekly summary of ME/CFS and Long Covid news plus upcoming events:

https://www.s4me.info/threads/news-in-brief-february-2026.48741/#post-677839

@mecfs @longcovid

#MEcfs #LongCovid #ChronicIllness #Science4ME

Science for ME
Where Science and Community Meet
www.s4me.info

3/‬
‪Read Lee’s main fundraising page here including information on his brother’s struggles with ME (he eventually became severe and passed away)‬

‪https://www.awalkforme.com/‬

‪#severeme #pwME‬ #severeme #CFS #MEcfs
@mecfs

Nach Baden-Württemberg folgt Rheinland-Pfalz.
Auch hier haben wir die Parteien zur politischen Stellungnahme zu ME/CFS, Post-COVID und Post-Vac aufgefordert.
Veröffentlichung der Antworten vor der Wahl.
📎 https://drive.google.com/file/d/1azr8YzxzeSwRqdcA6O_4tz0LUV8JXU4j/view?usp=drivesdk
#LandtagswahlRLP
#LandtagswahlBW
#MECFS
#PostCovid
#LongCovid
#PostVac
#Gesundheitspolitik
@ltrlp
@ltrlp
@dgbregionpfalz
@grueneltrlp
@PL_RLP

Progressively Widening Healthcare Costs in Long COVID Over Five Years — Jingya Cheng et al.

"The trajectory showed no inflection point suggesting stabilization, even at 60 months of follow-up. This distinction carries important implications for health system planning, as static cost projections based on short-term estimates will substantially underestimate the true economic burden."

#MECFS

https://www.medrxiv.org/content/10.64898/2026.02.24.26346985v1

#MeCFS

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