Top Tweets for #MeCfS
🧵
Physician's Weekly: IBS affects over a third of people with ME/CFS
https://t.co/y2XH42N78v
#IrritableBowelSyndrome #MEcfs
1/
Some days this illness feels suffocating.
I’m usually really positive, I look for all the tiny goods in my days, there are always goods, and I always find them.
But sometimes the realisation of how different life is and how cruel this illness is hits me.
Here’s what I mean:
@Naomi_D_Harvey @AutonomicGC There is likely a huge market for a #MECFS test.
Like everything in ME/CFS it is really important to question everything. What definition did they use? On what data was the AI/machine trained?What are the biases baked in. Is the article hype or cautious?
And that is very difficult to explain to anyone healthy, or even most people with other illnesses.
It is restrictive beyond what I can ever explain, and frustrating, and heartbreaking and really sodding unfair. It’s frightening.
And you take a deep breath and continue.
#MECFS
@percidae_public #MECFS ist keine kurze Grippe, es ist ein Marathon. Im Laufe eines Jahres nach der REHA, wenn Antrag auf Pflegegrad, Hilfsmittel, verschiedene Arztbesuche + Arzneien von der KK uebernommen werden, Krankengeld etc. dann sieht man es ja wohl.
I will end the day without regret. I did my best. I deserve my rest. #recovered #anxiety #eatingdisorder #NeverGiveUp #AlwaysKeepFighting #fibromyalgia #MECFS #Erythromelalgia
8/8 The study, if you want it in your own hands: https://t.co/o6GlnXbD3W
Follow @Covid_institute.
#LongCOVID #MedicalGaslighting #MECFS
How do you get out of a crash when your resting heart rate is elevated, and the elevated heart rate itself seems to be causing rolling PEM? Feels like a vicious cycle. Any tips or experiences would be appreciated. #MECFS #LongCOVID
Ihr Artikel für die SCHMERZ NACHRICHTEN 2/26 online auf unserer internationalen Datenbank SpringerLink zur Verfügung :
https://t.co/DOO9kYzG6n
Ihr Beitrag ist gerade mal 1 Monat online und verzeichnet schon über 3.300 Zugriffe!
“Pocket guide to potential ME/CFS diagnostic biomarkers. If anyone says, “There is no ME/CFS diagnostic test.” You can reply, “Yes, that’s correct, but there are 9 ME/CFS diagnostic blood tests in various stages of development” by @MECFSNanoneedle https://t.co/Xs6tduYldC
Good day my dear mutuals 💝I wish you all a very fine day, but a special greeting for my #MEcfs crew today as we enjoy the cooler weather but Brace! Brace! Brace! for the Autumn slide. It won't surprise me this year!
I woke up this morning with a clear image of my life without #mecfs. All the beauty that never was. Not the achievements but the experiences and the doing. There is not a single aspect of life that ME/CFS has not compromised or ruined. Even advocacy - So much I cannot share.
@manruipa We have great respect for your threads on #LongCOVID & #MECFS that continue to elaborate on recent findings of health damage due to viral persistence from "seasonal HCoVs" and SARS, beyond the acute phase. Keep up the great work.
https://t.co/glgyLmPcTl
🔴 What if one of the most overlooked forms of “anti-aging” had little to do with rejuvenating old cells?
We spend enormous amounts of money trying to:
→ increase NAD+
→ eliminate senescent cells
→ improve mitochondria
→ reduce oxidative stress
→ suppress inflammation
But perhaps we are overlooking something much more basic:
keeping persistent pathogens under control.
(1/77) 🧵
“It’s really hard to deal with knowing that people don’t believe that you’re ill.”
Kate Stanforth talking about living with ME and the disbelief she faced from both the public and doctors in 2013. #MECFS
⚠️...und wenn genügend Mediziner das #MEcfs Fachkapitel bei Springer Nature lesen, kommen die menschenverachtenden Autoren ihrem Ziel näher...
☠️...einen zum Suizid treiben...
Ein 2026 bei Springer Nature veröffentlichtes Fachkapitel zu ME/CFS enthält gravierende fachliche und redaktionelle Mängel.
ME/CFS wird diagnostisch unsauber mit anderen Krankheitsbildern vermengt, Schutzverhalten bei PEM teilweise psychopathologisiert und aktuelle Evidenz zu Belastungsintoleranz und Patientensicherheit unzureichend berücksichtigt.
Zusätzlich findet sich in einer Quellenangabe tatsächlich:
utm_source=https://t.co/K9ct1P4K2O
Wir haben das Kapitel deshalb wissenschaftlich Punkt für Punkt geprüft und Springer Nature, Herausgeber und Autor:innen formell zur Stellungnahme und Korrektur aufgefordert.
Originalquelle bei Springer Nature:
https://t.co/TPiFpPacMr
Unsere vollständige Beanstandung: https://t.co/ddPR0uku4C
Lesen. Vergleichen. Einordnen.
@AlexaAlicaKupf @SpringerNature
The vile comments and mockery directed at #LongCOVID & #MECFS scientists are not just directed at researchers & physicians, but at those who are suffering and disabled. A callous and sad lack of empathy in the #LongCOVID community. #WearN95
(5/9)
The strange thing is that I wasn’t even at the conference that started this whole discussion.
I simply gave my view on something I thought was a complicated issue.
And even so, I’ve seen how quickly a difference of opinion can turn into comments about who you supposedly are, what you supposedly think, or what your supposed intentions are.
Often without anyone asking first.
That is probably what has surprised me the most.
With ME/CFS, Phoebe reached out to tell us that she used her Health Tracker and Health Profile to tell her Doctor how her nausea has been going with her new medication changes.
Thank you Feebee, for letting us share.🧡
#hialert #healthprofile #healthtracker #nausea #mecfs
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