Der Video-Call des VdK Nord und der Regionalgruppe Hamburg des Fatigatio zum Sozialrecht bei ME/CFS ("ME/CFS: Was steht mir zu?") ist jetzt online verfügbar.
https://t.co/TvQLostaso
The presentations from the 2026 ME/CFS Conference will soon be available to watch via the @MECFSResearch Foundation @JoergHeydecke.
Already available with presentation slides in English: a brief summary of the treatment studies.
Die Vorträge der ME/CFS Konferenz 2026 demnächst zum Nachhören bei der @MECFSResearch Foundation @JoergHeydecke.
Bereits verfügbar eine kurze Zusammenfassung der Therapiestudien.
Highlights from recent German TV that looked at brain retraining for #MECFS.
A doctor with #MECFS says the programme made her feel she just had to keep trying harder. She eventually suffered a severe crash.
She is “angry” and says that these programmes are endangering people.
Hi Hannah,
Your comment is not just wrong. It is deeply disrespectful and genuinely inhumane.
Please, before speaking with such certainty, look at the recent medical literature on ME/CFS. This disease is not psychological. It is a serious, multi-system biological illness involving the immune system, nervous system, autonomic function, metabolism, circulation, and energy production.
I’m university educated. I was a tech founder and CEO. I had a beautiful girlfriend, a full life, ambition, independence, and every reason to want to be out in the world.
I snowboarded, fly-fished, hiked, travelled the world, worked relentlessly, and lived in the mountains because being outdoors was one of the great loves of my life. From my bedroom window, I can still see the peaks I would give almost anything to hike again.
I would cut off my arms and legs if it meant having the physical capacity to live normally again.
I now have very severe ME/CFS with extreme physical, cognitive, and sensory disability.
I lost my work. I lost my partner of seven years. I lost my ability to have sex. My ability to speak is greatly diminished. I cannot tolerate light, sound, television, podcasts, reading, touch, human presence, or even emotional expression. Crying, laughing, or pushing slightly too hard can leave me with severe physical symptom exacerbation for days. Sometimes, if I push too far, the worsening is permanent.
This is not anxiety. This is not deconditioning. This is not a lack of motivation. This is not a belief system.
Yes, the CNS and autonomic nervous system are profoundly dysfunctional, but that is only part of the picture. The depth of biological disruption in ME/CFS is staggering.
The suffering is almost impossible to describe. It is not tiredness. It is not burnout. It is a state of being trapped inside a body that punishes basic human activity.
Words like yours are not harmless. They contribute to the stigma that leaves severely ill people dismissed, neglected, and abandoned while they are already living through something close to hell.
Please open your eyes. Read the science. Listen to patients. This disease is real, and the people suffering from it deserve basic human respect.
The opinion you have is outdated and lacking any serious scientific basis.
Please, just for a moment, imagine that you might be wrong.
Imagine that the people living with this disease are not lazy, anxious, deconditioned, or mistaken about their own bodies. Imagine that they are describing a real biological illness that medicine has failed to properly understand for decades.
Because that is the reality.
Die „Holy Seven“ der ME/CFS-Pathophysiologie, die Kliniker immer noch lieber in die Psycho-Ecke schieben, statt Fachliteratur zu lesen:
1️⃣ POTS / Dysautonomie
➡️ „Nur eine Angststörung“ (Ignoriert: Stehende Tachykardie, Fehlregulation des vegetativen Nervensystems).
⬇️
What a tragedy.
I didn’t know Mirjam personally and only just learned of her story on Facebook.
https://t.co/nqcqDOrkC4
Rest in peace, Mirjam.
My deepest condolences to her family and all who knew and loved her.
#MEcfs#severeME
Herr Professor Erbguth, befand ja auch, dass die Konfrontation mit einer jungen Frau, die in einem verdunkelten Zimmer mit Sonnenbrille und Hörschutz liegt für ihn doch "einen Grad der Bizzarheit"hätte, das könne er als Neurologe und Psychiater nicht nachvollziehen. Eine dermaßen schamlose, übergriffigkeiit gegenüber ein Schwerst erkrankten Menschen kann ich aus ärztlicher Sicht nicht nachvollziehen
Check out these talk summaries from our recent PolyBio Symposium👇
Highlights include that four groups — Tim Henrich (UCSF), Marcus Buggert (Karolinska), Nicolas Huot (Institut Pasteur), and Esen Sefik (Yale) — presented different lines of evidence (human gut biopsies, non-human primate models, humanized mice) all pointing to the same conclusion: SARS-CoV-2 persists in #LongCovid gut tissue and adjacent lymphoid structures, and that persistence drives ongoing immune dysregulation.
Es ist leider gefühlt auch die Debatte im Real Life in a nutshell.
Es sind hier so viele meinungsstarke Bagatellisierer unterwegs, die offenbar noch nie tiefer in die Materie ME/CFS eingetaucht sind.
Menschen mit ME/CFS und Long Covid warten oft viel zu lange, bis ihnen jemand richtig zuhört.
Wir bauen unser Team in der Long Covid Online Klinik aus und suchen Ärzt:innen, die ME/CFS, POTS und MCAS ernst nehmen – die sich Zeit nehmen, gern in die Komplexität gehen und Empathie