Yuno

[Yuno @gilasitges]

#MECFSimBundestag Ich bin 46 und liege seit 5 Jahren in meinem alten Kinderzimmerbett. Gepflegt von meiner 78- jährigen Mutter. Keine Medizinische Versorgung. Schuhe Ende 2017 gekauft, nie getragen.#NichtGenesen

[Christoph Ströck @cstroeckw]

💔

[Yuno @gilasitges]

@CK65375 💔

[Herbert Renz-Polster @RenzPolster]

I wasn´t aware that #Desloratadine may also have „deeper“ immune effects:
https://t.co/LEr9jihbV2

So I asked #OpenEvidence – and it seems there may be something to it:
https://t.co/IWICoXTnex

[Anna Reiser @anna_reise87030]

@CK65375 25 Jahr jung. Unfassbar. R.i.p, Kim. Es tut mir so Leid, du hättest etwas Besseres verdient 💔🖤💫

[(𝕀ℕAktivistin) in Ruhe 👟💙 @Ino_ue_1]

@CK65375

[Christina Koch @CK65375]

https://t.co/ezNhbgMhFw

[Christoph Ströck @cstroeckw]

When four former Austrian Health Ministers feel compelled to hold a press conference, policymakers should pay attention.

On June 18, they will back a petition by @oeg_mecfs calling for patients and experts to be meaningfully involved in Austria's PAIS Action Plan for ME/CFS and related diseases.

Great work by WE&ME and all involved in making this happen.

[Herbert Renz-Polster @RenzPolster]

probably a good idea for #MECFS research, too

https://t.co/e2J5uYB837

[Manuel Ruiz @manruipa]

⚠️After seeing the response from patients, clinicians and scientists, I think this needs to be said clearly:

Re-promoting an article that has caused so much harm to the Long COVID community is not brave journalism.

It is irresponsible.

This article did not simply “open a difficult conversation.” It amplified a deeply damaging frame: that maybe patients are rejecting the uncomfortable truth that CBT, exercise and “mind-body” approaches are the way forward.

But when you present a complex post-infectious disease through that lens, without properly separating psychological support from biological treatment, you are not helping patients.

You are making their lives harder.

These narratives do not stay inside an article.

They reach families.
They reach employers.
They reach disability assessors.
They reach doctors who already know very little about Long COVID.
They reach people who are looking for an excuse to say: “maybe it is just anxiety,” “maybe you are afraid of exercise,” “maybe you are keeping yourself sick.”

That has consequences.

Social consequences.
Medical consequences.
Workplace consequences.
Psychological consequences.

Patients with Long COVID are already fighting disbelief, lack of biomarkers in routine care, lack of approved treatments, disability, isolation and medical neglect.

Using their suffering to generate clicks while repackaging old psychosomatic narratives in modern “mind-body” language is not courageous.

It is cruel.

The problem is not talking about the nervous system.

The problem is turning nervous system involvement into a story about beliefs, fear, trauma or patients refusing to accept recovery.

The problem is using recovery anecdotes as if they establish causality.

The problem is ignoring those who worsened with exercise.

The problem is presenting PEM caution as dogma.

The problem is being much more generous with “brain retraining” narratives than with the biomedical evidence already showing immune, vascular, autonomic, metabolic and muscular abnormalities in Long COVID.

If a journalist wants to write about Long COVID, they have a responsibility to understand the history of harm done to post-infectious patients.

Because this is not new.

ME/CFS patients have lived this for decades.

“Unexplained” became “psychological.”
“Normal routine tests” became “nothing is wrong.”
“Supportive care” became “cure.”
“Exercise” became “rehabilitation,” even when patients were crashing.

And now the same mistake is being repeated with Long COVID.

Patients are not angry because they reject science.

They are angry because they recognize the pattern.

They have seen what happens when medicine turns biology it cannot yet measure into psychology.

So no, this is not “a way forward.”

A way forward would be stratification, biomarkers, mechanistic trials, antivirals, immunology, dysautonomia research, PEM-safe protocols, autoantibody studies, vascular biology, tissue persistence, metabolism and serious clinical phenotyping.

A way forward would be listening to all patients, including those harmed by exercise and psychologizing narratives.

A way forward would be scientific humility: admitting what we still do not know without turning unexplained biology into psychology.

Not click-driven repetition of the same ideas that have already harmed post-infectious patients for decades.

[Chris 🏳️‍🌈 @ungenesbar]

That‘s so heart-breaking. How can society, how can anyone accept this state Stefan is living and suffering in?

I am speechless. Praying for you.

[Angelika @XAngelikaMarieX]

Bleibt das in Deutschland ein Traum oder wird es irgendwann Realität? Hier wird eher hingenommen, dass schwer Kranke sich bei der DGHS anmelden und begleiteten Suizid begehen. Traurig und beschämend. 💔😢

[Corinna Geiger @DrCorinnaGeiger]

Neue Studie (Boston University, 2026): hEDS ist kein Ein-Gen-Defekt. KI-Genomanalyse zeigt Varianten in 3 Systemen – Kollagen, Immunsystem (HLA bei ~75 %!) & Mitochondrien. Das erklärt, warum hEDS so oft mit MCAS & Dysautonomie auftritt. #hEDS #MECFS #MCAS

[Christian Haberhauer @c_haberhauer]

ME/CFS sei die "letzten 30, 40 Jahre so gut wie nicht vernünftig erforscht worden" - "Weil die Annahme vorgeherrscht hat, dass das alles psychosomatisch ist".
Aktuelle Forschungssummen nur "Tropfen auf den heißen Stein", sagt @neurostingl bei @leingruber

https://t.co/EO2Myl88cP

[Adam @ABrokenBattery]

“People with ME have sadly had to endure far too much disbelief and delay.”

Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @Invest_In_ME 2026 International ME Conference #IIMEC18.

[Memorial ME Victims R.I.P. @MemorialME]

🕯️#RIP Mirjam Knapp
* 08.12.1999 - † 28.04.2026

Mirjam wurde mit 14 zwangseingewiesen, auf grausamste Weise aktiviert u. misshandelt, nur durch die Hilfe von Dr. Speight durfte sie nach 20 Mon. wieder heim.
Sie starb an #VerySevereME.🖤

In Gedanken bei ihrer Familie.💔

[Joerg Heydecke @JoergHeydecke]

Videos from the International ME/CFS Conference 2026 are now going online, starting with @C_Scheibenbogen’s summary of treatment studies presented. All talks have text summaries in 🇩🇪 & 🇬🇧 (below the videos). 🙏 to our Science Team! Enjoy!

[Adam @ABrokenBattery]

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.

[NichtGenesen @NichtGenesen]

Groß angekündigte Aufklärungskampagne zu ME/CFS.
Ja wo denn?
2026 kennen viele Ärzte noch nicht mal die fünf Buchstaben.
Hauptsache, die Politik erzählt seit Jahren, man nehme das Thema jetzt ernst.
Schwerkranke Menschen liegen isoliert im Dunkeln — und Deutschland schafft es nicht einmal, medizinisches Basiswissen flächendeckend zu vermitteln. Eine Familie, die sich selbst durch Diagnostik und Hilfe kämpfen muss berichtet über ihre schwerstbetroffene Tochter. Und sie ist absolut kein Einzelfall. ⬇️
https://t.co/OGyYp71UTN
@bmftr_bund @bioeg_de

[Christoph Ströck @cstroeckw]

Huge thanks to 12ME Belgium for their continuous work for people with ME/CFS.

Since 2018, they have raised more than €100,000, an incredible achievement driven by patients and advocates who truly care.

They have now donated €10,000 to WE&ME, where the money goes directly into biomedical ME/CFS research.

Deeply grateful for everything they do. Please check out their website, I put link in the comments.

[Initiative #LiegendDemo, ME/CFS @LiegendDemo]

Anders gesagt gibt es fast keine großen Medien, die NICHT über
die LiegendDemos berichtet haben. 🤯💪

Sagt es gerne weiter und feiert so doll es eben geht. 🎉
Danke an alle, die in welcher Form auch immer dazu beigetragen haben. Jeder von euch war wichtig! 🥳🪇