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Katharina 🦋🍋🍀 @katha1970.bsky.social · 14/11/2025

‼️Germany allocates 500 million Euros to research on #MECFS #LongCovid #PAIS from 2026-2036‼️ “We are opening a new chapter in researching these diseases.” "The National Decade Against Post-Infectious Diseases is coming." - German Federal Research Minister Dorothee Bär @dorobaer.bsky.social

bmftr.bund.de

Nationale Dekade gegen Postinfektiöse Erkrankungen: Insgesamt eine halbe Milliarde Euro für weitergehende Forschung - BMFTR

Nationale Dekade gegen Postinfektiöse Erkrankungen: 500 Millionen Euro für Forschung

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 10/11/2025

✨This November, your generosity can have triple the impact. Every dollar donated to OMF is matched 3x through December 2, turning one gift into three 🎁🎁🎁. Support OMF’s #MECFS & #LongCOVID research today and bring hope to millions. 🔗 www.omf.ngo?form=donate-....

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 10/11/2025

Another year has passed. Mila turned 23 last week. Over 1800 (!) days in darkness and silence with #verysevereME Please watch her video message below. Dear Mila, I so wish that one day you will walk out of that room and this nightmare will be over 🙏 Much love & hope to you and your family 💙

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 10/11/2025

Wieder ein Jahr vergangen. Mila ist letzte Woche 23 geworden. Über 1800 (!) Tage liegt sie schon im Dunkeln und in Stille mit #severeME Bitte schaut Euch ihre Videobotschaft an und helft mit, über ME/CFS aufzuklären. Liebe Mila, ich wünsche Dir so sehr ein baldiges Wunder! 💙🍀 #LearnAboutME

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 02/10/2025

Bitte helft mit, für #NichtGenesenKids bei der Wahl zum "MeinVerein des Jahres 2025" abzustimmen. NichtGenesenKids unterstützt Familien von an ME/CFS, LongCovid oder anderen PAIS erkrankten Kindern. Bis zum 7.11.25 kann jeden Tag erneut abgestimmt werden. web.meinverein.de/profile/68885

web.meinverein.de

MeinVerein des Jahres 2025 – Jetzt für uns abstimmen!

Die Top-50 Vereine mit den meisten Stimmen gewinnen den Community-Award!

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 02/10/2025

web.meinverein.de

MeinVerein des Jahres 2025 – Jetzt für uns abstimmen!

Die Top-50 Vereine mit den meisten Stimmen gewinnen den Community-Award!

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 02/04/2024

To all those who have literally “lost” their life due to suffering from a debilitating chronic illness: Here is a song I wrote for my family - “Is this really life?” Maybe it resonates with some of you, too. Feel free to share with whoever it may do well 💚 youtu.be/KR2p9NlWrqI?...

youtu.be

Is this really life ? - a song for chronically ill and their loved ones (HD)

This song is dedicated to all those suffering from complex chronic illnesses like ME/CFS, Long Covid, chronic pain, chronic migraines, other forms of debilit...

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 27/02/2024

This photo means a lot to me: This tree cannot stand without support, but that doesn’t keep it from being strong & beautiful. We may need a lot of support. But we are more than our broken bodies. We can still be happy and beautiful and make the best out of it. #NEISvoid

Beautiful green-leafed tree with a trunk in about 45 degrees, being held by supports

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 10/12/2024

Want to help patients with #MECFS? Please join researchers, MDs, politicians, patients + allies in the 🍋 #LemonChallengeMECFS aiming to raise awareness + donations for biomedical research. Why? >40 million affected, numbers doubled due to Covid triggering ME/CFS, no cure! lemonchallengemecfs.com

How to participate in the LemonChallengeMECFS: 1. record a video of yourself biting into a lemon, 2. nominate three other people to participate in the challenge, 3. if you can, donate to the ME/CFS Research Foundation

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 14/02/2025

ME patients have been waiting for decades for research and medical care. Who will be the hero to speak up first? (MEme by @katha1970.bsky.social ) #JohnVsJonVsME #GreatestMEdicalScandal @lastweektonight.com @thedailyshow.com @weeklyshowpodcast.bsky.social

MEme. A colored photo showing the very top corner of a bed with a pillow, next to it a night table with a lit small lamp and a black smartphone on the table. In bright turquoise letters it reads « M.E.: `Science said they`d call.` » and further below: « That was over 50 years ago. » At the bottom the reference to the campaign is made by the two hashtags #JohnVsJonVsME and #GreatestMEdicalScandal.

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 14/12/2024

Mila Hermisson turned 22 last month. She has been lying in the exact same position in a dark room with extremely severe ME for over 4 years. Over 1400 days! In darkness. In silence. In loneliness. With no prospect of medical help. Please watch Mila's short message to the world: youtu.be/hc9m6BJdvJY

youtu.be

Mila Hermisson's message to the world: "Learn About ME"

YouTube video by For chronically ill and their loved ones

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

„ME/CFS - eine Krankheit mit einer höheren Krankheitslast als Krebs“ Dr. Fridbjörn Sigurdsson von der Uniklinik Reykjavik auf der #InternationalMECFSConference in seinem Vortrag über die Akureyri Clinic, eine Spezialklinik für Patienten mit #MECFS und #LongCovid in Island

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

"Erste klinische Projekte zeigen 'Licht am Ende des Tunnels' für #MECFS. Aber es fehlt überall an Geldern. Klinische Forschung an 20-30 Medikamenten ist noch nicht finanziert. Auch deutschen Pharma-Startups fehlt die Finanzierung" Joerg Heydecke von @mecfsresearch.bsky.social am #MECFSSymposium2025

Chart aus einem Vortrag von Joerg Heydecke von der ME/CFS Research Foundation am ME/CFS Symposium 2025, Titel: "Long COVID und ME/CFS erzeugen viel Leid für Betroffene und extrem hohe Kosten für die Gesellschaft"

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

"In Deutschland stehen den jährlichen gesellschaftlichen Kosten von #MECFS und #LongCovid in Höhe von 63 Milliarden Euro 40 Mio. Euro öffentliche Forschungsgelder gegenüber (weniger als 0.06% der gesellschaftlichen Kosten)." Joerg Heydecke von @mecfsresearch.bsky.social am #MECFSSymposium2025

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

“It's incomprehensible to me why the pharmaceutical industry just stands on the sidelines and doesn't get involved in potential #MECFS therapies. There is potentially a lot of money to be made.” Prof. Carmen Scheibenbogen @scheibenbogen.bsky.social at the #MECFSSymposium2025

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

“I hope that in a few years we will have treatments that will bring improvement for a lot of #MECFS sufferers and hopefully even a cure for many.” Prof. Carmen Scheibenbogen @scheibenbogen.bsky.social at the #MECFSSymposium2025 🫶

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

“We know relatively precisely what we need to research for #MECFS, in some cases with the prospect of a cure. We're in the starting blocks. Some studies we wanted to conduct already years ago. We simply don't have the money.” Prof. Scheibenbogen @scheibenbogen.bsky.social at the #MECFSSymposium2025

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

“It can be predicted that 30,000 people will be newly diagnosed with #MECFS in Germany this year.” Joerg Heydecke from the ME/CFS Research Foundation @mecfsresearch.bsky.social at the #MECFSSymposium2025

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

“Long Covid and ME/CFS cost the German society more than all natural disasters in Germany of the past years combined - every year!” Joerg Heydecke from the ME/CFS Research Foundation @mecfsresearch.bsky.social at the #MECFSSymposium2025

Chart from a talk by Joerg Heydecke from the ME/CFS Research Foundation at the ME/CFS Symposium 2025, title: “Long Covid and ME/CFS cost [the German] society more than all natural disasters in Germany combined - every year!”

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

Dramatic numbers: “1.5 million people in Germany suffer from #LongCovid or pre-pandemic #MECFS. This costs society 63.1 billion euros per year (1.5% of the gross domestic product).” Joerg Heydecke from the ME/CFS Research Foundation @mecfsresearch.bsky.social at the #MECFSSymposium2025

Chart from a talk by Joerg Heydecke from the ME/CFS Research Foundation at the ME/CFS Symposium 2025: “1.5 million people in Germany suffer from #LongCovid or pre-pandemic #MECFS. This costs society 63.1 billion euros per year (1.5% of the gross domestic product).”

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

So many #MECFS research projects underway, clear abnormalities in blood tests, biopsies etc. Much work left to understand subgroups and find actual treatments. But with so many brilliant minds worldwide finally focusing on #MECFS, the #InternationalMECFSConference2025 gives much hope 🙏

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

"Es ist mir unverständlich, warum die Pharmaindustrie einfach nur an der Seite steht und sich bei potenziellen #MECFS Therapien nicht einbringt. Damit kann man unter Umständen auch viel Geld verdienen." Prof. Carmen Scheibenbogen @scheibenbogen.bsky.social auf dem #MECFSSymposium2025

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

"In ein paar Jahren wird es hoffentlich für eine ganze Menge #MECFS Betroffene Besserung und hoffentlich für viele auch Heilung geben." Prof. Carmen Scheibenbogen @scheibenbogen.bsky.social auf dem #MECFSSymposium2025 🫶

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

"Wir haben Konzepte für #MECFS und wissen relativ genau was wir tun müssten, zum Teil mit Aussicht auf Heilung. Wir stehen in den Startlöchern, manche Studien wollten wir schon vor Jahren machen - es fehlt schlicht das Geld." Prof Scheibenbogen @scheibenbogen.bsky.social auf dem #MECFSSymposium2025

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

"Es lässt sich prognostizieren, dass in diesem Jahr in Deutschland 30.000 Menschen neu #MECFS bekommen werden." Joerg Heydecke von der ME/CFS Research Foundation @mecfsresearch.bsky.social am #MECFSSymposium2025

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

"Long Covid und ME/CFS kosten die Gesellschaft mehr als alle Naturkatastrophen in Deutschland zusammengerechnet - und das jedes Jahr!" Joerg Heydecke von der ME/CFS Research Foundation @mecfsresearch.bsky.social am #MECFSSymposium2025

Chart eines Vortrags von Jörg Heydecke von der ME/CFS Research Foundation am #MECFSSymposium2025: "Long Covid und ME/CFS kosten die Gesellschaft mehr als alle Naturkatastrophen in Deutschland zusammengerechnet - und das jedes Jahr!"

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

Dramatische Zahlen: "1.5 Millionen Menschen in Deutschland leiden an Long Covid oder präpandemischem ME/CFS. Dies kostet die Gesellschaft 63.1 Mrd. Euro pro Jahr (1.5% des Bruttosozialprodukts)." Joerg Heydecke von der ME/CFS Research Foundation @mecfsresearch.bsky.social am #MECFSSymposium2025

Chart eines Vortrags von Joerg Heydecke von der ME/CFS Research Foundation: "1.5 Millionen Menschen in Deutschland leiden an Long Covid oder präpandemischem ME/CFS. Dies kostet die Gesellschaft 63.1 Mrd. Euro pro Jahr (1.5% des Bruttosozialprodukts)."

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

Jetzt live: Joerg Heydecke von der ME/CFS Research Foundation @mecfsresearch.bsky.social über die Prävalenz und die dramatischen gesellschaftlichen Kosten von Long Covid und ME/CFS #MECFSSymposium2025 Livestream: events.mecfs-research.org/de/events/sy...

events.mecfs-research.org

ME/CFS Research Foundation

ME/CFS Research Foundation is a non-profit organization dedicated to advancing research and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

One unambiguous result of the #InternationalMECFSConference2025: The evidence for pathophysiologic disease mechanisms in #MECFS is - once again - so overwhelming that no serious doctor or researcher can still claim otherwise.

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/05/2025

„This conference gives me so much hope. I am convinced that we are on the right track and that we will find treatments for #MECFS.“ Prof. Carmen Scheibenbogen @scheibenbogen.bsky.social summing up the #InternationalMECFSConference2025

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 12/05/2025

"There was so much great research on #MECFS presented today. It gives me a lot of hope that we are finally in the right gear now." Prof. Carmen Scheibenbogen @scheibenbogen.bsky.social at the #InternationalMECFSConference organized by Charité Berlin and @mecfsresearch.bsky.social

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 12/05/2025

Congratulations to @scheibenbogen.bsky.social Charité Berlin and @mecfsresearch.bsky.social for this fantastic first day of the #InternationalMECFSConference, packed with insightful research on #MECFS #LongCovid and #PAIS. Looking forward to part two tomorrow, which will focus on therapeutic trials

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 12/05/2025

"ME/CFS - a disease with a higher disease burden than cancer" Dr Fridbjörn Sigurdsson from the University Hospital Reykjavik, Iceland, at the #InternationalMECFSConference in his talk about the Akureyri Clinic, a specialized clinic for patients with #MECFS and #LongCovid.

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 12/05/2025

"With the enormous burden of disease of #MECFS and #LongCovid, reducing symptoms can make a huge difference for patients. So it is really worth trying symptomatic treatments." Dr. Michael Stingl @neurostingl.bsky.social at the #InternationalMECFSConference

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 12/05/2025

"If a patient has Post-exertional Malaise that completely changes the picture of what you can try for treatments. You also have to look for rolling PEM." Dr. Michael Stingl @neurostingl.bsky.social at the #InternationalMECFSConference

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 12/05/2025

A firework of diagnostic and treatment options for doctors dealing with #MECFS and #LongCovid patients presented by @neurostingl.bsky.social at the #InternationalMECFSConference. Every doctor facing these patients should watch Dr. Stingl's hands-on talk when available on replay. Invaluable.

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 12/05/2025

"Unfortunately, at the moment even with optimal therapy we can only alleviate symptoms, but cannot influence the disease. Therefore, therapies targeting the disease are urgently needed." #MECFS Prof. Carmen @scheibenbogen.bsky.social at the #InternationalMECFSConference2025

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Carmen Scheibenbogen @scheibenbogen.bsky.social · 02/05/2025

One focus of the Int. MECFS Conference 12./13.5. at Charité will be Clinical trials targeting autoantibodies and immune dysregulation including CD38, CD20 and C19 antibodies, immunoadsorption, IVIG, and rapamycin. You can join the event via free livestream events.mecfs-research.org/en/events/co...

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Carmen Scheibenbogen @scheibenbogen.bsky.social · 04/05/2025

David Putrino will speak at the International MECFS Conference 12./13.5. in Berlin about: „The pandemic: What have we learned about post-acute infection syndromes“ and „Low-dose Rapamycin trial in PCS“ You can join the event through a free livestream. events.mecfs-research.org/en/events/co...

events.mecfs-research.org

ME/CFS Research Foundation

ME/CFS Research Foundation is a non-profit organization dedicated to advancing research and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 12/05/2025

Reminder: On May 12-13, the “International ME/CFS Conference 2025” will take place. Speakers include Carmen Scheibenbogen, David Putrino, Michael Peluso, Michael Stingl, Klaus Wirth and many more. Registration for the livestream is still possible at events.mecfs-research.org/de/events

events.mecfs-research.org

ME/CFS Research Foundation

ME/CFS Research Foundation is a non-profit organization dedicated to advancing research and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 14/02/2025

Please help amplify the amazing #JohnVsJonVsME Valentine’s campaign! Will today’s playful MEmes finally touch @lastweektonight.com and @thedailyshow.com enough to finally cover the #GreatestMEdicalScandal? CN: bright lights/rapid scene changes youtu.be/5YeZH9RLMJk?... @johnvsjonvsme.bsky.social

youtu.be

John Vs Jon Vs ME Trailer (Valentine’s Edition)

YouTube video by For chronically ill and their loved ones

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/11/2024

#UniteToFight2024 The talk by Dr. Amy Proal, President of the PolyBio Research Foundation, on 'Pathogen persistence in #LongCovid & #MECFS' is now available with 🇬🇧 subtitles: youtu.be/LRfs7saMFME?... You can use YouTube's auto-translation for subtitles in many other languages.

youtu.be

Dr. Amy Proal: Pathogen Persistence in Long Covid & ME/CFS (Day 1, Block 4)

YouTube video by UniteToFight

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/11/2024

#UniteToFight2024 The talk by Dr. Rae Duncan, consultant cardiologist and #LongCovid researcher, on 'Long Covid Phenotyping as an aid to successful treatments' is now available with 🇬🇧 subtitles: youtu.be/7R9BJJsm0e4?... @sunny-rae1.bsky.social

youtu.be

Dr. Rae Duncan: Long Covid Phenotyping as an aid to successful treatments (Day 2, Block 7)

YouTube video by UniteToFight

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 13/11/2024

#UniteToFight2024 The moving talk by Oonagh Cousins on her #LongCovid experience as a former top athlete is now available with 🇬🇧 subtitles: youtu.be/5PA2qxEfeq0 You can use YouTube's auto-translation for subtitles in many other languages.

youtu.be

Oonagh Cousins: A Former Athlete’s Experience with Long Covid (Day 1, Block 3)

YouTube video by UniteToFight

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