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katha1970.bsky.social
Katharina 🦋🍋🍀
@katha1970.bsky.social
2.2K followers 4.3K following 740 posts
Here for research and info on #Migraines #MECFS #LongCovid #MCAS #MCS #ChronicPain #MetabolicHealth #Neuroscience #Psychology #MedicalGaslighting, posts German & English, hobby songwriter
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katha1970.bsky.social
"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"
May 13, 2025 at 10:38 PM
katha1970.bsky.social
“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!”
May 13, 2025 at 9:48 PM
katha1970.bsky.social
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).”
May 13, 2025 at 9:13 PM
katha1970.bsky.social
"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!"
May 13, 2025 at 4:15 PM
katha1970.bsky.social
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)."
May 13, 2025 at 3:47 PM
katha1970.bsky.social
I would assume so, as it says on the website that there will be an online livestream and that the videos will be made available afterwards. But Chris @ungenesbar.bsky.social from the ME/CFS Research Foundation would be best to ask for more details.
Screenshot from the website if the ME/CFS research foundation stating there will be an online livestream, online participation requires a registration and is free of charge, all presentations will be held in English. Screenshot: “Videos of presentations will be made available on our website after the conference.”
March 15, 2025 at 3:04 AM
katha1970.bsky.social
#RIPFaraz

Erst Judith, jetzt Faraz. Mein Herz ist schwer. Ruhe in Frieden, lieber Faraz! Mögest Du nun endlich frei von Schmerzen und in Frieden sein. Den Angehörigen meine tief empfundene Anteilnahme! #MEcfs

🖤🕯️🕊️

x.com/derhorizonta...
Blaue Rose als Symbol für den Tod eines an #MECFS erkrankten Menschen
February 24, 2025 at 5:50 PM
katha1970.bsky.social
Absolutely! Just wanted to pass the praise on to those that have earned it 😊 Thanks so much for amplifying the #LemonChallengeMECFS across the pond 🙏 And who knows, maybe one of the Jo(h)ns will join the good cause? @lastweektonight.com @thedailyshow.com
A photo of three lemons and a few green leaves on a blue plate and one and a half lemons set next to it on wooden tiles. Yellow outline of the entire image. In the top left corner it reads “Hey John & Jon,”. In the bottom left corner: “this Valentine’s Day, will you bite into a lemon for ME?”. In the top right corner the hashtags: #JohnVsJonVsME #GreatestMEdicalScandal #LemonChallengeMECFS. In the bottom right corner a yellow oval form with green writing “Valentine’s Edition”. MEme by @katha1970.bsky.Social
February 22, 2025 at 3:28 AM
katha1970.bsky.social
Valentine’s Edition of #JohnVsJonVsME - the playful laughtivism campaign initiated by ME patients.

Please follow @johnvsjonvsme.bsky.social and amplify here, on X and Instagram.

Let’s hope @lastweektonight.com and @thedailyshow.com will open their hearts to help the millions missing worldwide 🙏❤️
A rectangle with a purple outline, filled with a light rose background with medium-sized red hearts with black arrows through them. In the middle a white box with purple outline reading „Cupid hit me with his arrow… Just kidding, that was ME. Been struck down for ages.“ in black letters. Below that in the box the two hashtags #JohnVsJonVsME and #GreatestMEdicalScandal. In the left corner of the white box a black silhouette of a figure symbolizing Cupid. In the right hand corner of the MEme a purple box reading „Valentine‘s Edition“.
February 14, 2025 at 7:31 PM
katha1970.bsky.social
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.
February 14, 2025 at 6:50 PM
katha1970.bsky.social
Hey John Oliver and Jon Stewart, have you heard of the #LemonChallengeMECFS ? Many have already joined. Please help raise awareness for the #GreatestMEdicalScandal 🫶🍋

@lastweektonight.com @thedailyshow.com
@johnvsjonvsme.bsky.social

#JohnVsJonVsME
(MEme c/o @katha1970.bsky.social )
A photo of three lemons and a few green leaves on a blue plate and one and a half lemons set next to it on wooden tiles. Yellow outline of the entire image. In the top left corner it reads “Hey John & Jon,”. In the bottom left corner: “this Valentine’s Day, will you bite into a lemon for ME?”. In the top right corner the hashtags: #JohnVsJonVsME #GreatestMEdicalScandal #LemonChallengeMECFS. I the bottom right corner a yellow oval form with green writing “Valentine’s Edition”.
February 14, 2025 at 11:07 AM
katha1970.bsky.social
Happy Valentine, John Oliver and Jon Stewart ! Please (un)cover the #GreatestMEdicalScandal ❤️

MEme c/o @katha1970.bsky.social

@lastweektonight1.bsky.social
@thedailyshow.com
@johnvsjonvsme.bsky.social
#JohnVsJonVsME
A rectangled visual of bright red roses. Across the picture in 4 lines it reads in white letters “Who will be our Valentine and help uncover the #GreatestMEdicalScandal ?“. Left and right of „Who will be our Valentine“ are cut out images of Jon Stewart and John Oliver. In the bottom right corner the hashtag #JohnVsJonVSME.
February 14, 2025 at 10:24 AM
katha1970.bsky.social
Danke fürs Teilen! Die Frist bis 2.2.25 gilt nur für wahlberechtigte Personen, die nicht mehr in Deutschland gemeldet sind. Ansonsten Briefwahl-Antrag bis 21.2. 15h, aber u.U. sogar noch bis zum Wahltag möglich.

Bitte wählt alle. Es kommt auf jede Stimme an!

bundeswahlleiterin.de/bundestagswa...
Screenshot von der Website der Bundesregierung zur Bundestagswahl. Letzter Tag für die Beantragung der Briefwahl bei der Gemeinde: 21.02.2025, 15 Uhr
February 2, 2025 at 11:41 PM
katha1970.bsky.social
‼️Important opportunity for #LongCovid patients & MDs‼️

Please share your experiences with medications and supplements tried for Long Covid in the FDA/CureID "Long Covid Treatment Survey" until Jan 31st.

Results may influence clinical trials!

Link: cure.ncats.io/pilot-overvi..., then click "share".
Screenshot of a Post from Hannah Davis on X asking Long Covid patients, care partners and healthcare providers to share experiences with Long Covid treatment attempts with Cure ID for data analyses. Screenshot of a Post from Hannah Davis on X reminding Long Covid patients, care partners and healthcare providers to share experiences with Long Covid treatment attempts with Cure ID for data analyses, specifying that the results will go right into the hands of people at the FDA and elsewhere and will be used to help inform clinical trial selections and guidelines.
January 18, 2025 at 11:04 PM
katha1970.bsky.social
‼️Wichtige Chance für Long Covid Patienten & behandelnde Ärzte‼️

Bis zum 31.01. können gute & schlechte Erfahrungen mit Long Covid Behandlungsversuchen in einem FDA/CureID Survey eingegeben werden.

Die Ergebnisse könnten klinische Studien beeinflussen.

cure.ncats.io/pilot-overvi..., dann "Share"
Screenshot eines Post von Hannah Davis auf X mit Erinnerung an Patienten und behandelnde Ärzte, die Umfrage von der FDA und Cure ID zu Long Covid Behandlungsversuchen auszufüllen. Frist: 31.01.2025. Screenshot eines Post von Hannah Davis auf X mit Erinnerung an das Ausfüllen der Umfrage von Cure ID zu Long Covid Behandlungsversuchen - sowohl hilfreichen als auch nicht hilfreichen.
January 18, 2025 at 4:32 PM
katha1970.bsky.social
‼️ Important opportunity for #LongCovid patients & healthcare providers ‼️

Please share your experiences with Long Covid treatment attempts (good or bad) by filling out the FDA/Cure ID treatment survey until Jan 31st at cure.ncats.io/create/case-... @cureid.bsky.social @ahandvanish.bsky.social
Image of a Post from Hannah Davis on X asking Long Covid patients, care partners and healthcare providers to share experiences with Long Covid treatment attempts with Cure ID for data analyses. Image of a Post from Hannah Davis on X reminding Long Covid patients, care partners and healthcare providers to share experiences with Long Covid treatment attempts with Cure ID for data analyses, specifying that the results will go right into the hands of people at the FDA and elsewhere and will be used to help inform clinical trial selections and guidelines.
January 18, 2025 at 2:41 AM
katha1970.bsky.social
Yes 😂
Screenshot of a post that was mistakenly labeled as adult content by Bluesky Moderation Service (showing a giant pink stress ball in the form of a brain)
January 7, 2025 at 4:13 PM
katha1970.bsky.social
Mein Herz ist heute schwer. #Judith's Tod nach jahrelangen unermesslichen Qualen. #Mila und unzählige andere, die nur noch im Dunkeln liegen können. Über 40 Millionen #MECFS Betroffene ohne ärztliche Hilfe. Immer mit dem Risiko, den Zustand durch kleinste Belastung weiter zu verschlechtern.
#MEkills
blaue Rose vor dunklem Hintergrund
December 13, 2024 at 12:58 AM
katha1970.bsky.social
My heart is heavy today. #Judith's death after years of tremendous suffering. #Mila and countless others who have been lying in the dark for years. At least 40 million #MECFS sufferers without medical help. With such a thin line between going from mild to moderate to severe to very severe.
#MEkills
blue rose in front of a dark background
December 13, 2024 at 12:40 AM
katha1970.bsky.social
The resonance has been incredible these past days with participants posting videos from Germany, Austria, Italy, the Netherlands, Norway, ...

Even Prof. @scheibenbogen.bsky.social and doctor, comedian and strong #LongCovid and #MECFS ally Eckart von Hirschhausen took a bite into a 🍋

Who's next? 🍋💛
Prof. Carmen Scheibenbogen biting into a slice of lemon for the LemonChallengeMECFS
December 10, 2024 at 6:40 PM
katha1970.bsky.social
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
December 10, 2024 at 6:40 PM
katha1970.bsky.social
#pwME #pwLC #MECFSallies

If you want to help raise awareness for #MECFS and donations for biomedical research please check out the #LemonChallengeMECFS 🍋

Inspired by the ALS icebucket challenge, initiated by the MECFS Research Foundation.

lemonchallengemecfs.org

bsky.app/profile/unge...
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
December 10, 2024 at 2:01 PM
katha1970.bsky.social
Thank you, that's great!

As for @medsky.social I am hoping they could add a label for #LongCovid and #MECFS specialists. They have such great labels for many sub-categories which doctors can add to their profile and I think these two would be tremendously helpful.
Two labels made by the Medsky label maker to show the field a doctor is specialized in (here: Internal Medicine, Rheumatology) Examples for doctors' specialty labels made by Medsky labeller: Clinical Informatics, Orthopedic Sports, Orthopedic Surgery
November 18, 2024 at 9:09 AM
katha1970.bsky.social
One of my favorite quotes.

What a powerful philosophy of life and for interaction with others 💚
Quote from Robin Williams: Everyone you meet is fighting a battle you know nothing about. Be kind. Always.
March 13, 2024 at 10:38 PM
katha1970.bsky.social
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
February 27, 2024 at 3:11 AM