Katharina 🍀's avatar

Katharina 🍀

@katha1970.bsky.social

74 followers 245 following 44 posts

Here for research and info on #ChronicHeadache #ChronicMigraine #MECFS #LongCovid #MCS #MCAS #ChronicPain #Neuroscience #Psychology #MedicalGaslighting, tweets German & English, 🎶

youtube.com/@pain_and_hope or @katha1970 on Twitter/X

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Not exactly sure what you meant (in the above summary there were several quotes from Senator Jordon’s talk). If you want to read more, here’s the post with my transcript of his talk (again, wrote this voluntarily to spread awareness for #MECFS and #LongCovid 😉)

bsky.app/profile/kath...

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Here is a transcript of Australian Senator Jordon Steele-John’s heartfelt talk at the #UniteToFight2024 conference on #LongCovid and #MECFS

As I has no reach, please share to spread awareness for the urgent need for action by more politicians around the world.

padlet.com/katha1970_/p...

1 replies 1 reposts 2 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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I have (although just to note I am not involved with the conference organization at all and do this entirely voluntarily to spread awareness, so it sounds a bit funny to “order” a certain summary from me 😉). Will post it here later. I have no reach here, so mainly still posting on Twitter.

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Sind wir uns einig, dass das echt nicht so super ist von der Reichweite hier für mich? 😉 Mir ist Bluesky ja auch viel sympatischer. Aber auf Twitter habe ich über 1000 Follower (und es gibt ja auch noch viele alte Netzwerke dort ohne die nervigen Trolle) und hier verschwindet jeder Post im Nirvana.

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Here's an updated version of my summary of the #UniteToFight2024 conference on #LongCovid and #MECFS now including additional quotes from @edyong209.bsky.social, Prof. Dr. Karl Lauterbach, Senator Jordon Steele-John, Dr. Jeroen den Dunnen, Dr. Tom Molmans

Please RT

padlet.com/katha1970_/p...

1 replies 4 reposts 7 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Here's a transcript of @edyong209.bsky.social's heartfelt & empathetic opening speech at the #UniteToFight2024 conference on #LongCovid and #MECFS.

I have no reach here, so it'll probably disappear in the void again. But if anyone sees it, please read and watch his talk.

padlet.com/katha1970_/p...

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Good. But strange that the link wasn’t working for you. No idea why.

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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And this is the direct link to the #unitetofigt2024 summary:

padlet.com/katha1970_/i...

Please let me know if it doesn’t work for you. Could also e-mail it to you if you let me know how to reach you.

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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This is the link to my padlet where you‘ll find the #unitetofight2024 summary in the second column:

padlet.com/katha1970_/i...

Hope it works?

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Okay, danke. Kann dem hier ja nochmal eine Chance geben 😉 War monatelang komplett von Twitter weg und hatte gehofft, dass Bluesky es für mich ersetzen kann, aber es ist echt mühsam, die Reichweite von null wieder aufzubauen und alle, die von X weg sind, sind halt auch irgendwo verstreut.

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Finde zum Beispiel auch absolut unbrauchbar, dass man auf Bluesky keine vernünftigen Threads posten kann. Aber kommt vielleicht noch (oder ich hab nur noch nicht verstanden wie 😅).

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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"Occupational and Physical Therapy Perspective: Introductory Guide to Post-Exertional Malaise and Pacing for PEM"

by Clayton Powers, DPT, Doctor of Physical Therapy University of Utah and Amy Mooney, MS OTR/L, Occupational Therapist, Chicago

#UniteToFight2024

www.youtube.com/watch?v=INbF...

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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"Sars-CoV-2 neuroinvasive potential and associated neuroinflammation as possible mechanisms of underlying brain fog and cognitive dysfunction in Long Covid patients"

by Dr. Danielle Beckman (Neuroscientist, University of California)

Slides: ucdavis.app.box.com/s/6stuakg87d...

#UniteToFight2024

1 replies 0 reposts 0 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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"Occupational and Physical Therapy Perspective: Introductory Guide to Post-Exertional Malaise and Pacing for PEM"

by Clayton Powers, DPT, Doctor of Physical Therapy University of Utah and Amy Mooney, MS OTR/L, Occupational Therapist, Chicago

www.youtube.com/watch?v=INbF...

#UniteToFight2024

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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"Holism done right: addressing psychic trauma in Long Covid and ME/CFS"

by Tom Molmans (MD,Psychiatrist, Long Covid and ME/CFS patient, research consultant for the Dutch Long Covid Foundation)

#UniteToFight2024

vimeo.com/944252145

1 replies 0 reposts 3 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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#UniteToFight2024 videos and slides

Replays will be available over the next days & weeks.

For those still on X (I know, not popular here 😉): I started a thread where already available videos and slides are collected x.com/katha1970/st...

Will post the already available videos/slides in replies ⬇️

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Hab die Summary von Unite To Fight gerade hier gepostet. Mal schauen, ob es jemanden erreicht 😉 Merci für's dazu Animieren 😊

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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#UniteToFight2024 Summary and Quotes

I wrote a summary of this week's epic conference on ME/CFS and Long Covid followed by a quite long list of speakers' quotes which may be shared with anyone interested.

The PDF can be downloaded from my padlet.

padlet.com/katha1970_/i...

#MECFS #LongCovid

1 replies 3 reposts 8 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Danke. Mir wäre es auch so viel lieber hier oder irgendwo anders als auf X. Aber wenn’s dann niemanden erreicht, ist auch echt doof. Mastodon ist für mich reichweitenmässig null wie hier und ich schaffs nicht gut auf mehreren Plattformen parallel. Aber hoffe auch sehr, dass es sich noch ändert hier.

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Hm, finde X auch alles andere als toll. Aber da ich bei Bluesky null Reichweite und kaum Follower habe und alles, was ich bisher gepostet habe, null Resonanz hatte, macht das hier bisher für mich nicht viel Sinn. Aber danke fürs Teilen meiner Zusammenfassung. Die Konferenz war wirklich sehenswert!

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Ja, das stimmt leider. Mein Mann versucht aus Rücksicht auf mich immer wieder neue angeblich parfümfreie Produkte und sehr viele duften trotzdem 😔 Hast Du eine Theorie was diese extreme Geruchsüberempfindlichkeit auslöst? Es ist ein so sozial inkompatibles Symptom, noch dazu so unsichtbar.

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Parfumfreie Haarstyling-Produkte habe ich noch nicht ausprobiert, aber schau mal hier: www.neutrale-produkte.de/de/125-haars....

Für Deo, Shampoo, Duschgel, Cremes etc. finde ich die 0% Parfum Linie von Louis Widmer super.

Kann Dir gar nicht sagen, wie rücksichtsvoll ich das von Dir finde! 🙏🙏🙏

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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@docninurta.bsky.social @docypsilon.bsky.social @docontherocks.bsky.social @vmuecke.bsky.social @ralfwittenbrink.bsky.social @frolleincortex.bsky.social @ninaweber.bsky.social @martinruecker.bsky.social @fetthennecarl.bsky.social @suentelgeist.bsky.social @lotteskatze.bsky.social

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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@susscrofa.bsky.social @danamaresa.bsky.social @propofolium.bsky.social @eckerleisabella.bsky.social @bettinagrande.bsky.social @sebastianlehmann.bsky.social @karin-kelle-herfurth.de @gabypsilongaby.bsky.social @docglitz.bsky.social @drchronically.bsky.social @herzspitze.bsky.social

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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@liegenddemo.bsky.social @knutschfussel.bsky.social @petitfeu.bsky.social @dadlani.bsky.social @inogue.bsky.social @arizona10238417.bsky.social @lohmatt.bsky.social @oegmecfs.bsky.social @sgme.bsky.social @fatigatioev.bsky.social @schreinerorg.bsky.social @pissinpants.bsky.social

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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@rhearrrrrr.bsky.social @heikewigr.bsky.social @marielubb.bsky.social @ostriebling.bsky.social @ilkokowalczuk.bsky.social @elohopea.bsky.social @judyintheskynet.bsky.social @lightupthenight4me.bsky.social @einfachastrid.bsky.social @uno2608.bsky.social @steineundbasalt.bsky.social

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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@mefreake.bsky.social @losronjos.bsky.social @herrblabla.bsky.social @jurika82.bsky.social @feliba54.bsky.social @leixsa.bsky.social @violetta.bsky.social @ankijoy.bsky.social @maluxx.bsky.social @wilmaruhe.bsky.social @rcschwartz.bsky.social @freulingskind.bsky.social @jurika82.bsky.social

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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@sabinehermisson.bsky.social @derhorizontale.bsky.social @julimaelle.bsky.social @waldmeer.bsky.social @chrissiep.bsky.social #MECFS #LongCovid

1 replies 0 reposts 6 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Some wishes from a patient’s perspective how doctors can support patients with complex chronic illnesses (in video ⬇️).

#NEISvoid #millionsmissing #chronicallyill #medicalgaslighting

youtu.be/xqYKnP6fxb4?...

2 replies 11 reposts 14 likes

Reposted by Katharina 🍀

Sus Scrofa's avatar Sus Scrofa @susscrofa.bsky.social
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Dr. André Seidenberg hat 10/20 in NZZ gesagt, dass in Schweiz 20,000-40,000 an COVID-19 sterben, und etwa 5 % der Bevölkerung Langzeitfolgen haben werden. Ich weiss noch, wie sehr mich das verstört hat. Und jetzt sind wir so weit – man hätte es schon damals wissen und verhindern können.

0 replies 2 reposts 18 likes

Reposted by Katharina 🍀

Sus Scrofa's avatar Sus Scrofa @susscrofa.bsky.social
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Please don’t do exercise or sports for several weeks after recovering from acute COVID-19 (or any cough or flu currently going round)… Consequences can be dire, Long Covid, cardiac arrest, rhabdomyolysis etc.

time.com/6215346/covi...

1 replies 81 reposts 161 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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An alle, die aufgrund einer chronischen Krankheit ihr Leben “verloren” haben:

Hier ein Song, den ich für meine Familie geschrieben habe -

“Is this really life?”

Vielleicht spricht er einige von Euch auch an.

Darf gern geteilt werden 💚

youtu.be/KR2p9NlWrqI?...

#MECFS #LongCovid #NEISvoid

1 replies 34 reposts 55 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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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?...

0 replies 3 reposts 4 likes

Reposted by Katharina 🍀

Dave Awl's avatar Dave Awl @daveawl.bsky.social
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Up to 5.8 million kids have long Covid now, according to a new study. One thing I think a lot of people don't grasp is the difference between getting Covid once and the cumulative impact of getting it over and over and over again.

1 replies 9 reposts 26 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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One of my favorite quotes. What a powerful philosophy of life and for interaction with others 💚

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Reposted by Katharina 🍀

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Habe einige Informationen und Dokumente zusammengestellt für Patienten mit komplexen Erkrankungen und Ärzte, die diese unterstützen möchten.

u.a. Infos zu PEM, Pacing und wie Ärzte Patienten unterstützen können, die oft schon viel Medical Gaslighting erlebt haben

padlet.com/katha1970_/i...

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Here is a personal collection of some information and documents for patients with chronic complex illnesses and doctors wanting to support them.

For patients: info on PEM, crashes, pacing

For doctors: how to truly support patients with a history of medical gaslighting

padlet.com/katha1970_/i...

0 replies 2 reposts 5 likes

Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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Still as valid as in 2022:

"Finally! [then] New @WHO guideline specifies: NO EXERCISE THERAPY for #PostCovid patients if they suffer from POST-EXERTIONAL SYMPTOM EXACERBATION."

Please help protect patients from getting bedbound by wrong therapies.

Details ⬇️
twitter.com/katha1970/st...
#NEISvoid

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Katharina 🍀's avatar Katharina 🍀 @katha1970.bsky.social
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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

1 replies 10 reposts 65 likes