UniteToFight

Breite öffentliche Kritik an DGN-Statement zu ME/CFS Die Deutsche Gesellschaft für Neurologie (DGN) ignoriert den aktuellen Forschungsstand zu ME/CFS, kritisieren Patientenvertreter und Ärztinnen und Ärzte. Ihr Fokus auf die Psychosomatik sei falsch.

Die Ärztezeitung berichtet über die vielfältige Kritik an der Stellungnahme der @DGN-ev.bsky.social zu #MECFS und zitiert dabei auch aus unserem Brief an diese:

„„Ohne Quellenbasis ignorieren Sie den umfassenden internationalen Forschungsstand, der ME/CFS als schwere somatische…

Researchers from around the world headed to Santa Fe for long COVID conference A few years have passed since the height of the COVID-19 pandemic, but but researchers estimate millions of people are still living with the effects of long COVID. The Keystone Symposia on ‘Long COVID...

„Keystone meetings aren't just your average medical conference. They really are meant to be transformative.“
@daltmann.bsky.social

Aug 10-13

Register here
www.keystonesymposia.org/conferences/...

Thank you
@ahandvanish.bsky.social
@virusesimmunity.bsky.social

www.kunm.org/local-news/2...

Post-Covid in Hamburg: Betroffene über dramatische Zustände – was sie fordern Laut des Vereins Fatigatio gibt es in Hamburg „massive Versorgungslücken“. Wie den schwer Erkrankten besser geholfen werden soll.

Ergünzend aud em Hamburger Abendblatt:"„Ausweglose Schicksale“
Post-Covid: Betroffene über dramatische Zustände – was sie fordern": www.abendblatt.de/hamburg/hamb...

abgebildet ist ein rosa-rotes Plakat zum Long Covid Awareness Day am 15.März 2025 vom Berlin Buyers Club Es steht drauf: 5 Jahre Long Covid - ein falbes Jahrzehnt Vernachlässigung Wir wollen sichbar werden 14 Uhr am Amphitheater, Mauerpark, Eberswalder Straße 1, 10437 Berlin Bitte tragt eine FFP2-Maske

Berlin, wir sehen uns am Samstag 🤝

@berlin-buyers-club.bsky.social

@fatigatioev.bsky.social

Offener Brief der Regionalgruppe Hamburg des Fatigatio e.V.:

DRINGENDER APPELL FÜR DIE VERBESSERUNG DER MANGELNDEN VERSORGUNG BEI ME/CFS, POST-COVID UND POST-VAC IN HAMBURG

www.fatigatio.de/fileadmin/Pr...

The whole day gave me @unitetofight.bsky.social vibes 🔥 Thank you @vmatthiesboon.bsky.social for making this happen!

image de Judith avec un serre-tête en forme d’oreilles de lapin…des étoiles sur ses lunettes et 3 points verticaux sur le front. Elle sourit malgré tout…

🖤Hommage à Judith Schossböck 🖤

Judith Schossböck est décédée le 10 décembre. Âgée de 43 ans et atteinte très sévèrement d’EM depuis 2021, elle était très engagée malgré son état de santé.

1/6

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🍋 The lemon as a symbol for the bitterness of the disease but also for the hope of healing.
Please share and support the MECFS Research Foundation!

#LemonChallengeMECFS
#LongCovid #CovidLong #ApresJ20

If anyone ever tells you again, that #LongCovid is probably “just in your head”, send them this #UniteToFight2024 talk by @drdendunnen.bsky.social

Only 8 minutes long and really worth being aware of.

Summarized: Autoantibodies from Long Covid patients caused immediate Long Covid symptoms in mice.

A pretend polaroid shows Dr William Weir posing for a photo holding a #ThereForME Christmas card. The design shows two presents, one labelled "patient safety", the other "research". The photo is labelled "1".

This second image displays Dr Weir's handwritten message. It reads “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”

Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades.

His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”

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Founded in Jan 2024 after Lauren’s tragic assisted suicide due to severe ME/CFS, UniteToFight empowers to drive change for LC & ME/CFS.

In May, we hosted a global online conference with 40+ speakers & 10,000+ participants.Talks available on YouTube, subtitled in multiple languages.

Stay tuned!

And here's more commentary on these proposed Canadian Long Covid guidelines: simonspichak.beehiiv.com/p/everything...

Opinion | Donate This Holiday Season: Long Covid Research Need Your Help A group of long Covid patients is financing research and making progress.

NYT columnist @zey.bsky.social has written about PLRC & how we've made some of the best #LongCovid research possible, despite being a small group of chronically ill people.

She's very kindly chosen us as this year's nonprofit to donate to, and we're deeply honored!

www.nytimes.com/2024/11/26/o...

Prof. Carmen Scheibenbogen

Post COVID: Carmen Scheibenbogen setzt Hoffnung in Inebilizumab - ein Medikament gegen Neuromyelitis Optica

„Die aktuellen Therapiemöglichkeiten vom Post-#COVID-Syndrom (PCS) sind vor allem symptomatisch und off Label. Allerdings gibt es aktuell einige in …

#LongCovid #MECFS #LongCovidKongress

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.

youtu.be/RiwX9Y0NbiQ?...

Interesting that @bmj.com corrected the REGAIN study to highlight that it only included Long Covid patients who had been hospitalized. I wrote to the editor to ask why an accompanying editorial that promoted the study findings has not also been corrected. virology.ws/2024/11/20/t...

👋 Hi, ich bin Chris aus Berlin! Ich bin Co-Founder bei @u2fightworld.bsky.social & Projektleiter in der ME/CFS Research Foundation.

Hier poste ich über ME/CFS, LongCovid & Forschung.

Vernetzt euch gerne mit mir, wenn euch diese Themen wichtig sind! 💙

#mecfs #longcovid

💙

Thank you 🙏

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Essential thread on PEM & POTS comorbidity: ‘Your patient is your biomarker.’ Listen, believe, partner, and follow the science. #PEM #POTS

#UniteToFight2024 🇬🇧 subtitles

In this 🧵 I will continue to add all talks that have been transcribed & 🇬🇧 subtitled by volunteers.

I am humbled and deeply impressed by how much effort so many volunteers have been putting into this, despite many being ill themselves. Thank you all so much! 🙏💙

Hi! I mainly post about #MECFS #LongCovid #Migraines #MCAS #MCS #PEM #MedicalGaslighting #Neuroscience #Psychology, occasionally #ADHD #CeliacDisease. Rarely, I may post one of my hobby #singer-songwriter songs.

And announcements of all new subtitles of the #UniteToFight2024 conference talks.

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...

Long COVID science, research and policy - Nature Medicine This Review outlines the current state of scientific evidence on long COVID, discusses its impacts on patients, health systems, economies and global health metrics, and proposes a forward-looking rese...

My first post has to be about #LongCOVID

🔹 400 million individuals affected worldwide
🔹 $1 trillion in annual economic costs
🔹 Countless lives & communities shattered

The time for a comprehensive policy and research response is now!

Details in our review here www.nature.com/articles/s41...