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…

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.

aerztezeitung.de

„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...

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...

kunm.org

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

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.

abendblatt.de

Berlin, wir sehen uns am Samstag 🤝 @berlin-buyers-club.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!

Charlotte Blease PhD@crblease.bsky.social · last yr.

Attended the Postviral Ethics Conference at Radboud: 30 in room, 75+ online, including bedbound patients who contributed. First time I’ve seen a speaker present from their bed. More events should follow this lead Also memorable? A banquet over the border in Germany #LongCovid

🖤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

🍋 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.

Katharina 🦋🍋🍀@katha1970.bsky.social · 2y ago

#UniteToFight2024 The talk by Dr. Jeroen den Dunnen, immunologist and principal investigator at the Amsterdam University Medical Center, on mice immediately developing #LongCovid symptoms after receiving autoantibodies from Long Covid patients is now available with 🇬🇧 subtitles: youtu.be/iJTlJC70-CI

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”

👋 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...

Everything Wrong with Canada's Proposed Long COVID Recommendations

The proposed Canadian guidelines for treating Long COVID pose harm to patients and risk psychologizing the disease.

simonspichak.beehiiv.com

David Tuller@davetuller1.bsky.social · 2y ago

A Canadian health care collaborative is seeking comment on its recommendations for Long Covid, including exercise and CBT. Patients are understandably concerned. Deadline to comment is tomorrow, Wednesday Nov 27th: virology.ws/2024/11/26/t...

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...

Opinion | Donate This Holiday Season: Long Covid Research Need Your Help

A group of long Covid patients is financing research and making progress.

nytimes.com

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

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?...

ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

YouTube video by Broken Battery

youtu.be

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

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

Putrino Lab@putrinolab.bsky.social · 2y ago

Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane. 1/

#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.

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...

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

theguardian.com

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...

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...

nature.com