UniteToFight
@unitetofight.bsky.social
LongCovid & ME/CFS conference project. We’re a small group of affected people living with LC & ME/CFS, alongside dedicated supporters.
#UniteToFight2024
www.youtube.com/@unitetofight2024
#UniteToFight2024
www.youtube.com/@unitetofight2024
Reposted by UniteToFight
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…
„„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.
www.aerztezeitung.de
August 7, 2025 at 5:56 PM
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…
„„Ohne Quellenbasis ignorieren Sie den umfassenden internationalen Forschungsstand, der ME/CFS als schwere somatische…
Reposted by UniteToFight
„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...
@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...
www.kunm.org
August 10, 2025 at 5:42 AM
„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...
@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...
Reposted by UniteToFight
Ergünzend aud em Hamburger Abendblatt:"„Ausweglose Schicksale“
Post-Covid: Betroffene über dramatische Zustände – was sie fordern": www.abendblatt.de/hamburg/hamb...
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.
www.abendblatt.de
March 20, 2025 at 9:02 AM
Ergünzend aud em Hamburger Abendblatt:"„Ausweglose Schicksale“
Post-Covid: Betroffene über dramatische Zustände – was sie fordern": www.abendblatt.de/hamburg/hamb...
Post-Covid: Betroffene über dramatische Zustände – was sie fordern": www.abendblatt.de/hamburg/hamb...
Reposted by UniteToFight
March 10, 2025 at 10:06 AM
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...
DRINGENDER APPELL FÜR DIE VERBESSERUNG DER MANGELNDEN VERSORGUNG BEI ME/CFS, POST-COVID UND POST-VAC IN HAMBURG
www.fatigatio.de/fileadmin/Pr...
March 11, 2025 at 12:09 PM
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...
DRINGENDER APPELL FÜR DIE VERBESSERUNG DER MANGELNDEN VERSORGUNG BEI ME/CFS, POST-COVID UND POST-VAC IN HAMBURG
www.fatigatio.de/fileadmin/Pr...
Reposted by UniteToFight
The whole day gave me @unitetofight.bsky.social vibes 🔥 Thank you @vmatthiesboon.bsky.social for making this happen!
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
Also memorable? A banquet over the border in Germany
#LongCovid
February 4, 2025 at 11:25 AM
The whole day gave me @unitetofight.bsky.social vibes 🔥 Thank you @vmatthiesboon.bsky.social for making this happen!
Reposted by UniteToFight
🖤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
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
December 12, 2024 at 7:18 AM
🖤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
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
Reposted by UniteToFight
🍋 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
Please share and support the MECFS Research Foundation!
#LemonChallengeMECFS
#LongCovid #CovidLong #ApresJ20
December 9, 2024 at 11:53 AM
🍋 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
Please share and support the MECFS Research Foundation!
#LemonChallengeMECFS
#LongCovid #CovidLong #ApresJ20
Reposted by UniteToFight
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.
Only 8 minutes long and really worth being aware of.
Summarized: Autoantibodies from Long Covid patients caused immediate Long Covid symptoms in mice.
#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
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
Dr. Jeroen den Dunnen: Is there a link between auto-immunity and Long COVID? (Day 2, Block 9)
YouTube video by UniteToFight
youtu.be
November 24, 2024 at 1:21 AM
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.
Only 8 minutes long and really worth being aware of.
Summarized: Autoantibodies from Long Covid patients caused immediate Long Covid symptoms in mice.
Reposted by UniteToFight
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”
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”
December 1, 2024 at 9:00 AM
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”
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!
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!
November 28, 2024 at 7:02 PM
👋
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!
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!
Reposted by UniteToFight
And here's more commentary on these proposed Canadian Long Covid guidelines: simonspichak.beehiiv.com/p/everything...
November 27, 2024 at 12:01 AM
And here's more commentary on these proposed Canadian Long Covid guidelines: simonspichak.beehiiv.com/p/everything...
Reposted by UniteToFight
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...
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.
www.nytimes.com
November 26, 2024 at 9:57 PM
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...
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...
Reposted by UniteToFight
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
„Die aktuellen Therapiemöglichkeiten vom Post-#COVID-Syndrom (PCS) sind vor allem symptomatisch und off Label. Allerdings gibt es aktuell einige in …
#LongCovid #MECFS #LongCovidKongress
November 26, 2024 at 11:23 PM
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
„Die aktuellen Therapiemöglichkeiten vom Post-#COVID-Syndrom (PCS) sind vor allem symptomatisch und off Label. Allerdings gibt es aktuell einige in …
#LongCovid #MECFS #LongCovidKongress
Reposted by UniteToFight
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?...
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 12:42 PM
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?...
youtu.be/RiwX9Y0NbiQ?...
Reposted by UniteToFight
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...
Trial By Error: My Letter to BMJ Seeking Correction to Editorial on REGAIN Trial of Mental-and-Physical-Health Rehab for Long Covid | Virology Blog
By David Tuller, DrPH I have recovered sufficiently from my post-election coma to send off another of my irritating letters to journals--this one to The BMJ ...
virology.ws
November 21, 2024 at 1:48 AM
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...
Reposted by UniteToFight
👋 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
Hier poste ich über ME/CFS, LongCovid & Forschung.
Vernetzt euch gerne mit mir, wenn euch diese Themen wichtig sind! 💙
#mecfs #longcovid
November 18, 2024 at 2:51 PM
👋 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
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
Essential thread on PEM & POTS comorbidity: ‘Your patient is your biomarker.’ Listen, believe, partner, and follow the science. #PEM #POTS
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.
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1/
November 20, 2024 at 2:32 PM
Reposted by UniteToFight
#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! 🙏💙
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! 🙏💙
November 14, 2024 at 12:01 AM
#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! 🙏💙
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! 🙏💙
Reposted by UniteToFight
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.
And announcements of all new subtitles of the #UniteToFight2024 conference talks.
November 16, 2024 at 10:41 PM
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.
And announcements of all new subtitles of the #UniteToFight2024 conference talks.
Reposted by UniteToFight
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
www.theguardian.com
October 18, 2024 at 6:39 AM
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...
Reposted by UniteToFight
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...
🔹 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...
www.nature.com
October 19, 2024 at 5:49 PM
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...
🔹 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...