The motion for a Swiss Strategy for postinfectious conditions was approved! We , the patient organisations for long covid and myalgic encephalomyelitis thank all who made this possible! What a day!

I’m having fun with this covid test… Can you spot misinformation? seanmullen.com/covidcompete...

Kurz und knapp um was es bei Long Covid geht und wo die Herausforderungen sind für Betroffene mit postinfektiösen Erkrankungen. Danke für die Berichterstattung! www.blick.ch/life/ratgebe...

The commission of the upper house unanimously recommended to approve the motion for a national strategy for postinfectious conditions. The strategy would provide a basis to improve healthcare, research and social security. @longcovidch.bsky.social long-covid-info.ch/news/5679/

In der Schweiz leben rund eine halbe Million Menschen mit Long Covid und ME. Doch sie kämpfen nicht nur gegen eine unheilbare Krankheit – sondern auch gegen Stigma, Fehldiagnosen und lebensbedrohliche Behandlungen. daslamm.ch/chronisch-kr...

📄 Unsere Antwort auf die Stellungnahme der @dgn-ev.bsky.social zu #MECFS Die Stellungnahme der Deutschen Gesellschaft für Neurologie zu ME/CFS ist ein medizinischer und ethischer Rückschritt. Sie ignoriert internationale Forschung, wiederholt widerlegte Annahmen – und gefährdet die Gesundheit 1/2

PET scan and EEG of long covid show hypometabolism in the brain, which basically is the proof fir our cognitive dysfunction! The confirmation of what we have been experiencing for over five years. www.nature.com/articles/s41...

Radio Programme about music, the role of patients, long covid and myalgic encephalomyelitis. Featuring Ren and Troubles on Swiss radio! www.srf.ch/audio/musik-...

Copenhagen airport and Denmark in general are well ahead of many countries for when it comes to recognising invisible illnesses such as long covid and myalgic encephalomyelitis.

Preparing for #MEawareness.

It was a pleasure talking about the long covid mode project developed by European network organisation Long COVID Europe to raise awareness for long covid, myalgic encephalomyelitis and other postinfectious conditions.

The children’s hospital in Zurich is closing its consultation for children and adolescents with #longcovid and myalgic encephalomyelitis. They plan to set up a psychosomatic consultation instead. Needless to say, families and patient organisations are appalled. www.beobachter.ch/magazin/gesu...

I will start a collection of events illustrating my cognitive dysfunction due to long covid. None of this would have happened pre covid. None. Never. I l“left“ my laptop at CPH. I tried to bake bread at 85 degrees instead of 185 degrees C last week. I’m wearing two different shoes today.

Story of my life after covid. 5 years #longcovid #myalgicencephalomyelitis and counting. If there is one thing I don’t regret it‘s advocacy for post-acute infectious conditions with the all-grrrrl team @longcovidch.bsky.social @swisslc-kids.bsky.social and all advocates at Long Covid Europe!

Gutes Gespräch über #longcovid #myalgischeenzephalomyelitis und die Herausforderungen. www.pszeitung.ch/wer-in-der-s...

We published a response to the magazine of the Swiss research funding body. Their article gaslighted people living with #longcovid #myalgicencephalomyelitis #mecfs. We pointed out that targeted funding would help generate the desperately needed evidence on these neglected postinfectious conditions.

Lea ist eine von vielen Jugendlichen, die von #longcovid #myalgicencephalomyelitis betroffen ist. Nichts ist mehr selbstverständlich: Schule, Ausbildung, Studium, Freizeit, Sport, Freundinnen treffen. 18‘000 Kinder und Jugendliche in der Schweiz. main--inclusive-media.netlify.app/beitraege/kr...

Five years of the pandemic have changed our country. These five years have also turned the lives of millions of people with #LongCovid #myalgicencephalomyelitis upside down. Jobs lost, no treatment, no support, no relief, no money. Little hope for recovery. www.nau.ch/news/schweiz...

450'000 betroffene Kinder, Jugendliche und Erwachsene in der Schweiz Nach 6 Monaten bleiben 75 Prozent krank Weniger als 12 Prozent der Schwerbetroffenen erhalten eine IV-Rente

Today like any other day over the past 5 years I want to draw your attention to the fact that we are witnessing a mass-disabling event with worldwide over 400 million adults, adolescents and children living with #longcovid #myalgicencephalomyelities #postvac and other postinfectious conditions.

Ladies running @longcovidch.bsky.social @swisslc-kids.bsky.social holding their retreat to decide on strategy! All sick with #longcovid, and 3/7 too sick to attend in person. That‘s the reality of #longcovid #myalgicencephalomyelitis #mecfs international women‘s day. Gender data gap! #genderhealth

5 years ago I went to a concert. I wasn’t aware of risks of acute covid, sequelae or my predisposition for immune disorders. 06/03/20 d0 10/03/20 mild acute 16/03/20 - tachycardia, myocarditis, lung & muscle problems, exertion intolerance #longcovid #longcovidawareness #MyalgicEncephalomyelitis

Was sind die Chancen von #CitizenScience im Allgemeinen & der Patientenbeteiligung im Besodneren? Welchen Wert hat «angewandte» Erfahrung? Kann Citizen Science ein Karriereweg sein? Wir sprachen über all das mit @chantalbritt.bsky.social . ➡️ www.citizenscience.uzh.ch/de/aktuelles/blog/teilhabe

What are the opportunities for citizen participation in general & patient involvement in particular? What is the value of “applied” experiences? Can #CitizenScience be a potential career path? We talked with @chantalbritt.bsky.social about all this. ➡️ www.citizenscience.uzh.ch/en/news/blog/teilhabe

Swiss government recommends that parliament approves the motion for a national strategy on #longcovid #myalgicencephalomyelitis #mecfs #postvac. This is a milestone for people affected, their families, friends and supporters. Thanks to all politicians involved! www.parlament.ch/de/ratsbetri...

I’m moved to read that so many fantastic people across the world are fighting for us, for truth, for evidence. Thanks to all of you who signed the letter to Cochrane to protect the health of people with #longcovid #myalgicencephalomyelitis #mecfs from harmful therapies. virology.ws/2025/02/20/t...

1/1 Ggfls. kann es sinnvoll sein, nach SARS-CoV-2 Infekt ab und zu den Blutzuckerspiegel zu überprüfen. Eine aktuelle Studie zeigt auf, dass nach Infektion mit SARS-CoV-2 der Kohlenhydrat-, Lipid- und Aminosäurestoffwechsel pathologisch beeinflusst wird: www.sciencedirect.com/science/arti...

The Swiss government will soon decide if it should recommend that parliament approves a motion demanding a national strategy on #longcovid #mecfs myalgic encephalomyelitis #postvac. @swisslc-kids.bsky.social @sgme.bsky.social ME/CFS Schweiz and @longcovidch.bsky.social support the strategy.

Human rights body Council of Europe passes long covid resolution 1. significant public health, economic, quality of life impacts 2. need of funding for research, healthcare, policies involving patients 3. care centers, training, awareness, recognition as disability pace.coe.int/en/files/341...

Swiss pediatricians still try to explain the rise in diabetes in kids with immunity debt. They claim autoimmunity is caused by masks, disinfecting hands and staying at home for a week. No autoimmunity and immune dysfunction are a host responses triggered by SARS-CoV-2. www.srf.ch/wissen/gesun...

If we were merely deconditioned and our bodies responded normally to exercise, we could motivate and train ourselves fit. Studies like PACE or RECOVER show that #longcovid and #myalgicencephalomyelitis #mecfs are physical diseases with somatic dysfunctions. www.frontiersin.org/journals/hum...

1/1 Entstehen Alzheimer & Co durch Herpesviren? Alzheimer und multiple Sklerose könnten in Wirklichkeit Infektionskrankheiten sein. Indizien deuten darauf hin, dass neurodegenerative Erkrankungen auf Herpesviren zurückgehen. www.spektrum.de/news/entsteh...

#LongCovid risk associated w/ multiple SARS-COV-2 infections, severe #COVID, and being unvaccinated at 1st infection after adjusting for relevant demographic, lifestyle, clinical variables. Can we please focus on those now!? (Not BMI, anxiety, personality) www.sciencedirect.com/science/arti...

Study about Spanish Flu in Zurich shows need to go beyond #mortality to quantify burden #morbidity, impact on hospitalisation, long-term sequelae & work absences. #longcovid #myalgicencephalomyelitis #mecfs encephalitis lethargica, SARS1, MERS. www.sciencedirect.com/science/arti...

Out today at www.nature.com/articles/s41... These numbers are crazy. A generation of young people with dementia waits for us in the near future, and we are not prepared for that. #NeuroCovid

We finally managed to move all our Swiss long covid and myalgic encephalomyelitis advocacy accounts away from hell. You find patient organisation Long Covid Switzerland under @longcovidch.bsky.social and Long Covid Kids Switzerland and their families under @swisslc-kids.bsky.social.

Die Psychologisierung ist DIE grosse Herausforderung für Betroffene mit myalgischer Enzephalomyelitis. Long Covid verbessert die Situation langsam. Toller Artikel! Danke an alle Beteiligten! @sgme.bsky.social www.republik.ch/2025/01/08/l...

Report on our desperate search for treatments for long covid amd ME. And the position of the doctors who refuse to treat us off-label because of a lack of evidence. But who don’t generate any evidence on HBOT and apheresis. What should we do until we have the evidence? youtube.com/watch?v=MTuv...

Lorenz Hess hat eine Motion eingereicht für eine Schweizer Strategie für myalgische Enzephalomyelitis, Long Covid und PostVac. Wir danken ihm und den Vertreter:innen aller Parteien, die den Vorstoss unterstützt haben. Ich brauche keine Geschenke! Danke. long-covid-info.ch/news/motion-...

German television programme about how inclusion is not implemented in Germany and how employers and the system can avoid and evade inclusion and disability legislation. Thank you for spelling it out. #sogutesgehtjedenfalls Most people are being disabled! youtube.com/watch?v=hGvK...

Uh-oh… first wean myself off of Twitter and within the same year I also must get rid of Amazon/kindle. This feels like being forced to grow up.

Everyone looking for #MECFS #LongCovid people to follow, here are some suggestions: @swastrosarah.bsky.social @sabinehermisson.bsky.social @sammiemc.bsky.social @gaby0605.bsky.social @chantalbritt.bsky.social @oonaghcousins.bsky.social @thereforme.bsky.social more ⬇️ go.bsky.app/LciucLP

First report showing that prescribed rehabilitation programmes often harm patients with long covid and myalgic encephalomyelitis. The clinics fail to take exertion intolerance and post-exertional malaise into account. First do no harm. www.srf.ch/play/radio/r...

Der SoZ-Artikel „Woke wankt“ triggert mich. Bei Artikel und Definitionen werden tendenziöse Haltung und Narrativ klar. Beim „Neurodiversität“ steht Diagnosen *sollen* als neurologische Variationen verstanden werden und nicht *etwa* als Defizite. „Sollen“ und „etwa“ bringen mich auf die Palme.

#MECFS #BC007 PD Bettina Hochberger of FAU Erlangen reports on demonstrable effectiveness in the reCOVER study at the 3rd #LongCovid Congress in Berlin. Visible in the 7 Telsa MRI, among other things

Stem cell therapy to treat “CFS”? After this publication w/ “promising” results on 3 cases I have more questions (& doubts). I’m interested in data on immune-modulating approaches. I don’t know if the participants had myalgic encephalomyelitis with PEM/PENE. jws.rivierapublishing.id/index.php/jw...

Always interesting to check out sponsoring from industry for doctors, other individuals and organisations. I received 500 from Lundbeck, long covid Switzerland received 200. It’s nothing compared to other players. For all of those who think we are paid by the Pharma mafia. www.pharmagelder.ch

Re-sharing the mini-series from my ME/CFS photo project. substack.com/@andrewgiffo... It's a long-form project, aiming to help raise awareness. I've lots more work to make and add, including the kinds of images more classically associated with being incapacitated by ME. #MECFS #pwME #photography

People pushing brain retraining as a cure for long covid or myalgic encephalomyelitis have been clearly brain washed. The harm graded exercise and cognitive behavioural therapies did and do is enormous. Commercial interests explain the narrative. Follow the money. me-pedia.org/wiki/Lightni...

I‘m chuffed to have won the prix courage for our advocacy work for long covid and myalgic encephalomyelitis. This is me with the Swiss-German fraction of our patient organisation Long Covid Switzerland. We rock! The team also includes two Swiss-French ladies and one for the Italian speaking part.