The PolyBio-supported study on elevated plasma proteins associated with breathlessness in Long COVID was featured in an article in Technology Networks : www.technologynetworks.com/tn/news/long...

Why I Can’t Just Meet You for Dinner open.substack.com/pub/centerle...

Co-creating a social science research agenda for Long Covid doi.org/10.3389/fpub...

Very glad to have a chapter in the Long COVID and Society book curated by D. Lupton. In my chapter, I show how #LongCovid patient-driven advocacy-research was critical in 2020-1 to identifying LC as a novel multi-system disease entity, and achieving recognition from policymakers and WHO

#Medsky🧪 #IDsky #Immunosky #publichealth In this small study of 78 LC individuals with ME/CFS and compared them with 62 age- & sex-matched recovered (R) individuals. Highlights​ • Female #LongCovid (FLC)patients show heightened immune activation & inflammation

🧪 #LongCovid

Long-Covid-Symposium im Oktober 2025 in Kanada (UT: 🇩🇪) ➡️ Covid ist nicht vorbei ➡️ LongCOVID-Fälle steigen kontinuierlich ➡️ Wir sehen immer mehr Fälle von Long Covid ➡️ Keine seltene Erkrankung, auch nicht bei Kindern ➡️ Keine Therapie - Prävention ist darum wichtig!

Nachruf auf Marc Kirch gestorben 17.09.2025 von Hannes Berns Gedanken zum Tod meines Freundes, Weggefährten und nimmer lebensmüden, kämpferischen ME-Bruders „Der Wert einer Gesellschaft bemisst sich daran, wie sie die Schwächsten behandelt." Gustav Heinemann (ehemal. Bundespräsident) t.co/Ykdclm0S2R

Long COVID is underdiagnosed, researchers say Covid is not over Long Covid cases are rising steadily We are seeing more and more cases of Long Covid It is not a rare disease, even in children There is no treatment – prevention is therefore important! www.cbc.ca/player/play/...

Tevogen Reports Major Clinical Milestone: Expands HLA Coverage of its Investigational Precision T Cell Therapy for Acute and Long COVID www.globenewswire.com/news-release...

The paper Dr. Stuart Malcolm cited at our Microdosing GLP-1/GIP Receptor Agonists in #MECFS #LongCovid roundtable: pubmed.ncbi.nlm.nih.gov/36907221/ More research on GLP-1/GIP RAs treating intracranial hypertension symptoms: tinyurl.com/ennwun4x tinyurl.com/u6ad2xa4 tinyurl.com/2hramz8n #MedSky

“The Open Letter followed an action in AMC’s New York headquarters, where an empty wheelchair was placed with a sign reading ‘Disabled Artists Will Not Be Erased.‘ In October, the artists living with Long COVID reported that no response had been received from AMC or Eric Bogosian’s representatives.”

Juhuuuu, wollt ihr mit mir feiern? Meine ungehaltene Rede „Die wunde Stelle mitten unter euch“ über den menschenunwürdigen Umgang mit #MECFS wurde von der Stiftung Brückner-Kühner und dem Verlag S.Fischer Theater ausgewählt — und ich darf sie am 10. Dezember im Rathaus Kassel halten!

📻 Im Radio-Salzburg war heute bei “Mittagszeit” #MECFS eine Stunde lang Thema. Prof. Kathryn Hoffmann hat sowohl die Krankheit als auch das so wichtige Thema spezialisierte ME/CFS-Behandlungsstellen super erklärt. 1/

1/"In the ME/CFS study, researchers found a distinctive genomic pattern present only in affected individuals and absent in healthy participants. This work looked beyond the linear DNA sequence explored in the large DecodeME study".

#MECFS in Praxis und Forschung – ärztliche Fortbildung 2025 Live Webinar mit zwei Modulen am 05. und 19.11.2025 unter der wissenschaftlichen Leitung von Prof. Dr. Carmen #Scheibenbogen (Charité Fatigue Centrum). Die Teilnahme ist kostenlos www.mecfs.de/informatione...

The number of people aged between 16 and 34 who are out of work due to long-term sickness increased by 76% between 2019 and 2024

Scripps Research has launched an at-home #LongCOVID clinical trial to test the drug tirzepatide. Co-lead @julialmv.bsky.social writes that these types of decentralized trials will accelerate research and make clinical trials more accessible. bit.ly/4nA02wc

#Covid JAMA study - Health-related Covid absences from work 12.9% higher than during pandemic due to ongoing circulation of COVID variants. 2% jump in deaths annually (120,000) since before pandemic with Long Covid major factor. Mild or severe the Covid infection, it raises chances of many diseases!

From the University of Illinois, a study of 1,043 Reddit posts shows that long COVID patients face disbelief when tests look normal, forcing them to fight for care and legitimacy in confusing and often dismissive medical encounters. www.tandfonline.com/doi/full/10....

if @cortjohnson.bsky.social takes requests would like Jarred Younger update any new pain-management since 2018 for #meCFS #LongCovid #Fibromyalgia as cures decade+ away low-dose naltrexone low-dose dextromethorphan What else now out there? Sodium/Potassium-channel modulators? Neurotensin analogs?

This paper strongly echoes the framework I have been developing and publicly advocating for over the last five years. #MISC #KD #LongCovidKids

"After just a few years, the decline is visible. A few more [years], and large parts of the population may be too impaired to function effectively, leaving us without the collective ability to respond." #longCOVID via @storiedselves.bsky.social in @thetyee.ca thetyee.ca/Analysis/202...

Pharmacy Times: COVID-19 Reinfection Heightens Risk of Postacute Sequelae of SARS-CoV-2 in Pediatrics 'Pediatric populations have been studied less often than adults in long COVID..to improve their outcomes, future investigations must span longer time periods' www.pharmacytimes.com/view/covid-1...

Emerging studies suggest fascia dysfunction may play a role in Long COVID. Myofibroblast activation, tissue stiffness & altered biomechanics could explain pain, fatigue, and dyspnea. Read more longcovidjourney.com/2025/08/06/h...

Long Covid Friends, I created this mantra to help me apply some positive vibes (cognitive behavior therapy techniques) to my daily routine. Feel free to use parts of this to make your own. Doing this practice seems to lift a weight off my shoulders.

*And* we are carrying the weight of this entire pandemic on our weary shoulders. And we've been doing that for six very long years. It's beyond exhausting. Many with long COVID (not me, sadly) are doing most of the work of advocacy and research, too, while watching most people pretend it's 2019.

Bitte unterstützt zahlreich! Wenn ihr selbst betroffen seid, wenn eure Lieben betroffen sind, aber auch gerne, wenn ihr nicht betroffen seid, aber die Nichtversorgung mitbekommt und diese nicht akzeptieren könnt. >

Aus PEM wird „Belastungsintoleranz, die man trainieren kann“. Reha-Konzepte nennen es „angepasste, individualisierte Aktivierung“. Studien behaupten, „unter Berücksichtigung von PEM“ sei „achtsame Bewegung“ nun wieder hilfreich. Das ist das alte #GET Narrativ – nur mit (etwas) neuem Etikett.

PEM, das zentrale Merkmal von MECFS, ist kein neuer Begriff. PEM wird aber zunehmend verfälscht, von #MECFS entkoppelt und bestenfalls als postvirale Belastungsintoleranz verharmlost. Damit wird das zentrale Krankheitsmerkmal von #MECFS verwässert und umetikettiert, Reha und #GET werden möglich.

Menschen mit postinfektiösen Syndromen werden zwischen Meinungen, Ideologien und Ignoranz zerrieben. Deshalb braucht es Ärztinnen mit Haltung – die Menschlichkeit und medizinischen Ethos über Meinungen stellen. orf.at/av/video/onD...

When PEM is misunderstood -whether through ignorance or intent- it leads to flawed studies, harmful therapies, and misguided guidelines. This misunderstanding is not a detail: Recognizing PEM correctly decides between safety and harm. #MECFS #PEM #NoGET #NoRehab #PEMisNotNegotiable

Es gibt so unendlich viele wichtige Themen, die sich massiv darauf auswirken, wie gut Menschen in Deutschland leben können, während sie kaum bekannt sind und kaum diskutiert werden. www.zeit.de/wirtschaft/2...

There are 2 articles in the Guardian: 1️⃣ stating that exhaustion is at EPIDEMIC levels 2️⃣ "The UK’s productivity crisis is one of the biggest challenges facing our economy and long-term health conditions in the workforce are a major factor in this" 🤦‍♀️Neither mentions #LongCovid

The Tyee: 'This Physicist Says We Don’t Take COVID Seriously Enough' 'Bar-Yam..has much on his mind..from repeated COVID infections poses a growing “existential threat” to human health..he is deeply worried about new evidence on how children are affected by long COVID' thetyee.ca/Analysis/202...

Comparison of mitochondrial dysfunction across aging, HIV, and long COVID to identify convergent mechanisms and dissection how these shared pathways contribute to bioenergetic failure and chronic inflammation www.mdpi.com/2076-0817/14...

Whole-body PETscans in MECFS Dr. Michelle James from #StanfordUniversity explains whole-body #PETscans of patients with #MECFS and healthy controls. Inflammation and mitochondrial dysfunction in several areas of the body: brain, muscles, bone marrow and salivary glands. youtu.be/72M55H0qNkE?

1/2 Lesenswerter Artikel aus Indien, der sich aber auf das Unvermögen aller Nationen und Menschen bezieht. "Forgotten Pandemic: The Lessons We Refused to Learn" #COVID #COVID19 #LongCOVID #Klimakrise #ClimateChange www.dailypioneer.com/2025/columni...

1/2 Some of this (25%?) is due to #LongCovid (which is certainly responsible for a lot of those now with long-term illnesses & new disability). We now know that Covid goes on attacking the nerves, organs & circulatory system for months, sometimes years after infection. news.sky.com/story/money-...

It’s great to see that more drugs may be coming on the market for long COVID. Excited to see how this goes! #PITT_IDFall25

Highlights to share with EVERYONE! Especially those in charge of hospitals, school boards, parents of young children.....yeah, EVERYONE! COVID doesn't care. Infection =Disability/Death ... thetyee.ca/Analysis/202...

In Österreich🇦🇹 geraten die #MECFS-Erkrankten unter Druck. Obwohl dringend Behandlung angeraten wird, um die PatientInnen vor Bettlägerigkeit zu retten, blockieren Sozialversicherung und Länder den seit 1 Jahr beschlossenen Aktionsplan. Unverantwortlich & absolut unethisch! on.orf.at/video/142976...

PEM - the central feature of ME/CFS - is not a new term. But it is increasingly being distorted, decoupled from ME/CFS, and downplayed as mere post-viral exertion intolerance. This dilutes and relabels #PEM, the core symptom of #MECFS, making rehab and #GET appear possible again.

Man darf bei dieser Groteske um die Befindlichkeit amnestischer Stakeholder nicht übersehen, dass das am Rücken der relevantesten Stakeholder passiert: den Menschen mit #MECFS. Denen erzählt man jetzt seit Jahren irgendwelche Gschichtln, aber ohne sichtbaren Fortschritt.

"symptoms&conditions of long COVID in children can include heart muscle inflammation,changes in taste&smell,blood clots..kidney injury..generalized pain..chest pain,fatigue&malaise,headache,musculoskeletal pain,abdominal pain,cognitive impairment thetyee.ca/Analysis/202... thetyee.ca/Analysis/202...

WICHTIG! Demotermin! Liebe Schleswig-Hosteiner, besonders die von der Westküste, seid solidrarisch und geht hin wenn ihr könnt! Morgen Montag den 3.11.25 16 Uhr in Husum am Hafen Schiffbrücke #Liegenddemo #MECFS #LongCovid #Nichtgenesen #Millionsmissig #Husum

Mitochondriale Dysfunktion bei Alterung, HIV und Long COVID: Mechanismen und therapeutische Möglichkeiten „Mitochondriale Dysfunktion wird zunehmend als gemeinsamer Faktor für Alterung, HIV und Long COVID erkannt. Gemeinsame Mechanismen – darunter oxidativer Stress, …

Man darf dabei nicht vergessen: Das Referenzzentrum wurde aufgrund der Qualifikationen zu #MECFS vergeben. Länder und SV hingegen haben bei ME/CFS seit Jahren nichts weiter gebracht, medizinische und soziale Versorgung sind indiskutabel. Unglaublich, das alles.

Basically my story on CBC, but told by someone else. Long Covid is very, very common, and lots of people have to care for people affected by it. www.cbc.ca/player/play/...

PolyBio supports #HIV-scientists to align in the #longcovid field m.youtube.com/watch?v=6kC1...