The keyword that is missing here is #prevention.
The impact has been assessed, recovery is non-existent for many, and there is currently no preparedness to deal with #LongCovid / future pandemics. WHO's Strategic Plan still recommends surgical masks instead of KN95/FFP2. Not good enough.
a bearded man with glasses and a teal-colored tee is sitting on his bed with a laptop on his lap, the screen's light is reflected in his glasses.
@scripps.edu is launching a *fully remote* #LongCovid clinical #trial, testing a GLP-1 receptor agonist (the antidiabetic tirzepatide) vs placebo.
Must be 18 or older, and US citizens only, with a documented LC diagnosis:
longcovid.scripps.edu/locitt-t/
What does "cost" mean? It includes but is not limited to:
medical bills
nursing costs
loss of work
lost tax revenues
productivity losses
lost purchasing power
NB: These are not one-off but yearly variable costs.
Sources:
handelsblatt.com/politik/deut...
context.news/socioeconomi...
3/3
Why this is an economic problem:
The kinds of costs listed below have long-term consequences. Ignoring this issue may seem cheaper to some politicians, but this attitude is highly likely to backfire in the mid to long run.
2/3
Numbers and text on white background that states (in German): 871.000 Germans suffer from Long Covid. Source: ME/CFS Research Foundation
The costs associated with #LongCovid amounted to 32 billion Euro in Germany, reducing the country's GDP by 0.75% - in 2024 alone.
The German government's response: they are cutting the funding of Long Covid research by ~90%, according to Handelsblatt.
1/x
Children and teens who had a Covid reinfection had a doubling of #LongCovid risk (PASC) and a significant increase in many other adverse outcomes (Figure) www.thelancet.com/journals/lan...
Text: As a doctor with me/cfs, this is probably the worst disease that exists. That is all. Reasons: 1)CFS/ME has a worse quality of life then almost any other disease including COPD, most cancers, most heart attacks, strokes, multiple sclerosis, rheumatoid arthritis, etc. 2) It often effects you young or in the prime of your life, destroying all your potential. Most other serious chronic illnesses occur later in life. 3) It effects your mental capacity as well as your body. Many illness only effect the body, but keep your brain relatively intact. Multiple studies show brain damage, decrease blood flow to the brain, decreased brain metabolism, etc. 4) Perhaps the ONLY disease where exercise makes you significantly worse. 5) ZERO good treatments and only a 5% chance of recovery. 6) Nearly impossible to get disability and treatments not covered by insurance making it financially devastating. 7) Doesn't kill you, so your life insurance is useless to provide for your family. (This is a negative for me. Most important thing to me is my family be taken care of. I am the sole provider for my family of 5, and this disease ruined my entire families lives. If it killed me, then they would get my life insurance money and be okay). 8) Doctors aren't trained in it and most don't believe you or can't help you in any way. 9) It occurs through no fault of your own. Many chronic disease effect those that don't take care of themselves. I exercised and ate right, didn't matter. I went from running marathons and doing crossfit to more disabled then your average 80 year old at 35 years old. I am amazed that I learned about all these "terrible" diseases and disorders in medical school, and got this one...The worst of them all. I didn't know a person could suffer this much and still not die. I wish I had AIDS, MS, cancer, anything.....There are only very few diseases I can think of that are truly worse, ALS, Huntingtons Disease, and early onset parkinsons. That's about it.
"Vielleicht die einzige Krankheit, bei der Sport eine signifikante Verschlechterung verursacht."
Von einem Arzt/einer Ärztin mit #MECFS aus einem Reddit-Forum.
ME/CFS-Fachtagung des Fatigatio e.V. am 20. September 2025 im Leonardo Hotel am Tiergarten Hannover und via Live-Stream auf YouTube. Blaue Schrift auf pastellgelben Grund mit dem diesjährigen Motto: "Alles im Fluss...? Schwerpunkt: Veränderungen von Endothel und Mikrozirkulation im Kontext von ME/CFS". Im Hintergrund sich verzweigende von Rot zu Blau wechselnde Blutgefäße. Hinweis unten: "Veranstaltet vom Fatigatio e.V.". Fatigatio e.V.-Logo oben rechts.
SAVE THE DATE - Hybride ME/CFS-Fachtagung des Fatigatio e.V. am 20.09.2025 in Hannover & via Live-Stream auf YouTube.
Mit renommierten internationalen Gästen & den neuesten Erkenntnissen aus Wissenschaft & Forschung schaffen wir abermals eine wertvolle Plattform für Austausch & Diskussion.
🧵 1/7
Review: "Metformin is an intriguing multiaction drug that may play a significant role in treating ME/CFS and Long Covid"
pubs.acs.org/doi/full/10....
Kompliment, lieber Georg! Und danke DIR.
Das Interesse am Klimathema geht zurück. Wie kann ich jetzt als Wissenschaftler kommunizieren?
Alternativen, Kritik etc. welcome...
(Danke an @martinangler.com für die Redaktion)
www.eurac.edu/de/blogs/con...
#Masern: Südtirol ist mit Abstand das italienische Schlusslicht beim #Impfen (hellgelbe Provinz ganz oben auf der Karte, Kinder <2 Jahre).
Italienweiter Durchschnitt: ca. 85%
Südtirol: ca. 75%
Alle anderen Regionen > 90%
Ähnliche Zahlen bei #Polio-Impfungen bei 5/6-Jährigen.
Dass nach wie vor vereinzelte Stimmen der Wissenschaft den Schritt von Schwerstbetroffenen zur Sterbehilfe als Beleg für eine psychische Genese der Erkrankung deuten, verurteilt Anschober: "Suizid ist ja der Aufschrei der Verzweiflung - und den zu instrumentalisieren, ist letztklassig".
The picture shows to identical brain cross-sections (black and white) side by side, seen from the top. The left cross-section shows a higher resolution version and is captioned "7-Tesla", while the right cross-section misses details and appear more blurry. It is captioned "3-Tesla". Pic by Mayo Clinic via Phoenix magazine
This is the resolution of a 7T vs. a 3T MRI. It's like looking at a 4K screen vs. 720p.
If your MRI results look fine, they could be. Or the pic was too blurry for the doc to see the details.
Many patients hear "but your results look fine". We should talk more about uncertainty & not knowing.
Idealerweise brauchen wir Gremien, die fachlich qualifiziert und unabhängig entscheiden, welche klinischen Studien gefördert werden & welche nicht. Solche Gremien gibt es zwar, angesichts der Vielzahl an geförderten Pseudomedizinstudien stellt sich die Frage, ob die ihren Job richtig machen...
Nein. Das steht auch nicht da.
One more time, just in case anyone hasn't yet seen it. Gutted at today's news of a double child drowning. Please read and share.
Oder man ändert die Definition. "Krankenhaus": das Haus, in dem man erst so richtig krank werden kann. Dann passt es wieder.
3. Die Aussage, dass ME/CFS für Pharmafirmen zu selten und deshalb unrentabel ist, kann man so nicht stützen. ME/CFS hat siebenmal mehr Betroffene als MS, aber nur ein Zehntel geförderter Studien und einen Bruchteil der Forschungsgelder. An der Menge der Betroffenen liegt das also sicher nicht. 3/3
2. Ein großes Forschungsbudget allein ändert nichts, wenn das Geld nicht in guten Studien landet. Solange viel Geld in klitzekleinen, schlechten (zB vage Teilnehmer-Auswahl) Studien verpufft, und "Interventionen" wie Kneippen und Yoga getestet werden, kommt unterm Strich nichts heraus. 2/3
In dem Interview steht so manches Richtige & Schätzenswerte. Doch hier drei Gedanken/Korrekturen dazu.
1. Die Forderung nach 1 Mrd. Forschungsgeldern zu stellen, ist schön, aber aus dem politischen Abseits einfach, besonders wenn man selbst nicht (mehr) in der Pflicht ist, sie umzusetzen. 1/3
Wieder was gelernt, danke. ;-) Jetzt sollte es klappen
Liebend gern, sobald mein Zustand es wieder zulässt! Inzwischen schriftlich per Bsky Chatfunktion?
Ein sehr gut verständliches Interview von @martinangler.com mit dem Sportwissenschaftler Christian Puta zu der Frage, was die Post-Exertionelle Malaise #PEM bei #MECFS ist und was dabei im Körper passiert: t.co/d1U1ykX4bm
Vielen lieben Dank! Es gibt noch eine Langfassung der Gespräche mit Christian Puta & ich suche gerade noch ein passendes Outlet dafür...
Fun fact for those who rent: In Italy, a landlord is legally required to ensure your apartment has working heating in order to protect you from the cold.
But for #heat, no protection is guaranteed or required. If your place gets dangerously hot, then that's your problem.
Everybody involved could do better if they really wanted to. Politics: More funding & careful screening ie avoid esoteric studies. Science: better study designs & concerted efforts instead of trying to reinvent the wheel with tiny study cohorts and lumping heterogeneous patient groups together 3/3
Nor is it a priority. How is it that science could move mountains during the initial phase of the pandemic and now it‘s braking on ethical grounds „oh jut we have to respect the process“ when it was apparently feasible and doable to bypass the rules for a greater good? The answer is: hypocrisy. 2/
Double standards: pharma companies managed to get approval for Covid vaccines in less than a year bc of the emergency (and rightly so).
Yet, finding meds and even trials for off-label use are now sluggish (and often badly designed) - yet, despite 400M LC patients this is not an emergency. 1/
Status Quo:
5 years of Long Covid research.
56 years of ME/CFS research.
0 treatments, especially for PEM*
Band-aids for other symptoms.
* "Pacing" is not a treatment. It's basically saying: stop doing things.
