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#mecfs

44 posts37 participants4 posts today
Public
Tino Eberl

📰 Hier findest Du täglich Informationen zu #Klima & #Wissenschaft auf Deutsch. Mit Deiner Unterstützung kann ich das weiterhin kostenlose tun. Ich möchte helfen, #Sprachbarrieren zu überbrücken und möglichst viele Meldungen mit Bezug zur #Forschung bereitstellen.

Werde Unterstützer-Mitglied: steadyhq.com/klimacrew 👥

oder hilf' mit einer Einzelspende: ko-fi.com/tinoeberl 💶

SteadyKlimaCrewIch informiere über Zukunftsthemen, um Menschen vor Risiken zu warnen und Fortschritte sichtbar zu machen.
#Klimawandel#Klimaschutz#Science
Public
Will 🏳️‍🌈

I think I just experienced a physician that doesn’t understand ME/CFS with permanent baseline reductions. He just expressed for over 15 minutes that I need to start exercising and gradually increase. But when I did that in the past, along with my spine issues, it didn’t go well. I don’t choose to not exercise; I just have significant limitations.

#MECFS#pwME
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Badass Britt :mastodon_lgbt:

I’m looking for some advice from folks who have gone through university exams and the like.

I have an exam later in the day on Friday, during the time my mind and body usually require rest and I’m worried it will affect my performance. This is related to disability, so it’s not completely fixable or something the school can accommodate.

Any ideas on how I can try to keep my mind and body rested? I’m so tempted to study and review all day before, and I know I shouldn’t.

Help is welcome and appreciated. 🤓
#MECFS #Disability #School

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t u r b o Tobi

Wie es aussieht hab ich anscheinend in beiden Knien und beiden Hüften Arthrose.

Mein linkes Sprunggelenk wurde diesmal nicht geröntgt, aber da war auch beginnende Arthrose und Osteoporose beim letzten Röntgen vor paar Jahren.

Meine Arme und Hände tun in letzter Zeit auch so weh, mit meinem Glück hab ich dann da auch noch Arthrose.

Ich hab wirklich keine Lust mehr...
1/2

#chronicIllness#disability#mecfs
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ahimsa

#MillionsMissing 2025: Sending Out An SOS

Reminder: Two planning meetings for #MEAction Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow!

meaction.net/2025/04/08/why-we

Here's how to sign up

Meeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern

us06web.zoom.us/meeting/regist

Meeting 2: Thursday, April 10, 3 pm Pacific / 6 pm Eastern

us06web.zoom.us/meeting/regist

@mecfs

#MEAction Network · Why We’re Sending out an SOS this #MillionsMissingOn May 12th, #MEAction and the #MillionsMissing are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society.  HERE’S WHY: Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. Now, we are seeing constant threats to … Why We’re Sending out an SOS this #MillionsMissing Read More »
#MEcfs#PwME#MEAwareness
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Maggie Maybe

So I woke up this morning to find out that the next time I need to order some #LDN, because it’s literally the only treatment I have for #MECFS, there will be a 104% tariff on it.

I’m really angry about it, I’m just so so glad that I didn’t get this from covid I caught at work. I’m not sure that I could go on if I destroyed my health participating in capitalism only to have that same system decide that I shouldn’t be able to get out of bed if I can’t afford a 104% Trump tax.

Replied in thread
Public
Fatigatio e.V.

Hoffnung für präpandemisch ME/CFS-Betroffene: Unter den Expertinnen und Experten sind einige führende ME/CFS-Forschende, darunter Prof. Scheibenbogen, die sich bekanntlich intensiv mit ME/CFS beschäftigt.

Vor der endgültigen Beschlussfassung steht wohl im Mai 2025 noch ein weiterer Schritt an.

Weiterführende Infos und u.a. Protokolle von den Sitzungen findet ihr auf: bfarm.de/DE/Arzneimittel/Zulas

#MECFS #LongCovid #OffLabelUse #Gesundheitspolitik #Medikamentenzulassung #Arzneimittelversorgung
5/

Layout des Fatigatio e.V. mit Informationen zur Expertengruppe "Long COVID Off-Label-Use". Slides mit verschiedenen Infos zum Hintergrund des Themas. Quelle: BfArM.de.
Continued thread
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Martin Rücker

@riffreporter Ebenfalls auffällig: Österreich war schneller – dort gibt es bereits #OffLabel Medikamente als Kassenleistung – und hat zudem deutlich mehr Medikamente auf seine Liste aufgenommen. Über die Erfahrungen dort mein aktuelles Interview mit Prof.
Kathryn Hoffmann: riffreporter.de/de/wissen/oest Ob die zunächst also max. 4 Wirkstoffe (der fünfte ist zur Prophylaxe) auf #LongCovid beschränkt bleiben, wie vom Bundesgesundheitsministerium
initial beauftragt, oder wie in Österreich auf #MECFS #POTS #PAIS erweitert werden, lässt die BfArM-Publikation noch offen. 🔚

Ein Haufen weißer Tabletten und Kapseln unterschiedlicher Form liegt verstreut auf einer ebenfalls weißen Oberfläche.
RiffReporter · Long Covid & ME/CFS: Wie die Off-Label-Liste in Österreich funktioniert, warum die Blutwäsche fehltBy Martin Rücker
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Anti. 🐘

· People with recent COVID-19 at higher risk for other viral and bacterial infections
· A 15-day course of #Paxlovid did not “significantly improve health outcomes in participants with #LongCOVID
· 2. study showed that Paxlovid taken within 5 days of infection with COVID-19 did help with the acute phase of COVID-19 in children
· Rapamycin, a drug used for organ transplants, may help alleviate symptoms of myalgic encephalomyelitis #MECFS

thesicktimes.org/2025/04/08/re

The Sick Times - Chronicling the Long Covid crisis · Research updates, April 8 - The Sick TimesPeople who recently had COVID-19 are at higher risk for other viral and bacterial infections, according to a paper published in The Lancet Infectious Diseases. The researchers used Veterans Affairs electronic health records from over 800,000 people, and compared infection history between those who had a positive COVID-19 test and those who did not. Those who tested positive had higher rates of bacterial and viral infections, including Epstein-Barr virus and seasonal respiratory viruses, in the year following their COVID-19 diagnosis.
#ResearchUpdates#COVID19
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Tom Kindlon

"Does Paxlovid reduce #longCOVID symptoms? Yale-led trial finds out"
eurekalert.org/news-releases/1

"PAX LC team pioneered a novel, decentralized design that brought the trial into 100 participants’ homes...first fully decentralized phase 2 trial of its scale"

Method could be useful in #MEcfs

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @mecfs

News Release 7-Apr-2025 Does Paxlovid reduce long COVID symptoms? Yale-led trial finds out Peer-Reviewed Publication Yale University Antiviral medications nirmatrelvir/ritonavir (Paxlovid) were not effective in relieving long COVID symptoms, according to a new study published in The Lancet Infectious Diseases on April 3. The findings came from the Yale Paxlovid for Long COVID (PAX LC) Trial, led by principal investigator Dr. Harlan Krumholz, Harold H. Hines, Jr. Professor of Medicine (Cardiology), and Akiko Iwasaki, Sterling Professor of Immunobiology. The phase 2 investigational new drug clinical trial tested whether a 15-day course of Paxlovid, an FDA-approved antiviral for acute COVID-19, could also help long COVID patients. The PAX LC team pioneered a novel, decentralized design that brought the trial into 100 participants’ homes around the nation. It’s the first fully decentralized phase 2 trial of its scale, the researchers say.
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