Here for research and info on #LongCovid #MECFS #ChronicMigraine #MCS #MCAS #ChronicPain #neuroscience #psychology, tweets German & English
Nov 20 • 40 tweets • 22 min read
Dear Medical Doctors, if you want to help patients with complex chronic diseases (and they sincerely need your support!), here are some important wishes from a patient’s perspective.
1/1. Believe the patients
Believe them their perception, their symptoms, their adverse reactions to treatments, their degree of suffering. They are the experts for their own symptoms. They know their bodies and reactions better than anyone else.
Nov 20 • 36 tweets • 0 min read
Sep 30 • 6 tweets • 4 min read
@Jacob2dash2@long_covid I understand your surprise. It is so counterintuitive. But millions of #ME/CFS patients can tell endless stories of post-exertional malaise/crashes that can go as far as leading to permanent severe disability. 1/@Jacob2dash2@long_covid You are right. There has to be a better solution. But that will require massive research, recognition by HCP, health authorities etc., listening to and learning from the many ME/CFS patients who have often dealt with their debilitating symptoms for years or even decades, … 2/
Sep 30 • 15 tweets • 16 min read
Da die Frage aufkam, wie stark die „strong recommendation“ der @WHO bezüglich
„KEIN SPORT oder KÖRPERLICHE BELASTUNG bei BELASTUNGSINTOLERANZ bei #LongCovid Betroffenen“
zu verstehen ist, habe ich dazu etwas recherchiert und finde das Ergebnis vielversprechend. ⬇️
In Kürze: Die WHO-Empfehlung „KEIN SPORT bei PEM/PESE“ entspricht der Stärke der Empfehlung für Antibiotika bei Lungenentzündung, für Blutverdünner bei Thrombose oder Rauchen aufzuhören zum Schutz vor Tabakschäden = sehr starke Empfehlung!
Details und Quellenangaben im 🧵⬇️
Sep 30 • 13 tweets • 19 min read
As the question came up how strong of a recommendation the WHO‘s “strong recommendation“ for NO EXERCISE in LONGCOVID patients with PEM/PESE is, I had a look into it and found the result reassuring and promising. ⬇️
In short: WHO‘s “NO EXERCISE with PEM/PESE“ recommendation is on the same level as recommending antibiotics for pneumonia, blood-thinners for thrombosis or quitting smoking to prevent damage from tobacco. It truly is a strong recommendation!
Details and references in 🧵⬇️
Sep 23 • 18 tweets • 27 min read
Finally! New @WHO guideline specifies: NO EXERCISE THERAPY for #PostCovid patients if they suffer from POST-EXERTIONAL SYMPTOM EXACERBATION.
Hope this will protect more patients from becoming bedbound by wrongly applied #rehab measures like GET
For more info see 🧵⬇️
The new recommendations can be found in the WHO “Living Guideline for the clinical management of Covid-19” (publ. 09/15/22).