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Es ist bislang ja nur eine Hypothese, dass man durch frühzeitiges #Pacing die sog. "Chronifizierung" von #PVFS mit #PEM zu #MECFS verhindern kann. MMn ist das unklar, könnte genauso gut von Anfang an #MECFS sein. Dann könnte man durch #Pacing "nur" den Verlauf beeinflussen.
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Replying to @FarazFallahi
Ein guter Freund, der sich über 1 Jahr nur sehr langsam von Corona erholte, hatte auch in Form von PEM die Rechnung bekommen, wenn er über seine Grenzen ging. Trotzdem hatte er nie #MyalgicE. Inzwischen ist er fast genesen. #PVFS halt.
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Replying to @FarazFallahi
Sorry, aber ich geb auf solche Zahlen gar nichts. Viele #LongCovid Patienten werden nach teils langer Zeit wieder gesund, was für #PVFS typisch ist. Ist Gott sei Dank nicht alles #MyalgicEncephalomyelitis. 👇
For the Long-COVID community, a very interesting pattern is emerging from our COVIDOM cohort analysis suggesting not every Long-COVID is ME. Hopefully results will be clearer once we cross 350 sample mark. The question remains – Which is first Chicken or EGG? Crossing my fingers.
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Ich frage hier aber nach keiner Studie zu #pvfs
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Wie sollte in so einer Studie #PVFS von #MEcfs unterschieden werden, wo doch keine klare Kriterien benützt werden? #PVFS wurde schon vor #Corona nicht von #MEcfs differenziert.
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Da Chronically Illest retweeted
Some healthy people won't have the luck of fighting off the Corona Virus or dying from it. They'll develop M.E/CFS and life as they knew it will change forever. Unless a cure is ever had. #coronavirus #PVFS/CFS/M.E #meawareness #fundresearch
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3/ “'Long Haul Voices highlights how people with #ME/#CFS and #LongCovid can share their journey to improve the management and understanding of these diseases across the world,' said Oved Amitay, president and CEO, Solve M.E.” #MEcfs #PwLC #postviralillness #CFIDS #CFSME #PVFS
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Barbi B 🥄 #Spoonie retweeted
2/ "There were no significant differences in ME/#CFS symptom prevalence between the long-haul COVID-19 patients & the ME/CFS patients." #longhaulers #LongCovid #Covidlonghaulers #PVFS #postviralillness #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #MyalgicE #PwME #MyE
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Myalgic Encephalomyelitis #ME #MEcfs #PVFS causes debilitating symptoms every day. At its worst it is totally incapacitating. Millions missing from society. ME can last years or a lifetime. Patients have been let down for decades. There is no treatment, no cure #MEAwarenessDay
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Myalgic Encephalomyelitis #MEcfs can affect anyone, any age. Symptoms are debilitating and life stops I got a virus 18yrs ago. Diagnosed with post viral fatigue syndrome #PVFS later Chronic fatigue syndrome #CFS #ME I never recovered. One of #MillionsMissing #MEAwarenessDay
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I never know how to answer that question Dr WW considers the #Sepsis infection, which caused #MECFS, as a 'relapse'. This brings on interesting questions for those who 'recover' from #PVFS about relapsing/remitting possibilities Shall I say > 9 years?
Anniversary- 26June2001 I caught a Virus #PostViral #ChronicFatigueSyndrome I am one of the lucky ones who improved after #PVFS Shame #sepsis interfered 30Aug2013 #PostSepsis #MyalgicEncephalomyelitis 20 years experience 8 yrs managing new normal nitter.moooi.jp/meactnetuk/sta
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Lisa Tregale retweeted
2/2 To find out more about ME/CFS and #PostViralFatigueSyndrome (PVFS), please see our free leaflet - ME/CFS/PVFS – Your Questions Answered: meassociation.org.uk/huvn #pwME #MECFS #MyalgicE #PVFS #MEAwarenessWeek2022 #MEAW2022
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2/2 Only offer CBT to adults, children, and young people with ME/CFS if, after discussing it they would like to use it to support them in managing their symptoms. Full NICE Guideline: nice.org.uk/guidance/ng206/ #pwME #MECFS #MyalgicE #PVFS #MEAwarenessWeek2022 #MEAW2022
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