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There were high prevalences of fatigue (98%) and post-exertional malaise (worsening of symptoms after activity) at (89%). These went down over time, but ~73% of respondents in month 7 reported having post-exertional malaise. Charts a-c describe PEM/PENE severity/delay #pwme 12/
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NB Speaking for myself, but thinking that most #PwME will agree with me. I am not downplaying MS or #PwMS nor pitting the two diseases against each other. I/we just want some equity of biomedical research funds and medical care. #QoL #MedEd #MEcfs #NeuroTwitter
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Stella retweeted
I want to talk about mental health as a #pwME but not wanting it to be taken the wrong way/ twisted. I really do struggle with my #MentalHealth. The stigma around #MEcfs, I feel makes it so we don’t always talk about MH due to high chance of misinterpretation. ME worsened my MH
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Stella retweeted
News and research into MyalgicE healingcfsme.com/chronic-fat… #pwME
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Stella retweeted
ME/cfs drained me, and as today I don't even remember my healthy before. ME takes away your body, your soul, your memories. We need to keep fighting, be heard, and stay strong together. If I keep dreaming, then it's gonna be okay. #MECFS #pwME
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Stella retweeted
‘[CFS patients].. more sick.. than patients w chronic obstructive lung or cardiac disease' Dr. W Reeves #ME #pwme healingcfsme.com/quotes-chro…
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‘They do not know the degree of trauma that not only the illness, but also their lack of understanding has caused us’. Thank you @fearnley_k wise words as always #LongCovid #MECFS #MyalgicEncephalomyelitis #NEISvoid #PTSD #POTS #pwME #Lyme #Fibromyalgia #MCAS #EDS #vaccineinjured
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Nicht zum Schlafen (bin blöderweise Bauchschläfer, noch mal schlecht für HWS), sondern tagsüber bei TV, Handy oder Gesprächen. Jegliche Tipps sind herzlich willkommen 😊 #pwME #MECFS #ChronicIllness #ChronicPain #ChronischeSchmerzen #Schmerzen #Bettlägerigkeit #MillionsMissing
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I can't tell you how disappointed I am that phenergan isn't working for me. All I want is a good night's sleep 😕 they've upped the dose but still no joy. #NEISvoid #insomnia #histamine #mcas #pwME #Fibromyalgia #ADHD
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@davidtuller1⁩ on form massacring Trudie Chalder’s b*****ks ‘worry’ paper. People are slowly dying due to lack of biomedical investigations & treatment yet crap like this gets funded #pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #NEISvoid virology.ws/2022/01/28/trial…
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Julie Houston retweeted
And during #MEAwarenessHour I find out another sufferer has passed away. It always makes my heart hurt. ME is potentially fatal and yet we have no help. What other illness could you have, be so ill and say you haven’t seen a dr about it for 8 years? #pwME #AppropriateTreatment
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Two important announcements from #TeamClots: 1. We are VERY close to releasing our preprint from our November study in Mulheim 2. @VirusesImmunity will be collaborating with Dr Jaeger on some vital work. Watch this space #LongCovid #MECFS #MyalgicEncephalomyelitis #pwME #NEISvoid
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Carbonara - #fundraisingBC007MEcfs retweeted
Who has over-done it a bit lately? (Doing entirely normal things any human should be able to do…) #MECFS #pwME #LongCOVID
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Carbonara - #fundraisingBC007MEcfs retweeted
Für #MECFS-Erkrankte können Interviews aufgrund von PEM zu einer anhaltenden Zustandsverschlechterung führen. Wie JournalistInnen dies insb. bei schwer(st) erkrankten #pwME berücksichtigen können, liest sich nun im Pressebereich der Dt. Ges. für ME/CFS. 👉 mecfs.de/presse
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Madelinenerdfighter #MyDisabledLifeIsWorthy retweeted
finally found 2 40yrs+ #postviral people on Twitter! But we are a rare breed & I continue to say we are the Canary in a coal mine for #LongCovid my full story anchor.fm/i-am-madeline 1st 5 eps deep dive by respected journalists @AshDKelly & @byGawley. Rest is 1st person me #pwME
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Yep, the can't win for losing part of being #pwME
Ugh I've arrived to that point where deep rest is helping some with symptom alleviation (yay) but I'm also having pain & soreness from lack of movement (boo). Catch-22 of #MECFS. Experimenting w/ stretching w/ yoga strap, resistance band, but that also elevates my heart rate. 😧
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