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None of those out there discussing or doing nothing (politicians) or ignoring (doctors & politicians) have the faintest idea what it's like trying to survive every damn day (& night) with this crap alone. #NONE! No survival possible. #MEcfs #FQToxicity #CCI #PoTS #SmallFiber
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Irgendwann muß ich als #MECFS-Betroffener mal einen Thread darüber schreiben, was mich, seit dem "Auftauchen" von Long Covid und wie damit (im Vergleich zu ME/CFS) umgegangen wird, für Gefühle umtreiben und was ich von vielen Akteuren auf dem Feld so halte. Aber ich weiß jetzt...
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@tomkindlon@disabled.social retweeted
2/2 The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last 0.5 hour. Both of the monthly support groups are designed to include people with #MECFS, #FM, #LongCOVID, & co-existing conditions. We also welcome supporters & loved ones.
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Marit Skotheim retweeted
Replying to @StenHelmfrid
In reality the previous nice guideline was based on CBT activism and #OpinionBasedMedicine by psychiatrists who’ve come up with all sorts of nonsense to prevent their kingdom of fairytale medicine from imploding #PACEtrial #MEcfs #LongCovid #MedTwitter
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This is utterly ridiculous. The Dutch goverment has further LOWERED its investment into Long Covid research from 10 million to 2 million Euros. We, #LongCovid patients, are truly disposable in our everyday misery... no words. @MinVWS #CovidIsntOver #MECFS
Weet je nog dat amendement op de VWS-begroting, 10 miljoen voor #LongCovid onderzoek? Heel de oppositie voor. Nu verlaagd, 2 miljoen. Druk achter de schermen vanuit coalitie? En patienten dan, of de economische ramp die Long Covid is? Kan Rutte 4 negeren tot verkiezingen 2025?
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How Should Clinicians Minimize Harms and Maximize Benefits When Diagnosing and Treating Disorders Without Biomarkers? journalofethics.ama-assn.org… Must read for #MedTwitter #chronicillness #chronicpain #NEISvoid #Fibromyalgia #MECFS #LongCovid #PostVac
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今日は青い重機をお届けします😃 * 筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。 * #ブルーフォトチャレンジ #筋痛性脳脊髄炎 #笑顔の花びら集めたい #5月12日 #mecfs #bluephotochallenge
BishBash retweeted
literally goes on. I don’t know how I’ll EVER forgive these people for the way they have gaslit me and denied my illness. I am SO angry. I went from a normal healthy 29 year old to a now bed-bound 31 year old and no one seems to bat an eyelid. #LongCovid #MECFS #POTS
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Wim Ftw retweeted
My mom showed me an email my psychiatrist sent her. He says that my medical illness has evolved into a “somatoform disorder” and sent her links to DBT therapy, psychiatric institutes, physical therapy, and life coaches. WTF. #MECFS #SevereME #pwME #LongCovid
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Gry Osen Øverli 🇳🇴 retweeted
Håper dere ser måten @SFlottorp fra @Folkehelseinst bedriver sin aktivisme for kvakksalvermetoder på #mecfs-pasienter, @SeherAydar @mimirk @TuvaMoflag @CecilieMyrseth Vi kan ikke ha et sånt institutt.
Jeg håper ikke at dette er måten du mener @Folkehelseinst skal drive på for å presse igjennom studier med dårlig design, @Prebens #mecfs
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Fragen/über/Fragen 😷 4 x 💉 retweeted
Unangenehm, wenn Menschen erzählen was ihre Bekannten alles so ~trotz~ ihrer chronischen Erkrankung machen. Was dabei vergessen wird: Mit #MEcfs ist man unbehandelt chronisch krank. Für viele chronische Krankheiten ist es mit Behandlung schon schwierig Dinge zu tun. 1/2
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Paula Wilson retweeted
On the days you only had 20% to give and you gave 20%, you gave everything you had. On other days, you borrowed 5% or 10% from tomorrow. And that means you gave more than you had. Be kind to yourself. Be kind always. #spoonie #MultipleSclerosis #chronicillness #MECFS #neisvoid
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Kevo225 retweeted
Friday Facts #MECFS What costs are your family, friends, neighbors and community incurring? @alwaystirednfts we are helping raise awareness and support for those affected by this condition. #TiredAF #SleepyHeads @PlzSolveCFS @mecfsambassador @pausedME @cfs_research
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R&K ME Group retweeted
The Big Give Christmas Challenge 2022 is now LIVE. Donate now and the first £7000 will be DOUBLED from our pledge pot of £7000 with all monies donated invested in ME research. bit.ly/3Ew4WWM #pwME #MECFS
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Jay BomSenhor retweeted
Went to see @MrNishKumar last night at the Sydney Opera House… Bet you’re #TiredAF after a great show and tonnes of energy! Thanks for the laughs, funny AF!! Greetings from #SleepyHeads #DownUnder 🤙🏽 #SNOOZE #MECFS @alwaystirednfts
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