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Miya 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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Ich könnte sowas von... #MECFS ist kein Grund nicht mindestens 6 Std am Tag zu arbeiten,auch alles andere nicht!Und sowieso ist ein CRP von 1.27(>0.50) ein Normalwert und sowieso können Hypochonder arbeiten! (1/2)
Never forget: If #ME #SmallFiber #PoTS #Dysautonomia #MCAS etc. had been taken seriously in the past, there would also be a treatment for #LongCovid today. The same for #PostVac #FQToxicity. But human lives don't seem to count. #FridayAfternoon #MEcfs #ThinkingOfLisa🖤
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Minismental retweeted
Es gibt ein noch nicht zugelassenes Medikament, welches bei #MECFS und #LongCovid helfen könnte. BC007. Zur Erinnerung: MECFS ist die schlimmste Form von LongCovid und potentiell tödlich. Eine Notfallzulassung wie bei den Corona Impfstoffen, wird hier aber nicht realisiert. 1/2
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Replying to @neurostingl
Bei Kindern und Alten dürfte die Dunkelziffer an #MEcfs höher sein. Bei kranken Kindern extreme Ignoranz, bei Alten wird die Symptomatik aufs Alter geschoben. Eine Vorstufe von MEcfs sollte auch berücksichtigt werden.
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So sorry to see @sajidjavid stepping down. Please, Mr Javid, before you leave parliament finish the good work you started for the #MECFS community and make sure the government follows through with a game changing delivery plan for #MECFS.
After much reflection I have decided that I will not be standing again at the next General Election. Serving as the Member of Parliament for Bromsgrove remains an incredible privilege, and I will continue to support the Government and the causes I believe in.
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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It's a sobering experience to realize that there are large areas of medicine that are deeply unserious, superstitious and just plain weird. It explains everything about why #LongCovid, and #MEcfs before, are handled so disastrously.
Where is the mention of the fact that SARS-CoV-2 infection can cause brain inflammation and kill brain cells?
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SølvMare📎🏳️‍🌈 🤶 retweeted
Jeg håper ikke at dette er måten du mener @Folkehelseinst skal drive på for å presse igjennom studier med dårlig design, @Prebens #mecfs
Nå har jeg lest dette litt mer grundig, og kommer med litt refleksjoner her (se bilder med gule markeringer)
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Lodge_cat tired 💉³ 😷 retweeted
1/3 Kindern+ Jugendliche, deren Beine "wegknicken", die unsägliche Kopfschmerzen haben, plötzlich Licht+Geräusch-empfindlich sind,von jetzt auf gleich entkräftet zusammen sacken, treffen zu häufig auf Kinderärzte,die diesen jungen Menschen nicht glauben:#MECFS und #LongCovidKids.
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Replying to @KunstJonas
That’s what worries me most about #covid as someone who already became sick with #mecfs yrs ago after EBV and who recently was also diagnosed with low immunoglobulins #CovidIsNotOver for anyone especially ppl like me. It should matter. I should matter @CDCDirector @CDCgov 😷
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Ruth Lampard 💛💙 retweeted
Just finished ⁦@r_prior⁩’s book which contains crucial reporting on early efforts to name / understand #longcovid and explores the potential connections to #lyme and #mecfs. I always feel a lot of grief reading other accounts of illness - but there is hope here too. 💙🙏🏻
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