Pelagie Eva @PelagieHortense Twitter profile

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Pelagie Eva

4 years

Choosing to not inform the public about the potential risk and consequences of #LongCovid is negligence. @ProfHGoossens @vanranstmarc @alexanderdecroo @BenWeyts @ZorgVlaanderen @sciensano #disgrace #neglicence #criminal

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Pelagie Eva

@PelagieHortense

3 months

Visiting my mum on intensive care and being attacked by a nurse for wearing a mask. Can it get any worse??? Trembling on my legs.

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Pelagie Eva

@PelagieHortense

2 years

🧵 1/There is a Dutch speaking patient group with long haulers from the 1st wave. They have been ill for two full years. They are not getting any better but worse. It is scary. Some of them have applied for euthanasia.

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Pelagie Eva

@PelagieHortense

2 years

Being infected in the hospital is like being robbed in the police station.

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Pelagie Eva

@PelagieHortense

2 years

Positive test. After 2 years and a half of long f covid I get this as a reward of not having a life? I don’t know where I caught it.

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Pelagie Eva

@PelagieHortense

2 years

3/ There is nothing vague about people who literally can’t lift their arms any more. Others can only walk with special aids. Some of them are loosing their sight. Fatigue is a misused word nowadays. People are not fatigued but incapacitated to do even the smallest tasks.

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Pelagie Eva

@PelagieHortense

2 years

2/While the media are telling people that symptoms of long haulers are vague and mysterious , a lot of research papers are being written and read, proving otherwise.

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Pelagie Eva

@PelagieHortense

2 years

4/They are getting diagnosed with cerebral hypo perfusion, orthostatic intolerance, POTS, Sjögren, MS, heart disease, ME, small fiber neuropathy, organ failure, scleroderma,…

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Pelagie Eva

@PelagieHortense

3 months

@Sandyboots2020 Same situation but different. My mum is having half of her lung removed tomorrow whilst the staff is not wearing masks.

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Pelagie Eva

@PelagieHortense

2 years

6/Everyone has an internet connection nowadays, yet people choose to remain safely embedded in the comfortable zone of ignorance; the virus has gone. Freedom.

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Pelagie Eva

@PelagieHortense

2 years

11/The fight against HIV reveals how important it is to make use of existing treatments and strategies for prevention, to strive for better ones. We need proper research, care and honest media coverage.

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Pelagie Eva

@PelagieHortense

3 months

@DSEDunn I already wrote a complaint when I saw masks are not worn on the oncology ward few weeks ago, same hospital. They don’t do anything about it. This is the new normal. The pandemic is ‘over’ and the policy is no masks. I think the media wouldn’t make anything of it.

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Pelagie Eva

@PelagieHortense

3 months

@TvandeIJsberg She asked me why I was wearing a mask. I told her we are in the middle of a pandemic. She kept saying we are past pandemic. I didn’t go into a discussion. I just left. Her attitude was awful. Thank you. My mother will be ok we hope.

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Pelagie Eva

@PelagieHortense

3 years

I am curious to know just how many of #LongCovid patients developed some form of #Dysautonomia #POTS ?

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Pelagie Eva

@PelagieHortense

3 years

Doodziek, booster in mijn geval afgeraden, en nu als kers op de taart: binnenblijven, ten allen tijde omdat anderen zich gevangen voelen door een papieren vodje voor hun mond.

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Pelagie Eva

@PelagieHortense

2 years

8/In the meanwhile those first long haulers don’t get any help. They are forced to help themselves. Some of them are ordering antivirals and other medicines online, from dodgy websites.

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Pelagie Eva

@PelagieHortense

2 years

5/Political leaders, media, doctors and most people around these patients are minimizing what they are going through.

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Pelagie Eva

@PelagieHortense

3 years

#LongCovid -ernstig ziek/invaliderend -ontneemt alles wat men deed of was -stigmatiserend -isolerend -zo goed als geen medische hulp -doodgezwegen dr politiek -foutieve berichtgeving media Noem me nog eens 1 ernstige ziekte waar je dit alles er gratis bij krijgt?

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Pelagie Eva

@PelagieHortense

2 years

7/People are wrongly getting told that Omicron is not that bad.

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Pelagie Eva

@PelagieHortense

2 years

9/Others are seeking treatment abroad. They are spending thousands of Euros without any guarantee that they will be cured. Most of them fear a complete recovery won’t be possible any more, after this time. But every little gain of health is welcome at this point.

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Pelagie Eva

@PelagieHortense

2 years

10/It has been 40 years since the first reports of what became known as AIDS. A 25 year old with AIDS had a life expectancy of less than 2 years, in 1985.

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Pelagie Eva

@PelagieHortense

5 months

So thankful, don’t know what is happening but can walk for a full hour each day. PEM seems to be less present. A miracle after more than 4 years!

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Pelagie Eva

@PelagieHortense

2 years

“We gaan stijging in ziekenhuisopnames zien en ook stijging van het aantal doden.” De kalmte waarmee die boodschap gebracht wordt zonder ook maar voor te stellen maatregelen te nemen, vind ik cringe. #MVR #BA5

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Pelagie Eva

@PelagieHortense

2 years

🧵 1/I often wonder myself: would it be different if the majority of seriously ill people, post covid would be men in the midst of their careers? Would there be more research? Would an alarm have gone off? #misogynie #longcovid #postviral

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Pelagie Eva

@PelagieHortense

3 months

@annitht Yesterday I told the doctor I was training for the Olympics. 😉 That sure made her think.

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Pelagie Eva

@PelagieHortense

3 months

@HarrySpoelstra @teambelgium And when does it get mandatory on oncology wards? I know, I keep saying the same thing over and over again. Just can’t get my head around it. 😷

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Pelagie Eva

@PelagieHortense

2 years

Vooroordeelbevestigend: Yogakleding winkeltje is nu ook postpunt. Verkoopster weigert een woord met me te wisselen zolang ik masker aan houd. Dan niet. Pakket afgegeven in silence. 😷 #wappiedag

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Pelagie Eva

@PelagieHortense

3 years

@jdceulaer Ik ben gevaccineerd maar ik sta open voor de meningen van anderen. En niet iedereen die niet gevaccineerd is is een “wappie”. Er zijn ook mensen met intelligentere redenen hiervoor. Ik vind het verkeerd om die bij de anti-vax te gooien. Maar wie ben ik?

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Pelagie Eva

@PelagieHortense

3 years

2de jaar Psychologie: geslaagd met de GrootsTE onderscheiding! Dan mag je toch al eens stoefen he. Dochters. 🤍🙆‍♀️

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Pelagie Eva

@PelagieHortense

2 years

@nicolebamber CT angio 6 months after covid showed cerebral aneurysm in the carotid. No one (even doctors) believed it could have been a result of covid. Now they do.

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Pelagie Eva

@PelagieHortense

2 years

@PlanetEarth_HD I have less to talk about. I kind of ‘gave up’ to inform others about it, to inform politicians and press. They have me where they wanted me: in a quiet corner, whilst the illness is progressing.

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Pelagie Eva

@PelagieHortense

8 months

4 years. #LongCovid

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Pelagie Eva

@PelagieHortense

2 years

3 today. Today is my Covidversary. #LongCovid

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Pelagie Eva

@PelagieHortense

3 years

@ManeeshJuneja Same over here. I refused and put their mask on top of my FFP3 🤓

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Pelagie Eva

@PelagieHortense

2 years

Nurse: “I also HAD long covid, I had some breathing issues and cough for 2 months”. That is not long covid, babe. Long covid is a chronic unbearable, vascular systemic auto immune disease to many. It is living hell. #LongCovid #NEISvoid

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Pelagie Eva

@PelagieHortense

1 month

I got carried over the threshold today. 🕊️🕊️🤍

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Pelagie Eva

@PelagieHortense

2 years

Good results from HBOT and or HELP apheresis. We will never know which one did the trick but my guess is both have helped me in the end. Hoping this is a sustainable improvement. 🤞 #LongCovid #HBOT #apheresis

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Pelagie Eva

@PelagieHortense

2 years

Wondering why I am on Twitter, talking about #LongCovid while the world is wishfully thinking the pandemic is history. People are kept unaware of how debilitating this disease can be. I am giving up. No longer preaching. #NEISvoid

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Pelagie Eva

@PelagieHortense

3 years

#LongCovid feels like a hangover, poisoned feeling, jetlagged with on top of that pain. Every single day. Don’t know if and how long I will be able to stand this. #POTS #SFN #SOS I don’t want to sound pathetic but we urgently need #research and treatment #TreatLongCovid

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Pelagie Eva

@PelagieHortense

1 year

@LongCovidHell Rinse nose and mouth repeatedly. Take baby aspirin, antihistamines, quercetin, vit C, Metformin, Olive leaf extract, nigella sativa. This is what I did my second time. Still sick from my first infection, but second one didn’t give me extra damage.

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Pelagie Eva

@PelagieHortense

3 years

@JetRoz 🤍 Gelijkaardig verhaal. #POTS #LongCovid Beschamelijk dat de medische wereld samen met de politici de andere kant uitkijken. Ook ik weet nu pas, na 18 mnd zélf ziek te zijn hoe #ME systematisch genegeerd wordt. Decennialang. Dit is geen “milde” ziekte!

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Pelagie Eva

@PelagieHortense

3 years

Why do I have the feeling MS is taken more serious by doctors and society than ME? How come MS is more known? Probably more research? But again: why? Does someone know? #ME #MS

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Pelagie Eva

@PelagieHortense

3 years

#TreatLongCovid It won’t magically disappear by not talking about it, by not counting the numbers, by not giving a damn and not funding enough research.

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Pelagie Eva

@PelagieHortense

2 years

At first long covid had nothing to do with covid; it was “anxiety induced”. Now hepatitis has nothing to do with covid; it is “lockdown induced”. What’s next? #shenanigans

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Pelagie Eva

@PelagieHortense

2 years

@torfsrik @Pedrozors11 De angst? Duizenden zijn hun levens kwijt. Jonge mensen geïnvalideerd door LC. U bent slecht geïnformeerd, Professor. Shame on you.

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Pelagie Eva

@PelagieHortense

2 years

I was in the hospital last Monday for an angiogram. I stayed one night. Nurses were coughing. They nearly wheeled a positive person next to me. But I thought incubation time was only 2-4 days? I didn’t go anywhere. Does someone know? Can incubation time of Omicron be longer?

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Pelagie Eva

@PelagieHortense

2 years

Don’t give up. Some people do get better #LongCovid Even after 2,5 years you can make steps forward.

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Pelagie Eva

@PelagieHortense

3 years

Nieuws: Uitnodiging om naar Mülheim te reizen ivm analyse microklonters en plaatjesactivatie + consultatie Prof. Jaeger. Eenvoudig microscopisch onderzoek wordt actief geweigerd in ons land. #apharesis #analyse #TeamClots #LongCovid #microclots

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Pelagie Eva

@PelagieHortense

2 years

GP called the hematologist department in university hospital about LC case. No one in this department is ‘interested’ in searching the blood of LC patients. Not interested. Just like that. Not interested in a vascular disease, micro clotting and platelet activation.

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Pelagie Eva

@PelagieHortense

3 years

Iedereen die dood en invaliditeit door covid accepteert, gaat er van uit dat de dood of #LongCovid anderen, niet zichzelf, zal overkomen. Zelfs onbewust is men bereid anderen kwaad te doen, onder het motto “maatregelen zijn moeilijk”. #endemisch #fouteboel

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Pelagie Eva

@PelagieHortense

3 years

To take no action is an action. #LongCovid

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Pelagie Eva

@PelagieHortense

2 years

LC brain fog means brain inflammation which leads to cognitive and physical disability. POTS means not being able to stand or sit up for a longer period. The combination of POTS and brain fog => a strongly reduced quality of life. #LongCovid is not a bit of fatigue.

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Pelagie Eva

@PelagieHortense

3 years

@Dan_Wyke @sibylle_berlin Problem is that most doctors don’t follow the research that has been done. No interest at all. We are left to suffer. #LongCovid

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Pelagie Eva

@PelagieHortense

3 years

Ik kon er vanmiddag nog jolig over doen, maar in feite is het om te huilen. De schuld wordt bij het individu gelegd. Blijkbaar is het probleem opgelost, als je het maar accepteert en de psychische toer op gaat. Ik voel me beledigd. Het is een fysiek probleem. #LongCovid #reva

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Pelagie Eva

@PelagieHortense

3 years

Exactly: “insulting our intelligence with CBT”. Also happening in #LongCovid rehabilitation classes. I left the building after we were told to draw a BIG SMILEY.

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Pelagie Eva

@PelagieHortense

2 years

@danaparish I don’t know. All I know is I had a bicycle ride about 8 weeks after my infection. And that ride was the start of LC.

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Pelagie Eva

@PelagieHortense

9 months

@MerianneJensen @1goodtern Lots of people got LC before vaccines existed. Get informed.

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Pelagie Eva

@PelagieHortense

3 years

@ErinSandersNP @ahandvanish Let’s start a buyers club then. #LongCovid

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Pelagie Eva

@PelagieHortense

3 years

@Dr2NisreenAlwan Nearly 17 months ill. Gaslighting has to stop. Doctors should be educated about post-viral illness. It is unbelievable that silencing can go on for such a long time. #countlongcovid

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Pelagie Eva

@PelagieHortense

3 months

@1goodtern I am still the lone masker over here (Belgium). Could do with some company :)

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Pelagie Eva

@PelagieHortense

3 months

@Chester727941 Oh right? I was infected again IN 2021 in the hospital after I already had long covid since March 2020. Don’t tell me about not getting sick!

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Pelagie Eva

@PelagieHortense

4 years

@Covid19Critical #IUseivermectin My partner used it. We both suffer from #LongCovid . Ivermectin was prescribed by a progressive thinking doctor. It helped my partner. No side effects. No more heavy legs and headaches. I will try it next week.

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Pelagie Eva

@PelagieHortense

3 years

Zeer moeilijk uit te leggen aan ouderen wat #LongCovid is. Kranten als The NY Times kunnen het. Wat is er mis met de NL-talige ‘kwaliteitskranten’? Schrijf verdorie eens een wetenschappelijk onderbouwd artikel. Of huur mij in: #POTS Vanuit liggende positie schrijven kan.

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Pelagie Eva

@PelagieHortense

2 years

@ar_pnw There is enough knowledge to at least experiment with existing drugs. I don’t get this medical inaction while economy will suffer from this. Traveling abroad at your own cost is the only option to get some treatment. I will never trust medicine any more like I did before.

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Pelagie Eva

@PelagieHortense

3 years

Voorheen sportief, #LongCovid : Aneurysma: breinstent, medische fout(stent had er niet moeten zitten,nu reeds vernauwd, interne buikbloeding angio), POTS, dunnevezelneuropathie en zeldzame bloedziekte. Twitterpauze en hopelijk ooit pauze uit deze hallucinante shit. Take care.

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Pelagie Eva

@PelagieHortense

3 years

Ik ben 1 van de 4 Belgen met #LongCovid Volgens Marc Van Ranst zijn ‘de aantallen daarover moeilijk te vinden’. #justsaying #talkswithmarc #niettelleniswinnen

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Pelagie Eva

@PelagieHortense

3 years

Omdat #LongCovid na 1,5 jaar nog steeds geen issue blijkt en ik met lede ogen aanzie hoe nu ook gezonde kinderen getroffen worden door dit non-beleid ga ik even afstand nemen. Draag zorg voor mekaar en de kinderen. #POTS #Dysautonomia #LongCovidKids ❤️

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Pelagie Eva

@PelagieHortense

2 years

@GreenJournal “52 % Improved with treatment”, “65 & continued receiving immunotherapy”… What treatment? Which immunotherapy? Where I live they send you home telling IVIG and other treatments are not available for people with long covid! #Belgium #diy

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Pelagie Eva

@PelagieHortense

1 year

Is this even real? No PEM after a walk in the forest 2 days ago? #LongCovid

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Pelagie Eva

@PelagieHortense

2 years

Special thank you to @resiapretorius for the good work. Without your work I would have still been much more sick. 🐎 #TeamClots Happy New Year.

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Pelagie Eva

@PelagieHortense

3 years

Dagboek van de zieke: Eerst was er covid, toen kwam long covid en het gebrek aan politieke en medische interesse. We ‘eindigen’ de pandemie officieel met de uitsluiting van de zieke en een korte verwijzing naar de 30 000 stille doden. Lijkt wel Poetiniaans, niet? #codegeel

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Pelagie Eva

@PelagieHortense

3 years

@tired_elle Vaccination PLUS masks PLUS avoiding crowded places PLUS ventilation.

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Pelagie Eva

@PelagieHortense

2 years

@MeetJess People don’t care about others. Others dying or getting sick doesn’t interest society. It is all about me me me…

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Pelagie Eva

@PelagieHortense

2 years

@ministerVWS @op1npo En de mensen die jaren uitvallen, of nooit nog beter worden? Daar al eens aan gedacht Ernst?

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Pelagie Eva

@PelagieHortense

4 years

Groeten uit het ziekenhuis. Mijn covid was niet erg toch? Ik had toch een “mild exemplaar”? Think again. 11 mnd na covid: 2de ziekenhuisopname voor ernstige hersens..t! #LongCovid

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Pelagie Eva

@PelagieHortense

9 months

@ChrisAlvino @drseanmullen Poisoned feeling in head. When I see people or do something fun I will feel bad almost immediately + next day I am in bed all day because of body aches and fatigue. I also have nerve tingling and numbness in fingers and sometimes my one leg fails.

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Pelagie Eva

@PelagieHortense

2 years

@drclairetaylor @DavidSYounger2 Indeed. Treatable with IVIG which will not be made available for people with LC. At least not where I live: Belgium.

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Pelagie Eva

@PelagieHortense

2 years

@D_Bone @Cameloasa1 No cures but at least some options. I made some improvement: blood thinners - antihistamines - Mestinon - betablockers - supplements - apheresis - HBOT - rest - time. Still trying out new meds. We are all our own doctors. It shouldn’t be like this. It’s a disgrace.

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Pelagie Eva

@PelagieHortense

2 years

1/Groeten vanuit een ziekenhuis waar men enkel mensen vanop spoed op COVID test en ze vervolgens achteloos naast kwetsbare mensen poogt te leggen.

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Pelagie Eva

@PelagieHortense

2 years

How are we going to live the rest of this life if we don’t get any better? Living like a pensioner at 47 is not what I anticipated. 2 years and a half into #LongCovid is eating away my soul. How do you all do this? #POTS #smallfiber

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Pelagie Eva

@PelagieHortense

2 years

@PlanetEarth_HD Sam thing over here. There is nothing for us.

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Pelagie Eva

@PelagieHortense

3 years

@De7deDag @vanranstmarc Lees ik hier iets nieuws?? Ieder mens met een klein klein beetje verstand weet dat het te vroeg is.

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Pelagie Eva

@PelagieHortense

3 years

Want to become unpopular? 1/Get really sick for more than a year and a half from a virus that took away freedom. 2/Talk about it. 3/Ask for treatment. 4/Treatment does not exist?? 5/It is progressive?? 6/Advocate for research #unpopular #LongCovid #SFN #POTS #ME #research

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Pelagie Eva

@PelagieHortense

3 years

Please send me all information on micro clotting. I have @resiapretorius pre print only. All info is welcome. My GP and I are trying to convince hospitals to look for micro clots under microscope. Thank you. #LongCovid

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Pelagie Eva

@PelagieHortense

4 years

Vandaag gehoord dat er aan ouders en leerkrachten werd gevraagd om zeker niets te vertellen over besmette kinderen aan andere ouders van hetzelfde klasje. Wie is hier de schuldige? De directeur of het CLB? Of @Benweyts ? #ongehoord #crimineel

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Pelagie Eva

@PelagieHortense

3 years

@LauraMiers I feel like there is cold water running through my brain, every night.

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Pelagie Eva

@PelagieHortense

4 years

@ManeeshJuneja Any exertion, whether cognitive, physical or emotional can wipe me out for 2-3 days. When I am better I have to remind myself that I can’t do much. It is easy to forget and then overdo it again... It is like driving with brakes on.

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Pelagie Eva

@PelagieHortense

8 months

@Donski1 @LongCovid I did all of the things you mentioned but I am getting worse again.

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Pelagie Eva

@PelagieHortense

2 years

How many more suicides before you wear your mask? #LongCovid #cruelillness

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Pelagie Eva

@PelagieHortense

2 years

Lesgeven met covid is het nieuwe normaal. Hoorde net van een kennis dat de leraressen positief naar school gaan. #onderwijs #COVID19 #deschaamtevoorbij

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Pelagie Eva

@PelagieHortense

3 years

Ik weet niet welk werk jullie zoal doen? 🙃🐇 #thuiswerken

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Pelagie Eva

@PelagieHortense

3 months

'Covidsymptomen als puur psychologisch wegzetten is een ernstige beroepsfout'

Sophie, een 43-jarige juriste, moeder van twee kinderen en succesvolle consultant voor overheden en NGO's, werd helemaal in het begin van de eerste golf

www.knack.be

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Pelagie Eva

@PelagieHortense

2 years

Vanaf nu mag je je medemens in de ziekenhuizen besmetten. Nieuwe varianten? 10de golf? Meer langdurig zieken in de toekomst? Geen enkel probleem. Onze Minister van Gezondheid geeft niet om uw gezondheid.

UZ Gent

@uzgent

2 years

Kom je binnenkort naar ons ziekenhuis? Dan hoef je niet langer een mondmasker te dragen 😷 Je zorgverlener zal tijdens de consultatie of behandeling wel nog een masker dragen om jou te beschermen. Je vindt steeds alle richtlijnen op #gent #mondmasker

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Pelagie Eva

@PelagieHortense

4 years

Laptops @BenWeyts ?? Voor wat dienden die? Hallo?? We zitten in de 21ste eeuw. Digitaal onderwijs is mogelijk. #gezondheidscrisis #onderwijs #nalatigheid #crimineel

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Pelagie Eva

@PelagieHortense

3 years

#LongCovid Iedere dag opnieuw jezelf proberen uit te vinden. Niks helpt. Fysio niet, doseren niet. Niks is zeker. Je weet niet hoe je je het komende uur gaat voelen. En net nu zijn artsen geen artsen meer, weten ze niks. Ik wil niet zielig zijn. Ik ben niet alleen. Het is op.

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