Guus @guustweet Twitter profile | Pikagi

Pikagi

Guus

@guustweet

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#LongCovid since jan’21 ♿️ - tweets with brain fog, so pls bear with me - 📣 tries to advocate @NietHersteld - eager to learn - she/her - tweets in 🇬🇧 & 🇳🇱

https://t.co/WvydFjQDdh

Joined September 2011

Don't wanna be here? Send us removal request.

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@guustweet

Guus

11 months

This is🧵of some of the threads that I have made. (in 🇬🇧 & 🇳🇱) I became active on twitter because of falling ill with #LongCovid . I’m mainly here to stay in touch with the community, to keep up with research and to advocate. 📣 Some of the stuff that I have posted on here👇🏻

@guustweet

Guus

1 year

I was recently asked to make a picture of my situation. Took the picture, looked at it and turned to my mom: “Isn’t this a bit extreme?” She: “This is what you regularly look like.” Which was a bit confronting to me as I do not often see it this way I think. #LongCovid

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@guustweet

Guus

6 months

Lauren passed away at 1.55 pm. She past quickly and peacefully. ❤️‍🩹🕯️ We will miss you so much lieve Lauren. 💛 #DagLieveLauren #ReMEmberLauren #MECFS

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Guus

6 months

Fuck guys. My friend is gone 😞 Still doesn’t feel real. I can’t believe that if I send her a message now that she will not respond anymore. I will miss her so much.

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Guus

1 year

I was recently asked to make a picture of my situation. Took the picture, looked at it and turned to my mom: “Isn’t this a bit extreme?” She: “This is what you regularly look like.” Which was a bit confronting to me as I do not often see it this way I think. #LongCovid

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Guus

6 months

Om 13:55u is Lauren overleden. Het ging rustig en snel. ❤️‍🩹🕯️ We gaan je zo erg missen lieve Lauren. 💛 #DagLieveLauren #ReMEmberLauren #MECFS

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Guus

10 months

What are your tips for hobbies for people with ability level ‘barely existing, always horizontal.’ ? Asking for me. I need a new hobby. Being alone with my thoughts all the time is becoming exhausting and boring. #LongCovid

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Guus

6 months

The little spot I made for Lauren. It’s over the top and funny (the bananas are an inside joke). This colour green was one of her favourite colours. Just like pastel pink for the 🌸. I showed it to her and she loved it, she liked the aesthetic. #DagLieveLauren #ReMEmberLauren

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Guus

1 year

This is not what life at 25 should look like. I haven’t been able to leave the house for months. I miss the little things, I miss the big things. I miss living. This disease affects millions. We need more research now. #LongCovid #LongCovidAwarenessDay 📷 by Lin Woldendorp

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Guus

7 months

“This is what disability advocates have said all along, not that it usually sinks in: The able and the disabled aren’t two different kinds of people but the same people at different times.” Really great piece of writing. 👇🏻

@NYMag

New York Magazine

7 months

"I had my health. I had a job. And then, abruptly, I didn't," @tomscocca writes. The writer and editor writes about his journey that began with a mysterious swelling in his joints, then low blood-oxygen levels, and then an alarming muscle weakness.

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Guus

1 year

“Plague! We are in the middle of a f*cking plague! And you behave like this? Plague! 40 million infected people is a f*cking plague!! And nobody acts as it is.“ I think about this fragment often since I watched ‘How To Survive A Plague’ How many more will get #LongCovid ?

@nowthisimpact

NowThis Impact

4 years

’40 million people is a f*cking plague’ — Watch Larry Kramer speak out against AIDS inaction in 1991. Kramer died this week at 84

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Guus

1 year

Weird realisation. I used to use this keychain every single day. It was always with me. Had my house keys, my bike key, etc. All my keys. Now it is empty. I simply do not use keys anymore… #LongCovid 🧵 under this tweet more unused things I used to use.

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Guus

1 month

After 1,5 week of isolation I seem to have dodged getting a second covid infection. #LongCovid I am currently really struggling with finding words and making sentences, not being able to say things how I would like to, but I wanted to post something. 🧵

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Guus

6 months

26 today. Birthdays with illness can be hard. Birthdays when you have also just lost a friend may be even harder. But it also felt like the more reasons for me to not just let it pass, but to try to make a little moment of it, celebrate, 🧵 #LongCovid

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Guus

6 months

Lauren is that friend that sends you a handwritten card and a little parcel on the day of her funeral. So thoughtful and loving. 🥹😭💛

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Guus

9 months

I often wonder what keeps people with #LongCovid & #MECFS going. I think it’s the immense lust for life that people have, they want to live so bad - yet so often they’re judged as the problem being them not having any lust for life anymore. It’s such a painful misinterpretation.

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Guus

6 months

I’d hoped that I would sleep all day today. I took the highest dose of calming meds that I am aloud to take. But I woke up ‘early’ and cried immediately. Crushing heavy feeling immediately. Today is the first day that Lauren is not alive and I so don’t want that to be the case.

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Guus

6 months

Today is my dear friend Lauren’s funeral. She passed away last Saturday. She was 28. Lauren had #MECFS and fought for advocacy. Her blog: If you have the means, you could donate in her honour,to help move research into ME forward:

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Guus

10 months

It was shower day today. I shower as flat as possible in the bath, once a week. Was looking forward to feeling fresh again but I now feel so so ill afterwards. Collapsed neck feeling, heart beating in my head, nausea. Wondering if once a week is becoming too much #LongCovid

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Guus

10 months

Yellow is geslaagd! De ‘L’ is van het dekje af, ze is nu officieel een geaccrediteerde hulphond. 🎉🌻

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Guus

2 years

Appointment with ME specialist: I meet the ME criteria. Table tilt test: I have orthostatic intolerance. #LongCovid I already knew this would be the outcome but still thought I was making it all up. Writing this in tears: glad to finally be believed and tested, but also:/

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Guus

5 months

Very special visitors today! 💛 Today Lauren’s parents came to visit me! They happened to be in the neighbourhood so asked if they could come round. 🧵

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Guus

2 years

#ZiekBOOS Ik heb inhoudelijk nog niet echt gedeeld over hoe het beloop van Long Covid bij mij is geweest. Dus bij deze. Ik raakte besmet in jan’21, inmiddels voldoe ik aan de ME criteria, gaat er als ik sta 33% minder bloed naar mijn hoofd en ben ik bijna volledig huisgebonden🧵/

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Guus

1 year

One of the hardest things of this disease is that I feel like so am not able to fully express my personality anymore. I am simultaneously living without existing and existing without living. #LongCovidAwarenessDay #NotRecovered #LongCovid

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Guus

10 months

Sometimes #LongCovid is merely existing as time passes by.

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Guus

1 year

So yeah, that were some pictures from my ‘living loss’ I guess. I think people often don’t realise how confronting it can be to see things that remind you of all you are no longer able to do. The ongoing grief. This disease is unimaginable #LongCovid sucks.

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Guus

3 months

spot on. #MECFS #LongCovid

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Guus

6 months

Her humour was 🔥 I have laughed so hard these last days. And cried lots as well, but all the time she made me laugh. One moment I was crying, one moment I was laughing. It was so great to have that sort of communication. Such a great quality of hers! Going to miss it so much.

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@guustweet

Guus

23 days

Y’all masking?

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@phi_psd

Phi

23 days

Y’all masking?

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Guus

10 months

Mijn laatste keer uit huis was 3 juli, ik ging met liggend vervoer naar het ziekenhuis. Daarvoor was het 11 december, toen wilde ik mee een kerstboom halen. Na 3,5 jaar is er vanavond eindelijk een debat over #LongCovid daarom een 🧵👇🏻 #VerborgenPandemie 1/

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Guus

8 months

It’s been a year. #LongCovid 11 December 2022 was the last time I left the house myself. The only other time was in July when I went to the hospital with horizontal transport. I can’t believe it has been a year. I never thought that this was possible. 🧵

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Guus

6 months

My dear friend Lauren will leave us this saturday 💔 She is getting euthanasia because her suffering with #SevereME has become unbearable. I will miss her so much, but she deserves rest. We will let her go in love! ❤️‍🩹💛 Get to know her on her blog👇🏻

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Guus

1 year

Anyone else ever panicking about how the hell they will every have a life? #LongCovid

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Guus

2 months

I am loving the memes to get @iamjohnoliver and @jonstewart to cover the #GreatestMEdicalScandal #JohnVsJonVsME

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Guus

1 month

‘None of our 50 patients got their old life back with time and treatment.’ From a paper on Long SARS. #LongCovid

@FvRhijn

Fen, MD

1 month

@StilingJason This paper never fails to hit me right in the feels.

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Guus

7 months

'Als je leven geen geschenk meer is, mag je het teruggeven' Mijn lieve vriendin @dutchlauren zal binnenkort deze wereld verlaten vanwege ondragelijk lijden door ernstige ME. Ze vertelt erover in dit artikel. (Euthanasie) Mooi stuk. Mooi mens. 💛

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Laatste oud en nieuw voor Lauren (28): 'Nog één oliebol met mijn ouders, dan is het goed'

Samen met haar ouders voor de laatste keer een oliebol eten, een potje 30 Seconds met haar beste vriendin. Dat zijn vandaag de wensen van Lauren Hoeve (28). Ze heeft de multisysteemziekte ME en ligt...

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@guustweet

Guus

1 year

This picture was taken exactly 1 year ago. Last summer I was still able to go outside for some short moments a couple of times. My mom drove me to a place in nature and I would sit against the car. We mostly went during golden hour. These were my favourite moments. #LongCovid

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Guus

2 years

Over een maand ben ik 2 jaar ziek. 😔 Geloof me, #LongCovid wil je niet. Als ik kijk hoe hard ik achteruit dender ben ik bang voor hoe het verder gaat. Stay safe tijdens de feestdagen!

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Guus

3 months

sometimes the realisation that I will probably lose my whole 20s comes creeping in. the fact that this disease is doing that to whole generations: making them lose their 20s, 30s and even worse their childhood (!) when will we take this life wrecking disease serious? #LongCovid

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Guus

28 days

Today is @dutchlauren ’s birthday. Her mom sent a video. Together with some family and friends she was at her grave, eating cake: ‘We are celebrating Lauren’s life!’ I miss her, but also feel so proud of her today. She has done so much for the ME community and her legacy stays.

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Guus

1 year

My ‘it’s psychosomatic’ Long Covid hands y’all. 🙃 #LongCovid

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Guus

1 year

I was 22 when I got #LongCovid and I am now 25. I don’t know what my future will look like. Please stay safe. Protect yourself and keep others safe. Our health is really not something we should gamble with.

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Guus

11 months

En dit is waarom we moeten blijven testen mensen. Mijn broer zou vanavond komen, heeft geen klachten etc, maar test als hij komt vanwege mijn gezondheid ( #LongCovid ) en nu is ie positief. Wat een rotzooi 😞

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Guus

6 months

‘Verlichting van symptomen is geen genezing, dus hebben patiënten er niks aan.’ zegt gezondheidseconoom Wim Groot nu op @NPORadio1 Deze zin is heel veelzeggend over hoe we naar ziekte kijken.. Zolang genezing niet mogelijk is, is symptoombestrijding onwijs waardevol. #LongCovid

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Guus

4 months

Time to throw this one on here again. #MECFS #LongCovid

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Guus

6 months

Lauren wrote a blog about everything to do with her ME, euthanasia, etc. She documented a lot and really wanted to leave something for the community, sharing what she wanted people to think about, learn, etc 💛 #ReMEmberLauren #DagLieveLauren #MECFS

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mijn leven & dood met myalgische encefalomyelitis

hersenmist.wordpress.com

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Guus

10 months

Wasn’t expecting this post to get so many comments. I don’t have the energy to soon respond and read them all. I’m on the more severe side so most things will be too much for me but pls know that I really really appreciate all this!! 💛💛Must be something in there that I can try!

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Guus

7 months

We stuurden #LongCovid patiënten massaal naar de ‘herstel’zorg - massaal gingen we achteruit in onze gezondheid. Patiënten met #MECVS moesten toekijken en probeerden er alles aan te doen om #LongCovid patiënten te behoeden. 🧵 Artikel:

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Guus

1 year

Gaaf land hoor, waar oversterfte een financiële meevaller is… “Het kabinet geeft daarnaast minder uit aan uitkeringen. Door de oversterfte is er bijvoorbeeld een meevaller van ruim 250 miljoen bij de AOW.” Tot zover de waarde van mensenlevens.

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Voorjaarsnota: Coalitiepartijen scharen zich achter Voorjaarsnota • Linkse oppositie hekelt...

www.volkskrant.nl

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Guus

7 months

Today marks 3 years of #LongCovid for me. I jokingly made this fake LinkedIn post as managing this disease and everything that comes with it sometimes feels as if I have unwantedly enrolled in some kind of studies about post acute infectious diseases 🧵👇🏻

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Guus

7 months

Merry Christmas friends! x🎄

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Guus

6 months

One of the cruelest things of this disease is that when you express emotions, pain, grief etc - you get even sicker. You become more miserable just because you expressed your feelings. How do you cope when something like crying costs you some of your health? #LongCovid #MECFS

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Guus

2 years

Vandaag hebben mijn ouders het eerste deel van mijn kamer leeg gemaakt en opgehaald. En ik kon niet eens zelf meehelpen met het inpakken van mijn eigen spullen. Het was mijn eigen plekje. Vanaf daar zou ik mijn leven opbouwen. 💔 Klote #LongCovid , voor alles wat je afpakt. 😔

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Guus

1 year

Lotgenootje kreeg vandaag een elektrische rolstoel. 29 jaar is ze. Ex verpleegkundige. Onwijs hard geraakt door #LongCovid , kan bijna niks meer. Ben geraakt door wat ze op instagram deelde, mag het hier delen met toestemming. Dit is #LongCovid en het raakt ook jonge mensen.

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Guus

1 year

Mijn rolstoelaanvraag bij de WMO is goedgekeurd. Ik heb zojuist het verslag doorgelezen en keihard gehuild. Ik wilde er graag 2 stukjes uit delen want dit is hoe het WEL hoort te gaan. Ik besef me onwijs goed dat ik enorm veel geluk heb dat dit zo op papier is gezet 1/

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Guus

2 years

Beste Kamerleden, Morgen weer debatteren over het covid beleid. Ik hoop dat jullie hierbij ook denken aan alle mensen met #LongCovid . (Geschat in NL nu 600k!) Hier onder daarom nogmaals een aantal van onze verhalen. Laat ons geen colleteral damage zijn! 🧵

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Guus

6 months

This! Lauren could get angry/sad (me as well) that the story of #MECFS only seemed to be interesting when someone was dying or had died. We talked about this multiples times. The attention should also go to the living who are suffering from this disease every single day.

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Guus

1 year

Naar het ziekenhuis met een zware vorm van #LongCovid In deze korte video hebben we geprobeerd om mijn bezoek aan het ziekenhuis van maandag vast te leggen om zo te kunnen laten zien hoe passende zorg eruit kan zien en om hopelijk ook wat bewustzijn te creëren. 🧵👇🏻

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Guus

9 months

At a Dutch symposium on #LongCovid that is currently happening an endowed professor of CBT stood up from the audience and distanced herself from CBT as a curative treatment. The whole room clapped. 👏🏻

@Pascalgrootveld

Pascal030

@Pascalgrootveld

9 months

6/ yes! Er stond een bijzonder hoogleraar CGT op uit de zaal. Ze distantieert zich van CGT als curatieve behandeling. Hele zaal klapte 😃. Terwijl er weinig patiënten zijn (en mister Knoop himself zo nog z’n praatje moet geven ;)

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Guus

2 months

@healingfromlc Can you bring a HEPA filter into the room?

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Guus

9 months

Lotgenoot deelt dit bericht. Weer een specialist die weigert iemand te zien vanwege #LongCovid . En dit gebeurt veel. Dit staat haaks op @ministerVWS die blijft beweren dat Long Covid patiënten gewoon terecht kunnen in de zorg. (gedeeld met toestemming) 1/2

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Guus

8 months

Rioolwaarden waren nog nooit zo hoog. De kaart is zwart. Stay safe. Ben je besmet? Doe het rustig aan, ziek goed uit. Ik zou willen dat dit voorlichting was vanuit onze overheid, maar die is ver te zoeken. Iedereen kan #LongCovid ontwikkelen. Dus houdt rekening met elkaar.

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Guus

7 months

Unhappy to announce that I will soon have completed 3 years of my unwanted post infectious diseases studies. I will be starting my 4th year in January. #LongCovid

@guustweet

Guus

1 year

Anyone else ever tired or overwhelmed by the feeling of having to learn all about very specific medical and research stuff bc you short of feel like you have to? #LongCovid

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@guustweet

Guus

1 year

My shoes. I have not worn shoes for so long. I have my indoor slippers and socks that I wear. But otherwise no shoes. Not using them for what you use them for I wore these last in March, very briefly when I had my wheelchair fitting, to measure my feet with shoes on. /

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Guus

1 month

CPC mouthwash and nasal rinse. This might sound excessive to a lot of people. But for me there was a lot at stake here: the risk of worsening and losing even more quality of life, with already little left.

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@guustweet

Guus

1 year

Make-up. I used to looooove make-up. It’s catching dust now. I remember a moment last June were I decided to put it on since long and get ready for the day, but only putting it on cost me so much that I was done for the day. I was so frustrated, I cried it all off. /

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Guus

1 year

Same goes for clothes. Of course I still wear clothes. But I can’t really wear outfits anymore. My clothes now need to be comfortable & practical. Nothing that is too much stimulus. I miss putting an outfit together. I loved jackets. I have ‘new’ ones that I haven’t worn yet. /

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Guus

2 months

Slaap zacht lieve Zoraya. 🌹 Vreselijk hoeveel nare reacties ze gekregen heeft in de laatste maanden. Wat ze deelde en hoe open ze was, was zo waardevol. De reacties lieten zien hoe hard het nodig is. Haar warmte, begrip en steun toen Lauren overleed zal ik nooit vergeten.

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Guus

1 year

Your brain really adapts quickly to your world becoming small. Things becoming normal. Similarly it also makes you see it differently than what it is sometimes, in a way to cope, to make it less heavy I think. I know this is me, but it also doesn’t feel like this is me.

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Guus

1 year

I still think I am not that severely affected by #LongCovid , yet the reality is that I lay here everyday. I can do some stuff: but mostly only on my phone & sometimes on my laptop and I have to lay flat. The last time I left the house was in July, before that it was December.

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Guus

1 year

Anyone else ever tired or overwhelmed by the feeling of having to learn all about very specific medical and research stuff bc you short of feel like you have to? #LongCovid

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Guus

1 year

Is there are guide or something on how to cope with losing your 20s to a disease that is disabling millions & is still doing so everyday but that governments and most people are actively ignoring, so you’re constantly screaming into a void? Asking for a friend. #LongCovid

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Guus

2 years

Vandaag 2 jaar ziek. Terugkijken vind ik moeilijk. Ik ben flink achteruit gegaan. Van niet meer goed tegen drukte kunnen, naar niet meer kunnen wandelen, schilderen, naar nu bijna compleet bedlegerig. Steeds weer een extra stukje verlies, nog minder vanzelfsprekend. #LongCovid

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Guus

2 months

This picture from the #LiegendDemo #BielefeldTag breaks my heart 💔 Two boys whose childhood/teenage years were wrecked by this horrific illness. #MECFS

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@LiegendDemo

Initiative #LiegendDemo, ME/CFS

2 months

Heute ist #BielefeldTag ! 🌆 Wir beginnen mit einer Bilderreihe von der Liegendemo am 11. Mai 2024 auf dem Jahnplatz in Bielefeld. Diese Bilder zeigen den Zusammenhalt und die Stärke der ME/CFS-Community. Lasst uns gemeinsam für Versorgung, Forschung und Aufklärung kämpfen! ⬇️

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Guus

2 years

OPROEP BOOS mailen: #LongCovid , #pwME #MECVS #POTS , Hoe er al jaren met post infectieuze ziektes zoals bv ME wordt omgegaan is niet okay. Met Long Covid lijkt de geschiedenis zich te herhalen. Wij laten niet nog meer mensen in de steek: dit leed moet NU stoppen. #ZiekBOOS 🧵1/10

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Guus

1 year

You can’t see it well, but it’s a life jacket that I bought for my dog. I wanted to go supping with her. It hurts so so much that I can’t do the things I want to do with her anymore, spend time together & making memories. Meanwhile times flies by. She’s 3 already. /

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Guus

3 months

Not able to watch #UniteToFight , am not well enough. Hope I will be able to watch back some parts afterwards. What are/were your favourites talks? Please share! (: I am too fogged to get a good overview. #LongCovid #MECFS

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Guus

10 months

Does anyone else get completely wired and almost angry when they have to make a choice? I’m crashy right now and I just can’t make choices. Simple choices. My brain can’t do it. It’s too much. They burn in my brain. #LongCovid

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Guus

2 months

Ik ben weer helemaal klaar met de bureaucratie. #LongCovid 1. Liggend vervoer voor ziekenhuis: afgewezen. Ze vinden dat ik prima met rolstoelvervoer kan. Dat ‘tripje’ naar het ziekenhuis is omdat ik al 2 jaar niet op controle kan komen voor iets waarvoor ik elk half jaar -

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Guus

1 year

I used to use this backpack everyday, for years. Just in a way you use a bag haha: to take things with you. For this one I don’t remember the last time I used it. /

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Guus

3 months

thank you. #pwME #MEAwarenessDay

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Guus

1 year

How do you guys get rid of frustration or any build up emotion? Internally I crave to be really active: to go running, fast and long, to go boxing, to idk listen to very loud music, talk about it, etc Physically I’m unable to do any of this. How do you unload? #LongCovid

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Guus

1 year

My mobility scooter. Bought it last summer. Had a few very lovely trips with it but unfortunately I got too ill to use it. So now it’s also catching dust in the garage. /

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Guus

3 months

#ReMEmberLauren Today at #LiegendDemo - @Gmwetz

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Guus

6 months

Now this is what I call a great present! @FvRhijn sent me a mug with the ‘Graded exercise should not be recommended for patients with post exertional malaise’ article on it. @AnilvanderZee and I were kindly put in the acknowledgments as we read and commented on an early draft.

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Guus

6 months

Really awful how there is suddenly a wave of really despicable reactions to Lauren's latest tweet and also comments saying that all the people who offered her support would be 'celebrating' it. We still have a long way to go. 💔

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Guus

5 months

Onwijs onder de indruk van @JasonErvD die op eigen initiatief in gesprek ging met 50 jongeren en een rapport schreef, omdat hij weet hoe hard het nodig is dat er iets gebeurt. Dan ben je een groots. Wel te bizar voor woorden dat dit nodig is om dingen aan de kaak te stellen.

@JasonErvD

Jason

5 months

'De inspectie heeft onlangs informatie ontvangen over de ZIKOS-afdelingen van een ervaringsdeskundige. (...) De informatie gaf de inspectie aanleiding voor een onaangekondigd toezichtsbezoek aan de ZIKOS-afdelingen van de twee jeugdhulpaanbieders.'

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Guus

1 year

Deze tweet is een petitie om als doel voor #SeriousRequest 2023 Long Covid & andere postinfectieuze aandoeningen te kiezen. @3FM Waarom? Impact van de ziekte is enorm. Overheid laat patiënten in de steek. Onderzoek komt niet van de grond: gebrek financiering/

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Guus

1 year

In these moving boxes are apparently things I don’t use anymore because they still haven’t been unpacked. I had to move back in with my parents in December. I can’t unpack my boxes & my parents also don’t have the energy so the boxes are still in the hallway & the stuff unused. /

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Guus

2 years

Ben vandaag in het ziekenhuis gaan liggen in de wachtkamer en ik ben best een beetje trots op mezelf dat ik dat gedaan heb. Vond het zo ongemakkelijk, en krijg sws al veel vervelende blikken van mensen maar hield het zittend zo slecht uit en dacht: ik moet liggen. Hielp echt.

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Guus

6 months

Heel boos dat vriendin met ernstige #LongCovid nu weer covid heeft. De enige die ze ziet is thuiszorg. Ze komt letterlijk niet buiten - te ziek. Thuiszorg moet ze zelf voorzien van ffp2 & ze gaan er nalatig mee om. Zover gaat ‘kwetsbaren moeten zichzelf beschermen’. Het kan niet.

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Guus

7 months

My 2023 wrapped: • Days spent in bed: 365 • Times I left the house: 1 - to the hospital with horizontal transport • People I've seen who aren't healthcare related or a carer: about 8 I think • Whole days with curtains fully open: 0 #LongCovid

@NeleHelena

Nele

7 months

My 2023 wrapped: Days spent in bed: 365 Days in unbearable physical suffering: 365 Times I left the house: 2 (doctor and dentist) People I've seen who aren't a doctor or a carer: 1 Nights with insomnia: 365 #severeME #severePOTS

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Guus

10 months

Look at the date of this tweet. #LongCovid

@jenbrea

Jennifer Brea🦒

4 years

We ( #pwme ) are VERY scared for #COVID19 patients who develop chronic symptoms, and have been talking about it since January. We want nothing more than to help spare them our fate.

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Guus

1 year

Yet I still often feel like I am still able to do a lot. But it’s a lot in comparison to the level of illness I also now some suffer with. It’s very little in comparison to a healthy person. I often forget that. What a healthy human can do.

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Guus

4 months

#BringMillieHome 18 yo Millie is deteriorating rapidly in hospital due to the NHS’ continuous psychologising of her #SevereME . NHS hospitals must stop mistreating #SevereME patients and follow the #NICEGuidelines ! #DontLetMEDie @gmcuk @rcphysicians @rcpsych @VictoriaAtkins

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23 days

A year ago, I left home for the last time. It's moments like these that make me face the facts and let me realise what a bizarre situation I have found myself in. #LongCovid 🧵

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Guus

1 year

A trip to the hospital with (severe) #LongCovid In this short video we tried to capture my visit to the hospital last Monday to hopefully show a bit more of what getting appropriate care can look like & to hopefully spread some awareness. 🧵👇🏻

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Guus

5 months

International friends, we 🇳🇱 had a milestone day today! Amendment #MECFS research € 4.4 million ✅ADOPTED Amendment #LongCovid outpatient clinics € 27 million ✅ADOPTED with a lot of noise! Amendment for additional resources for healthcare workers with #LongCovid ✅ ADOPTED

@NietHersteld

NietHersteld

6 months

🎉🎉🎉💙💙💙✊🏻✊🏻✊🏻 Amendement #ME #MEcvs onderzoek € 4,4 miljoen @NicoDrost ✅AANGENOMEN Amendement #LongCovid poliklinieken € 27 miljoen @JulianBushoff ✅AANGENOMEN met tromgeroffel! Amendement extra middelen zorgmedewerkers met #LongCovid @JulianBushoff ✅AANGENOMEN

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Guus

1 month

My mom tested positive 1,5 week ago. I had been close to her on that day, so chances were big that I would have already caught it. We all went into isolation immediately and I started my ‘covid is in the house regime’: good ventilation, HEPA filters, FFP2’s, VirX nose spray,

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Guus

1 year

What I love about this disease is that it makes you feel extremely unwell & you definitely need rest but your body refuses to calm down and there is a 0% change you will fall asleep. But you also can’t do ANYTHING to make the time pass bc it will make you sicker. /s #LongCovid

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Guus

6 months

Grootste medische schandaal van deze eeuw. There, I said it. Schrijnende verhalen mbt UWV. Maar deze verhalen gaan verder, je komt ze tegen in alle lagen van het systeem. Hoe we al decennia omgaan met #MECVS en soortgelijke aandoeningen is mensonterend.

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'UWV wil aan bed gebonden ME-patiënten laten werken'

Volgens patiëntenorganisaties en deskundigen is er bij de keuring van ME-patiënten sprake van willekeur.

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Guus

9 months

It has been a year since this bed was put in the living room. Weird to comprehend that I have been pretty much bedridden for more than a year. Until there is change, laying in this bed in this living room is my life. #LongCovid

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