guusontheinternet.bsky.social
Creative turned activist #NietHersteld - Long Covid since jan’21 ♿️ - posts with brain fog, so pls bear with me - eager to learn - posts in 🇬🇧 & 🇳🇱
448 posts
2,002 followers
584 following
Regular Contributor
Active Commenter
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❤️🔥
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Lees haar hele post op Instagram, deel hem en vergeet ons niet.
www.instagram.com/p/DJkCNFmN6x...
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“Het is bijna alsof ik voor de buitenwereld al dood ben. Er zou immers niets veranderen als ik vandaag zou komen te overlijden. De buitenwereld zou daar niets van merken. Het klinkt donker, daar ben ik mij van bewust. Maar dat is dit ook. Letterlijk.”
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💙💙💙
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I’m in awe of the courage, determination and resilience shown time and time again by this community.
If there is a silver lining to Long Covid, let it be that people with ME and other IACC finally get the (medical) attention and care they so deserve.
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Lastly: big love to everyone suffering from this disease. I will be thinking of all of you today 💙
I’m so thankful for everything that people with ME have taught us, people with Long Covid.
You paved the way, we are standing on your shoulders.
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Dutch initiatives to support are:
De ME/CVS Vereniging @mecvsvereniging.bsky.social
Stichting Long Covid (mainly focused on Long Covid, but they are purely focused on moving research forward)
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@openmedf.bsky.social is a solid and trusted foundation that funds research into ME/CFS.
Maybe, instead of buying something like a drink today, you could consider donating a little to move this very needed research forward.
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We urgently need more attention for ME and especially more funding for research to hopefully someday have more perspective, a better future, for people suffering from this disease.
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This qoute often goes through my mind:
“ME/CFS broke my body, the indifference of the world broke my heart.”
- Christina Baltais, ME/CFS patient
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A lot of people with #LongCovid meet the criteria of ME/CFS, so do I.
ME/CFS is a living nightmare. Before I got ill, I would never have been able to imagine a disease this cruel, with such low quality of life that is also so stigmatised and neglected as ME…
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🧵I don’t have the energy this year to write much. I hope you will read other posts with more information in it. Plenty are shared today under hashtags like #MECFSis #MillionsMissing #MEAwarenessMonth #WorldMEDay #DisabilitySOS #GreatestMEdicalScandal #MECFS -
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“Het is nu tijd voor een inhaalslag, voor biomedisch onderzoek, voor meer kennis van zaken. De overheid en universiteiten moeten daarom flink gaan investeren in onderzoek naar PAIS.”
#PAIS #MECVS #LongCovid
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Rieke: “De medische wereld heeft patiënten met ME/cvs jarenlang genegeerd en/of gedaan alsof ons ziek zijn in ons hoofd zat. En in veel gevallen gebeurt dit nog steeds. Tot gedwongen psychische opname van zeer ernstig zieke mensen aan toe.” -
artikel: archive.is/lttnO
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💛
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🧸
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My heart goes out to anyone who can’t see people in real life because of their illness. Or because of next to their illness, friends have dissapeared..
It made me think of you. And my heart breaks for you 💔
How did we get in such a fucked up ‘alternate universe’?
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Things like this are always bittersweet. So that is why I think she worded it so well: my heart is filled, but my heart is also broken.
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I miss this so much, and how much I long for this type of contact. It’s the type of contact that also let’s you be more in contact with yourself - and I miss that so much as well, being able to really have myself present and feel that.
So that’s quite a heavy mental load.
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I think it’s something that is essential for humans for their wellbeing.
At this point in my life I have better relationships than I’ve ever had, but it do really is different when you can’t see someone in person..
And now seeing someone made me also feel a bit more how -
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I appreciate all the people that I have been seeing whilst in this situation, but it did hit me how in all this time I haven’t had a close friend over and was never able to have the type of interaction you only have with people like close friends, with YOUR people.
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‘It was heartwarming that it felt so special, yet simultanously heartbreaking that it is so complicated.’
It was all the feels.
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This is what she chose to do as her vacation. Visiting me. Insane. 🤯
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I’m saying ‘travelled all the way’, but for healthy people it wouldn’t be that long of a commute, but for someone who is sick herself as well, it is.
It’s also the reason why she is here multiple days. So she can also rest from travelling and visiting me.
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I have ‘met’ so many amazing people since I have fallen ill, some who now are my closest friends - but untill now I have never seen any of them in real life..
Will I dissociate a bit when we meet on Sunday? Probably. Will it be worth it. Definitely.
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The fact that she came all the way and is staying somewhere for multiple days just so we can meet is SO incredibily sweet.
So surreal as we know each other quite well and long now, talking almost everyday, but we’ve never met each other because we’re both ill.
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Kijken en delen dus, deze film!
youtu.be/J0ywwLIfH_w?...
#PAIS #PAIZ #LongCovid #MECVS #Lyme #QVS #QKoorts #PostSepsis #NietHersteld #MillionsMissing #MEAwarenessDay
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Jolien, Laura, Peter, Gitte en Mark: echt onder de indruk van hoe jullie erover praten. Heel menselijk, realistisch, met veel nuance en de passie voor jullie werk blijft voelbaar. Dat jullie je uitspreken betekent veel voor de community!
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Om juist artsen die zelf ziek zijn geworden hierover aan het word te laten is zo’n sterke invalshoek. Want zij stonden middenin die medische wereld die we nu juist zó hard nodig hebben. Hopelijk kunnen hun ervaringen een handreiking zijn voor veel medici.
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Die urgentie en de noodzaak die in je werk zitten, is zo voelbaar. Net als dus jouw drang om te willen maken. Dat inspireert me vaak.
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Waar we als community altijd zo hopen dat media en journalistiek aandacht aan dit verhaal besteden, echt dieper erin duiken, ga jij daar niet op (liggen) zitten wachten en ga je ‘gewoon’ zelf aan de slag.
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Ik vind het zo bijzonder hoe de maker en kunstenaar in jou, ondanks alles, blijft branden als een vuurtje dat zelfs in de zwaarste storm overeind blijft.
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Anil je bent een force.
Vanuit het donker weet jij altijd een manier te vinden om dit verhaal aan het licht te brengen. Hoe ongelofelijk veel dat vergt, kan denk ik niemand zich echt indenken..
bsky.app/profile/anil...
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So sorry! 💔❤️🩹
Grieving without the community aspect is just so against everything we need as humans 🫂
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Jahaa niet kloppende zinnen maar dat krijg je na 4 jaar ziekzijn met een ziekte waar ene meneer mooi in had kunnen investeren en meerjarig beleid voor had kunnen maken, echt het verschil had kunnen maken aan het begin voor honderdduizenden maar die dat toch echt niet nodig vond.