Nele (@NeleHelena) profile picture

Nele

@NeleHelena

I tweet about the things I don't like: severe chronic illness / ableism / toxic positivity / medical gaslighting / dysautonomia / MEcfs / autoimmunity

Joined March 2009
  • Tweets10K
  • Following1.2K
  • Followers5.3K
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Photo by Nele (@NeleHelena)Photo by Nele (@NeleHelena)Photo by Nele (@NeleHelena)Photo by Nele (@NeleHelena)Photo by Nele (@NeleHelena)Photo by Nele (@NeleHelena)Photo by Nele (@NeleHelena)Photo by Nele (@NeleHelena)Photo by Nele (@NeleHelena)Photo by Nele (@NeleHelena)
Hey it's me, Lena. I was one of the patients who did an interview about hope for @ChronicLiving1 As you might know I'm kinda the hope grinch, but I've tried to make it not that bad 😅 chroniclivingtherapy.com/len…
Lena – on how hope changes

Lena – on how hope changes

Lena is in her early forties and has experienced chronic ill health since she was 15. She shares her thoughts with us about the usefulness and sometimes also the difficulties of 'hope' in the...

chroniclivingtherapy.com
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Can't decide if I should give red light therapy (a cap) a chance for my hair or just give up and maybe buy a wig. I would definitely choose the wig option if I still had an outside life, but it feels so pointless when I'm stuck in bed and barely see anyone.
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Yesterday we held a beautiful PAIS Protest Vigil in The Hague. We called for long-run research funding like a Decade Against PAIS. 500 people showed up, we made the evening news, were covered in the major newspapers, and had politicians attend! It was also beautiful 🕯️ 1/7
Image from Siebe. (@PatientPersists)
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Really not looking forward to an extra hour of suffering tomorrow 😭
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Morgen is de PAIS protestwake in den Haag. Om stil te staan bij alle PAIS patiënten en de patiënten die zijn overleden 🌹 Maar ook om op te roepen tot structureel onderzoek en zorg voor deze patiëntengroep. #paisprotestwake #paisinzicht
Long COVID Nederland (@LongCovidNL) profile pictureLong COVID Nederland
@LongCovidNLOct 23
Update PAIS protestwake a.s. zondag 25 oktober 🕯️ Aanstaande zondag 25 oktober vindt om 15:00 de PAIS Protestwake plaats in Den Haag om stil te staan bij de honderdduizenden patiënten die een PAIS hebben. ➡️ De protestwake vindt plaats aan de Laan van Reagan en Gorbatsjov in Den Haag. 👉 Ben je van plan fysiek aanwezig te zijn? Meld je aan via het formulier: nl.surveymonkey.com/r/R6BS7G… 🎤 Het programma wordt gepresenteerd door Fred Verdult en duurt ongeveer 1 uur: -Welkom -Speech: Overlijden aan PAIS -Speech: Naasten -Speech: Patiënten -Een minuut stilte -Bloemlegging 🌹 Je mag een bloem meenemen om neer te leggen voor iemand met een PAIS die je mist, ook als diegene er nog is. 📹 Er is geen professionele livestream. Op instagram zal iemand van het account maskblocnl met een mobiele telefoon een livestream starten. Enkele dagen na afloop zullen er foto's en videobeelden beschikbaar zijn. ❗️Kom alleen naar de locatie in Den Haag als je belastbaar genoeg bent, of vraag een mantelzorger of naaste om aan te sluiten. Er zijn waarschijnlijk geen stoelen of andere voorzieningen aanwezig. De PAIS Protestwake wordt door twee patiënten en drie naasten georganiseerd. Long Covid Nederland is geen organisator, maar wij steunen dit initiatief van harte. Wil je meer weten? Volg dan PAISprotestwake op de socials. #PaisProtestwake #LongCovid #PAIS #TweedeKamer
Image from Long COVID Nederland (@LongCovidNL)
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Just a bit of casual low-key flirting really raises the adrenaline and insomnia 😖
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I never understood the problem healthcare has with not knowing. It should be normal to put "undiagnosed" in someone's file instead of mind-body or mental health diagnoses when that's not what's happening.
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Christina Applegate's doctor congratulating her on not having MS and her loved ones (?) being happy is such an abled perspective on chronic illness. The problem isn't the diagnosis, the problem is what's happening in someone's body. This is how #MedicalGaslighting looks like. 1/3
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You don't have the illness they know is serious, so that must be good news, right. But at the same time the things that happen in your body are still serious, but now without any leads for treatment. And with lots of room to wrongly psychologize. So no goods news at all. 2/3
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And if this happens to someone as rich and privileged as Christina, imagine how bad it is for people without her resources and privilege. 3/3
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Replying to @bfitzinAR
nitter.gq/GardenofNerdom/status/…
Elden Bling Lord, Consort of Ranni the Witch (@GardenofNerdom) profile pictureElden Bling Lord, Consort of Ranni the Witch@GardenofNerdomSep 2
Replying to @LongCovidAidBot
Thank you so much! I'm a Black, nonbinary long covid/ME survivor struggling to keep up with bills, rent, groceries, everything really. Anything would be a huge help. My venmo is Adam-Manson-3
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Tbh it bothers me when ppl clearly think “therapy speak” is this inherently liberating thing when it just gave a lot of ppl who wanted to be selfish a more formalized & clinical vocabulary to justify their self interest & flat out refusal to participate in collective society
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Fototentoonstelling Lieve Blancquaert Onzichtbaar – #MEcvs in beeld me-gids.net/nieuwsartikel/fo…
Fototentoonstelling Lieve Blancquaert: Onzichtbaar - ME/cvs in beeld - ME-Gids.net

Fototentoonstelling Lieve Blancquaert: Onzichtbaar - ME/cvs in beeld - ME-Gids.net

Fotografe Lieve Blancquaert bezocht negen mensen met de ziekte ME/CVS bij hen thuis. Ze bracht hun leefwereld in beeld: hun leven in duistere kamers, hun stille lijden. “Hun ziekte is vaak onzichtb...

me-gids.net
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Got that restless "it's Saterday night and I want to go out" feeling 🫤
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The two things that permanently lowered my #POTS #dysautonomia baseline: - a kidney infection - a vax The common factor is "immune activation" so yeah I try to avoid everything that activates my immune system. Especially on this level of illness and without treatment or care.
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I remember binge-watching this, and then the next day I unexpectedly ended up in the ICU because of a kidney-related issue. Definitely not something I'd recommend watching right before ending up in the ICU 😭
Pop Crave (@PopCrave) profile picturePop Crave
@PopCraveOct 17
‘American Horror Story: Asylum’ premiered 14 years ago today.
Image from Pop Crave (@PopCrave)
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Nele retweeted
PZ (@pzneedsrest) profile picture
PZ@pzneedsrestOct 17
The confected outrage and pettiness whenever there is media attention on #MyalgicEncephalomyelitis in the "covid era" from some in the LC "community" is pathetic. If it was reported the person was diagnosed with POTS, cardiac disease, diabetes, or basically anything else...
PZ (@pzneedsrest) profile picturePZ@pzneedsrestOct 17
Replying to @kadamssl
Oh it's an outrage!
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Nele retweeted
Dfrizz (@Dfrizz007) profile picture
Dfrizz@Dfrizz007Oct 16
knew this article would divided the people in the community. What's odd to me is a handful of people refuse to acknowledge her diagnosis of ME. and only say long covid long covid long covid. she prob. should have both Dxs and it's really insulting to people with ME to exclude it
Dfrizz (@Dfrizz007) profile pictureDfrizz@Dfrizz007Oct 16
For Dobbin it all started with back-to-back Covid and glandular fever infections in the winter of 2021-22. She had not been unwell with either, only discovering she had contracted both through retrospective tests. She now has ME per the article.
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I’ll make it short & painless… …months of work, loss of sleep, & the constant meowing of my cat, but it’s finally done! Presenting you my covid centred counselling website 🙌 ccounselling.org/en/ (English) ccounselling.org (German) 1/3
Green & brown moss, icicles, rays of sunshine.

ALT Green & brown moss, icicles, rays of sunshine.

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MAH (@Med58ll) profile picture
MAH@Med58llOct 14
1 op de 25 Belgen lijdt aan LongCovid Let wel: 1 op de 25 Belgen lijdt aan LongCovid Wakker worden! En een groot deel van de mensen hebben geen idee waar hun klachten vandaan komen. hln.be/binnenland/1-op-25-be…
1 op 25 Belgen lijdt aan langdurige covid: Senaat stemt vandaag over betere zorg

1 op 25 Belgen lijdt aan langdurige covid: Senaat stemt vandaag over betere zorg

De Senaat zal vandaag een resolutie met 53 aanbevelingen goedkeuren voor een gecoördineerde zorg voor patiënten met langdurige covid. Dat moet een kader bieden voor de aandoening. Momenteel ontbreekt...

hln.be
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"Should Diseases Be Renamed When #Science Advances?" Yes, to avoid #stigma and to be more accurate! #Mpox #PCOS #MASH medscape.com/viewarticle/sho…
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