Arlette
@ArlettePoolen
I am one of the #MillionsMissing since 2005 - 31 jaar - She/her
Alright. Welcome to #ME101 In this series of threads I'll try to explain what ME is, it's history, the politics surrounding it, what science says about it and much more. It might be interesting for #longhaulers #LongCovid since there are similarities. Also general #Disability
Gigi is being woken up every 4 hours which for someone with ME is irresponsible and should be known as such. They refuse to give her a pump that would stop the unnecessary wake ups. The pain team had diagnosed mental health issues and left her
The stigma is how mental health diagnose mental health disorders on those with ME and PEM. It is wrong for obvious reasons mainly because they give you the wrong treatment, which is not helpful Gigi is back in hospital and suffering as she did 6 years on again we have stigma
Don’t EVER glare at, film or otherwise harass a Blue Badge holder. I don’t care if you think they’re ‘faking’ it or using a relatives badge. You simply *cannot tell* and you are most likely just making a disabled person very frightened.
There is literally no way to tell apart a legitimate BB holder from a faker by looking at them. None. So all that happens with this idea that the public need to judge & defend “real” disabled people, is that they end up harassing & alienating people with invisible disabilities.
they fucking did it they genetically edited mosquitoes so they can’t transmit malaria. and made the mutation self-replicating. edited mosquitoes and every descendant can’t infect humans.
Woonvorm annex toevluchtsoord ME-patiënten die ernstig ziek zijn, leven vaak in totaal isolement. Een aangepaste woonvorm – stil, prikkelarm, veilig – is geen luxe maar noodzaak. De ME/cvs Vereniging start daarom een verkenning. Doe mee, denk mee. 🧵 mecentraal.wordpress.com/2025/07/24/woo…
"Als uw Wajong-uitkering en garantiebedrag stoppen, kan uw inkomen flink omlaag gaan. Komt u hierdoor in problemen? Neem dan contact op met Team Geldzorgen van UWV." Hoe bizar is dit?? juridischloket.nl/actueel/garant…
Sudan is being starved like Gaza, but receiving WAY less attention. There are two different groups of people being annihilated in front of us and whatever we are doing isn't enough. Please talk about both, help both!
People in Sudan are boiling weeds with salt water because there’s nothing else to eat. One teacher even wrote a love poem to a wild plant that kept him and others alive. Let that sink in. The world has failed Sudan like no other. #KeepEyesOnSudan #EyesOnDarfur #EyesOnNuba
My friend, Savannah, a 23yo woman with severe ME/CFS, is currently in a London hospital being denied the care she needs after being told to seek psychiatric help instead. Please help - sign the petition. change.org/SaveSavannah @MEAssociation @MEActNet @WorldMEAlliance
🚨 Only *9 more days* before August rent is due, I need 832.33£ or $1,131.18 This is an emergency, I’m at risk of homelessness, I could not survive being unhoused Please RT/engage! 🚨 My friend Annie made this Rent PayPal: paypal.com/paypalme/SaveL… GFM: gofundme.com/f/save-nevra
Please donate to Victor, yet another #pwME #MECFS patient who has long needed financial help for severe medical crises this year, please don’t ignore my friends in need, if you have $5 to donate or can RT that’s better than nothing 💜 GoFundMe here: gofundme.com/f/help-get-vic…
hey y’all, I recently had the…pleasant experience of nearly dying. I was in the hospital for 3 weeks and I am *still* homeless. I currently lack the funds for a hotel tomorrow. I need help getting housing as soon as humanely possible to keep my condition stable
Maybe it's a thing in the US, but I don't recognise this in Europe at all. When I go to a different country (or even different part of my country) I notice so many regional differences and traditions and dialects. It's true we can connect over the same popculture, but that's it.
nobody talks about how the internet killed regional culture. everyone under 30 has the same personality now. your grandparents' generation had accents, local customs, regional humor. you have tiktok trends and twitter discourse.
‼️Hi! I'm still in need of ME advocacy in Spain or international ME advocacy. I'm severe and my health continues to decline. I'm afraid I may soon end up in the hospital and will need advocacy if that happens. If you're able to help in any way, please reach out 🙏🙏💙
In BE is men nog bezig aan een behoeftenonderzoek, ook belangrijk maar heel erg laattijdig… Aan iedere ME/cvs-patiënt in BE: laat het RIZIV weten waar je in de zorg tegen aanloopt (vragenlijst ca 30 min) survey.kce.be/974677?lang=nl
The plan is finally online: "ME/CFS: the final delivery plan. The final delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), focusing on 3 main areas to improve care and support for those with ME/CFS" gov.uk/government/pub… #MEcfs #CFS
For those in the back: doing nothing is also a medical decision that has adverse events and long term consequences.
Ik snap echt niet dat hier niet meer ophef over is. Hoe ons land niet alles op alles zet deze kinderen te helpen. #LongCovid Onderschat de impact van niks doen niet, zowel in ziektebeeld en ernst, als dat dit zo’n onwijs belangrijke jaren zijn voor de ontwikkeling van een kind.
🟦 LongCovid 🟥 bij kinderen 🔲 opmerkelijk artikel in AD vandaag 🔲 off-label medicatie: behandeldilemma zo mogelijk nog groter dan bij volwassenen? door @Ellen_Gaalen met kinderarts Danilo Buonsenso @surf4children
Really a well researched and insightful piece even dating back to 412 BCE. Well worth the read so that we don't make the same mistakes again... thinkglobalhealth.org/article/long-f…
The final solution to Gaza is close. Unless the crossing with Egypt is opened and food floods in, hundreds of thousands will die and the holocaust of Gaza will be fully completed. These are the last days for meaningful action.
I am sorry, friends, but this is the reality 💔 I’ve started losing consciousness from extreme hunger. I can no longer comprehend what’s happening around me—everything feels blurry, as if I’m sinking into emptiness.
Medhi Hasan, Jubilee, Memes and The Politics of Nothing: