Arlette

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Arlette

Arlette

@ArlettePoolen

I am one of the #MillionsMissing since 2005 - 32 jaar - She/her

netherlands Beigetreten Nisan 2013
864 Folgt1.3K Follower
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Arlette
Arlette@ArlettePoolen·
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
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jim faas 🍀
jim faas 🍀@JimFaas·
🟦🟥 Update acties 'moeilijk objectiveerbare' aandoeningen 🟧 Dit is een bericht van SZW van vandaag ‘Vorig jaar juni spraken we elkaar bij de bijeenkomst over de sociale zekerheidspositie van mensen met ‘moeilijk objectiveerbare’ aandoeningen. Er zijn gezamenlijk verschillende acties geformuleerd en de NVVG en UWV hebben zich ingezet voor de uitvoering van de acties. Met deze mail informeren we jullie over de voortgang. In de bijlage het overzicht met daarin de update van de voortgang per actie.   We vertrouwen erop u hiermee voldoende geïnformeerd te hebben.’ 🟧 Commentaar laat ik aan de lezer…
jim faas 🍀 tweet mediajim faas 🍀 tweet mediajim faas 🍀 tweet media
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TheDisabilityEnthusiast
TheDisabilityEnthusiast@twitchyspoonie·
I think one of the most important things if you're new to disability or even if you're not, but just haven't done this before is to try to learn about disabilities that aren't your own and disability history. Don't only narrowly focus on your own disability.
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Arlette
Arlette@ArlettePoolen·
@vi_toka Because now they never heard they did anything wrong. And they think "oh patiënt A didn't come back so I was right/nothing was wrong/they got better"
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Arlette
Arlette@ArlettePoolen·
@vi_toka I've heard people talk about how medicin should have a "feedback loop". So doctors hear what happened to their patients. For example "patient A turned out to have X while you said hysteria" or "patient B got better with treatment Y by specialist Z" etc That would be a start
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Arlette
Arlette@ArlettePoolen·
@vi_toka Was this in your referral? Otherwise yeah that's not good...
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Miranda ৻ꪆ
Miranda ৻ꪆ@vi_toka·
@ArlettePoolen I just found it a bit weird that he was fixated on the theory of FND, despite not having any proof of it. This label is legit ruining my life. Admitted himself it was because my symptoms were so diverse. Which isn’t… a diagnostic criteria but oh well
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Arlette
Arlette@ArlettePoolen·
@vi_toka I can imagine that maybe the adrenaline from being there makes you come across as better than you are as well. That's often the case for me.
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Miranda ৻ꪆ
Miranda ৻ꪆ@vi_toka·
@ArlettePoolen I can sometimes respond and sometimes can’t. Gaël notices this as well. Sometimes I can’t make any response at all and just freeze upon being asked a question lol
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Arlette
Arlette@ArlettePoolen·
@vi_toka Yeah I get that. Sometimes there is a difference with how you come across though. Can you have a conversation? Where you able to respond to his questions? What does Gael say?
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Miranda ৻ꪆ
Miranda ৻ꪆ@vi_toka·
@ArlettePoolen I’m not sure. I don’t feel lucid at all, I feel disorientated and exhausted and already forgot half the stuff he said
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Arlette
Arlette@ArlettePoolen·
@vi_toka I think it just means that you respond to questions and are able to talk/are coherent. The rest is hard for other people to see. Maybe?
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Miranda ৻ꪆ
Miranda ৻ꪆ@vi_toka·
@ArlettePoolen The change in his face was interesting. I’m also seriously concerned that he thought I was in any way “lucid” considering I tried to chew the lens part of my glasses and had only just stopped thinking serial killer Richard Ramirez was my ex boyfriend
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Arlette
Arlette@ArlettePoolen·
@vi_toka Oh that sounds... Good? Maybe? I hope they are able to convince the hospital!
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Miranda ৻ꪆ
Miranda ৻ꪆ@vi_toka·
@ArlettePoolen Very odd appointment 🤣 said FND for no reason then when we asked if it could be AE it went back and forth because all the things he said about AE applied to me. Eventually he said we should try and convince the hospital to do testing. Lol
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Arlette
Arlette@ArlettePoolen·
@vi_toka Oh yeah no this is a thing. You always need to dress "normal" but not too fancy or they say you're not sick. But you need to look presentable otherwise they say you're depressed. It's a fine line. So wearing jeans with a shirt is a good bet!
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Miranda ৻ꪆ
Miranda ৻ꪆ@vi_toka·
You might wonder if I’m being overly paranoid but my OG neurologist would point out me being dressed and having my nails painted etc even though I only dress to go out, it felt like she was using it as proof I was fine.
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ME/CFS Science
ME/CFS Science@mecfsskeptic·
1) Two age peaks: a fascinating paper confirmed two peaks for when people get ME/CFS: around 16 years old and in the mid thirties. The early onset in adolescence was associated with severe ME/CFS, an infectious onset, and having relatives with the disease. A brief summary...
ME/CFS Science tweet media
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PACO
PACO@PacoOnPause·
Here are 5 reasons why I would wear a respirator, if I lived somewhere with a Meningitis B outbreak.
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ME/CFS Science
ME/CFS Science@mecfsskeptic·
1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years. A longread with separate chapters on: - viral persistence - cytokines - neuroinflammation - antibodies - immune cells such as NK, B, and T cells
ME/CFS Science tweet media
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Arlette
Arlette@ArlettePoolen·
@useless_priest 4) we only hear about sickness that either kills you or goes away. The only chronic illness we know are things like diabetes and that is barely noticable to people who don't have it. So it is easy to forget as a possibility
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Arlette
Arlette@ArlettePoolen·
@useless_priest A few (possible) reasons: 1) (chronic) illness is something abstract from stories and people don't know how to deal with it if it happens to someone they know 2) just world fallacy 3) It is scary that that can happen. So believing science can fix everything is self protection
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Brian Fog
Brian Fog@useless_priest·
Quite aside from ME specifics, why are people so resistant to the idea that ANY illness can be *chronic* in nature and often lifelong?
Deeyana Angelo@pip_raider

We've had to explain to my husband's sister (who is a nurse 🙄) that myalgic encephalomyelitis is a chronic illness, typically life long and that no amount of yoga, hydration and more walking will help. Quite the opposite. It's harmful for us. But it's like she doesn't retain information. Same questions, same stupid suggestions, for 2 years until she finally did some research

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Financial Times
Financial Times@FT·
Dutch PM to European peers: ‘stop complaining’ and ‘maybe just do a better job’ ft.trib.al/O9UHob1
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Miranda ৻ꪆ
Miranda ৻ꪆ@vi_toka·
Man life is shite. The psychotic breaks have been happening every day sometimes more than once and they’re terrifying. The only mercy is that I can’t walk far if I try to venture out
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Nele
Nele@NeleHelena·
We might have this community. But we each also go through this very alone. Depressed tweet of the day lol.
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R@TantetanteRr·
Waarom stelt niemand in Den Haag de vraag hoe het komt dat er meer mensen arbeidsongeschikt zijn geworden?
Rien de Böck@riendebock

Aantal arbeidsongeschikten groeit. "Forse financiële tegenvaller". Volgens UWV is Long Covid een vd hoofdoorzaken. Jetten wil fors ingrijpen. Niet met betere zorg, maar met gehandicapje pesten. Uitkeringen omlaag, minder toekennen, etc. Fors asociaal. Het is crepeerpolitiek wat er bij Long Covid en PAIS wordt bedreven. Het kabinet van lang verwaarloosde problemen aanpakken en "het kan wél"-optimisme zet 0 euro in voor nieuw onderzoek en ziet medische zorg voor Long Covid liefst zo snel mogelijk verdwijnen. Dan blijven we uitzichtloos ziek -excuus- dan blijven we een structurele financiële tegenvaller Rob.

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