Imagine being very sick and going to the hospital because you need help. But you have #severeME and they don't follow scientific guidelines + don't believe in your illness and you enter a nightmare instead.

This is happening to #SaveCarlasLife and lots of others right now!

1/ They are in hospitals, exposed to everything that makes their illness worse.

You must understand that having very severe #MEcfs means being bedbound and that every noise, light, touch or even the presence of someone else causes enormous physical suffering. 2/

#ExposeMENow

Meghan is spreading a lot of misinformation because she is talking about things she has no knowledge about.

She has no knowledge about autoimmunity. She doesn't know that autoimmune diseases affect more women than men. She doesn't know that an important subset of those

1/

https://twitter.com/MeghanEMurphy/status/1743757673311715432

diseases are probably autoimmune. Because of internalised misogyny, she blames it on personality. While there's nothing that points in that direction.

Also, how do you take your health into your own hands when your immune system attacks the body's own healthy components. 2/

I think people can't grasp what it means to be bedbound + in physical suffering 24/7. Yeah when they hear about it they're a bit shocked and feel sympathy. And then they move on and forget. But do remember, when you're in the supermarket, we are suffering in bed ⬇️

#severeME etc When you're talking to your loved ones, we are suffering in bed. When you are at work, we are suffering in bed. When you're sleeping, we're probably awake and suffering in bed. When you're going out for a drink, we're suffering in bed...

⬇️

Last month I posted something about my severe chronic illnesses on fb. That was a first. I don't have many people there, just some family members and friends from the past. Most of them have no idea how sick I am. I wanted them to know. It was both a good + a sad experience.

1/6 First the good part: it was a bit overwhelming. I got so many sweet and sincere messages from people who had no clue and genuinely wished it was different for me.

But it also had something very sad. Because after a day or two, the messages stopped...

2/6

Some things I've learned when my #dysautonomia #MEcfs became severe ⬇️

1. People will randomly pop up saying that they have been bedbound for ... years and now can do ... again. They won't ask anything about my pattern/symptoms. They just tell me that I MUST stay hopeful

🧵⬇️ 2. There is no such thing as having nothing to lose. The less you have, the more you have to lose

3. It's more about the unbearable physical suffering and less about the things I can't do anymore

4. The more severe I become the less credible people (and doctors!) think I am

Many things and illnesses that are wrongly being psychologized by healthcare can simply be explained by #autoimmunity.

Healthcare has a history of doing this while ignoring the most obvious and plausible explanation of autoimmunity.

A list of some of those things 🧵⬇️ 1. "It affects more women than men so it must be stress" 🚫

So it must be autoimmune you mean! Almost 80% of people suffering from an autoimmune disease are women. It's in our hormones and genes. Our immune system has a higher risk of attacking the body's own healthy components.

There was a time when I didn't speak much about my illnesses because society tells us not to. I was afraid that people would think that it was my identity and they consider that a bad thing. And I definitely couldn't imagine tweeting about it. But that's just ableism🧵⬇️ Then my best friend @midheavenmoon got #LongCovid. As a new sick person she naturally spoke about it and how it affects her life. And I was like what am I doing. Why do I keep quiet about something that is so decisive in every aspect of my life. Being ill IS my identity.

Most people who have an autoimmune disease are women. So there's so much key information in the fact that most people who suffer from post viral illness are also women. Yet society chose to ignore the obvious and blames it on things like anxiety. Sexism is stronger than facts 1/4 Medical research was always focused on men while we have significant differences in how our immune systems work. Differences that could provide us with so much information about autoimmunity in general. But nobody cares because of sexism. 2/4

If you have #LongCovid or #ME and consider the use of steroids, please be very careful. It can help some people but for other people, like me, it can make the symptoms way worse. I thought I had nothing to lose. Well it turned out I had lots to lose... 1/ I had a short but very high (500 mg) methylprednisolon course last november for severe and progressive #POTS. The days I took it were some of the most horrible days of my life. Basically, my mind went into an overactive state in a body that I couldn't use. 2/

On this day a year ago my life changed a lot. I got my first covid vax and overnight my #pots worsened to the level that I can't stand or sit anymore. I already had pots and probably #mecfs so it wasn't the first day my life changed a lot but from that day it's unbearable. 1/ It all started on a random day in '13 after a minor medical issue. Then it was stable for like 2 years and it worsened a lot one week after a simple kidney infection in '15. Then I became 90% bedbound but still could have some fun and do things in the other 10%. 2/

Ik word zo boos als mensen doen alsof we jongeren opofferen voor ouderen/kwetsbaren. Ik ben één van die kwetsbaren en voor corona had ik ook een ander leven en zag ik ook graag andere mensen binnen mijn kunnen. Nu blijf ik binnen zodat jij kan buitenkomen.

https://twitter.com/Knack/status/1467069373269561345

Maar aangezien ziekte mijn al hevige klachten blijvend erger kan maken kon ik het risico niet nemen. Toen de bubbels er waren had ik er bewust geen, 'vrijwillige' maar noodgedwongen keuze. Toen de cijfers zakten dacht ik misschien kan ik op de maatregelen gaan leven ipv eronder.