Thank you for reading my story.
If this resonated with you—please repost. Help it reach someone who doesn’t yet understand.

#MillionsMissing #WorldMEDay #ChronicIllness #LongCovid #MedicalTrauma

(12)

Talk about us.
Share our words.
Donate.
Let our voices be heard.
Teens, kids, young adults are the worst off; some being sent to psychiatric wards for “refusing to leave bed.”
It’s a catastrophe.
We are alone.
And we need you.

#MECFS

#MECFS is very likely curable with more research.
We are 20+ million in Europe alone.

25%++ of us are bed-bound.

We need funding.
We need recognition.
We need people to say the name of our disease.

(10)

Science has now confirmed what patients always knew:
#MECFS is a severe, deadly neuro-immune disease.

It leaves many so sick they’re bed-bound.
A living death.

And now, even more people are at risk of developing it

(9)

My muscles get weaker the more I move, making this disease is a horror movie:
A hole I get punished for trying to crawl out of.

Imagine you try to move, do the dishes, vacuum, or leave the house, but you just get sicker with every attempt. Eventually, it leaves you bedbound. A horror movie.

(8)

That misinformation spread globally. And it stuck.

Doctors and society turned on patients.
And the damage still shapes everything:
– Research
– Funding
– Public perception
– Policy
– How we’re treated in every GP’s office

(7)

Those psychiatrists back in the 1980’s and 90’s in the UK wanted to classify a life-threatening neuroimmune disease as psychological. They used the media to make patients look clueless and unreliable.
And they succeeded. Abuse of patients followed.

(6)

Every doctor I went to was uneducated in #MECFS.
Some had never heard of it.
Others repeated what UK psychiatrists started saying in the 1980s:
That ME was just a bullshit diagnosis. That it wasn’t real.

(5)

When I was 22, I found out the disease I have is called Myalgic Encephalomyelitis (#MECFS). I didn’t want the diagnosis. I read about it online—and what I found was terrifying. No cure. No treatment. Patients left alone. I was angry. I didn’t want this.

(4)

Swedish doctors told me I was just anxious or depressed. They barely ran any tests. They asked me to “take a walk.” My family and boyfriend didn’t believe me either—not without a diagnosis. I was 18. I had no power. I wasn’t believed.

(3)

I was suddenly over-burdened with symptoms in my whole body. It felt like I had the flu constantly, plus 100 other things. I was exhausted beyond words, but I fought to finish high school. After graduation, I vanished.

(2)

We have seen what the community can do when everyone sticks together for the same cause.

Complaining online can be a positive outlet and bonding with fellow patients. 💙

But; That is not going to get us funding.

Remember that.
8/8

Things like this can be pasted into a Google doc that can be passed around in the community to patients.
🔃

You can start petitions. Brainstorm together, and take action. The public isn’t really going to help or do anything for us.
7/8

Some of you have the cognition, or maybe even friends and family, to organize and put together scripts/templates, that can be translated (with chat gpt) into multiple languages to be emailed and communicated to politicians in patients countries.
6/8

It needs to be more profitable for them to cure us, and it would be. That’s what we need to use to persuade them. “Pretty please invest a billion euros because we are suffering” is not working.

They need information and a template to follow.
🔑
5/8

Persuade politicians that curing #mecfs is in THEIR interest.

Pleading to their heart and empathy is frankly something that has not worked and IMO is very unlikely to work.

Politicians are like businessmen, they have budgets and they think of income (taxes) versus expenses.📊📈

Focus on reaching out to your politicians, and don’t ask them to figure it out. Remember, they know nothing. 👨🏽‍💻

Instead, inform them what we need in order to get well and get back to work. (The latter is the only thing they care about)
3/8

Doctors who don’t believe it, haven’t even opened a book about it. They are echoing old rumors from the 90’s without knowing anything about #mecfs at all.
📚❌
2/8