ME/CFS is a serious, disabling disease that has destroyed millions of lives. It often starts after viral infections — like COVID-19.

There’s still a lot we need to learn.
But there’s also a lot we already know.

And it’s crucial that doctors understand these basics:

1/X 🧵 It is NOT psychosomatic.
This is not anxiety.
Not depression.
Not burnout.
This is a complex biomedical disease with immune, neurological and metabolic dysfunction.
It is physical. Full stop.

2/X 🧵

⚠️ 🚨 ⚠️

Many of us can no longer protest on the streets to draw attention to our situation.

That's why #NotRecovered, with the support of many other organizations, is launching the ❗️campaign ❗️

👉#LetterForLife.

Only three steps are needed to support 👇🏻

1/6 🧵 🟡Step 1

Write a postcard to @SKyriakidesEU and @vestager

to raise awareness about #LongCovid, #MECFS and associated conditions and call for more research and better care. ...

Tip: Web services such as mypostcard.com, simplify the sending of postcards.

2/6 🧵

⚠️ 🚨 ⚠️

Many of us can no longer protest on the streets to draw attention to our situation.

That's why #NotRecovered, with the support of many other organizations, is launching the ❗️campaign ❗️

👉#LetterForLife.

Only three steps are needed to support 👇🏻

1/5 🧵 🟡Step 1

Write a postcard to @SKyriakidesEU and @GabrielMariya to raise awareness about #LongCovid, #MECFS and associated conditions and call for more research and better care. ...

Tip: Web services such as mypostcard.com, simplify the sending of postcards.

2/5 🧵

„After my first #covid #vaccination I felt headache during and after exercise and I had to vomit. I thought I've been busy, didn't sleep well, this will pass.
But I was wrong. After the booster vaccination in January 2022 I got #heart #palpitations while exercising. …“

1/4 „It got worse also during work and climbing stairs. My heart bests raised up to 165 per min.
In March 2022 I got #covid, mild /moderate - some headache.
But heart complaints were getting worse and I got pain in my left arm and neck. Cardiologist couldn't find anything. …“

2/4

„Since #Covid I suffer from #headaches, #tiredness, concentration problems, #brainfog, #dizziness, physical problems, loss of taste and smell and sometimes tightness on the chest. I follow physio- & ergotherapy. My husband is also suffering from #longCovid …“
- @IrisdeReus

1/4 „In hospital I did several long capacities tests and blood test. These test are standard and only gave results about my bad condition. They don’t solve the long Covid symptoms. After a year being sick I’m still making small steps in the right direction. …“
- @IrisdeReus

2/4

„#longcovid. I have had it twice now. Never recovered from first infection. I am no longer able to stand for very long or make meals for my family. I can no longer work as I continuously have #fatigue, #migraines, #nausea, nerve #pain and #brainfog. …“

1/4 „I use to work full time and just started a new job with the IRS after a pause from working as a mail carrier for 12 years. I can no longer do my daily of walks of 3 to 5 miles. Or spend time hiking or kayaking. …“

2/4

“#Covid has left me with a slew of neurological problems that have require me to use a wheelchair. I have cut back to teaching part time as full days made me more ill. Exercise for more than a few minutes leaves me with flu like symptoms for weeks at a time. …”

1/4 “Before #LongCovid, I was athletic and constantly busy manning theatre productions working with my high school students. I took aerial gymnastics classes, rode horses my whole life, and enjoyed running. …”

2/4