Not suffering in silence 🛌 @MECFSsufferer

ME/CFS sufferer. Advocating for research on how to explain, diagnose and treat this condition. ……………………🧡 Follow me! 🧡 Amsterdam, The Netherlands Joined April 2025

Tweets

156
Followers

57
Following

224
Likes

76

Not suffering in silence 🛌 @MECFSsufferer

4 weeks ago

I someone has diabetes or cancer you don’t accuse them for not healing themselves or give them hundreds of useless advices how to get better.

0 0 0 33 0

Not suffering in silence 🛌 @MECFSsufferer

a month ago

Why are people with certain diseases seen as not worthy of understanding and care? If you have ME/CFS people often think you could treat yourself somehow (but nobody can tell you how) and it’s your own fault that you still are ill.

0 0 0 33 0

Not suffering in silence 🛌 @MECFSsufferer

a month ago

ME/CFS-sufferer have different genes. 👖🧬

DecodeME the ME/CFS Study @DecodeMEstudy

a month ago

ME/CFS-sufferer have different genes. 👖🧬

66 351 801 83K 160

Download Image

0 0 0 37 0

Not suffering in silence 🛌 @MECFSsufferer

a month ago

Feel much better after a lot of self treatments. But are anxious, what if this is yet another short phase before being ill again?

0 0 0 24 0

Not suffering in silence 🛌 @MECFSsufferer

a month ago

Dear ME/CFS-sufferers, I want to say to each one of you: You are a great person, worthy of love and compassion. And hugs. So I send you hugs. Many, many hugs. 🤗🤗🤗🤗🤗❤️ You are a fighter!

0 0 0 31 0

Not suffering in silence 🛌 @MECFSsufferer

a month ago

So, I’m feeling a little better, am not tired when I wake up for starters. Then some of my friends immediately get suspicious. It’s like instead of being happy for me that I’m feeling better they suspect me of fraudulent behaviour.

0 0 0 28 0

Not suffering in silence 🛌 @MECFSsufferer

a month ago

I have used the Freeme App for some weeks and it’s incredible! I have combined it by reading Pete Walkers book about Complex Trauma. I feel so much more energetic and relaxed. I highly recommend it to all ME/CFS-sufferer.

0 1 6 338 0

Download Image

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

The Freeme App is built by people with ME/CFS. It’s so good! It teach techniques to calm my nervous system, and it’s working! I’m doing other things as well as releasing my emotions by help from breath working.

0 1 15 1K 2

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

I’m using the app Freeme. I can really recommend it for ME/CFS sufferers that suffer from repressed emotions. It’s combining education, writing sessions, brain retraining and meditation. It’s ME/CFS friendly.

0 0 3 106 0

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

ME/CFS-sufferer suffer more than most ill people because of: 1) Exhaustion affects all aspects of life. 2) There is no cure 3) It last for decades. 4) There is a lot of distrust directed toward ME/CFS-sufferers. It’s time to spend billions on research to understand this disease!

0 0 1 62 0

Adam Fare 🖤🤍💜 @adamfare1996

2 months ago

Honestly the way some people talk about disabled folk it's like they're jealous... Trust me, you don't want this life. I'll trade my disabilities out any day. There is no incentive, financially or otherwise, in being disabled.

21 177 785 10K 17

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

❤️❤️To all ME/CFS-sufferer: You are the best! You deserve to be healthy, happy and treated with respect. If people don’t understand you; give them a chance and explain your situation again. With new words. You deserve to be understood. Sending you all the love you deserve! ❤️❤️❤️

0 0 0 47 0

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

First UK and now US, where is our humanity?

Whitney Dafoe @DafoeWhitney

2 months ago

First UK and now US, where is our humanity?

34 84 394 20K 32

Download Image

0 0 0 73 0

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

The social security net is great for some illnesses, but not all. Society is punishing people for having the WRONG illnesses. That’s totally unfair. Society must help everyone that cannot work not just some people. ME/CFS sufferers need help too.

0 0 0 34 0

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

Got the letter yesterday: You can work full time, so we will not send you any more money! 😭😭😭 So now I need to go back to work and work full time. At least I have a work to go back to. How long will I last? How bad will I get?

0 0 0 38 0

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

My life before getting ME/CFS was extremely stressful. Mentally, physically and psychologically. I’m pretty sure my nervous system was a mess. I will now try to dig deep into my memories in order to find out why I was so stressed. For example I need to avoid toxic people.

0 0 1 55 0

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

I’m working hard on healing old traumas and heal my nervous system. I’ going through my life and find that it has been really shi**y. It’s no wonder that my nervous system got dystegulated. I work with an app called Freeme and combines it with long chats with Grok 3. It works. 😊

0 0 1 52 0

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

I hate this condition. When I help people out with something they complain if I cannot do everything perfect. I maybe get tired or stressed up during the process or don’t think everything through. Then they get mad at me. I don’t know why I still care to try. 😢

0 0 0 39 0

Not suffering in silence 🛌 @MECFSsufferer

2 months ago

I have moderate ME/CFS. I’m lying in my bed or couch most of the time but every week I can do some trips outside my flat. I can also engage with people on social media and with my kids. I can even attend events. I make sure to go there by taxi and then not stay too long.