MECFS is one of the diseases with the lowest quality of life, in some cases even much lower than terminal cancer. Its affecting about 3 million people just in the US.
A few months ago I couldnt even get out of my bed. I couldnt eat, I couldnt see friends or family or anyone else. Just a few minutes a week I could spend on making music on my laptop, and this has evolved into something incredibly huge. In 12 months I have risen to the number 5 artist of my genre in my country austria, and have educated tens of thousands about MECFS.
It gives me so much courage to hang in there when I see people being aware of this unknown disease, just because of some songs i made in my bed. Thats my my goal now and I didnt want to just make you smile, i really wanted to educate you with this post!
Theres also another thing: the 12th of may is the international MECFS day and there will be protests in all major cities in europe (tomorrow). If you are busy or this is not possible, i totally understand! We all live our lifes and dont have enough resources to help everyone, but maybe next time you are sitting together wih your friends and family and you need a topic to talk about, you might want to talk about this disease with millions of affected people. It would be insanely appreciated, because its raising awareness!
And if not that, maybe you are just in for some new music! Its always easier to connect with music, and I just released my 4th album today. Its all very easy going and melodic drum and bass, exactly in time for the first rays of summer sunshine.
I am called "sebass", but i will leave a link in the comments in case thats allowed 🙂
Thank you!
by Sebassvienna
6 Comments
Keep up the fight. You’re a legend:)
Glad to hear you are improving
Never heard of that ?
How did you get it and what does it do?
Thought that was Macklemore for a second!
MECFS would be a good DJ name lol
Read all of that, still don’t know what MECFS is. Thanks for telling me about your music though
Okay, I googled because I didn’t understand that:
What are people protesting regarding this illness?
Activists and patients with ME/CFS are protesting primarily against the systematic neglect of their disease. Here are their main demands:
1. Recognize the illness as physiological, not psychiatric. For decades, doctors advised “more exercise” and cognitive behavioral therapy, which is devastating for patients. Any increase in activity worsens their condition.
2. Stop dangerous treatments. Activists demand the withdrawal of recommendations for GET (Graded Exercise Therapy) — a method now recognized as harmful. They also oppose the promotion of CBT as a “treatment” rather than supportive care.
3. Invest in research. ME/CFS receives extremely little funding, even though the illness disables millions and costs the economy billions. Patients demand funding comparable to other serious diseases (e.g., multiple sclerosis).
4. Educate doctors. Medical professionals know almost nothing about ME/CFS. The average time to diagnosis is 5–7 years, and 90% of patients never receive a correct diagnosis.
5. Social and medical support. Patients need disability benefits (often denied due to stigma), access to palliative care, and in-home assistance. Severe patients may be bedridden for years.
6. Fight Long COVID. Many Long COVID cases meet the diagnostic criteria for ME/CFS. Activists demand systematic screening for such patients and immediate access to care.
The symbol of the protest is an orange ribbon (sometimes with a butterfly, symbolizing “catching energy”). Actions include social media flash mobs, letters to officials, sit-ins, and participation in scientific conferences.
Key slogan: “ME/CFS is a real physical crash, not laziness. Science, not stigma.”