Sick& leftbehind.
What's the state of care in 2026 for people with ME/CFS and Long Covid in Berlin? We asked our community and got over 150 responses in less than 48 hours, with 1,063 written answers in German and English. This is an emergency signal.
Who responded
Mostly people who are severely affected: many of them ill for years, too ill to leave their homes. People could pick more than one.
This is chronic
137 of 154 people have been ill for more than 2 years, 78 of them for more than 4. Yet the system still treats them as isolated cases.
How severe it really is
Each dot is one person. Two in three are mostly housebound or bedbound.
- Very severe (3)
- Severe (38)
- Moderate (61)
- Mild (41)
- Very mild (11)
The core symptom too few understand
Post-exertional malaise (PEM) is the crash after exertion, and the defining feature of ME/CFS. When we asked how well PEM is understood in healthcare, most answered 1 out of 10.
89% have been ill for 2+ years. 97% have PEM.
Is there reliable care in Berlin?
141 of 154 say No or Rather not. 11 say Partly, 2 didn't know.
Not a single person answered Yes.
The search for help
People knock on every door, then wait and wait.
Where they turned
How long until they found the right help
114waited more than a year, or still haven't found anywhere to turn.
On a scale of 0 to 10
Each bar is the average answer. On every question, it sits near the bottom.
- How seriously do you feel taken by medical providers?3.2/10
- How well do you feel medically cared for in Berlin?2.6/10
- How well is PEM understood in healthcare?2.0/10
- How well can you navigate Berlin's healthcare system?3.1/10
- How well were you supported with social-law questions?2.2/10
“Care” that harms
With PEM, pushing yourself is dangerous. Overexertion can leave people with ME/CFS permanently worse, and yet:
56%were pushed towards exercise, activation or rehab despite exertion intolerance.
51%say a medical or rehab measure made them worse.
Was pacing explained?
With no approved treatment, pacing, budgeting your energy, is the most important way to manage the illness. So why did half of them have to teach themselves?
The barriers
What blocks access to care the most? At the top: doctors who don't know about these illnesses, and what follows from that, symptoms treated as psychological.
The fallout goes far beyond appointments
Illness becomes a question of survival: work, money, housing, and applications to authorities that become a burden of their own.
What Berlin's government and healthcare system must do
The answers make clear what's missing: medical knowledge, someone who is responsible, and the will to build care around the lives of very ill people.
1,063 pleas for help.
Read them all.
Every written answer people agreed to share, in their own words. Search them, or narrow them down by question, language, severity and perspective.
ME/CFS is a real illness that ruins lives. It needs to be taken seriously. It affects all areas of life, including mental health, physical health, and social life.
Not taking it seriously. I’ve been told by doctors it’s all in my head or to try yoga. It’s a joke.
Luckily by the time I moved to Berlin I had systems in place like pacing that helped me a lot. I am reviving treatment for pain management at the moment
Not being referred to a clinic for further help or advice
Having support and guidance as someone who just moved here in terms of where to get help financially and health wise. I’m clueless.
Don't let people fucking die. We need help now and not I a few yours.. Am tired of seeing people die and am afraid that my friends or me are the next one.
Almost everything because there is almost no health care because the one which are there a overwhelmed and overworked
To have a doctor to come to my house, but just it was a friend of a friend. I think I am already having the "best" doctor I can have in my situation but it's still really fucked up and not good.
Discrimination,(transphopia and fat discrimination) not awareness, no medication in general, almost no one wants to make appointments at home
Having accessible housing, and doctors appointments at home
The intersection of discrimination, not all people have the same privilege everyone needs access to Healthcare
That they rejected my Pflegegrad and I hade to put so much work in it to write the Wiederspruch and then to have again the Begutachtungen. I took me almost 9 month and made me so much worse mentally and physically
Covid is a mass disabling event.
Believing its over.
Having a doctor who believes in long covid and has actually researched it. My previous family doctor said "long covid is a self-fulfilling prophecy. If you act sick you'll never get better."
Not knowing where to get support. The ridiculous amount of paperwork (some from 20 years ago) necessary to try to get disability payments. Unsympathetic doctors.
Financial security that doesn't need to be endlessly reproven. Disabled people aren't lazy, were sick.
Paperwork needed from 20+ years ago to try to get reduced working hours.
Pacing, I never got any medical help.
Being forced to attend tons of medical appointments repeatedly at the beginning for sick leave when I needed to rest.
The Charité Fatigue Centrum only diagnoses which is a bit frustrating
Denial of its existence.
Quitting my job. Finding an online therapist (in my home country, self paid) that listens and validate my struggles.
Not being taken seriously. Several doctors trying to explain my own symptoms, concluding they are all due to stress. Giving me psychiatric meds for depression, without proper therapeutic follow-up. Or plainly saying they cannot help me with my symptoms.
Acknowledge that my struggles, and that they are not due to stress.
No, but thanks a lot for the work you do. Thanks for representing this community. I wish I could help in some way, but I'm broke and exhausted.
Trying to navigate a system full of burocracy, with no clear guidelines and full of people not willing to help; being penalized for any little unaccuracy or mistake. Being classified as crazy or problematic, when meltdowns due to frustration or lack of understanding happen. Putting all the weight on me and my "inability to handle stress".
The situation is absolutely catastrophic and most be rectified immediately.
Psychologization & minimizing the severity of the situation.
LDN (which I fought years to even access, and only did in the end by signing a document for my GP that I take full responsibility for the experiment) and medical cannabis, which I also struggled to access although the side effects were infinitely more tolerable than anything I had been pushed to try in the years prior.
Even this survey was a burden
We asked how exhausting it was to fill in our survey, from 0 to 10. For many, just answering took everything they had. Please keep that in mind as you read their answers.
- 0: 5 people
- 1: 10 people
- 2: 8 people
- 3: 9 people
- 4: 15 people
- 5: 27 people
- 6: 14 people
- 7: 24 people
- 8: 19 people
- 9: 9 people
- 10: 10 people
Berlin, this is an emergency call.
154 people spent energy they didn't have to make this data exist. Now it's the health policymakers' turn.
Survey and design: Berlin Buyers Club. “Healthcare Situation for Long Covid / ME/CFS in Berlin”, June 2026, with 154 responses (123 in German, 31 in English). An anonymised analysis of a community survey, not a representative sample. Answers are quoted only with their authors' consent, and never with names. Not medical advice. To have a quote corrected or removed, email berlin.buyers.club@gmail.com.