Why Is It So Hard to Get Care for ME/CFS and Long COVID? What 577 Patients Reported
A 2026 German survey found 87% had trouble getting treatment. The reason people named most often was not disbelief, and that changes what helps.
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If getting treatment for long COVID or ME/CFS has felt close to impossible, that experience now has numbers attached to it. In a German survey of 577 people, 87% said they'd had difficulty getting the treatment they needed. The reason named most often had nothing to do with being believed: most participants said there was no treatment available to give. Being disbelieved and being untreatable are two different problems, and telling them apart changes what you do next.
What the survey covered
The work came from a team at University Medicine Greifswald, who surveyed 577 adults in Germany between October and December 2025. Everyone taking part had long COVID or post-COVID, ME/CFS, or post-acute COVID-19 vaccination syndrome. ME/CFS is short for myalgic encephalomyelitis, also called chronic fatigue syndrome. Its defining feature is that exertion makes symptoms worse for days afterward. About 83.5% of participants were women, and most were between 40 and 65.
Use of medical care was high. More than 90% of each group had seen a general practitioner or a specialist. Getting through the door was rarely the problem. What came after the door was the harder part.
The employment figures give the scale of it. Before becoming ill, 94.2% of participants had been working, in training, or studying. Afterward, 31.1% were.
The barrier people named most often
Asked why they couldn't get the therapy they needed, 60% chose the option that no treatment was available. Another 42.6% said their symptoms weren't considered serious enough, and 36.4% said they hadn't known who to contact.
There's a second set of numbers about being taken seriously, and the two get conflated. In an open-ended question, where people wrote in their own words, 26.2% described not being taken seriously during medical consultations. When asked about it directly, a considerably larger share confirmed the same experience. In their discussion, the authors suggested two explanations for that gap. People may not volunteer these experiences unless they're prompted. They may describe them instead as failures of the system.
Both of those things are true at the same time. A clinician can believe you completely and still have very little to offer. There's no settled mechanistic account of the illness yet to build treatment on. So there is no therapy to give, and being believed doesn't change that. I'd rather say that plainly than promise that the right doctor solves everything. The second version keeps people searching for a person when the gap is in the field.
Where the dismissal was sharpest
The researchers also measured perceived invalidation, which is the experience of having your illness dismissed, downplayed, or attributed to psychological causes without proper investigation. They used a validated questionnaire that asks about five sources separately: partners, family, medical staff, the work environment, and authorities such as disability benefit agencies.
Medical staff weren't the highest-scoring source. Authorities and workplaces were. Ranked across all participants, authorities came first, the work environment second, and medical staff third, with family and partners lowest of the five.
This is the finding I'd most like people to leave with. Plenty of people have spent years being told the answer is a better doctor. This survey points somewhere else. The sharpest dismissal in this survey came from the institutions that decide whether you can work and whether you qualify for support. This is a question of institutional recognition, and not a personal failure to advocate well enough. Self-blame is a tax this population already pays, and here is one place where the numbers give you no reason to keep paying it. It also fits what people describe about how much harder returning to work turns out to be than anyone expects.
Two cautions about reading this. Perceived invalidation from medical staff did not differ significantly between the three conditions, so nobody should be described as facing the most dismissal from doctors. Invalidation from authorities did differ, with ME/CFS participants reporting more of it than the long COVID group. And this measures how people perceived their treatment, which is not the same as an audit of what clinicians actually did.
What tends to help
None of this leaves you without moves.
The first is knowing what you're looking for in a long-term clinician. Diagnosis and long-term management are often two different jobs, and often two different people. In this survey, only about 12% of the long COVID and ME/CFS participants were diagnosed at a clinic specializing in these conditions. Most were diagnosed by a general practitioner or a neurologist. I'd look for three things. One is willingness to work with you over time rather than once. Another is whether they'll put what they know into a written plan. The third is whether they keep going once the label is confirmed. Roughly half of the ME/CFS participants reported having no specific treatment plan at all, which makes it fair to ask.
The second is bringing your needs in a form that survives a short visit. A patient-led team in the UK has built something for exactly this, called the Clinical Needs Assessment for ME. Both authors live with ME/CFS, and they co-produced it with patients and with clinicians working in NHS specialist services before having 400 people with ME complete it. It measures what a person needs, not how severe their disease is. It was developed in a UK setting. There's no evidence yet that using it changes what happens in a consultation. It's best understood as a way to organize what you want to say, and not as a proven intervention.
The third is that leaning on other patients is reasonable. Around 90% of participants in every group used online forums or self-help groups for information and support. That isn't poor judgment on their part. When formal care is hard to come by, people build the knowledge base they need among themselves, which is a large part of why a public, plain-language archive like this one exists.
The harm here is documented well beyond a single survey. A 2025 systematic meta-synthesis reviewed 151 qualitative reports covering 11,307 people across eleven contested conditions, with ME/CFS and long COVID among them. The consequences the authors identified include shame, healthcare-related anxiety, avoidance of the healthcare system, and delayed diagnosis. That body of work is qualitative, so it describes what people report consistently rather than establishing a causal chain.
The generous reading is also the accurate one
Much of what looks like indifference comes from how little is established about these conditions. Post-viral conditions like ME/CFS have historically received little attention in medical training. Participants asked for that directly: more continuous training for medical staff, clearer communication, and structured treatment plans. What comes through in this survey is a field that hasn't caught up yet, and that gap is one better training and care coordination could help close. The chronic fatigue and ME/CFS resource hub gathers the rest of what I've written on these conditions.
This is education rather than medical advice, and it doesn't replace care from a clinician who can see your full history. If chronic fatigue or EBV reactivation is part of your picture, the EBV Reactivation Treatment Algorithm is a step-by-step flowchart for working through it.
FAQ
Does it mean my symptoms aren't real if my test results come back normal?
No. Long COVID and ME/CFS are diagnosed from your history and your symptom pattern, not from a single confirmatory blood test. Routine panels usually come back normal in both conditions. A normal result tells you what has been excluded, and it says nothing about whether what you're experiencing is genuine.
Why do employers and government agencies come up more than doctors in this research?
In this German survey, participants rated perceived invalidation from five sources separately. Authorities such as disability benefit agencies ranked highest, the work environment came second, and medical staff came third. Earlier work using the same questionnaire in fibromyalgia and rheumatoid arthritis found a similar pattern, with institutions and workplaces ranking above clinicians.
Is it worth changing doctors if I don't feel taken seriously?
Sometimes, though it isn't the whole answer. In this survey, 60% of participants said the barrier was that no treatment was available, which is a gap a different clinician can't close on their own. If you're being dismissed outright, a change is reasonable. If your clinician believes you and has run out of options, the more useful conversation is about coordination and long-term follow-up.
What can I bring to an appointment so I'm understood faster?
A written summary of what your illness stops you from doing, rather than a symptom list alone, tends to communicate more in a short visit. A UK patient-led team has developed a structured tool for this called the Clinical Needs Assessment for ME, completed by 400 people with ME during its validation. It measures needs rather than disease severity.
Do these German findings apply to care in the United States?
Partly, and with some important caveats. This was a cross-sectional online survey conducted in Germany. Participants were recruited through social media and self-help networks, so people with stronger community ties were more likely to take part. Diagnoses were self-reported. The specific percentages describe this group of 577 people, not a US population.
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