Real World Evidence Initiative
Anyone living with Long Covid or ME/CFS builds up their own insights over the years into what helps and what doesn't. In research terms, this kind of information is called Real World Evidence. We are the first to capture it systematically for Europe and to report on the results.
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Why we do this
Anyone who has lived with Long Covid or ME/CFS for a long time has usually tried a dozen therapies and observed which ones changed something and which didn't. Looked at individually, it's hard to draw conclusions for other patients from this. Aggregated, that can be different. But so far these observations remain scattered across support groups, consultations, or private notebooks.
Controlled clinical trials remain the standard for proving efficacy. But Real World Evidence gathers concrete experience from patients' actual day-to-day management of their condition — experience that, in its sheer volume and practical relevance, can offer therapy research a wealth of leads.
On its evidentiary value: our initiative relies on subjective assessments, which cannot match the rigor of data collection in a good clinical trial. The results are not proof of efficacy and not a treatment recommendation.
The model
In 2025, researchers from Harvard Medical School and Stanford University School of Medicine published in PNAS the analysis of the largest patient treatment survey to date. The TREATME study provides an answer, for over 150 therapies, to how often patients reported improvement.
The analysis also showed how differently individual patient groups responded to the various therapies. We've compiled the ten therapies with the highest reported improvement rates on our research page: Understanding Long Covid & ME/CFS.
Our REALME study
Therapies practised in Europe are included here. Therapy options that have only recently emerged can be added on an ongoing basis.
The characteristics of patients and their subgroups may differ in Europe.
Beyond patient data, we will also bring in further data sources (for example, clinical case studies) to build a comprehensive data basis.
How the survey works
Pausable at any time. You can stop after two minutes and pick it back up days later.
No registration, no real name required. We collect no data that could identify you.
Result updates for participants, if wanted. The analyses are published openly and free of charge.
Survey content
The survey first asks about the form of your Long Covid or ME/CFS. This typing helps us later classify treatment outcomes correctly and possibly identify subgroups ("phenotypes") for which a given therapy would be especially promising.
For treatment experience, we offer you a list of the most common therapy options, but also let you add new forms of therapy.
Take part
You don't need to explain or prove anything to us. Just answer what you yourself have experienced, and leave out the rest.
Take part in the surveyAnonymous · Pacing-friendly · Result updates
Sharpa offers patients and their caregivers an integrated program for the assessment and therapy of Long Covid and ME/CFS. Adapted to their energy limits, with specialised partner physicians working from the latest scientific evidence, and with one dedicated contact.