Long COVID: What You Tried Is What Research Is Missing

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 6 November 2026.

If you have long COVID, you have probably tried more things than any study has tested: rest and pacing, supplements, medication for a racing heart, breathing exercises, diets, rehabilitation, and whatever a forum suggested at two in the morning. Some helped, some did nothing, some made it worse. That knowledge is exactly what research on long COVID is short of, and almost none of it is written down anywhere research can use it.

How many people live with it

Long COVID, which the WHO calls post COVID-19 condition, is common. A review in Nature Reviews Microbiology estimated that at least 65 million individuals worldwide have long COVID, with cases increasing daily. According to the WHO, approximately 6 in every 100 people who have COVID-19 develop it, and approximately 15 in 100 people still have symptoms at 12 months, as per global estimates from 2022.

The WHO describes it as "a range of symptoms which usually start within 3 months of the initial COVID-19 illness and last at least 2 months", and lists fatigue, breathlessness, muscle or joint pain and impaired sleep as common symptoms. It also notes palpitations, light-headedness on standing and exercise intolerance, symptoms it relates to POTS, and post-exertional malaise, the hallmark of ME/CFS.

What research does not know yet

The WHO is direct about the gap. In its own words: "At the present time, there remains limited research on treatments and a lack of large studies to understand the most effective treatments." Until there is, "doctors and their patients may make individualized treatment decisions based on knowledge from similar medical conditions."

In other words, the evidence on what works is being generated one patient at a time, in consulting rooms and at home, and then mostly lost. A clinic record says what was prescribed. It rarely says whether it helped, how much, for how long, and what came with it. Forums are full of people asking, and much thinner on people who come back to say what finally worked: people tend to stop posting when they get better.

That is the missing half: a structured account, from many people, of what was tried and how well it worked, rated by the person who tried it.

The records worth keeping

Records turn a story into data that research can use with confidence, and for long COVID they are often scattered across a family doctor, a hospital and a long COVID clinic. NICE's guideline on the long-term effects of COVID-19 sets out what people with ongoing symptoms are usually offered:

• Blood tests when clinically indicated, which may include a full blood count, kidney and liver function tests, C-reactive protein, ferritin, B-type natriuretic peptide (BNP), HbA1c and thyroid function tests.
• A chest X-ray by 12 weeks after acute COVID-19 if respiratory symptoms continue.
• Self-monitoring at home, which may include heart rate, blood pressure, pulse oximetry or symptom diaries.

That last item matters more than it looks. Many people with long COVID already track their heart rate on a watch and keep notes of good and bad days. A symptom diary over weeks or months, alongside heart-rate data, shows the pattern of the illness in a way no single test can. If you do not have your blood results or letters, you can ask your clinic for a copy.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. A complete long COVID story, with a year of the records the guideline lists, comes to about $82 per licence on the benchmark today. The same story with 30 diary entries and 90 days of wearable data comes to about $294 per licence, because a diary and sensor data add kinds of data that research rarely gets from the same person, and linked data is worth more. You can value your own, line by line, and see the sources for every figure on the long COVID page.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

How to share it

On CureCircle, you start by writing what you live with in your own words. A few quick questions follow (when it started, how, what you have tried), then an AI interviewer asks about the details only you know, and you rate every treatment you tried. You can add your records as PDFs or photos, including pages of a symptom diary, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

Long COVID research is waiting for exactly what you already know. Start your story, or read what your health data is worth first.