Welcome. If you are living with Long COVID, you are not alone, and your experience can help other people like you. An open, patient-led research project.

Patient-led · open · non-commercial

Long COVID isn't one illness. Help us find your sub-type.

The Long Haul is an open, patient-led effort to map the sub-types of Long COVID, ME/CFS and POTS, and to pool, in the open, what is helping real people in each group.

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What is Long COVID?

Long COVID is when symptoms keep going, or new ones appear, for weeks, months, or years after a COVID-19 infection, even one that felt mild or that you barely noticed at the time. It is not the acute infection itself, and it is not contagious. It is what can happen to the body afterward.

It can affect almost any system at once: crushing fatigue that does not improve with rest, a worsening of symptoms a day or two after even light activity (post-exertional malaise), brain fog and memory problems, a racing heart on standing (POTS), breathlessness, nerve and muscle pain, gut problems, and much more. Two people with Long COVID can look completely different from each other.

It is real, biological, and often long-lasting. Many people are still sick years after their infection. This is not anxiety, not simple deconditioning, and not something people can push through, and being told otherwise is one of the hardest parts of the illness.

If you have never heard of it, here is a way to picture it

Long COVID behaves a lot like other chronic illnesses medicine already recognizes, which is part of why researchers take it seriously:

Like lupus and other autoimmune diseases, it can involve the immune system inflaming or turning on the body's own tissues, it affects many organs at once, and it tends to come in flares: better for a while, then worse, often for no obvious reason.

Like HIV in its chronic phase, researchers are studying whether fragments of the virus can linger in the body and keep the immune system switched on long after the first illness. Long COVID is not HIV and not AIDS, and it cannot be caught from someone who has it, but the idea of a virus the body struggles to fully clear is a real line of research here too.

Like ME/CFS (chronic fatigue syndrome), which often begins after an infection, many people have post-exertional malaise and never fully regain their old energy. A large share of people with Long COVID would also meet the definition of ME/CFS.

None of these are the exact same disease. The point is that a lingering, multi-system, immune-related illness that lasts for years is not new to medicine, and Long COVID fits that pattern.

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Why we're doing this

One name, several different diseases

After years of research, the strongest idea in the field is that "Long COVID" is really a family of related post-viral conditions, each driven by something different: lingering virus, a misdirected immune system, blood-vessel and clotting problems, or an energy-and-nervous-system breakdown that overlaps heavily with ME/CFS and POTS.

That's almost certainly why treatments keep "failing" in studies: a drug that helps one group gets averaged away across everyone else. Almost no one has mapped who falls into which group, or pooled honestly what has actually helped people in each one.

So that's what we're building here, out in the open, with you, and without selling anything. You tell us about your illness, your diet, and what you've tried. We look for patterns by sub-type and publish what we find, including the dead ends.

The working map

Four patterns we're trying to tell apart

These come from the current research and are a starting point, not a diagnosis. Most people show more than one.

Viral

Persistence-leaning

Signs the virus or its fragments may be lingering: ongoing flu-like waves, symptoms tied to reinfection.

Immune

Autoimmune-leaning

The immune system turning on the body: new allergies, flushing, widespread pain, autoantibody-type features.

Vascular

Vascular / inflammatory

Blood-vessel, clotting and inflammation problems: breathlessness, chest symptoms, exertion intolerance.

Neuro

Neuro-autonomic / energy

The ME/CFS-overlap pattern: crashes after activity (PEM), racing heart on standing (POTS), brain fog, unrefreshing fatigue, gut involvement.

Contribute to the research

Help us characterize the sub-types

The more detail, the more useful. The goal is to see where you fall, and to pool what's helping people like you. This is research, not medical advice. Nothing here is a diagnosis or a treatment recommendation.

Your privacy, in plain words.
  • Anonymous by default: we never collect your name. Email is optional.
  • Adults only (18+). Your consent to use your answers is required before you submit.
  • Only grouped results are ever shared. We never sell your data.
  • If you choose to share your email, it is stored separately from your answers, used only for updates and follow-up surveys, and removable anytime.
  • You can delete your response anytime using a private code we give you at the end.

Read our full consent form, protocol and privacy policy →

1 You and your illness
9
4
2 Your symptoms

Tick everything that's been a real problem for you, grouped by the part of the body it affects. This is what helps us place you on the map.

3 Diet, drink and gut

We go deep here on purpose: the gut and diet may matter a great deal for some sub-types, and we don't want to miss a real link. Answer what you can.

Your overall pattern
How often do you eat these?
Drinks
Gut and reactions
4 What you've tried, and whether it helped

The heart of it. For each thing you've tried, tell us which symptoms it changed, how sure you are it was the cause, and whether the change was fast or slow.

For example, one contributor found doxycycline + prednisone lifted their POTS symptoms (racing heart, dizziness on standing) for about 5 months, a big, fairly confident, gradual improvement, for reasons no one can yet explain, possibly a bacterial or microbiome effect. Signals exactly like this are what we want to catch.
5 What you've learned from testing

Any abnormal results, biomarkers, or diagnoses from doctors or labs. This helps us connect self-reported sub-types to real biology. Leave blank if you have none.

6 How your symptoms have changed over time

Many people shift between patterns, for example more POTS-dominated at first, then more fatigue later. Add a time period for each phase you remember. In the full version you can log a new check-in anytime using your private code.

+ Anything we missed?

This form will never be perfect. If there is a symptom, question, test, or treatment we should be asking about, tell us and we will add it.

+ Stay in touch (optional)

Only if you want to. Your email is stored separately from your answers, is never shown publicly, and is never sold. We would use it only to send occasional project updates and invitations to follow-up surveys, so we can learn what changes for people over time. You can remove it anytime using your private code.

7 Consent
Prototype, your answers stay in your browser.
Delete a response. Enter the private code you were given and it will be removed, along with your email if you gave one. No name or login needed.

What's helping people

Signals by sub-type Sample data

A preview of the aggregate view. These numbers are placeholders to show the idea. Real figures would come from contributors, shown as the share who reported improvement. A signal worth studying, never proof that something works.

How to read this honestly: people who improve are more likely to report, symptoms come and go on their own, and belief in a treatment can help by itself. So this map points researchers toward promising treatment and sub-type pairs to test properly. It is not medical advice, and nothing here should be started without your own clinician.