Taking part, and how your data is handled
The Long Haul is an open, patient-led, non-commercial project. It is run by people living with Long COVID, not by a company, a university, or a hospital. Taking part is completely voluntary: you share your experience only if you want to.
This page explains three things in plain language: what taking part means and what you are agreeing to, how the project works, and how your information is handled. We are not an academic or medical institution, and this is not reviewed by an ethics board. We make reasonable efforts to keep this page accurate and to handle your data carefully, and we tell you honestly what we do and do not do.
Taking part
What you are agreeing to
This is voluntary
We are asking you to fill out an anonymous survey about your symptoms, diet, treatments you have tried, and optionally your ancestry. You do not have to. You can skip any question, and you can stop at any time. Nothing happens if you choose not to take part.
Why we are doing this
Long COVID looks like several different conditions with different causes. We are trying to describe those sub-types and to pool, out in the open, what has actually helped people in each group. We are a group of patients trying to make something useful for other patients.
What taking part involves
A single online survey, about 10 minutes. We ask your age range and roughly when you got ill, how you rate your quality of life before and now, which symptoms affect you, how you eat, what treatments you have tried and whether they helped, and optionally your country of origin and ancestry. At the end you may optionally leave an email for updates or follow-up surveys. Everything beyond the consent box is optional, and you can skip anything.
This is not medical advice
Nothing here is a diagnosis, medical advice, or a treatment recommendation. The sub-type pattern we show you is a rough signal to think about and discuss with your own clinician, not a medical finding. We cannot give you medical advice or help in an emergency. If you are in crisis, please contact your clinician or a local crisis line.
What it means for you
There is no payment and no direct benefit to you. Your answers help build a clearer, shared picture of Long COVID that may help other people like you. The main risk is privacy, and we keep it low by never asking for your name and by sharing only grouped results. Thinking about your illness can be hard, so take it at your own pace.
Your data, in short
- The survey is anonymous. We never ask for your name, and we ask you not to type identifying details into the free-text boxes.
- We share only grouped, de-identified results. We never sell your data and never use it for advertising.
- Ancestry and email are optional. If you give an email, it is kept separate from your answers and only used for updates and follow-ups, and you can remove it anytime.
- You can delete your response at any time using the private code you get when you submit. That also deletes any email you gave.
- This project is adults only (18 and over).
How this works
What the project does with what you share
What we are trying to find out
Long COVID overlaps heavily with ME/CFS and POTS, and it probably is not one single illness. We are trying to describe the likely sub-types from what people report, and to see which treatments seem to help which groups. We are also exploring whether things like diet, the gut, or ancestry line up with particular sub-types. This is exploration to point in useful directions, not proof of anything.
What we collect
Age range, roughly when you got ill, quality-of-life ratings, a symptom checklist, diet and gut questions, treatments tried and how they went, optional lab or test findings, optional notes, and optionally your country of origin and ancestry. We do not ask for your name or address, and we do not collect DNA or genetic test results. An optional email, if you give one, is stored separately from your answers.
How we look at it
We group responses into likely sub-types from the symptoms people tick, then look at which treatments people in each group report helped. We do the same for diet and ancestry. Results are shown as rough signals with the uncertainty made clear.
What this cannot tell you
People who improve are more likely to answer, symptoms come and go on their own, and belief in a treatment can help by itself. People choose to take part, so this is not a random sample, and there is no control group. So nothing here proves that a treatment works or that any group is more or less affected. It points researchers and patients toward things worth looking into properly. We publish what we find openly, including the dead ends.
Ancestry, handled carefully
Ancestry is asked about as geographic heritage, not race, and only to look for broad patterns across many people. It is optional, it is only ever reported in grouped form, and it tells us nothing about you as an individual. We will not use it to make claims about any group being superior, inferior, or to blame.
Privacy
Privacy
This explains, plainly, how The Long Haul handles your information. We make reasonable efforts to protect it, but we are a volunteer, non-commercial project, not a company or an institution, so we tell you honestly what we do.
What we collect
The answers you give in the survey: symptoms, quality-of-life ratings, diet and gut information, treatments and how they went, optional lab or test findings, and optional free-text notes. Optionally, your country of origin and ancestry. Optionally, an email address if you want updates. We also keep minimal technical information needed to run the site and limit abuse (for example, a one-way scrambled version of your network address that cannot be turned back into your real address).
What we do not collect
We do not ask for your name, your address, or your date of birth, and we do not collect DNA or genetic test data. An optional email, if you give one, is the only piece of directly identifying information we ever hold, and it is kept separate from your answers.
Sensitive information
Health information, and ancestry if you share it, are sensitive. We only ever report them grouped together across many people, never in a way tied to you, and we never sell them.
How we use it
Your answers are used only to look for the patterns described above and to show grouped results on this site. If you gave an email, it is used only to send occasional updates and follow-up survey invitations, and every message includes a way to unsubscribe. We never sell your data and never use it for advertising.
Who can see it
Only the small group of people who run The Long Haul, who keep it confidential. Anything we publish or share is grouped and de-identified.
Your choices
You can delete your response at any time using the private code shown when you submit, which also deletes any email you gave. You can unsubscribe from emails at any time. If you live somewhere with data-protection laws such as the EU or UK GDPR, or US state health-privacy laws, you may have additional rights to see, correct, or remove your data; our basis for holding any optional email is simply your consent, which you can withdraw. To ask about any of this, email admin@long-covid.org.
How long we keep it
We keep responses for as long as the project is active, so patterns can build over time. You can remove yours whenever you want with your private code.
Security
The site runs over a secure (HTTPS) connection, and access to the data is limited to the people who run the project. No online service can promise perfect security, but we make reasonable efforts to protect your information.
Adults only
This project is for adults (18 and over). We do not knowingly collect information from children.
Changes
If this page changes, we will post the updated version here with a new date.