Long Covid resources: where to find reliable help
When you are newly diagnosed with Long Covid, finding reliable information is harder than it should be. Credible resources exist alongside private clinics making unsupported claims, supplement sellers promising relief, and practitioners offering expensive ‘cures’ to people who are desperate for answers.
This page is a curated starting point. Every resource listed here is patient-led, research-backed, or run by a recognised charity.
Official guidance
NHS — Long Covid overview. The NHS’s own pages on symptoms, diagnosis, and treatment. A useful link to share with family, employers, or anyone who wants an ‘official’ starting point.
NICE NG188 — Long Covid guideline. The UK clinical guideline covering ongoing symptomatic Covid-19 and post-Covid-19 syndrome. This is the document that underpins NHS Long Covid care.
Patient advocacy and charities
These organisations provide support services, educational materials, and advocacy on behalf of people with Long Covid.
#MEAction — a global patient-led advocacy network covering both ME/CFS and Long Covid, with chapters across multiple countries.
Long Covid SOS — a UK patient-led charity campaigning for recognition, research funding, and better treatment. One of the earliest Long Covid advocacy organisations established in the UK.
Long Covid Support — a UK charity acting as Secretariat for the All-Party Parliamentary Group on Long Covid. Runs global online support groups with tens of thousands of members.
Long Covid Kids — a UK-based international charity focused on children and young people with Long Covid. Children’s Long Covid is particularly underserved in mainstream coverage, and this organisation fills a significant gap.
Solve M.E. — a US organisation focused on research and advocacy for both ME/CFS and Long Covid.
Research organisations
Research organisations tend to distinguish more carefully between promising and preliminary findings than general health news outlets. Their updates are often a better source of scientific news than mainstream coverage.
Bateman Horne Center (US) — a clinical and research centre covering ME/CFS and Long Covid, with educational materials for both patients and clinicians.
Patient-Led Research Collaborative — an international group of researchers who themselves have Long Covid. Published the earliest detailed research on Long Covid symptoms and continues to shape the research agenda. Their publications are accessible and patient-oriented.
Open Medicine Foundation — funds research into post-infectious illnesses, including Long Covid, and publishes plain-language updates on its work.
Symptom and flare tracking tools
Identifying your personal triggers is easier with a consistent tracking method.
Paper diary. A basic notebook works well for many people. Recording daily symptoms, activities, sleep, and triggers is often enough to identify patterns over time.
Visible — a wearable-linked app designed specifically for people with Long Covid and ME/CFS. It tracks heart rate variability and can flag when you are approaching your limit before a crash develops.
Bearable — a flexible symptom tracker for logging activities, symptoms, medications, and mood in one place. Works well for pattern-spotting across weeks or months.
Support communities
Connecting with others who have Long Covid can reduce isolation and provide practical insight that clinical resources often do not cover.
Facebook support groups. Groups vary considerably in quality. Those run by or affiliated with the established charities above tend to be better moderated.
r/covidlonghaulers on Reddit — one of the larger online Long Covid communities. Covers practical questions, symptom management, and general support.
Long Covid Support online groups. The Long Covid Support charity runs large global online support groups. Access is free through their website.
A note on community spaces
Online communities can be valuable, but they can also be draining — particularly if reading about others’ experiences worsens your own. For Long Covid specifically, communities can also get caught up in broader political debate around COVID-19. It is reasonable to step back when you need to.
Resources to be cautious of
Not every resource presenting itself as Long Covid support is reliable. Be cautious of:
Content framed primarily around political positions on COVID-19. Reliable Long Covid information is neither minimised by those who want to downplay the pandemic nor sensationalised by those with another agenda. Stick to sources that talk about the condition clinically.
Expensive supplement protocols. Some supplements may help individual symptoms in some people. There is no validated supplement stack for Long Covid, and sellers claiming otherwise should be treated with scepticism.
Clinics or practitioners promising a cure. There is no cure for Long Covid yet. Anyone claiming otherwise is either misinformed or has a financial interest in your believing them.
Functional medicine clinics charging significant fees for protocols built around food elimination, specialised testing, or ‘detox’ programmes. Many charge heavily for interventions with limited evidence.
Programmes framed around pushing through symptoms. Graded exercise and heavily rehabilitation-framed programmes have caused documented harm in people with Long Covid who experience post-exertional malaise. Approach with caution, not conviction.
Still looking?
Our FAQs page covers the most common questions about Long Covid.