ME/CFS resources: where to find reliable help

3–5 minutes

When you are newly diagnosed with ME/CFS, finding reliable information is harder than it should be. Credible resources exist alongside clinics making unsupported claims and supplement sellers targeting 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 — ME/CFS overview. The NHS’s own pages on symptoms, diagnosis, and treatment. A useful link to share with family or employers who want an ‘official’ source.

NICE NG206 — ME/CFS guideline. The 2021 clinical guideline that sets the standard for ME/CFS care in the UK. This is the document that removed graded exercise therapy and established pacing as the primary management approach.

Patient advocacy and charities

These organisations fund research, engage with governments and health bodies, and produce patient-facing materials.

  • MEAction – A global patient-led advocacy network covering news, campaigns, and local chapter activity.
  • Action for ME (UK) – One of the longest-established ME/CFS charities in the UK, offering support services, welfare guidance, and research updates.
  • ME Association (UK) – Publishes detailed, medically reviewed factsheets covering most aspects of ME/CFS. A useful reference library for patients and those supporting them.
  • Solve M.E. A US-based organisation focused on research and advocacy for ME/CFS and Long Covid.
  • Emerge Australia – Australia’s national ME/CFS patient organisation, with plain-language guides for patients and clinicians.

Research foundations

These organisations fund and publish substantive research. Their updates are generally written for a general audience rather than a specialist one.

A note on research coverage

Research foundations tend to distinguish carefully between findings that are promising and those that are preliminary. They are a more reliable source of scientific updates than general health news outlets.

  • Open Medicine Foundation (OMF) – Funds major ME/CFS research centres globally and publishes accessible summaries of ongoing work.
  • DecodeME (UK) – The largest ME/CFS genetic study in the world, analysing samples from 20,000 people with ME/CFS.
  • Bateman Horne Center (US) – A clinical and research centre that produces educational materials for both patients and healthcare providers.

Pacing and symptom tracking tools

Finding your baseline is easier with a consistent tracking method. These tools range from dedicated apps to a simple notebook.

  • Visible – A wearable-linked app designed for people with ME/CFS and Long Covid. 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.
  • Paper diary. A basic notebook works well for many people. Recording daily activities and symptom changes is often enough to identify patterns over time.

Books

For people with ME/CFS

ME/CFS Crash Survival Guidebook by the Bateman Horne Center — a free, downloadable guide to managing and preventing crashes.

Through the Shadowlands by Julie Rehmeyer — a memoir about navigating ME/CFS.

For family and carers

How to Live Well with Chronic Pain and Illness by Toni Bernhard — mindfulness-based approaches for managing chronic illness and supporting those who have it.

Support communities

Connecting with others who have ME/CFS 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 established charities tend to be better moderated.
  • r/cfs on Reddit – One of the largest ME/CFS communities online, covering practical questions, symptom management, and general support.
  • MEAction local chapters. Many countries have local groups running virtual meetups and advocacy campaigns.

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. It is reasonable to step back when you need to. Protecting your energy takes priority.

Resources to be cautious of

Not every resource presenting itself as ME/CFS support is reliable. Be cautious of:

  • Expensive supplement protocols. Some supplements may help individual symptoms in some people. There is no validated supplement stack for ME/CFS, and sellers claiming otherwise should be treated with scepticism.
  • Clinics or practitioners promising a cure. There is no cure for ME/CFS yet. Anyone claiming otherwise is either misinformed or has a financial interest in your believing them.
  • Graded exercise therapy (GET). Once recommended, GET has been widely discredited and can cause serious harm. NICE NG206 (2021) explicitly removed it from ME/CFS treatment guidelines.

Still looking?

Our FAQs page covers the most common questions about ME/CFS.