Scattered, hard-to-use information
Helpful information is often spread across different places and difficult to piece together into something usable.
Open online community for ME/CFS and Long COVID
Real support for living with ME/CFS and Long COVID
ME/CFS Support is a community for people living with ME/CFS and Long COVID. It brings together honest discussion, weekly support group calls, and practical ways to connect with others going through the same.
Built with lived experience in mind.
Open & honest community
An open space to share, discuss and listen.
Weekly support group calls
Regular time to talk, share advice, or simply listen in.
Summaries tailored to you
See the key points before opening a long thread.
Clear layout and personalised
Designed to reduce any extra mental or physical load.
Why it exists
When support is hard to find.
Traditional healthcare services matter, but support often comes as appointments rather than the ongoing, day-to-day help people need. Many are left navigating daily life largely on their own, searching through information that is scattered, inconsistent, and hard to relate to. ME/CFS Support exists to make it easier to find what others have actually tried, what helped, and what felt worth paying attention to.
Hard to find what applies to you
Even useful advice can be hard to act on when you cannot tell whether it fits your symptoms, questions, or stage of illness.
Left to figure things out alone
Many people want shared experience and support to know they're not alone, not just more time passing while they hope things improve.
Inside the community
What you'll find inside.
The community is being shaped to help people find what matters more quickly, take part when it feels right, and find a space to relate and connect.
Member discussions
Real conversations about symptoms, pacing, day-to-day life, and what people have tried.
Summaries at the top of every thread
A brief overview first, so you can tell whether a conversation is worth your energy.
Relevant topics for your experience
A short profile helps us match conversations that are more likely to fit your situation.
Weekly group calls
A regular space for people who want live conversation, shared reflection, or quiet company.
Alternative therapy discussions
Space to compare experiences with things like acupuncture, supplements, and other approaches people are exploring.
Resource library
A growing collection of references to academic literature, notes, and the latest research into ME/CFS.
How it works
Simple from the start.
The aim is to help you settle in quickly and find conversations that feel relevant.
Join
Join and start exploring our open community.
Complete a short profile
Share a little about your experience so the right topics are easier to find.
Find relevant conversations and support
Browse summaries, join discussions, and take part in weekly calls when it suits you.
Why this started
Built from lived experience.
This started from personal experience. After an EBV infection, I developed ME/CFS after pushing myself too hard and not allowing time to rest - I have now been living with this for 18 months and counting. Before that, I was very active and fit, so adjusting to a very different pace of life has been difficult.
Along the way, I have seen first hand how isolating it can feel when so much of daily life changes and support is hard to find in one place. I have also seen how much difference better support, clearer information, and shared experience can make. That is a large part of why this community exists.
Lived experience matters
This community is being shaped by the reality of living with illness day to day, not just by ideas on paper.
Adjustment takes time
Learning to live at a different pace can be difficult, and it helps to hear from people who understand that shift.
The kind of support I wanted
The aim is to build a place where all information, experience and research is centralised, rather than trying to piece everything together alone.
Join the waitlist
Be the first to hear when it's ready.
This is an early version of ME/CFS Support. Joining the waitlist means you'll be the first to hear when the community opens more widely and new features are introduced.
Community preview
A clearer way to follow discussion.
These example conversations show the kind of structure and clarity the community is aiming for.
What has helped you spot post-exertional malaise earlier?
Members discuss pacing cues, warning signs, and habits that can make recovery feel a little less uncertain.
Pacing
PEM
Daily life
Things that have helped a little (acupuncture, supplements)
A member shares what they noticed after trying acupuncture and a few supplements, with others adding what felt worthwhile, what did not, and what they approached cautiously.
Acupuncture
Supplements
Alternative therapies
Living with uncertainty without feeling alone in it
A group conversation for people who want a place to reflect, listen, and compare experience.
Group call
Emotional support
Community
What we have planned
What we hope to add over time.
The community is starting simple, but the aim is to keep building practical support around what people actually need in daily life. These are some initial ideas to add once demand increases, and they will be shaped by what members say would help the most.
Connections to trusted local providers
Over time, we hope to help members find practical day-to-day support, from cleaners to other useful local services, with trusted recommendations and possible member discounts.
Discounts for therapy and support services
We would like to explore access to supportive services people may want to try, without overclaiming or pushing any one approach.
Gentle support for rebuilding strength
The aim would be to offer thoughtful support for rebuilding confidence and activity gradually, in ways that feel realistic and tailored over time.
Guest speakers with useful insight
That could include people with expertise in the ME/CFS field or lived experience who can offer practical sessions and advice to members.
Practical support shaped by members
The plan is to listen closely and build around what people actually ask for, rather than assuming what support should look like.
Suggestion box
What would help most?
If there is a type of support, service, or practical help you would most want added, share it here. Suggestions can be as broad or specific as you like.
Get started
Join our community
Sign up to join the community and start exploring