Last updated: 26th September 2024.

An ongoing list of useful resources for people with ME/CFS and their carers. This is UK based and only includes things I have experience of or that come recommended by trusted people. If you know of anything that should be added, let me know.

Professional support

The Optimum Health Clinic - a private fatigue clinic offering integrative support for healing from ME/CFS and related conditions. If I can only recommend one thing that you do to support your recovery, it would be to go on their 90 day Reset programme. They also run Healing Together, a weekly community zoom for people who have been on one of their courses.

Support groups

Hertfordshire ME/CFS Support Group - a community group run by volunteers providing self-help, support and social sessions for people with ME/CFS and similar conditions.

Events

Blue Sunday, the tea party for ME - an annual virtual celebration and fundraiser held on social media on the Sunday after World ME day (it was held on 19th May in 2024)

World ME Day, run by the World ME Alliance.

Apps

Visible, an app and wearable armband that helps you track energy for pacing, not for fitness. Designed for people with ME/CFS, Long Covid and related conditions.

Charities

Action for ME, a UK charity empowering people with ME to fulfil their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure. Their membership magazine, InterAction, is worth getting and is the most positive of the charity magazines I’ve read.

The ME Association, a UK charity established to offer relief to persons of all ages with ME/CFS through the provision of information, to further education in all aspects of the illness, and to support research and to publish the useful results. Their website contains many resources for understanding and living with ME, including guides to applying to benefits.

Smile for ME, a UK charity for and run by ME sufferers and carers of all ages that sends personalised presents (‘Smiles’) to nominated ME sufferers and their carers to brighten their day and let them know someone cares. You can nominate people via their website.

Forward ME - a coordinating body for multiple UK ME/CFS charities.

ME Research UK - a UK charity focused on commissioning and funding research into ME.

ME Action UK - the UK branch of the US charity ME Action, focused on campaigning for recognition, education and research.

Books

Diagnosis and Treatment of Chronic Fatigue Syndrome, Myalgic Encephalitis and Long-Covid (3rd Edition) by Dr Sarah Myhill. I’ve read the 2nd edition which contains good information about ME and recovery. Some of the info isn’t supported by research, but it’s still a good resource. The third edition (which I haven’t read) is supposed to be more concise and focused, so I’d recommend trying that.

Recovery from CFS: 50 Personal Stories, edited by Alexandra Barton. I’ve read half of it and it’s positive to hear about the many different ways people have recovered.

The Sleep Book by Guy Meadows. A helpful book on improving sleep, with all the usual tips and techniques. It also focuses on acceptance and working with thought patterns around sleep, which I found helpful.

Recovery by Gavin Francis. A short and gentle book on the history and importance of convalescence and the ways that we can recover.

The Miracle of Mindfulness by Thich Nhat Hanh. A great short and compassionate guide to mindfulness.

Recovery Stories

David’s story, from the Optimum Health Clinic.

Marie’s story, also from the Optimum Health Clinic.

Reports and Studies

Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management - National Institute for Health and Care Excellence (NICE) guideline [NG206], Oct 2021. A major update into the recommended approach for ME/CFS treatment, including removing Graded Exercise Therapy as a suggested approach. A useful reference if your GP or other medical practitioner isn’t up to speed.

DecodeME - the world’s largest study into the genetic causes of ME/CFS, run at the University of Edinburgh and funded by UK charities including Action for ME and Forward ME.

Practitioners

Dr Sarah Myhill - author of Diagnosis and Treatment of Chronic Fatigue Syndrome, Myalgic Encephalitis and Long-Covid and a long time advocate for ME/CFS patients.

Blogs

Chronically Craptastic - Emma’s journey with ME and POTS.

The Slow Lane - Anna’s journey with ME, and the home of Blue Sunday, the tea party for ME.

MEpedia - a crowdsourced wiki knowledge base focused on the history, science and medicine of ME. Founded by ME Action, the US charity.

News

BBC Breakfast show on ME/CFS and Long Covid from 27th August 2024. 15 mins, contains interviews with Dr Binita Kane, Dr William Weir, Karen Hargrave and Oonagh Cousins. It mentions symptoms, severity, history, Melvin Ramsay, psychological framing, NICE guidelines, problems receiving care for severe patients, debunked Graded Exercise and pacing.

Exercise

Mindful Movements - a series of very gentle exercises for people with limited energy to help get some movement back into your body.

Nourish Yoga - weekly yoga classes run by and for those with chronic illness. All classes are gentle and slow-paced, and instruction is invitational. There’s also a community chat afterwards and it’s a lovely supportive group.

Getting out

Wild Places for Tired People. A collaborative map created by Clare Reddington and Anna Starkey, for places in the UK where you can get out in nature using limited energy (e.g. a car park right next to a great view).

Virtual Holidays with Claire Wade. Every month Claire virtually visits a new county in the UK, by learning about places there, trying the food, reading local books and watching shows set there. It’s a follow along on Instagram, open to all.

Humour

Not to do with ME/CFS, but because sometimes we need a good laugh!

False Knees - surreal bird comics.

Strange Planet - gentle observational comedy.

Hark! A Vagrant - an oldie but still the finest historical/literary comics ever.

Bad Machinery - John Allison’s extended collection of great comics. My favourite.

Perry Bible Fellowship - unusual offbeat comics (you have been warned!).

Dimension 20 - Dungeons & Dragons played by improv comedians. The only TV show I watch - hilarious with some great emotional story arcs. You don’t need to know the D&D rules as we learn along with the cast in the first series. A few series are free on YouTube - start with Fantasy High Season 1.

Places in Nottingham

For anyone who lives in Nottinghamshire, here are a few more resources you might like.

Primary Integrated Community Services - Pain and ME/CFS Pathway - a NHS Nottinghamshire based ME/CFS service that you can get referred to by your GP.

ME Self Help (MESH) - A Nottingham based ME group that meet regularly to chat and support each other. They organise on facebook and meet at the cafe in Sainsbury’s, Arnold.

Something missing? Let me know!