Advocacy & awareness

ME/CFS is often misunderstood and its severity underestimated.

Join us to spread the word as we work to get ME/CFS taken seriously in Wales.

Tell your story

Personal stories carry real power. They can encourage others, help people feel less alone, and show the human impact behind the statistics. WAMES can use these stories, in Welsh and English, to advocate for better services, and our media officer can share them more widely to raise public awareness.

Read stories by people with ME and carers

Contact the media officer to arrange to discuss how you can contribute:

Annual awareness days

Annual awareness days provide a time and theme we can all rally around to amplify our message:

This is a time when people round the world look for ways to highlight the long term and disabling effect that the condition can have on people, and the wide ranging disruption and distress it can cause to families and friends. It also serves as a focus for fundraising events.

The May 12th date was chosen because it is the birth date of Florence Nightingale, the nurse who inspired the founding of the International Red Cross. She is understood to have become ill in her mid-thirties, with an unknown debilitating condition. Despite her illness and being largely bedridden, she founded the first School of Nursing. Her example inspires people with ME to persevere and work for change.

Suggestions for how you can get involved:   

  • Wear blue – wear blue clothes and/or accessories and be prepared to explain, when asked, that it is a symbol of ME when worn in May
  • Wear blue ribbons – they can be bought online
  • Organise an art competition, and put on a display to illustrate ME
  • Organise a concert
  • Switch off the muzak – ask shops to turn off music and display a poster explaining sensitivity to noise
  • Share your story with your local media
  • Mount a display in your local library or community space
  • Organise a fundraising event
  • Share your activities with others to amplify the awareness raising effect!

On one Sunday a year, the Sunday after World ME Day, people from all over the world meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to ME charities and causes.

FInd out more from the creator Anna Redshaw: Blue Sunday FAQs

Fundraise with WAMES: Wames Blue Sunday Facebook page

Severe ME Understanding & Remembrance Day 6th August

This day aims to bring public attention to ME/CFS for the sake of all those presently suffering from Severe Myalgic Encephalomyelitis and to remember all those who have died from ME.

A day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.

What’s the significance of 8th August?

This is the birth date of Sophia Mirza.  Sophia was bed-bound with severe Myalgic Encephalomyelitis and was a victim of medical abuse.  Her doctors did not believe that Myalgic Encephalomyelitis was a physical disease and so she was forcibly taken from her bed/home by social workers, police officers and doctors, and kept in a psychiatric facility where she received inappropriate treatment and care.  Sophia subsequently died of ME at the age of 32.  Her post-mortem revealed widespread inflammation in the spinal cord.  This same inexcusable abuse still goes on with the number of deaths mounting each year. Read more about the history

Carers

Carers are an essential support for many with ME/CFS. Carers Week is held every year to recognise the vital contribution of unpaid carers—people who provide care and support to family members, friends, or neighbours to all minds of disabilities, illnesses, mental health conditions, addictions, or age-related needs. It also helps individuals who may not identify as carers to recognise their role and access support. Read more

Carers Rights Day is an event aimed at raising awareness about the rights of unpaid carers. It takes place every November and is supported by Carers Trust Wales, Carers Wales and funded by the Welsh Government. Activities aim is to empower carers and ensure they receive the support they need.