ME Awareness in Wales 2021
Awareness raising can happen at any time, by anyone, but traditionally the ME community individually and in groups have focussed efforts around 2 dates in the year:
International ME Awareness Day – 12 May
Severe ME Awareness Day – 8 August
WAMES has plans this year to spread the word about ME in both May and August. Read on to find about how and why, and how you can join in.
Why raise awareness?
We feel the need to raise awareness because ME has been misunderstood, stigmatised and even ignored by those who should be helping and supporting us ever since a viral outbreak in the Royal Free Hospital in London 65 years ago led to staff and patients developing the long term health condition that was studied and given the name ‘Myalgic encephalomyelitis’ by Dr Melvin Ramsay.
How has WAMES raised awareness?
WAMES has been speaking out about the need for better health and social care for people with ME in Wales since devolution, over 20 years ago.
More recently, in 2018 WAMES went to the Senedd seeking help for “a health and social care crisis – a humanitarian crisis“. Politicians listened and expressed sympathy but the NHS appeared unmoved.
In 2019 we highlighted that ME is a global health scandal, not just an issue in Wales, that people with ME are not asking for special treatment. We are asking for humane treatment and health equality. Again, we were met with silence.
In 2020 the pandemic hit and many people were affected by a global health crisis. We recognised similarities between many long people affected by long COVID and ME, and knew that this virus could trigger long term ME in some and increase our numbers significantly. We asked the Welsh Government for a combined health and care strategy for all post viral illnesses. This was ignored and it was announced that no new services would be developed for long COVID and (like ME is supposed to be) they would be treated through existing health services.
It is now 2021. Has anything changed? Have we any reason to believe that we will be heard and heeded this year? There are 2 hopeful signs.
We believe there is a growing understanding of post viral illness in all sectors of society, due to the increasing numbers of people struggling with long COVID. We also have reason to hope that the revised NICE guideline, which will be published in August, will make it easier for health professionals to understand and care for us.
May 2021 – ME facts and quotes
This month we will be spreading key facts about ME through our social media and online platforms. We are asking researchers and professionals in Wales who have an interest in ME (yes there are some!) to give us quotes about ME from their own experience.
- Send us your favourite facts and quotes, as short and snappy as possible
- Do you know a professional who has something helpful to share about ME?
August 2021 – ME health and care needs
In July we will launch a survey to find out what help patients and carers really need so we can present this to Health Boards, GP groups and Social Services in August. At the same time we will be highlighting the key messages of the newly published NICE guideline for ME/CFS via social media and directly with all those who need to know.
In the meantime if you are holding your own awareness raising events, please let us know so we can advertise and celebrate with you. Let’s join together to raise our voices for ME in Wales!