Hope 4 ME & Fibro Joins World M.E. Alliance

We are delighted to have been accepted as members of the World ME Alliance!

"Originally founded in 2014, we are a unique alliance of ME organisations from around the world. Our membership is made up of senior leads/representatives from national ME organisations, working together to achieve change for people with ME at a national and international level.

We are keen to extend our connections and would welcome new member organisations. Find out more here.

Why is this important?

Before the COVID-19 pandemic, there were between 17 and 30 million people living with ME across the globe. However, COVID-19 has triggered a surge in the number of people affected by ME, and we now estimate that over 55 million individuals are living with the debilitating symptoms of ME. This has a devastating impact, not just on those with the disease but on their family, friends and their countries’ economy too.

By collaborating we increase our reach, impact and knowledge base. We can build stronger campaigns, share resources and engage international bodies, such as the World Health Organization.

A dedicated space for ME organisations

We create a dedicated space for organisational leaders to share the knowledge, experience and challenges they face in their countries. We acknowledge that the approach to ME treatment and research varies widely across the world. For this reason, our World ME Alliance prioritises space for uplifting organisations with local expertise.

Advocacy on an international stage

The World Health Organization (WHO) has the power to impact real change for people with ME and other post-infectious diseases. This is not currently happening. We need leaders from the WHO to begin to prioritise quality of life as well as death from Non-Communicable Diseases such as ME. To do this, we need to join with organisations working around other diseases to create a unified lobby.

FIND OUT MORE ABOUT WHAT WE DO

From World ME Alliance website: Hope 4 ME & Fibro NI Joins the World ME Alliance

"As we extend our reach across the globe, we are pleased to have one of the foremost ME organisation in Northern Ireland joining us. Hope 4 ME & Fibro Northern Ireland have an impressive track record in their country over the past decade, and we look forward to seeing how our collaboration can create opportunity for both our organisations.

This registered charity started out as a support group, but has grown immensely over the years; achieving the Queen’s Award for Voluntary Services in 2020. They have been particularly driven in their aim of raising awareness among politicians and improving healthcare professional education. By holding ME and Fibromyalgia conferences in the Northern Irish parliament buildings, Stormont, and bringing in eminent researchers, campaigners, and medical professionals from across the world to speak about their work, the Charity have been able to demonstrate both the impact of the disease, and ways in which we can and should be supporting people with ME.

On the healthcare professional education front, Hope 4 ME & Fibro NI have created a series of five educational webinars on ME, targeted at healthcare professionals. This series of webinars aimed to explore the radical changes taking place within the new proposed National Institute for Health and Care Excellence Guideline (NICE) for ME/CFS, and the important implications arising from the developing ‘Long Covid’ crisis. The webinar series brought together global experts in the field of ME/CFS, to share their knowledge and experience. These are now hosted directly on the official Health & Social Care Northern Ireland Clinical Education Network website, and in the first two months from release, have been viewed over 900 times."
Watch the webinar yourself here

Through the COVID-19 pandemic, the organisation has continued to provide support for members through online events, conferences and social gatherings, craft sessions and other activities. Prior to this they organised in person meet ups, and aim to begin providing this again when safe to do so.

You can find Hope 4 ME & Fibro Northern Ireland on facebook, twitter, or check out their website."