Myalgic Encephalomyelitis (ME) dramatically limits the activities of millions of people across the world. In its most severe form, this disease can consume the lives of those affected. For the first time in history, an alliance of organizations from across the globe is jointly launching World ME Day on May 12th 2022.
The European ME Coalition (EMEC) is proud to be part of this international effort, led by the World ME Alliance, to battle the stigma associated with ME and call for more research funding into this disease.
The theme for this year’s World ME Day is #LearnFromME. It aims to highlight how people with ME and experts have a huge wealth of knowledge that could help to improve the management of this disease across the world. But even with the best management approaches that are available, there is no effective treatment or cure for ME. This is why members of the Alliance are calling for more research funding for this disease.
Learn from ME
Between 17 and 30 million people live with ME across the world. Around 75% of those affected are women, and one quarter are housebound or bedbound.
Stigma has had a huge impact on the treatment and care people with ME receive around the world. New guidelines for care have been released by two major institutions in the past year that aim to improve provision – the National Institute for Health and Care Excellence in the UK and Mayo Clinic Proceedings in the US.
As part of #LearnFromME, members of the World ME Alliance are asking health and care professionals to ensure their knowledge is up-to-date by reading one or both of these guidelines.
The impact of COVID-19
Up to 80% of people with ME report an infectious trigger to their disease, and COVID-19 continues to cause a wave of new ME diagnoses. There is a large overlap between Long Covid and ME symptoms, but without a clear diagnostic test for either, it is difficult to separate out the two diseases. High quality scientific research is profoundly needed to gain knowledge about post-infectious diseases, so effective treatments can be developed. Some people have suffered with ME for decades. They deserve a better and healthy future.
Challenges in Europe
The members of EMEC will continue to raise awareness of ME at the European level. Our work to move the European Commission to take action is far from done. We see it as our duty to keep emphasizing that inaction and insufficient funding will not solve the problem.
With the support of Members of the European Parliament and in particular the newly formed special interest group for ME there is a unique opportunity to break through the negligence. This takes time, patience and perseverance, but we are determined to continue our efforts until we reach our goal.
To find out more about ME or take action to support the cause visit www.worldmeday.org