Association for Myalgic Encephalomyelitis

Campaigning and Mobilising the Community

In addition to struggling with the illness, ME patients are also struggling with ignorance, discrimination and stigma in all segments of social life. Even more, many are having difficulties getting proper medical treatment which can lead to worsening of the symptoms and make the condition even more difficult to manage. ME patients’ family members and loved ones receive almost no help and support from relevant health and social institutions either. And despite notable progress when it comes to research and introduction of new therapies/treatments, there is virtually no hope of finding a cure in the near future. The need for campaigning, raising public awareness and mobilising the wider community to get more involved is thus just as important as it was a decade ago.

Exerting Incessant Pressure on the Government and Relevant Institutions

ME patients aren’t receiving proper medical treatment and support from relevant institutions due to lack of laws and policies that would protect their rights and sanction discrimination. To change things for the better, campaigning must include exerting incessant pressure on the Government to ensure passing of the laws and policies that will regulate the many issues and open questions, and above all, enable ME patients and their families to get the much needed help and support.

Encouraging the Public to Get Involved in Campaigning

Policymakers are bombarded with tonnes of requests and initiatives to help change people’s lives for the better, making it very difficult on them to suit just about everyone. And no matter how eager they are to help, they must prioritise in some way. In practice this usually means giving a priority to initiatives with a strong public support. For that reason it is crucial to encourage the public to get involved in campaigning.

To attract the attention of as many people as possible and persuade them to actively support campaigns that seek to make a difference for ME patients, it is necessary to educate them about the problem. Likewise, it is critical to raise the public awareness about the seriousness of the condition and the need for immediate yet thorough changes. This can be achieved in many ways, while some of the most commonly used methods include organising various awareness raising events, distributing informational/educational materials and trying to get the media attention, preferably news media, magazines and TV shows/series with a major influence on public opinion.