International ME/CFS Day on 12 May 2024 with many activities

12 May is International ME/CFS Awareness Day, when numerous campaigns are held around the world to draw the public's attention to the medical and social care catastrophe that this serious illness has been causing for over 50 years. An appeal to the responsible institutions to finally fulfil their responsibility to tackle this care crisis.

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) was included in the International Classification of Diseases as a neurological disease by the World Health Organisation (WHO) as long ago as 1969, 55 years ago. Appropriate medical and social care for seriously ill people should be a matter of course. However, patients and their relatives still have to fight for recognition, medical and social care and research into this serious illness.

Since 1995, International ME/CFS Awareness Day has been held every year on 12 May in many countries around the world. The date commemorates the birthday of the English nurse and statistician Florence Nightingale. She is regarded as the founder of modern Western nursing and fell ill with Crimean fever at the age of 35. She then suffered from severe post-infectious ME/CFS-like symptoms for the remaining 50 years of her life (the disease was not yet classified at the time) and was bedridden.

In cooperation with other organisations and initiatives, we have compiled a list of all the campaigns we know of (over 200) in many German cities. Interested parties can find opportunities and suggestions for getting involved here. Press representatives will find this list an impressive example of how many places are now drawing attention to International ME/CFS Day. The list is constantly being updated.

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Some examples of activities on 11 and 12 May 2024:

The initiative #LiegendDemo ( "horizontal demo") is organising simultaneous demonstrations in twelve German cities (including Hamburg, Berlin, Freiburg, Cologne and Stuttgart) on 11 May from 1.00 pm to 4.00 pm. For their relatives and friends, the demonstrators will lie down on the tarmac and remain silent. The silent demonstrations highlight the situation of those suffering from ME/CFS, who are usually unable to get up and lie in darkened rooms in their beds and are therefore invisible. Funeral processions and lying-down demonstrations also attracted attention in March and February.

In more than 30 cities, public buildings, landmarks and the windows of ME/CFS patients and their supporters will shine in blue light. With this campaign, the LightUpTheNight4ME initiative is drawing attention to the serious multi-system disease ME/CFS.

The conference of the UniteToFight initiative will take place online worldwide on 15 and 16 May 2024. Dedicated medical professionals, researchers and patients will come together to discuss innovative solutions to bring complex, chronic diseases such as Long Covid and ME/CFS out of the shadows. The programme includes expert knowledge, personal stories and research activities from four continents (Europe, USA, Africa, Australia).

In a performance on 10 and 11 May, the Ost-Passage Theatre in Leipzig is bringing the long-term consequences of Covid-19 to the stage in a drastic way. "Crash" is a critical reflection on scientific and political entanglements in dealing with the disease and is based on the experiences of patients.

“I am very impressed by how many people are getting involved and taking to the streets, or lying on the streets, or campaigning in other ways to raise awareness of ME/CFS. Our contribution is to support research with donations and to create networking and
transparency about all research activities. To this end, we have created the ME/CFS Research Register , for example, and provide information on the status of research." Joerg Heydecke, founder and managing director of the ME/CFS Research Foundation.

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How can you support the work of the ME/CFS Research Foundation?

There is still a long way to go before diagnosis, care and treatment of ME/CFS patients will one day become a medical and social standard. We at the ME/CFS Research Foundation are focussing on biomedical research, which we see as the key element in solving these problems (more on this in our research funding strategy). To do this, we need extensive support from private donors - patients, relatives, families, friends, associations, schools, networks, companies, initiatives, event organisers and all supporters. And if you can't support us directly, maybe you can share our story and motivate others to help. Because only together is such a feat possible.

We fully translate donations and other support into scientifically excellent research, networking and ultimately visible successes, i.e. better ME/CFS diagnostics and therapies. We are happy to work together with other organisations and initiatives - please contact us!