The gentian blooms blue, blue, blue, and the endless expanse of the sky or sea is also blue. And so is the hope of at least 17 million ME/CFS sufferers worldwide. The hope of getting well at some point.
On the occasion of the International Day for ME/CFS on May 12th, buildings and monuments around the world were lit up in the awareness color blue on the night of May 13th to draw attention to the disease and to raise awareness of it. Many German cities also took part in the “Light up the Night for ME” campaign.
Although ME/CFS has been recognized as a disease since 1969, it has been poorly understood. There is simply a lack of knowledge about the clinical picture and, above all, of research funds. In Germany alone, it is assumed that there are around 300,000 ME/CFS sufferers.
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), usually starts with a viral infection and leads to extreme fatigue and constant pain. Severe concentration and circulatory disorders through to breathing difficulties can lead to complete confinement to bed.
“Those affected hardly have any opportunity to express their suffering,” says FDP politician Robert-Martin Montag. That is why it is a silent suffering, because the sick are often tied to their homes. The Thuringian member of the state parliament has been dealing with the clinical picture for two years now.
“In the beginning you run into a lot of walls and fight against a lack of understanding,” says Montag. “But if you have access and see what it means for those affected, then nothing motivates me more than to take action against such political ‘stoppering’.” There has already been some movement in Germany in this regard, but there is a lack of implementation.
According to Robert-Martin Montag, initiatives such as “Light up the Night” are extremely important: “If a problem has the necessary attention and thus relevance in everyday political life, this attention is crucial to create sensitivity for the many people affected.” The Thuringian The state parliament therefore took part in the campaign.
“It’s a good way to raise awareness of this disease in society,” said Dennis Weilmann, Mayor of Wolfsburg. In addition to the Wolfsburg Castle, monuments and buildings throughout Germany shone in blue, such as the Zeiss Planetarium in Berlin, the Lübeck Holsten Gate and the Castle in Bad Pyrmont.
“Bad Pyrmont is known as an important health location in Germany,” said the city on Instagram. That is why we are very happy to support the campaign. “Especially in times of Corona and Long Covid, people are becoming more aware of the topic of ME/CFS,” said Antje Runge, Mayor of Oberursel. There, the foyer of the town hall shone in blue.
Green MEP Katrin Langensiepen called on the EU Commission to provide additional funding for biomedical research into ME/CFS. “Especially now, in the context of the Covid-19 pandemic, we must seize the moment to invest in more research and education across the EU.”
Until now, ME/CFS is poorly understood and often underdiagnosed. “We have to ensure that people are better informed about the disease and that those who are ill have social security,” says Langensiepen. It is also important to improve cooperation between Member States on examination methods, diagnosis and treatment.
This is also confirmed by FDP politician Robert-Martin Montag. There is an urgent need for action, especially at the federal level, “out of the pandemic mode and into the working mode”. Although ME/CFS is a work order in the coalition agreement, too many care and research questions are still open.