Lost Voices Foundation
Help for people with ME | CFS
Chronically ill after infection?
Myalgic Encephalomyelitis
It is primarily young people who are snatched from life by an infection.
The neuroimmune multisystem disease Myalgic Encephalomyelitis (ME), often referred to as Chronic Fatigue Syndrome (CFS), is a disease that transcends all dimensions.
Our work
There is no medical, social, or nursing care for ME/CFS patients in this country. The Lost Voices Foundation advocates for these „lost voices“ to bring them into the focus of the healthcare system. We are active in the following areas for this purpose:
Living with ME | CFS
People with ME have only a fraction of their former capacity. As a result, they are no longer able to manage their lives as usual. The core symptom is so-called PEM (= post-exertional malaise), which describes a severe worsening of symptoms after even the slightest exertion. This exertion is often everyday activities such as walking or showering. This deterioration often only occurs 24-48 hours after the effort and can last for several days to weeks or even become permanent. One of numerous symptoms is extreme and long-lasting pathological exhaustion.
Current research shows that ME is a chronic physical illness. More and more measurable laboratory parameters are being found that point to an unending infectious process. The absence of certain enzymes plays a role, as do genetic factors and hormone dysregulations.
Video
News
Gina Livingston ”My Bed” ME/CFS Awareness Campaign
In Awareness Month, Gina Livingston is releasing a new song for the first time since 2007. She is using her song „My Bed“ to raise awareness for the often invisible illness ME/CFS.
Your personal ME/CFS illness forms the core of „My Bed“ and is the driver for this ME/CFS Awareness campaign. It is Gina’s first song release since 2007 following her illness. She is supported by the Lost Voices Foundation to raise funds for ME/CFS research.
Successful benefit concert in favor of the Lost Voices Foundation in Mainz-Kostheim
A musical evening full of commitment, emotion, and solidarity: On April 18, 2026, the MBR Big Band hosted its benefit concert in support of Lost Voices...
We are looking for support for our team!
The work of the Lost Voices Foundation relies on the commitment of many people who volunteer their time, knowledge, and energy. To further our projects...
Contact
Phone number: 0511 | 2706751
Email: info@lost-voices-stiftung.org
Cooperation Partner Network PEDNET-LC