On May 12, 2021, World ME Day, we are asking the world to pay attention to the difficult situation of patients whose lives have been abruptly halted by the illness Myalgic Encephalomyelitis, sometimes called chronic fatigue syndrome (ME/CFS).
Although there are millions of people with ME worldwide, the illness is under-researched and still poorly understood. There is no diagnostic test or treatment. It has a considerable economic impact because patients are often stricken with ME/CFS in the most productive years of their lives and remain sick for decades. On top of this, the lives of those who are caring for ME/CFS patients are also deeply affected.
Today, we would specifically like to commemorate the patients who have died during the past decades as a consequence of the illness, mistreatment or neglect.
And we honor those who, despite their severe limitations, continue to fight the injustice surrounding the disease.
The European ME Coalition (EMEC) believes there is a major opportunity for the European Union to fund more ambitious research projects that will have an impact. The research program Horizon Europe offers a great chance for the EU to make a structural investment in scientific research on ME/CFS that properly reflects the disease burden.
Due to the coronavirus pandemic there is a surge of patients with a post viral illness (long COVID) that is similar to ME/CFS. Whether it shares a common mechanism remains to be determined, but in both cases a sudden infection transforms healthy active people into a shadow of their former selves. This only emphasizes the need to get a better understanding of this type of illness.
Research into the pathology of ME/CFS is, however, still severely underfunded. EMEC believes this situation urgently needs to change. Scientists should be given better opportunities to find an effective treatment for this disease, so patients have a chance to regain their healthy, active lives in society. That is our deepest wish.
We are committed to make sure this change will happen. The members of EMEC are all affected by ME/CFS, either as patients, or as family members. We personally feel the need for solutions and improvement every day. Our personal struggles are the breeding ground of our passion to continue our work to make this happen.
One of the best things to remember today is that we are no longer alone. We have healthy allies who are standing with us. Scientists, journalists, academics, politicians who clearly see the injustice and the scientific problems that have characterized the field for far to long. They stand with us to demand medical and scientific justice. We want to thank them for their invaluable support.
Progress may go much slower than we wish, but there is also reason to celebrate the victories that our community has achieved over the years. Together we will be able to succeed.