Regular Meeting February 2023
Presentation of this year's donation project “Supporting research into the disease ME/CFS”
Our President, Charlotte Weitbrecht, was honored to welcome more than 100 club friends, Mr Heydecke, the founder of the ME/CFS Foundation and the journalist Ms Ganster from the FAZ at the Frankfurter Hof on February 8, 2023. First, Martina Altherr-Scriba, our second vice-president, introduced 5 new club members on behalf of the IWC, and warmly wecomed them with a bouquet of flowers. Following this, our donation project for the club year 2022/2023 was presented.
For this purpose, Prof. Dr. Scheiben-bogen from the Charité, the most prominent and leading researcher on ME/CFS, was introduced via video from Berlin. She gave us a detailed presentation of the clinical picture from a medical point of view. The disease can occur at any age, and women develop the disease 2-3 times more frequently than men. A temporal connection with the occurrence of an infectious disease, usually a viral infection, has been observed and the disease leads to a severe restriction on the quality of life. In the very worst case Covid 19 can also lead to ME/CFS. In Germany, approximately 300,000 patients are suffering from ME/CFS, about 40,000 of them are children.
It is assumed that 10-20% of post-Covid cases develop into ME/CFS cases, which means that the number of people with the disease is likely to increase significantly. There are no established care and research structures for ME/CFS at present. In the meanwhile, politicians have also become aware of this disease and envisaged the possibility of providing research funds for ME/CFS.
Until these funds flow, high bureaucratic hurdles have to be overcome and even then, these resources will be far from being enough. Prof. Scheibenbogen explicitly emphasised that ME/CFS is not a psychosomatic but a pathological disease in which a variety of symptoms can occur as a result of autoimmune reactions, such as brain fog, fatigue, pain, sleep disorders, circulatory disorders and neurological deficits.
The main symptom of ME/CFS is a pronounced exercise intolerance. This means that patients suffer a worsening of their health after even minor physical exertion, which can last for several days or weeks. This is precisely where patients can start with so-called "pacing", or self-management. This means that they learn to control their own energy reserves in such a way that disease symptom worsening is avoided as far as possible. There are still no biomarkers for ME/CFS that can be used to quickly diagnose the disease. There is also no causal therapy yet, but there are some promising approaches that need to be backed up by further research in clinical trials. However, it is possible to effectively alleviate many symptoms. This, however, requires above all the education of general practitioners and specialists in private practice and the raising of awareness of this clinical picture. At the end of her presentation, Prof. Scheibenbogen drew the attention off all guests to the International ME/CFS Day on May 12, 2023: a big medical symposium will be held in Berlin with the participation of the Federal Minister of Health. The conference might be broadcast online. (Please refer to the relevant daily press).
Mr Heydecke then reported on his personal motivation for establishing the ME/CFS Research Foundation. As a relative of an ME/CFS patient, he had to experience a medical odyssey over years with his son until a correct diagnosis was finally provided. It became clear to him that clinical research is the only way to make progress in the treatment of this disease and that the necessary financial resources have to be raised.
Our donations should then go to the ME/CFS Research Foundation to support further research by Prof. Scheibenbogen. Mr. Heydecke then played an impressive video which showed the audience how the dramatic symptoms of the disease completely change the life of a person affected: no quality of life is allowed any more. Finally, Mr Heydecke appealed to us to inform our networks, friends and acquaintances about ME/CFS and, of course, to solicit donations.
Both speakers were happy to answer questions after their talks.