On April 19th 2023, in a hearing before the German Parliament’s Health Committee, application 20/4886 (in German – google translated version is available) was discussed. Introduced by the CDU/CSU party (comprising sister parties, the CDU and CSU and known as the “Union” for short) it called on the German federal government to help those affected by ME/CFS and their families, and for improved health and therapy care, education and recognition.
The application asked that the Bundestag recogise
The fact that the situation of people affected by post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has not improved for decades – on the contrary: the care situation of the people affected and their relatives is dramatic, characterized by hopelessness and lack of prospects and the Structures of the German healthcare system not worthy in the overall view. The fate of many people is simply overlooked.
A number of facts were laid before the Committee in the Union’s written submission
- ME/CFS severely restricts the quality of life of those affected: the patients are often dependent on care from relatives.
- Over 60 percent of those affected are unable to work, around 25 percent are unable to leave the house due to illness or are even bedridden.
- Some of the children and young people affected are attending school only partially or not at all, which can result in a high degree of social isolation.
- Although the World Health Organization (WHO) classified ME/CFS as a neurological disease in the ICD in 1969, there is still no approved curative treatment or cure.
- The number of people affected worldwide is estimated at around 17 to 24 million people.
- Even before the COVID-19 pandemic, at least a quarter of a million people in Germany were affected; including around 40,000 children and young people.
- It is estimated that around 1 to 2 percent of all SARS-CoV-2 infected people (up to 20 percent of all post-COVID sufferers) will meet ME/CFS diagnostic criteria after six months. It must therefore be assumed that the number of people affected by ME/CFS will almost double worldwide. In figures, this would correspond to 10 million new cases. In Germany, up to 300,000 more cases would be added, with this dimension putting a considerable strain on the German health and social systems.
- Even before the pandemic, the economic cost of ME/CFS in Germany was estimated at over 7 billion euros a year. The cost across the EU is estimated at around 40 billion euros per year.
In addition, the Union continued and submitted that the disease is neither recognised in Germany nor is it sufficiently known in the medical profession which means that many sufferers regularly have to wait several years for a definitive diagnosis. As in other countries, stigmatization and incorrect diagnoses or forms of treatment are common, which in turn can lead to a worsening of the disease and high secondary psychological stress for those affected and their relatives. In the German context, it raised the point that it was difficult, if not almost impossible, to gain social legal recognition by the health insurance companies, the medical services or the long-term care insurance system which contributes immensely to the precarious situation of those affected.
The Union further recognised that there are but a few scientific institutions dealing with biomedical research into ME/CFS and the development of possible treatment approaches in Germany. Of the 4 listed, ME Research UK funds or has funded recently projects in half of them – Charité Universitätmedizin Berlin (Dr Nuno Sepúlveda & Prof. Carmen Scheibenbogen) and the University of Würzburg (Dr Dr Bhupesh Prusty)
In summation, the Union pleaded
Against this background, it can be stated that the care structures for the many patients and their relatives are frightening and absolutely inadequate. There is an urgent need for nationwide, interdisciplinary and comprehensive care structures in order to alleviate the suffering of so many people in Germany, at least quickly, by ensuring good medical and nursing care. There is an urgent need for clinical testing and approval of drugs to treat the disease causally.
And so, asked that the Bundestag require the Federal Government to act and provide
- immediate financial and structural support for the establishment of the competence centres and interdisciplinary outpatient clinics for ME/CFS mentioned in the coalition agreement;
- set up a central coordination office and task forces – for example within the framework of the patient representatives of the federal states;
- to develop targeted funding for the development of biomedical therapy and to integrate a permanent budget into the individual plans 15 and 30 of the federal budget in order to enable the prerequisites for high-quality and thus promising research;
- to provide financial support for ME/CFS in future budget drafts, also beyond research,
- to commission an immediate, broad-based information campaign within the framework of the Federal Centre for Health Education (BZgA), the content of which will be developed with the participation of biomedical experts and with the participation of those affected;
- to significantly facilitate or create access to health and social systems for people affected by ME/CFS by including ME/CFS in the catalog of § 116b Para. 1 SGB V and the Disease Management Program (DMP).
- ME/CFS to be highlighted in the official communication of the Federal Ministry of Health (BMG) in future in order to improve the recognition of the disease and indirectly the position of those affected;
- accelerate research into the mechanisms of the disease and establish a biomarker that will sensitise
physicians to ME/CFS and promote long-term awareness of the disease;
- actively participate, represented by the BMG (Federal Ministry of Health), in the establishment of an intergroup working group using the example of the All-Party Parliamentary Group on ME in the House of Commons and to
support this group with the appropriate technical expertise;
- campaign for the expert recognition of the illness by the medical services and thus the provision of nursing services to be improved through targeted training and education offers (with the co-operation of the Federal Centre for Health Education (the BZgA)) in order to relieve the family members financially and psychologically;
- to promote rehabilitation offers for relatives in order to reduce the physical and psychological stress on these people and to enable the severely ill to participate in school or work;
- support rehabilitation facilities in the development of disease management concepts that do justice to the respective symptom complexes and special features such as stress intolerance (postexertional malaise – PEM) and want to offer rehabilitative therapies for mild cases;
- advocate for ME/CFS to be included in the curricula or catalogues of learning objectives of medical faculties in Germany in order to raise awareness of the disease and draw the attention of young medical professionals to this symptomatic picture;
- to set up a comprehensive range of digital information by the BMG – with the offer to involve the state ministries which deals with the symptoms, care, treatment, research and other important information on ME/CFS; the design of the content is carried out with the participation of proven experts and with the participation of those affected;
- to coordinate all measures for the care of the post-COVID sufferers with the establishment of the long-COVID outpatient clinics, as a significant proportion of those affected develop ME/CFS.
Next stages (simplified) – if looked upon favourably by the Health Committee the Bundestag will vote on whether to pass the resolution before it goes to the Bundesrat, and if passed or not objected to, then counter-signed by the relevant minister and the Federal Chancellor, duly authorised by the Federal President and promulgated in the Bundesgesetzblatt (Federal Law Gazette) at which point it is passed into law.