Our Pleas to the German Bundestag

We ask the German Bundestag to commit itself to the provision of healthcare appropriate to the disease severity of ME/CFS, in particular by amending § 116b SGB V as well as through awareness campaigns.

Further, we ask the House to give hope to ME/CFS sufferers by investing extensively in biomedical research on their disease.

Finally, we ask the Parliament to stand by those affected on a permanent basis, for example by appointing a designated representative or by creating an inter-factional working group.

Reasoning of our Petition

ME/CFS has been classified by the WHO as a disease of the nervous system since 1969 (ICD-10: G93.3). The number of people suffering from ME/CFS (long: „Myalgic Encephalomyelitis/Chronic Fatigue Syndrome“) in Germany is estimated at around 250,000, making the disease about three times more common than HIV/AIDS. ME/CFS particularly strikes younger people. With around 40,000 minors affected, ME/CFS is not only the most common cause for long periods of school absences; the relatively early age of onset also contributes to the enormous socioeconomic costs of ME/CFS, which are calculated at EUR 40 billion annually for the EU.

ME/CFS is a neglected disease that, despite its prevalence and severity, is not part of the curriculum at any German medical school and is therefore not well known amongst physicians. According to studies, ME/CFS remains undiagnosed in more than 90% of cases even in the U.S., although there generally more attention is being paid to the disease than in Germany. However, it is probably an even more significant problem that disease severity and complexity as well as the degree of impairment of patients are usually completely misunderstood, even when ME/CFS is diagnosed correctly.

The broad symptom picture of ME/CFS makes two-thirds of those affected permanently unable to work, a quarter are even unable to leave their house or bed, and according to studies, the health-related quality of life of sufferers is on average lower than that of far better-known conditions (such as lung cancer, stroke, MS). Nevertheless, the symptoms triggered by ME/CFS are often wrongly classified as mild, imaginary or psychosomatic and surmountable. As a result, sufferers receive neither appropriate medical care nor access to social security benefits in most cases. In addition, patients are still often being subjected to harmful therapy attempts.

Last but not least, the neglect of ME/CFS has led to the non-existence of any effective treatment approaches to date. Since at the same time spontaneous remissions – as with other severe diseases – are very rare, this means for those affected that they have to expect decades of suffering until their death. This lack of perspective and secondary distress are both reasons for a high suicide rate among ME/CFS patients.

While the pathomechanism of ME/CFS is still under investigation, a causal relationship with viral infections can be established for the majority of cases. The issue of ME/CFS is therefore now experiencing even greater significance due to the current corona pandemic, since scientists worldwide believe that ME/CFS is one of the long-term consequences of Covid-19. As a result, there could soon be 100,000 additional cases in Germany alone.

We are aware that a problem as complex as ME/CFS cannot be solved by isolated measures. For this reason, it is also a particular wish of ours that the German Bundestag should take on our hopeless situation in the long term and institutionalize its commitment.

Explanation: Why Did We Choose These Specific Requests?

Our first demand to the Federal Parliament aims to improve the medical care situation for ME/CFS sufferers in Germany, which currently is devastating. Therefore we particularly ask for the inclusion of ME/CFS in the catalogue of § 116b (1) SGB V. This provision is part of German Social Security Law and regulates so-called „outpatient specialist care“ (ASV), which concerns the diagnosis and treatment of complex diseases or diseases that are difficult to treat. ASV allows for additional ways of providing healthcare services for the diseases mentioned in the catalogue of § 116b SGB V. This should lead to improved cooperation, qualification and equipment of all involved healthcare providers.

Our second demand regards investments in biomedical research on ME/CFS. At the end of 2020 the German Bundestag made dedicated funds available for ME/CFS for the first time, which was the result of efforts made by a small number of MPs. This was a very important first step, as these funds serve to set up patient registers and biobanks – thus creating the prerequisite for high-quality and promising research. To ensure that this kind of research gets underway quickly on the scale required, we are now asking the Bundestag to make provision for funding of disease-specific scientific research into ME/CFS. In our opinion, the scope of this funding must particularly take into account the large disease burden and the general neglect of ME/CFS during the past decades.

Finally, as we are aware that even an implementation of the two aforementioned points would not lead to the solution of all problems in the field of ME/CFS, we also ask the German Bundestag to create a permanent contact with ME/CFS sufferers and patient organisations, for example by appointing a designated parliamentary representative or by establishing an inter-factional working group. In particular, we hope that this will provide lasting political support so that further political measures can hopefully completely eliminate neglect and stigmatisation of ME/CFS in the future. Despite the different working approaches of the two parliaments, the „All-Party Parliamentary Group on Myalgic Encephalomyelitis“ (APPG on ME) in the British House of Commons could serve as a model for the future commitment of the German Bundestag.

After all, some may wonder why we do not also, or instead of aforementioned points, call for the general „recognition“ of ME/CFS. Of course, definitive and full recognition of existence and severity of ME/CFS in medicine, politics and society is an extremely important concern for us – as it probably is for all those affected as well as for their relatives and supporters. However, this would be a request upon which the German Bundestag, as the federal parliament, could not decide directly. In political terms, such recognition would be expressed anyway by implementing our aforementioned proposals. In all other respects, though, the German Bundestag can only work towards this goal through different parliamentary acts, but cannot establish it conclusively through legislation.

Explanation: What can be accomplished by SIGNforMECFS?

We deliberately submitted the SIGNforMECFS petition directly to the German Bundestag instead of relying on one of the many independent petition portals. This offers great opportunities. The fact that it has now been published on the official petition platform of the German Bundestag means in particular that the Committee Service has already carried out a kind of preliminary examination and that the Petitions Committee of the German Bundestag will in any case deal with our petition after the end of the signing period. As a matter of principle, such a publication occurs at most once per legislative period on each matter, so it is by no means a given. This is therefore a really important opportunity and every single signature lends additional weight to our cause!

Our petition offers a particularly great opportunity for ME/CFS sufferers if we succeed in gaining 50,000 signatories. If this quorum is reached, the procedural rules of the Petitions Committee of the German Bundestag state that a hearing must be held in a public committee meeting (see point 8.4 (4) of the Procedural Rules). That such a hearing can achieve a significant impact was recently demonstrated by the petition to the European Parliament submitted by Evelien Van Den Brink, which led to the adoption of resolution 2020/2580(RSP) („European Parliament resolution of 18 June 2020 on additional funding for biomedical research on Myalgic Encephalomyelitis“).

If we succeed in getting the German Bundestag to address ME/CFS and to adopt specific measures, this would be of importance well beyond Germany’s borders: Research investments would benefit all people with ME/CFS worldwide. But improvements in the provision of healthcare and broad political support in Germany would also benefit the situation of ME/CFS sufferers throughout Europe and beyond by setting an example and having an encouraging effect.

The chance for a public hearing is also one of the main reasons why we have chosen to publish the petition on the official petition platform of the German Bundestag. This is because the Procedural Rules only grant the right to a public hearing if this platform is used. However, this is associated with two disadvantages: Firstly, the requirement of 50,000 signatories, secondly, a signing deadline of only four weeks. Nevertheless, we see a promising chance to reach the required number of signatories in time, as our petition has one huge advantage: almost all people worldwide are allowed to sign it (read here for more details)! But in any case, we are dependent on your help!