Hilfe für ME-Patienten
The aim of the petition is to ensure that in Germany there is finally an appropriate level of care for the severity of the disease and that biomedical research is funded. At present there are no medical centers for affected persons, nor is the disease being researched!
English translation (deepl):
Unfortunately, there is no medical care for the approximately 240,000 people suffering from Myalgic Encephalomyelitis (ME) in Germany. The disease is also trivialized as Chronic Fatigue Syndrome (CFS) or as ME/CFS.
Although the disease has been recognized by the WHO (ICD-10 G93.3) since 1969, ME is still not taught in medical studies, so most doctors do not know it at all, and therefore cannot help or even recommend harmful therapies based on false information.
Currently, there is only a specialized contact point at the Charité Berlin, but due to the large number of patients, only patients from Berlin/Brandenburg can be diagnosed there! Important: they only diagnose, unfortunately the patient cannot expect a helpful therapy.
The contact point of Prof. Behrends at the Munich Clinic Schwabing is only responsible for young people.
That means: there are currently no contact points for most patients in Germany. The situation is therefore catastrophic for those affected, which also explains why many patients are wrongly diagnosed with burnout/depression, resulting in harmful therapy attempts that do not help the patient but allow the disease to progress.
The main symptom in ME is the so-called PENE (Postexertional neuroimmune exhaustion): this describes "the pathological inability to produce sufficient energy when needed with pronounced neuroimmunological symptoms".1
People with ME experience massive physical exhaustion, which cannot be eliminated by resting. Even the slightest physical or mental effort (e.g. brushing teeth, short conversation) leads to immediate or delayed (24-48h) exhaustion and intensification of all symptoms, e.g. chronic pain. Existing painkillers, even morphine, often do not help sufficiently.
About 25% (about 75,000 in Germany) of the patients (including children!) are so severely affected by the disease that they are unable to leave their homes or beds. This means that such cases sometimes require years of care, mostly until the end of their lives.
Especially severe cases are bedridden for 24 hours, even the slightest movement leads to PENE, they do not tolerate any light, noise or touch and sometimes even have to be fed artificially. They are no longer capable of any physical or mental activity.
In order for doctors not to harm ME patients, they must be correctly informed about ME. The "MYALGIC ENZEPHALOMYELITIS International Consensus Guideline for Physicians" (ME IC Guideline) developed by ME specialists is suitable for this purpose. It contains strict diagnostic criteria (the ICC) and information for physicians (e.g. which blood tests show abnormalities). It can be downloaded here free of charge: www.t1p.de/meicleitlinie
The ME IC guideline lists, among other things, diseases that can cause similar symptoms to ME and which must be excluded (differential diagnosis). In the case of primary psychiatric disorders, an ME diagnosis according to the IC guideline is excluded. This is very important so that the test persons are correctly selected in studies and not people with, for example, purely psychiatric illnesses, who are inadvertently mixed in with them, so that the study does not provide a helpful result for people with ME. However, this is also important so that false diagnoses are avoided.
The experts for care levels/pension insurance, etc. must also be properly informed so that the stigma is eliminated and those affected receive care appropriate to the severity of the disease. Due to the missing or wrong information it is currently very difficult for affected persons to obtain an aid such as a wheelchair.
Stays in hospital, e.g. for the clarification of other diseases, are at present in most cases connected with worsening of the disease condition, since the physicians/nurses are not informed about ME there and therefore e.g. do not consider the light and noise sensitivity of the patients.
Simple blood counts are usually completely inconspicuous in ME patients, which unfortunately often means that no further specific tests are performed.
The current guidelines of AWMF, Degam and DRV are unfortunately a source of suffering for ME patients. In order to really help patients, new guidelines for Myalgic Encephalomyelitis must be developed based on the 2011 International Consensus Criteria for ME and the 2012 ME IC Guideline.
Due to the extremely poor research and the complete lack of funding in Germany, there is not a single approved drug for the treatment of ME. Due to the lack of research funding, patients have recently had to collect donations for research themselves! Therefore, it is essential that funds are made available for independent biomedical research into the causes of ME, so that a biomarker can be found soon and thus a diagnosis can be made easily and quickly by the patient's family doctor in the future.
In other countries blood and organ donation for ME is already prohibited, but not in Germany. Based on the more than 60 cluster outbreaks documented worldwide to date, it must be assumed that ME is a pathogen, e.g. Royal Free Hospital Group London (1955): within 4 months, 292 hospital employees fell ill with the disease, 255 affected persons had to be hospitalized.2
It is very important that politicians and the health care system finally react correctly here to prevent this disease from spreading even further, because according to one study, the number of people affected doubled between 2009 and 2014 alone!3
In the Bavarian State Parliament, the Committee for Health and Care discussed a petition regarding "ME/CFS" and supports the petition.4
It is clear to me that certain decisions can only be taken by the federal government, so it would be important for the states to join forces to ensure that the federal government takes action.
Also in the European Parliament, following a petition by Evelien van den Brink, who herself is very seriously affected, the 1st resolution on "ME/CFS" has now been passed. In this resolution many demands are listed to the responsible authorities, also the member states of the European Union: www.t1p.de/europaME
In her petition, "WE WANT OUR LIFE BACK", to Health Minister Jens Spahn, Katharina Voss calls for many important changes to improve the care of ME patients. Despite more than 17,000 signatures, it has unfortunately not yet led to any reaction from the government: www.t1p.de/ej2w.
I fell seriously ill with ME in 2012 and have not been able to participate in life as such ever since. The disease is also called "living death", which unfortunately is the right way to describe it. My brother fell ill with severe ME in 2017 and had an extremely fast and aggressive course, which is why he unfortunately died at the age of 26. Here you can find a list of those who have died of ME so far: www.ncf-net.org/memorial.htm
Therefore, I very much hope that you will support this petition in order to finally bring the care and research to a level corresponding to the prevalence of the disease (today ME is three times more common than HIV in Germany!)
The Ministry of Social Affairs and Integration and the Ministry of Science, Research and the Arts must urgently take action to improve the situation of those affected.
Please sign this petition! We affected people are of course also grateful for prayers!
With kind regards & thank you for your support
Translated with www.DeepL.com/Translator (free version)