WITH Ara Bakel is not silent. Not when she transferred me/CFS to an incurable illness, and also not to die after she decided. This remains a report on her on the platform of social networks X, which puts your finger in the wound of those who prefer to look away. All suffering shows that the former Minister of Health Karl Lauterbach will respond to his last contribution to X with uncontrolled hopes for research and mediation.
The cynicism that is in this situation ends with comments within the framework of the Lauterbach contribution. There, desperately desperate members of me/CFS, who beg him, also give them medical assistance.
This shows: we need help for the victims. Now. Because with me/CFS there was still only life in Germany: the lack of quality of life, lack of health care, lack of social support. And therefore, the death of Sarah Bielle was not a decision against the life that she could again lead at some moment in the distant future if the study could still be. But the decision against every next second alone, suffering and agony.
There are structural reasons. ME/CFS is not so rare, but still hardly investigated. Only through Covid -Pandemia, through which the number of Me/CFS was multiplied only in Germany, the topic gradually receives more buoyancy.
The emphasis is slow. How long do you want to expect people to follow their physical decay as passive witnesses, and these people will not be able to take care of? In the end, we are talking about a disease that makes you too sick for the hospital.
Structural general failure
Karl Lauterbach turns to the hope in his contribution and AI. Seriously? This is a structural general failure with an ad. Hope is not a medicine, and hope is not a study aimed at patient needs. Because the fact is that money is flowing from politics to me/CFS, but so far nothing has actually received patients.
Although “nothing” is not entirely correct. What is important in patients is such statements as the then Ministry of Studies of the FDP, which has made financing to cancel the promising examination of drugs. Who reports Berlinar Zeytung A few days after the death of Sarah Bielle. Reason: the number of people suffering from me/CFS will increase less quickly than at the beginning of the pandemic.
Yeah. In Germany, 620,000 cases of ME/CFS treatment were registered with the Association of Medical Doctors of Medical Insurance in Germany. Until 2020, according to the estimates of German society for me/CFS, 250,000 people got sick.
As a reminder: there is still no recognized, stable biomarker for this disease. Therefore, the diagnosis should be made by thorough exclusion of other diseases and, therefore, is very expensive and complex. In addition, Me/CFS is not mandatory in medical research in Germany. This is a disease that occurs in complete darkness and therefore is not cured and it is difficult to treat.
Listen to the victims
Of course, research is needed, but what they need is help. Now. Those raised and the matter with this topic has long been called to the national structure of the methods of focusing Me/CFS. With a large number of sick people, this is minimal demand and enters the area of basal medical infrastructure.
These practices can provide a large amount of data that have not yet existed at all from incomplete assistance. The question arises that AI caused by Lautherbach should currently analyze in general?
The requirements of injured people are public and clear: medical personnel must be trained for me/CFS. Medical assistance should be provided throughout the country through focusing. People with me/CF need social security so that their condition does not deteriorate and is not chronic for overload. And they need to believe. Even if this means the recognition that you currently cannot live with the most difficult Me/CFS in Germany.
Sarah, we mourn you. And we are fighting for you.