Our fairy tale will not be denied!encouraging #patients to face the psychosomatic part of their illness in order to make peace with it and not be in constant resistance to it .
Our fairy tale will not be denied!encouraging #patients to face the psychosomatic part of their illness in order to make peace with it and not be in constant resistance to it .
Our fairy tale will not be denied!
Guideline for the funding of interdisciplinary collaborations for research into the pathomechanisms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Federal Gazette of 01.09.2023
https://www.bmbf.de/bmbf/shareddocs...2023/09/2023-09-01-Bekanntmachung-ME-CFS.html
Federal Ministry of Education and Research (BMBF) said:Research funding at #MECFS is a concern for BM @starkwatzinger. 15 million euros have been made available over three years for the new funding measure. This will also help many #LongCOVID & #PostCOVID patients: ME/CFS is considered the most complex form of this disease.
ZDFheute said:Long Covid: Lauterbach wants 60 million euros extra
I think those are related, in that 15M Euros have been made available, and Lauterbach wants 60M more:
Ah yeah that's what I meant. Poorly phrased, just about what he meant by "more".It doesn't seem so. The 15 Million are 5 Million per year for medical research.
What Lauterbach wants, is 60 Million extra for healthcare research, for which 40 Million have already been allocated by him. However, as we know healthcare research is extremely useless if you don't do biomedical research. Unfortunately, Lauterbach can only advocate for more healthcare research since that is within his department, whilst Stark-Watzinger and Lindner remain stubborn on spending useful money on biomedical research which is what is actually needed.
Should probably assume that this means through the EU, as there is a proposal for major funding and Germany is the biggest player in the EU.Karl Lauterbach said:“We will ensure that more money is available internationally for research into Long Covid”
It goes without saying that patients must give their consent to treatment. What is decisive is the basis on which they do so. Politically, the guiding principle of informed patients has prevailed. This is a goal to which physicians are committed - but a case from Great Britain shows that this is not always self-evident. A case that certainly revolved around concrete health consequences.
It is true that Montgomery had agreed to a vaginal birth. However, the risk of shoulder dystocia, its conceivable consequences and the possibility of a caesarean section had not been discussed in the hospital beforehand. The reason: the medical staff had considered the risk of such serious consequences to be extremely low.
The mother took the case to court and went and went through all the instances. In 2014, it ended up before the Supreme Court. In its 2015 ruling, the U.K. Supreme Court made it clear that doctors should have informed the woman of the risk - on their own initiative, not on demand, as previous case law had suggested.
The ruling brought about a paradigm shift in the UK, putting patients at the center of medical decision-making. Since then, physicians are no longer only required to make decisions in good faith for the patient's well-being - they are also obliged to actively pass on all relevant information to their patients so that they have a choice between several options. Only then is their consent considered fully given.
The German Patients' Rights Act has already stipulated since 2013 that patient:in and physician:e should "cooperate to carry out the treatment". According to this general principle, the following passages oblige physicians to "explain all circumstances essential for the treatment", including the prospects of success, risks and alternatives.
However, this requirement does not establish defined participatory decision-making procedures in standard care. Where separate costs would arise - for training courses for physicians, for example, or for the creation of decision-making aids - these have not yet been covered by the health insurance funds as standard.
In reality, however, participatory decision-making methods are often still a long way off. The role patients, with their naturally subjective lay perspective, should play in medical decisions continues to harbor potential for conflict in medical practices and clinics. Currently, the many reports of Long Covid or ME/CFS patients show that differences can already arise in the understanding of the disease: If people feel that their organic complaints are not taken seriously by doctors, while some practitioners suspect that the patients are "somatizing" psychological problems, i.e. misinterpreting them as a physical illness, joint decision-making is difficult. This is because, depending on how the problem is viewed, the therapeutic consequences can be completely different.
A few year sago an online survey [...] revealed that there is a certain distrust of decisions made at eye level. At the end of 2015, more than half of the 804 participating physicians stated that they found "informed patients" at least "problematic". 45 percent agreed with the statement that self-information triggers unreasonable expectations and demands that burden the work of practices. Almost every tenth respondent was also annoyed that patients had not contacted them first - and seven percent saw self-information as a sign of a lack of trust.
Follow-up post from @MSEsperanza.
Mistrust of informed patients
"A few year sago an online survey [...] revealed that there is a certain distrust of decisions made at eye level. At the end of 2015, more than half of the 804 participating physicians stated that they found "informed patients" at least "problematic". 45 percent agreed with the statement that self-information triggers unreasonable expectations and demands that burden the work of practices. Almost every tenth respondent was also annoyed that patients had not contacted them first - and seven percent saw self-information as a sign of a lack of trust."
Is there a reference for the survey @Kitty? The article is paywalled for me.