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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Compassionate Use

nerd

Senior Member
Messages
863
I'm from Germany. From my personal experience, 80 to 90 percent of the physicians either believe in psychosomatism as a causality, or they believe in homeopathy, acupuncture, and osteopathy. It's almost unbelievable how many there are who believe in this non-scientific religion and the black and white thinking that any psychological condition or even the suspicion thereof excludes anything physical.

They do not understand the placebo effect and that a placebo effect is not a real treatment, but merely a change of perception. A change of perception can not cure any disease. Of course, any symptomatic severity index of a study is susceptible to it. But it's not real. It's based on the subjective perception of the patient. You could as well pray to god, feel better afterward, and believe that this is a cure to every disease. But I'm not telling you anything you don't know yet.

The other oddity I notice quite often with physicians is that they clamp to their control over the patient. They clamp to it with the excuse that they have to take responsibility. Based on this responsibility, they would prescribe you any off-label treatment THEY think is the right one, even when there isn't even anecdotal evidence for it. You can decline it, but then they won't treat you anymore.

For diseases such as CFS/ME, where no treatment is approved yet, the compassionate use clause can be applied. Many countries such as Germany have implemented this law. It allows patients to take the responsibility from the medical doctor and decide for themselves what risk they are willing to take. The doctor doesn't have any legal responsibility from thereon. This is perfect for experimental therapies.

But for some reason, physicians don't care. They don't want to give the control away. I'm curious if this is just a common personality disorder among physicians or if they are just too stubborn to listen to anything a patient has to say.

I keep getting confronted with excuses why physicians say they can't help me. There is always an excuse. But responsibility is among the most ill-informed ones.

I hope you've made different experiences because primary care in Germany isn't real medicine. It's symptomatic and wellness medicine mixed with the homeopathic religion. Patients who follow science aren't welcome.
 
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LINE

Senior Member
Messages
832
Location
USA
The problems exist elsewhere. ME is a biological or biochemical problem not a psychosomatic disease as you know but obviously the 'professionals' do not.

They are not treating the core problems which are infections and toxins. I have climbed out of the hole addressing the infections and toxins.