Doctor Naviaux and his team took part in a study a few years ago 84 ME sufferers around 20 Metabolic abnormalities found. How the disturbed metabolic processes come about is still unclear. But the data showed, that, despite the different triggers and factors, leading to ME, the cellular metabolic response is the same in all affected individuals: ‘Similar to dauer, CFS appears to represent a hypometabolic survival state that is triggered by environmental stress. The metabolic features of CFS and dauer correspond to the same pathways that characterize the acute CDR
and metabolic syndrome (50) but are regulated in the opposite direction.’
That was the starting position 2017. Since then, research has increasingly focused on adrenergic and muscarinic autoantibodies. Ob da was dran ist könnte das Medikament B007, which is currently being tested in a study on long-Covid sufferers, provide with information. (Offenbar werden die Long-Covider jedoch jetzt teilweise auch psychopathologisiert, genau wie wir seit 80 Years!)
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Like most long-term sufferers, I rarely go to a specialist anymore, as this only leads to re-traumatization. I know of quite a few ME sufferers, who no longer go to the doctor at all, because just entering the doctor's office causes them post-traumatic symptoms.
Für meinen letzten Arzttermin im Neurozentrum des Inselspitals habe ich mich ein halbes Jahr vorbereitet. It was my concern, my latent high blood pressure, which has existed for several years (ca.100 / 150) to examine. It's probably some form of POTS, namely a hyperadreneges, which means so much, how: that the blood pressure in an upright position instead of falling, (Ortosthase) skyrockets. There are different POTS variants. Almost all of them are autoimmune and typical side effects of myalgic encephalomyelitis. But the normal beta blocker is not necessarily the best solution, to reduce hyperadrenergic overactivity. A beta blocker, which only acts locally on the heart, it's definitely not that, what i need, Others, substances affecting the brain, die von internationalen Dysautonomie-Zentren (angelsächsisch) erwähnt wurden, So I wanted to discuss this with the doctor's greyhound at the Neurzentrum.
think! The first, what he said, when he saw my papers, war: “People, take the documents with you, are usually not sick.”
Then came, after carefully formulating the problem, an answer, which I found reasonably tolerable: “Molecular biology will never find anything in people like you.” On, gut. Ist zwar reichlich faul,
doch ich liess dies so gelten, and actually wanted to leave (the waiting time for an appointment in NZ has by the way 6 lasted months.) Doch dann fing der deutsche Windhund auf einmal an, to get ready. My blood pressure was apparently normal that day, das Blutdruck EKG-Tagebuch mit den erhöhten Werten über 2Tage interessierte ihn nicht, instead he held me up, I am a hypochondriac.
I wanted to go again ('Cause I'm not so fussy anymore, as already). That's where I made the mistake, to say the following sentence: “I don't have a right, take care of my blood pressure and, wenn die Werte nicht wirklich stimmen, to discuss a medication with a doctor? Why do you have to psychopathologize this again?”
Then he said, with a look at my dossier (the island dossier), what troubles him, that I didn't do anything all day … I need something urgently, that give me a better quality of life etc.
AUWEIA! AND!!!!! DAS IST SEEHR SENSIBEL.
I said, but of course, I am still researching, how I could alleviate my subsequent symptoms of ME (22h im Bett etc)…. my goal is to improve my physical condition… but I can't do this alone …. the quality of life is so low, that I only care about improving physical condition, improve the overall quality of life, wodurch natürlich auch mein psychischer Zustand besser würde. But because I wouldn't get any help there and sometimes there is no therapy for ME, I wish I had euthanasia ….
Now that was the main mistake, I in my honesty, had made:
The doctor was now unstoppable: I urgently need to go to the neuropsychiatric ward for depression. He recommends electroconvulsive therapy (electric shocks!), with a longstanding mental illness ….etc.
I said nothing more. Neither, that an electric shock could definitely trigger heart failure in me, because my body is in stasis, hibernating and unable to respond to stress. Ich aber nicht an Herzversagen, genausowenig wie an Stroke (definitely a consequence of the lying lifestyle and the hypometabolism of ME) wanted to die, but controlled etc. Blaba.
This was my last medical appointment and was about six weeks ago. I have ... myself, as I said, behave calmly and reflectively, while talking, and was happy, when it was over.
Now to the doctor, as a man and vice versa:
Overall I have in 26 So many attacks and abuse for years, experienced sexist behavior by doctors, that it could actually be me, what is called misogynist in men and for which, on the contrary, there apparently is no term, tellingly ….
But I can, in spite of everything, not hate this opposite gender as such, because, how could I! Where I found men underneath, who loved me and helped me to have sensual intoxicating experiences ….!!!!!
Naturally, No man has ever taken me seriously. But what the heck?! It doesn't matter ….. It would be nice, if I could take her seriously …. adore!!!!
I am also an admirer of some great male writers. Quite a few of them were misanthropes or misogynists …. I mean, ehrlich: what's the difference? (I would have little against a misogynist, if he were also a brilliant doctor ….)
Nevertheless, the discrimination, that women and especially women with autoimmune diseases like ME are experiencing through doctors, widespread, and I know of many women affected by ME, who only go to a doctor accompanied by a man. Or not at all.
An Arte documentary recently showed, that the medical discrimination against women is still systematic. For example, the ambulance is usually dispatched ten minutes later if women have heart problems or a suspected heart attack, as if the emergency call came from men. is also known, that u.a. All painkillers and medications are tested on men and not on women ….
Sexism is still alive and affects both young and old women. In the case of young people, complaints are still attributed to the lack of childbearing, or most women know the advice today, just as they did twenty years ago: “Make a child, then the complaints will go away!” Older women, on the other hand, are refused thyroid therapy for this reason: “If there is no desire to have children, these values do not have to be optimal.” (I'm not the only one, who experienced that!)
I do not know, whether it is more profitable, to treat men. Maybe only then, if these men have a financial and v.a. have social capital. So now for the first time a man (with such capital) against the Inselspital, because they don't want to give him the ME/CFS diagnosis correctly and of course he doesn't get an IV either … (what no one gets, Furthermore). I do not know, what became of the process ….
Anyway. I am not an emancipated woman and I am not a feminist. For me it's both “male” terms.
Nevertheless, I saw, after so many years, that there is no way, get a medical doctor to do it, to work with me. Just the fact, that I have acquired a great deal of knowledge about my illness over the years, is for the conventional doctor, as well as an affront to a conventional doctor, an insult and so follows from the side of the more powerful (physician) a defamation (see greyhound) etc. ME/CFS is still not taught at university!
The other problem is, that alternative medicine and general practitioners will throw you out of treatment, if you don't want to try, to ameliorate the disease with dubious alternative methods. Then there is a threat: “Now go to so-and-so naturopath, now do this and that …or I will no longer treat you”, dies, albeit the status quo of ME: means incurable. How cheap is that?: the HA does not know what to do with the patient, but is not ready either, to read up on the patient's illness and to test off-label the drugs mentioned by the few international ME specialists with him!!! Instead, he threatens the patient, if he doesn't go to his team's internal alternative practitioner or psychosomatician, etc., he no longer accompanies you ….
I am currently in this exact position. But not for the first time. I can only say, that I'm not into blackmail at all. On the other hand, a doctor is no longer an accompanying person for me, if he only treats me under certain conditions.
But: This is a deeply human motto: I you … if you me ….
I said a few years ago, that I would be fine: the HA would be replaced by a solid robot.
I am now looking for such a robot again: dynamic, sachneutral, inhuman. But qualified!
A robot may also accompany people, where there is no improvement. They waste away over the years, but the robot accompanies them, by doing the necessary basic checks from time to time. When he knows more, he does more; all the better.
This medical robot should not be a human. Unfortunately, he almost always breaks the hypocratic oath!
https://www.omf.ngo/wp-content/uploads/2016/08/Naviaux-PNAS-CFS-Metabolomics-2016.pdf