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 (durchaus eine Folge der liegenden Lebensweise und des Hypometabolismus der ME) sterben wolle, sondern kontrolliert usw. Blaba.
This was my last medical appointment and was about six weeks ago. Ich habe mich, as I said, ruhig und reflektiert verhalten, while talking, and was happy, when it was over.
Nun zum Arzt, als Mann und umgekehrt:
Ingesamt habe ich in 26 Jahren so viele Übergriffe und missbräuchliches, experienced sexist behavior by doctors, that it could actually be me, was man bei Männern Misogynist nennt und wofür es im Gegenteil offenbar keinen Begriff gibt, bezeichnenderweise ….
Ich kann aber, trotz allem, dieses mir opposite Geschlecht als solches nicht hassen, because, how could I! Wo ich darunter Männer fand, die mich liebten und mir zu sinnlichen Rauscherlebnissen verhalfen ….!!!!!
Naturally, ernst genommen hat mich noch nie ein Mann. Aber was soll’s?! Ist doch wurscht ….. Schön wäre es, wenn ich sie ernst nehmen könnte …. anhimmeln!!!!
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? (Ich hätte wenig gegen einen Misogynist, wenn er nebenbei ein genialer Arzt wäre ….)
Nevertheless, the discrimination, that women and especially women with autoimmune diseases like ME are experiencing through doctors, widespread, und ich weiss von vielen ME-Betroffenen-Frauen, 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, als wenn der Notruf von Männern kommt. 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!” Älteren Frauen wird hingegen eine Schilddrüsentherapie verweigert mit der Begründung: “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, ist für den Schulmediziner, wie auch für eine Schulmedizinerin ein Affront, an insult and so follows from the side of the more powerful (physician) a defamation (see greyhound) etc. ME/CFS wird eben nach wie vor nicht an der Uni gelehrt!
The other problem is, dass einen die Alternativmediziner und auch Hausärzte aus der Behandlung kippen, 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 …oder ich behandle Sie nicht länger”, 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, wenn er nicht zu seiner Team internen Heilprakterin oder Psychosomatikerin geht usw., he no longer accompanies you ….
I am currently in this exact position. Aber nicht zum ersten Mal. 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: dies ist ja ein zutiefst menschliches Motto: ich dir … wenn du mir ….
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!
Ein Roboter begleitet vielleicht auch Menschen, 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, macht er mehr; all the better.
Ein Mensch sollte dieser Medizinalroboter eher nicht sein. Denn dieser bricht leider fast immer den hypokratischen Eid!
https://www.omf.ngo/wp-content/uploads/2016/08/Naviaux-PNAS-CFS-Metabolomics-2016.pdf