As I said, I've had this disease for most of my life. However, doctors claimed for almost two decades, I have somatization disorder, F.45., and so I played along a little: in the “Spinner” “Play. (before i 2011 from me. got to know by chance!)
Unfortunately, M.E. still unknown to most doctors, or just as that, what Simon Wessley made of it: an "exhaustion", based on an unsustainable biopsychosocial model.
M.E. already since 1969 under the real name, Myalgic encephalomyelitis as a neurological multisystem disease in the WHO G. 93, encrypted.
A doctor would get the idea, to claim, Cancer is a biopsychosocial disease? Would he put the sufferer into behavior therapy and, worse, to the sport, send, which would only make the patient sicker?
Basically, I think the biopsychosocial model is not a bad idea, I don't mind the idea, that illness is holistic. Who knows, what the disease and the physically measurable “Deviations”, which ultimately cause the suffering and set it in motion, whereupon the disease really begins, triggers… ?
I mean, i have had physical symptoms for two decades, that threaten me constantly in my life (Arrhythmien, days of strangulation, Numbness etc.), which at first made life outside the home difficult and meanwhile impossible, that make me pretty unhappy. Seen in this way, the term exists “Psyche” as such for me no longer at all.
But if the biopsychosocial model is used, that general practitioners become lazy and imprecise in diagnosis, when it comes to, To make money (Psychopharmalobby etc.) and prevented such a model, dass eine Krankheit wissenschaftlich erforscht wird respektive untererforscht ist und sich kaum Forscher und Ärzte (the brave ones!) dare to tackle the highly complex matter … then that bothers me a lot.
Hundreds of thousands of people with ME suffer from ME for years to decades. and neglect from science / doctors, through the health system and the environment, including children. 90 Percent of those affected are women. Many of them are like me: You get an F.45 diagnosis or you defend yourself against it for years and, in addition to a severe physical crisis, also plunge into financial crises, (u.a., because care at home is expensive, there are no hospitals and homes for people with severe M.E., they are abandoned by partners and the environment, because as a healthy person with people affected by M.E. it is not so easy to bear it. You can't do much anymore, to do almost nothing with the sick person, at least with the seriously and seriously ill – vacation, to travel, Party, Going out, Make plans, roll across the floor, small trips etc.) Impossible.
And I don't want that, or I can't just accept that, this lack of perspective. What I want, is more research, Abolition of psychopathologization, so that those affected in the farthest back no longer “abused” can be, of stupid, uninformierten, patriarchal sexistischen (“You are a little tired, maybe they should make a child!” Experienced everything etc.) Doctors.
The disease is still too little in the media! Unscientific misinformation is still circulating among the public, while thousands of seriously affected people lie in the dark and cannot speak, because they have to avoid any stimuli! (PENIS: post-neuroimmune severe exhaustion, Cardinal feature of ME)
And that is the reason, why do I speak of this disease in this form at all! Not, because that's so fun for me or so that I have another platform for self-expression in this way. (I present myself in my literature! There is something true about that.)
M.E. is a political issue.
I honestly find it a little weird, that I often know more and argue more precisely and carefully, when I talk to doctors about M.E. talk or talk, über die Materie, I mean (of course not about chemistry or internal connections!), where they are, have studied medicine as a scientific subject. It would have to be you, who told me about M.E. enlighten!
Haha. Life is weird. And that's probably also due to online, an enemy of the white coats. These of course claim, that only unscientific information circulates on the Internet, nur Gugus! And that the normal user of such platforms cannot distinguish between medical gugus and the opposite of medical gugus. This is his weapon, with which he against people, who have to educate and inform themselves over the years, because no one else will help them – because the Canadian Consensus Criteria are not read by doctors or distributed to those affected or possibly affected, at least not here in Switzerland – trying to arrive …
When a doctor diagnoses myalgic encephalomyelitis G.93 with its huge complex of symptoms, their neurological and immunological symptoms from the somatoform disorder, F.45, with their relatively few main symptoms, all of which affect the autonomic nervous system, can not distinguish, well … then I don't know how to move on ….
… then there is not so much left of my admiration for the learned and intelligent.
(Which is also wrong again, because I admire Ron Davis and everyone else, the – maybe unseen, fighting against social and economic problems- of education and research by M.E. study. They exist!)
By M.E. In recent years my body has largely lost its ability to regulate itself and to adapt to external and internal circumstances. (Home purchase level). For example, I can no longer go out in the sunshine and heat (collabiere). Ich habe also von diesem Sommer rein gar nichts. My body also got into energy production (Metabolism), the processing of stress hormones, (Hypothalamic-adrenal axis), in fighting infections and pathogens, (Immundysfunktion) serious problems. My symptom has been for two years: chronic muscle weakness, Body aches, Grippesymptome, swollen lymph nodes, cramps, Myoclonus, Numbness, Pain, Arrythmien, Cardiovascular disorders, POTS, nausea, Indigestion, Hormonal disorders (Underactive thyroid), Adrenal fatigue, Gait disorders, Visual disturbances, Accommodation disorders with the eye ( can no longer focus in the mirror) severe exhaustion, etc. All of these symptoms and more, I forgot, enumerate, lead to deterioration in me after little physical activity in particular. Because mental activity constantly leads to deterioration, I can currently work mentally for about two hours a day. For example, I try to work longer on a text, I get cramps in the right side of my body, get confused and collapse, When I get up.) But I had a few years, between 28 and 33 only mild M.E., and I'm happy about that.
who I am.
That is the one question, that we humans face. But first there is the question:
Where I am.
This question depends a lot on our body. It is the room, in which we ourselves and our perceptions and sensations – in the brain- und durch Rückkoppelungen mit unserem Körper und der Aussenwelt – locate.
If, How people affected by ME suffered from countless severe symptoms for years to decades, affecting all systems in the body, also the brain, where our sensations are controlled via neurotransmitters and hormones, then one understands, how cynical a diagnosis is, which implies: it is your own fault! It's your personality. And those affected by M.E., who get severely depressed, which is logical, this depression, a real!, in my opinion, then hide, especially, if they are still in the process of clarification, for good reasons….
(„What is M.E.?“ M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile.‘)
Thanks for the attention.
https://www.me-information.de/
https://www.lost-voices-stiftung.org/informationen/allgemeine-informationen/stellungnahme/
https://rarediseases.org/rare-diseases/myalgic-encephalomyelitis/
dahttp://meversuscfs.blogspot.ch/
