I see this blog as
– Blog of my personal development
– literary blog or blog of a literary development
– Blog of an illness experience, personally
(Myalgic encephalomyelitis since 28 Years, 2018 Diagnose, that. 20-24h bedridden since 2016)
– Blog about a specific disease with a specific political background
( since 1969 Filed with the WHO as a neurological disease, have ME sufferers to this day
Day no sickness recognition, therapy, with. supply etc.)
– Monologue of a social absence (structurally, through years of ME)
– therapeutic monologue (e.g.. endure symptoms)
– literary blog, not personally
PS: I was asked, why I have my illness “show” or even “demonstrate”, this has alienated some people on social media. Dies (what I do) is actually rather unusual. BUT the disease myalgic encephalomyelitis is a, which is still not recognized, which forces those affected to become invisible and socially non-existent. Our level of functioning is deeper than that of any chronic disease, and at the same time we have been experiencing the greatest psychopathologization and ignorance for over sixty years, that you can imagine. For a long time now there have been innumerable physical deviations in the brain metabolism, energy metabolism, in the blood etc. known in ME sufferers (Openmedicine foundation.org, e.g.) , but in this country you are still labeled as a tired psychosomatic. The long and early onset disease has dominated my entire existence, it is the reality of my life. I do not think so, that I have the disease like that “show” would, if it existed medically and thus socio-politically. It's an injustice, that has been happening to millions of mostly young ME sufferers for many decades. And an injustice must be spoken out. (trauma research!) I would certainly not write about the disease to this extent, if I haven't since 28 years would have been ill with it, mild at first, but already unable to work due to the countless dysautonomies and the lack of homeostasis, then off 2016 biting camp. So it might not be possible, to understand my behavior immediately, if you want to understand something fleetingly, No, if you want to understand fleetingly, then one will fall into the usual suspicion, this dreadful distrust, with which we are confronted again and again in addition to the consistent symptoms.
I am, despite this millstone and these negatively formative experiences with the environment, it is not entirely my illness. For example, I liked to write even before I got sick. And more and more often I consciously look for other subjects to write with, which is not so easy with such a limited world of experience.
about me (2017/18/19/20/21, last little revision 11.2022)
For me, writing is the place of transformation from the profane to the substantial. The act of writing detached me from the circumstances of life, paradoxically,where I had to write about these circumstances …. but it lies in the work of poetry itself, that the often ugly and inadequate reality is transformed in the act of writing itself ….. that this, what cannot happen in life, finds expression somehow ….I have never experienced anything like this as a seller …. means to write: create a new reality …. no matter, what to write about. And yet there is something crippled about it. Because somehow it's just something abstract again. And what I actually meant by the transformation is just a kind of perspective on life, I meant a kind of art of living, that of a lack of spirituality or divinity (give)thinks— I meant: the question, how to commemorate life, how one could integrate being-not-quite-here … I thought: and, clear: include the ontology and thus keep the distance to the profane and keep the love view for the uniqueness of being.
2023/Eclat de Minutes_ the icicles
2022/bursts of minutes
2022 burst of minutes
2020, Brügg, burst of minutes
summer 2021
2022 Foucault Michel, L'utopia du corps in German, read by MJS
2021 summer
2019, The logos cosm of the young Jeanne Stürmchen, Proll and Poet Maudit, at that time still with Christian in the upper right part of the globe
—–
(A little information about the disease myalgic encephalomyelitis, which is almost unknown in this country (colloquially called Chronic Fatigue Syndrome) by the Swiss Society for ME/CFS (Sgme.ch):
'ME/CFS is a neurological disease, which usually occurs after a viral infection and can lead to severe disability. Patients suffer from various symptoms such as muscle weakness, flu-like exhaustion, sensory stimulus processing disorders pain, severe concentration disorders, etc. The cardinal symptom is a post-exertional neuroimmune excision, (PENIS), a long-lasting worsening of symptoms, which are already at low physical, cognitive or sensory load follows. The exact cause of the disease has not been sufficiently researched, but among other things. are malfunctions of the immune system, of the nervous system, of energy transport and the hormone system. About 60% of those affected are unable to work, 25% are housebound or bedridden, that. 3% heavy maintenance. are worldwide 17 millions of people affected, in Switzerland approx. 16000. The World Health Organization WHO has myalgic encephalomyelitis in the year 1969 classified as a neurological disease under code g.93.3.
Although there is increasing knowledge about the physical dysfunctions in ME and CFS, the exact causes are still unclear and there is no recognized treatment. As a rule, patients remain seriously ill throughout their lives. It is all the more worrying, that there is hardly any investment in research into the disease. In the year 2017 gave the US Department of Health per ME- und CFS-Patient:in $ 15 out. The equivalent amount for AIDS is $ 3’000.1 ME has never been researched in Switzerland.
The misunderstanding of an illness
ME was recognized early on as a neuroimmunological disease. But in the early 1970s, the thesis came up, that the high proportion of young women among the patient:internally provide evidence of hysteria as the cause.2 This grotesque thesis was initially met with great rejection in the professional world. However, since no clear physiological cause could be found, the misconception began to gain traction in the 1980s. At the same time, ME became mixed up with the much more broadly defined clinical picture CFS and thereby lost specificity. As a result, there are research funds and patient support services worldwide:returned inside and one started, to treat them with harmful psychosomatic methods.3
Today, the physical malfunctions in ME are better researched and a paradigm shift has been taking place worldwide for several years. 2015 a study commissioned by the US Department of Health clearly recognized ME as a serious physical illness.4 In the same year in Norway, the Prime Minister publicly apologized to the patient:within.
“We had nothing to offer this group of patients and they were met with rejection in the healthcare sector. this happened, because there were many prejudices against this disease; that they are the result of a psychological, almost wanted illness would be. It really is a scandal! These patients were treated with a lack of respect, just because we didn't have enough knowledge."5
- Erna Solberg, Prime Minister of Norway –
More and more countries followed. 2016 the EU established a research program on ME called EUROMENE.6 2018 The Dutch Health Council has recognized ME as a serious physical illness and has done more research and better support for patients:demanded inside.7 The Danish Parliament followed a year later.8 Beginning 2019 A parliamentary debate took place in the British House of Commons, in which the poor care of the ME patient:was discussed inside. All parliamentarians:inside agreed to a motion, which demanded, that the government make more research funds available for ME, medical professionals to be better educated about ME, and potentially harmful psychosomatic treatment methods for ME are abolished.9 2020 In a resolution, the European Parliament called for the funding of biomedical research and awareness-raising campaigns among healthcare professionals and the general public.10
In the year 2021 published the British NICE new policies on ME, which various big improvements to the old ones from 2007 include:11
- It is acknowledged, that ME is a serious physical illness, which can lead to complete confinement to bed and the need for care.
- The harmful graduated activation therapy (GET) may no longer be offered.
- The Lightning Trial and similar potentially harmful and non-evidence-based programs may no longer be offered.
- The cognitive behavioral therapy (CBT) is not curative, but - as with any chronic disease - may only be offered as support in the management and mental processing of the disease.
The situation in Switzerland
Unfortunately, little of this paradigm shift has hitherto arrived in Switzerland. ME and CFS are not officially recorded. There is a negative attitude in the healthcare system and the IV classifies the diseases as psychosomatic disorders, contrary to the international research consensus. There are between 16,000 and 24,000 people in this country, whom a dignified life is impossible. Because these people are massively restricted in their quality of life, sometimes around the clock by relatives.11 At the federal level, Council of States Damian Müller demanded 2020 with a postulate (No. 20.3671) a report of research results and information, Who can be contacted for support. The Council of States rejected this postulate on the recommendation of the Federal Council 21. September 2020 from.12 For the affected patient:inside and their relatives only the impression remains, no one feels responsible and they are left to fate. The situation of those affected is devastating. Both medical care and social security are virtually non-existent. In a 2021 by the Swiss Society for ME & CFS survey conducted among patient:within13 reported less than a sixth, to have a family doctor, who is familiar with the disease. 28% have no family doctor or only one, who does not recognize the disease as such. Many have had bad experiences in a medical emergency, because the healthcare professionals do not know or do not recognize the disease. ME is largely unknown to those responsible in the social security funds. As a result, the patient:generally dependent on caring relatives for their livelihood. If IV pensions have been approved, this mostly did not happen for ME, but for a concomitant disease or even for a misdiagnosis. An absurd situation, because the disease, those entitled to a pension, was generally less restrictive than ME. When it comes to coping with everyday life, relatives also have to take on most of the responsibility, because external help is missing. The relatives care for and care for the patient without any help:within, some of whom are too ill, do the personal hygiene yourself, unable to go to the toilet or eat without help. Certain ME patient:inside are too weak, to put a drinking glass to your mouth yourself or to move around in bed.
ME-Patient:inside and their loved ones are not just dealing with a serious illness, medical undersupply and existential problems, but also subject to a social stigma. In most cases, this is not done in front of the patient's immediate surroundings:within halt. Many relationships break up because of it, and often are ME patient:Faced with loneliness inside. Many ME patient:inside lose most of their social environment as a result of the disease, often also close people.’
(Sgme: Swiss Society for Myalgic Encephalomyelitis)