https://www.srf.ch/play/tv/reporter/video/mecfs—the-insidious-disease?urn=urn:srf:video:e0b93a13-30eb-48cd-b0e4-178e9abafa57
About a year ago, Swiss television broadcast a documentary about people's loneliness during the lockdown. I found that impressive, but could me the remark (Youtube comment) don't hold back, that there are people, die einen nie endenden Lockdown erleben; People, the heavy (and also moderate) have ME/CFS.
Surprisingly, reporter Helen Arnet immediately made the suggestion to me, to make a film about ME/CFS. Will I be there?? At first I wanted to say yes immediately. But then I had legitimate doubts: I cannot present myself as an ME sufferer on Swiss television, this would not be ideal for the image of the disease.
Haha.
This is almost laughable. Because of course I know, that there are thousands of ME sufferers, the mental none “clean slate” to have, just like me. Be it as a result of martyrdom, that ME entails, be it as a comorbidity or even as a trigger.
Nobody in the ME community wants to know that! I can understand that, because: a physical illness, where women are psychopathologized for eighty years (a few men too), does not tolerate mental involvement.
I'm happy, I didn't take part in the film. I said Mrs. Arnet, that I might join, but not as the main character. And that I would like to read something from my literature. So I directed Mrs. A. to the SGME association and was now surprised by the finished film …
The two main actors are young people, you are severely affected and absolutely authentic.
They show the martyrdom from severe to severe ME, and me …. moderately affected (only 20h bedridden, for this 26 years sick)
couldn't have done that. I almost only showed myself and not the disease ….
(and, that's just a quirk of mine, which I had to think about a lot and also address in my novel, how much people “Believe” and make authenticity dependent on that, what they know etc.)
….BUT: and i have to say that, I would have participated in this documentary: I wouldn't have let it take me, to disclose the impertinence, that a person with this disease is to the environment, if he can't be happy with it or loses his nerve sometime after years!!!!!!
Because, suppressed fact: there are thousands of sufferers, who did not endure this martyrdom with flying colors and silently killed themselves …. out of shame, hopelessness, Despair. And: so as not to be an impertinence for those around you! As I said: they have disappeared invisibly.
—–
The two main characters of the documentary have something, that can be lost by a person who has been affected for a long time or who is less strong: a kind of pure soul! A hope, is peculiar to young people: that someday it will get better! Or there is help!
I think this hope and this confidence is fantastic, in both the literal and figurative sense!
Life is in this hope!
And yet: you look at the film and ask yourself relentlessly: How can you live like that, over years, without losing hope? Without screaming with anger and sadness?! Without spoiling …. mentally ….
Since 1969 classified at the WHO and not a single doctor, who takes sides in such a documentary and speaks for all these sick people in Switzerland ….!? How cowardly is that!?
Waiting, to the international research groups, languishing without financial support …. have finally fully fathomed the biochemical mechanisms of the multisystemic disease!?
You can't come with studies 12 make people!!! Studies cost money!!!!!
…. A specialist from Europe or the USA could have been included in this documentary. And he would have explained, how many scientific facts there are already about this serious metabolic disorder!?
That the university medicine felter must finally see these facts!!!
But that's exactly how it is: we don't have a single advocate for this disease in Switzerland, nobody! While there is at least one research institute in Germany and in Austria Dr. Stingl draws attention to the disease.
—–
The young woman in the film has a dear friend. So she can live.
What will be with the young man portrayed, who has not been able to leave the apartment for four years?
In ten, fifteen years? What will be, when the father can no longer take care of him?
—–
The documentary is good. But I've been able to watch documentaries like this almost every year somewhere for the past eight years!
they are coming, evoke some horror or sympathy in the viewer and disappear again.
Nothing worked for us …. changed for me for eight and twenty-six years respectively!!!!!!
On the contrary: recently my illness has been called “Sensitivity Syndrom”!!!!!!!!! (Mein HA.)
—–
doctors, political proponents of false fatigue guidelines, etc; what do you think, when they see such a film?
You don't look at him, or?
—-
You can hardly do anything worse to a person, than not to believe him. This over years or decades.
Do these doctors and officials have any idea, which makes something like that with a soul permanent?
And what it does to those people's environment?
It's entirely possible, that the relatives, Friends and acquaintances when in doubt
don't believe the people close to you, but the system!!!!! That they are torn!
The person concerned even harbors suspicions, partially or when he is still mildly ill,
against his own complaints!!!! (like the young woman in the film
aptly says.)
———
I would have liked the reporter or the club to say thank you, a little feedback,
that I made television aware of the disease.
But much more, I would have wished for a simple apology from my countless doctors.
And, I have wished for this for many years. —-
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But, if I'm honest: even better and actually I want to – what the fuck nochmal – — have nothing to do with this damn ME thing anymore!
Not as them, who I am! Not as myself! ….
—————————————-
It's good the film was broadcast, as I said.
But he won't change anything, that economic benefit decides,
which diseases are being researched ….
He will not change the basic problem.
Since I tend to simplify and think in black and white, because I became a pessimist, to better with one
to survive in a relatively hopeless situation (to each his own), may i say it:
For me, human greed is the problem ……
Switzerland always has capital for new combat aircraft. And to boast in the gaze,
that this country still has the few richest people in the world!
And these people and their wallets are still growing!
——
You can accuse me of imposing negativity.
I've gone beyond these stupid poles: positive & negative.
There is a loss for me, bordering on poverty:
this is the loss of creativity.
I am confronted with him again and again. (by that I mean my own creativity in particular.
Because what creativity means to others, I can not judge).
—-
(1.4.22)
(I haven't figured it out yet, how to add links here, that can be opened. My webmaster is in demand.)