Article (situation in Switzerland): The disease that nobody knows Dec 2019

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Chronic physical illnesses are often dismissed as mental illnesses in Switzerland. One of these is myalgic encephalomyelitis, which is also popularly known as chronic fatigue syndrome. The disease involves more than what society understands by chronic fatigue.
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In her teenage years, Anna fell ill with Pfeiffer's glandular fever and never fully recovered from it. The symptoms had crept up, she recalls, aside from the cognitive skills. These were already extremely impaired after the high fever: «From this point on, my concentration and memory were severely restricted. In addition, I felt extremely exhausted after the most normal activities. »But instead of being careful, the 16-year-old graduate pushed on.
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Not resting enough is the biggest mistake that can be made in the initial phase of the disease, says Dr. Protazy Rejmer. The medical advisor of the association ME / CFS Switzerland fell ill with ME / CFS himself in young adulthood and decided because of his fate to study human medicine. He has been committed to more research in the field for years.
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While Rejmer is only mildly affected, Anna's disease increasingly developed into a moderately severe stage during puberty. That is typical, explains the doctor: "In contrast to depression, ME / CFS worsens the condition of sick people during physical exertion." An important piece of information that Anna, like many other sufferers, was denied at the time of her illness.
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38-year-old Dania agrees. The mother of two young children developed ME / CFS after an appendix operation in September 2017. After the family doctor cannot help her, Dania is admitted to the psychiatric clinic – ..
In the clinic, her psychiatric drugs are prescribed, she takes part in group and painting therapies, is treated with electroconvulsion.
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«There is no IV pension for ME / CFS in Switzerland. Medical care is also inadequate, because hardly any doctor in Switzerland knows about the disease, »
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full article here
https://www.en24.news/2019/12/the-disease-that-nobody-knows-tsuri-ch-mirsindtsuri.html

do we have any contact/member in Switzerland?
 
Sly Saint said:
...Dania is admitted to the psychiatric clinic –
In the clinic, her psychiatric drugs are prescribed, she takes part in group and painting therapies, is treated with electroconvulsion.
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I just interviewed a woman who was 'treated' with ECT (but not for ME) and she said that ECT neurological side effects can manifest between 2 and 10 years after treatment (iirc).
 
Two days ago, a TV report was broadcast on a Swiss French series called 36.9 degrees, which is described as a "critical look on health and medicine".

The name is bad, "when fatigue becomes chronic", but this is corrected in the first few seconds and overall is a fair account. There were a few slip-ups and it could have used a bit more context and numbers, but it did rather well to present the disease to a general audience. Would have certainly preferred a better title but I guess this is a bit like Australia or the US where this is the only name it is known as and would cause confusion otherwise.

It follows 3 patients, 1 mild, 1 moderate and one straddling moderate-severe. One of them is a MD, developed ME before training, who follows 30-40 patients. The production crew spent a fair amount of time with each of them, about a couple of days, and it shows bits of the daily, hell minutely, struggle that it can be and how from the perspective of patients, the situation is hopeless until something is actually done.

It explains rather well the various impact and generally PEM, though it doesn't describe it all too well but then again very few people understand it at all. There are also interviews with 3 physicians (2 researchers and 1 clinician, IIRC), who give a rather fair account, though painting a rather idyllic scenario that is far from the norm, where within less than a year patients are taken to this specialized facility in Lausanne where they do a full differential diagnostic. There is also a mention by one of the physicians of 1-2 years duration, so the overall impact of the disease was understated a bit.

But it is rather fair overall. It would have helped giving context that there is much worse out there, but it still shows how disabling the disease in a way that most people simply do not understand as a result of the BPS misinformation. The show's description actually begins with "CFS, a name that does not inspire fear. Wrongly so."

It's about 30 minutes and unfortunately ends with the standard trope of CBT/GET being "helpful" for some but not all. No captions unfortunately, just auto-generated. Best I can do is I will auto-translate the auto-generated transcript below.

 
Auto-translated transcript of the show:

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we don't know that fatigue too
extreme may exist
I don't even know how to express it so much
we love out of breath until we die
as is punctured in the first sense of the term
the fridge and I was right brrr I wanted
go get some water i didn't manage to
offer on this year I just
horrible stomach ache hurt
breathe
my head exploded
and needs your mothers but the more we
don't care it's not i'm tired
it's the symptoms also on all these
symptoms that prevents lifted headache
dizziness sometimes it's just due
get a dizziness cup and that
is part after two days of activities
normal in quotes the
third day we are completely broken
to imagine what it means
so let's say we didn't eat any
all day remember what
you don't have enough goal that we did
a lot of sports a marathon and that the
evening we see each other another half
bottle of whiskey and then how
feels the next day fatigue syndrome
chronic
many people ignore the existence of
this disease however it is recognized
by om s
this tiredness has nothing to do with
the one we all know once
per year
events are organized in
the whole world the shoes of those
who no longer have the strength to leave their
four walls are exposed symbol of
million of existence put between
parentheses
in Switzerland more than twenty thousand people
are reached
as much as those who are sick with
AIDS
in the morning it remains one of the if not the
most difficult phase waking me up and
get up at about 3am
[Music]
when to get out of
this just hellish half sleep space
and land on earth and managed to
connect the brain and the pains that
appears without necessarily and me when we
wakes up and then you have to put back in
this machine works the body which is
painful rusty whatever you want
it's very difficult it really shows
a
incredible strength to succeed at
get out of this secular state put yourself in
road to be able to get up and start
a little ground they have a few steps
at 34 years old caroline has been sick for more
of six years it all started at the end of 2012
when the christmas holidays finally arrive
the Vaudois teacher is on
ball
over the weeks it is more and more
no longer exhausted it will no longer return to
job
this disease fluctuates and the state of health
patient and jagged
currently caroline is going through a phase
difficult
the initiates call this descent to
hell a crash the slightest gesture
represents a colossal effort according to
days I adapt what I'm going to do if
for example I can try a shower
so basically I'm not going to
wash teeth i can't cumulate
of them
when i make an effort i pay it
behind in fact if it's an effort
physical all the symptoms are going to be
increased I will have my pains which are
further intensified and I'm going to have to
several days to recover
caroline experienced diagnostic wandering
this nightmare lasted for months
she ended up being taken seriously
by a doctor who gave her a
battery of exams my general practitioner
wanting to show a leaf
it was written fatigue syndrome
Loonois chronicle like that he didn't
seem to be so scary huh and
then actually this list there I had all
symptoms
it was totally months the patients
like caroline are addressed to the center
united health in lausanne for a second
specialist consultation
multiple exams to exclude
countless fatigue-related illnesses
like for example cancer
mononucleosis or depression
five to six heads of clinic are studying
each file
it is a diagnosis by exclusion but
however, this diagnosis and
certain characteristics is there the
characteristic which is really
essential this holy this intolerance
on exertion or the person is exhausted
with normal effort it shouldn't
take place but it's true that in the
blood there is no test or marker
genetics we say oh well here we have
found it to be a syndrome
chronic fatigue no that's not the
case
basically I knew I had that but I
didn't want I just didn't want that
either that and all the answers to my
questions whether they had a
jousting medicine treated no we
we have nothing we don't know
currently researchers do not have the
lesser molecule opposed disease
patients should be content with
medication that relieves symptoms
like painkillers for example a
miracle cure
is this a utopia this is obviously
always difficult to make
long-term predictions
but what i can tell you is
that in any case not looking for it to the end
touching to find a medicine for
chronic fatigue syndrome
current specialist in syndrome
chronic fatigue
ariane gauthier follows the research of
long ago the question arose
is it a cult infection
 
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