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

Discussion in 'General ME/CFS news' started by Sly Saint, Dec 15, 2019.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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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?
     
  2. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    693
    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).
     
  3. duncan

    duncan Senior Member (Voting Rights)

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    1,165
    ECT = Primitive, inexcusable brutality.
     
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  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Location:
    Canada
    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.

    https://www.youtube.com/watch?v=J7gTyLSL2DA


     
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  5. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    9,073
    Location:
    Canada
    Auto-translated transcript of the show:

    ---------------------------------------------------------------------------------------------------------

    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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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Location:
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