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?
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. https://www.youtube.com/watch?v=J7gTyLSL2DA
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
Welcome to the ME / CFS Switzerland association https://www.mecfs.ch/ google translation of page: https://translate.google.com/translate?hl=en&sl=de&u=http://www.mecfs.ch/&prev=search&pto=aue