Wow, that's 17% of the population! And if some of them talk to others who didn't see it ... Maybe someone should suggest to the managers of Norway's sovereign wealth fund (currently worth $1 trillion for those lucky oil-rich Norweigians) that investment in ME research is going to be the next big thing. They can't do worse than their gamble on Israeli pharmaceuticals: https://www.weforum.org/agenda/2018...massive-oil-fund-made-130-billion-in-one-year I'm just off to set up a plc - can't be that difficult. Must do it before the BPS crowd get the same idea. Hope they're not reading this.
Think its more like a little over 5% of the population watching the documentary, but still quite good numbers. Feedback is good, understanding better. Personally I liked the simple things, like showing the classic illustrations of a battery never charging, and the simple sentence after watching a young patient attending a show at schhol with friends an evening. The sentence: it took X 22 days to “recover” after attending the show. So much is unfortunately fuzzy with this disease, but I think the average watcher can somewhat relate to and imagine the extremely disproportionate costs of provocation and response.
Oh bugger how embarrassing my maths is crap. Don't tell anybody. Especially not anyone involved in the 2/3 - 66.6% debacle. Especially not @Alvin.
Haha. Would be a given in a split-second back in the days.. Must admit it took quite som effort and doubt doing the maths. Still not sure. It would be like 300.000 out of approx 5,5 million. Anyone?
I completely agree. I am not a bit fan of our current government in general, but our prime minister REALLY do care about ME-patients, she actually knows a bit about the disease and is very eager on research in general. Now as we are looking for other incomes than petroleum and have lots of money to invest the time is right to go for research, and medical research could absolutely be a big part of it. Norway has some excellent engineers from the petroleum business, and in my home town (Stavanger, the petroleum capital of Norway) some of them are already using their expertise in medical research. Drilling expertise is used in developing techniques to access and dissolve blood clots, engineers have developed a mattress that shifts positions by itself, to avoid bed sores. "Thanks" to the Trump-administration, I've read there is a brain drain in Silicon Valley and among other bright people in the states. Come to us and help us develop (medical) research further. We have free education, free health care, long maternity and paternity leaves, low crime, long vacations, everyone speaks English, great nature for hiking. In the documentary prof. James Baranuik said "it's like Bergen is becoming a Mecca for the thought leaders in how we approach ME/CFS". That's really something for our politicians to be proud of and help develop further. But it all comes down to funding. The creator of the documentary is now fundraising on Facebook for medical research into ME. His goal is 300 000 NOK (36000 USD/27000 GBP). In just one day he's collected half of it.
I made the mistake of dividing 5,233,000 by 300,000. The result was 1/17, which I mistakenly took to be 17%. As I have recently espoused on percentages and fractions on another thread, I am thoroughly mortified at having made such an elementary mistake.
Great talk (in Swedish) on POTS by Dr Artur Fedorowski, at an event last Wednesday hosted by the Ehler-Danlos Syndrome patient organisation in Lund, Sweden: Here's a written summary (also in Swedish): https://snoflinganblog.wordpress.com/2018/05/25/forelasning-om-pots/ Google Translate, English
Expressen: ME-sjuka Camilla, 52, kämpade in i det sista ("ME sufferer Camilla, 52, fought until the very end") https://www.expressen.se/kvallsposten/me-sjuka-camilla-52-kampade-in-i-det-sista/
Well, I would like to live in Norway, but I don't have much to offer...Beautiful country and I hear people are nice.
The Swedish newspaper Aftonbladet has an article today about a 20% increased allocation to the two ME-clinics in Stockholm. Aftonbladet: Stockholm satser mer pengar på ME-vård This is good news. One of the clinics, Stora Sköndal, recently had to stop receiving new patients because of long waiting lists. Hopefully they can now soon accept new patients again. (bah, and then there was Aftonbladet and google translate not cooperating, and my brain is too fried to find alternative translations sites today. But if others can share a link with English translation of the article, I am sure there are some members who don't read Swedish that would appreciate it)
After the first day he raised the goal to 500k NOK ($61k or €52.4k) as the 300k were already in. So far 405k has been donated. As usual, many who give are PwME, but probably some others as well - a lot of people have wanted to talk to me about the documentary, I think it really hit home for some because of the very young people featured.
Brilliant blog article about the importance of openness and transparency in the conversation about ME, written by an occupational therapist/pwME. In Swedish. Vi kräver att ALLT som kan göras också görs! https://livetsbilderblog.wordpress.com/2018/05/31/vi-kraver-att-allt-som-kan-goras-ocksa-gors/ https://twitter.com/user/status/1002155291687964672
New ME-article from the Swedish newspaper Aftonbladet. About ME patient Claudia, whose welfare support has stopped. Aftonbladet: Claudia har ME/CFS - nu dras hennes sjukpenning in Yandex translate: Claudia has ME/CFS - now her welfare support stops In march, the Insurance agency said that she no longer has the right to sickness benefit. The cashier believes that the 49-year-old is sufficiently healthy to be able to be available to the labour market. This despite the fact that several doctors confirmed that her illness is seriously debilitating. ... The minister of social affairs Annika Strandhäll (S) has acknowledged that the knowledge about ME/CFS is too low in health care and Insurance. The government has given the national Board of health a mission to assess the situation. According to Cecilia Udin, national insurance coordinator at Swedish Social Insurance Agency, this is important work. – We have requested a decision support for ME/CFS from the Board of health. Our hope is that it, together with the review, could lead to assessments becoming more uniform in all stages. Our view is that different doctors have very different views on this disease and how it should be treated.
It's important to remember that the kind of "decision support"/guidelines they are talking about here (försäkringsmedicinskt beslutsstöd, FMB), were originally created in response to the increasing number of people on sick leave in the late 1990s and the beginning of the 2000s. In other words, it's a way of creating better-looking statistics by lowering the numbers and making sure people get back to work as soon as possible. The fact that there currently are no guidelines for ME/CFS means that doctors are free to make decisions based on the individual and how they are affected by the disease -- rather than having to use a cookie-cutter template that is meant to reduce sick leave. The major problem here is of course the same as usual: there is no reliable scientific evidence to base these recommendations on. How many weeks or months does it take for a person with ME to recover or be cured? And if they do an evidence review, what will they find? BPS studies claiming that "validating these people's false illness beliefs is detrimental to their recovery"?
*EDIT* Seems like this is just a Danish translation of the original Norwegian article from forskning.no that videnskab.dk decided to bring. *EDIT* https://videnskab.dk/krop-sundhed/me-forskningen-er-fortsat-praeget-af-usikkerhed-og-uenighed Danish Article on ME/CFS I havn't been this angry in a while Not a lot of energy and trying to write to videnskab.dk so don't have the energy to write something here. Vegard Bruun Bratholm Wyllers being allowed to spread his moronic ideas unchallenged.
It is originally a Norwegian article that now has been translated to Danish. The original article was discussed here. It is such a pity that Scandinavian journalism on ME and research has not gotten further At least the biopsychosocio-side wasn't interviewed alone..
Ah sorry! Worst part is that I have read the original article, but didn't even notice that this was just a translation x(!!! I was super confused as to why they would spend so much time interviewing Norwegian ME/CFS ''experts'' xD Honestly though, after reading the Danish translation this makes the original article come off that much worse. I'll edit my original post
